242 avsnitt • Längd: 40 min • Veckovis: Torsdag
This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney.
Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting.
Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
The podcast The Rare Life is created by Madeline Cheney. The podcast and the artwork on this page are embedded on this page using the public podcast feed (RSS).
When the systems your child depends on are under threat, it doesn’t feel political—it feels personal.
In this episode, Madeline and Alyssa unpack the deep unfairness of having to constantly justify your child’s worth while watching essential supports unravel in real time. They also discuss the fury that bubbles up when people call your fear “political,” the heartbreak of realizing who around you doesn’t care, and the exhaustion of never being allowed to rest.
This isn’t about debates or party lines—it’s about fear, frustration, and the deep grief of feeling unsupported by those in your community.
If you’re feeling angry, bitter, or broken-hearted, this episode is for you.
Links:
Follow @margot_thebrave for more information on the situation at NIH.
Listen to Ep 81: Health Anxiety.
Listen to Ep 185: Medical Parent Trauma.
Hear Alyssa’s other episodes: 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 140: Alyssa’s Story, 125: Travel w/ Disabled Kids
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa at @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There are certain moments that never leave you—the sight of your child turning blue, the smell of hospital-grade hand sanitizer, the feeling of helplessness as doctors take over. Medical trauma doesn’t just happen to our kids. It happens to us too.
In this episode, therapist Rosey Schaefermeyer joins us for a deep dive into how medical trauma shapes parents, how it lingers in our bodies and minds, and why it’s so easy to feel stuck in survival mode. Rosey shares how trauma builds on itself, why some moments become impossible to shake, and what parents can do to move forward while still being present for their children.
If you’ve ever wondered why a single smell or sound can send you spiraling and how you can break this harrowing cycle, this episode is for you.
Links:
Get a copy of Anchored by Deb Dana.
Find a trauma-informed therapist with Amanda Griffith-Atkins' therapist directory.
Listen to Ep 25 on EMDR Therapy with Rosey.
Listen to Ep 138 on how to find a trauma-informed therapist.
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
At 28 weeks pregnant with her third child, Rachel experienced the unimaginable—losing her husband in a sudden tragedy. What followed was a whirlwind of grief, survival mode, and a cross-country move while still carrying her son, Wells. But it wasn’t until after his birth that another challenge emerged: developmental delays, medical concerns, and the beginning of a diagnostic odyssey.
In this episode, Rachel shares her family’s long road to a rare diagnosis, the complicated emotions of realizing your child’s future won’t look like you imagined, and the unique challenges of raising a disabled child as a solo parent. She shares the unique challenges of raising a hyper-social child who struggles with deep friendships and the sibling dynamics that come with disability.
If you’ve ever found yourself grieving what could have been while still trying to embrace what is, Rachel’s story will resonate.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Fill out our contact form to join upcoming discussion groups!
Follow Rachel on Instagram @rachel_horne!
Follow the JdVS Foundation on Instagram @jdvs_foundation!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax.
In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they’ve tried has truly worked.
She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.
And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!
Links:
If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.
Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries.
Listen to Hailey’s husband Derek on 146: The Dad episode.
Get Hailey’s book, What is Epilepsy?
Fill out our contact form to join upcoming discussion groups!
Follow Hailey at @growing_juniper!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The energy? The mental bandwidth?
It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our medicalized life can be game-changing.
In Ep 182 of The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that can come with doing something “just for you,” and how even the smallest hobbies can become a lifeline.
Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
Links:
Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Fill out our contact form to join upcoming discussion groups!
Follow Amanda at @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When Kait Parrish found out she was pregnant with twins, she imagined matching outfits, sibling giggles, and the life she had always dreamed of. Instead, at 24 weeks, she gave birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them.
In this raw and deeply personal episode, Kait shares the heartbreak of losing Avery, the terrifying rollercoaster of Addie’s early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a non-disabled sibling, and the emotions that come with it all.
From NICU trauma to navigating life after loss, Kait’s story is one of resilience, heartbreak, and unexpected love. If you’ve ever felt like your parenting journey didn’t go as planned, you’ll find so much to relate to here.
Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
And a big thank you to MOOG, our sponsor for this episode!
Links:
Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Visit MOOG’s website to see the many ways they support families like ours!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa and Erica at @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
The age old question: Does this life ever get easier? And if so, when?
Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier.
If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give you an anchor point.
And on February 14, we’re launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
Links:
Ask your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Or ask them to donate via Venmo @the_rare_life! https://venmo.com/code?user_id=4224512098830319954&created=1739551472.105737&printed=1
Listen to Ep 170 all about hospitalizations.
Listen to Ep 54 on Erica’s perspective as a disabled adult.
Hear Alyssa’s other episodes: 179: Exhaustion, 171: Financial Strain, 140: Alyssa’s Story,125: Travel w/ Disabled Kids
Read more aboutthe Caregiver Continuum.
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa and Erica at @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast orContact me about sponsoring an episode.
Followthe Facebook page.
Join the Facebook groupParents of Children with Rare Conditions.
Access the transcript on the websitehere.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
The exhaustion that comes with disability parenting isn’t just about sleep deprivation.
It’s everything else too: the mental exhaustion of managing a child’s entire medical life. The weight of being the only one who knows all the details. The grief. The fear. The constant pressure of doing everything right with so little support. And that’s just scratching the surface.
In this episode of The Rare Life, I’m joined by our producer, Alyssa Nutile, to share responses from the community about all the things contributing to our collective exhaustion and why, some days, it does feel like too much for one person to carry.
If you’ve ever wondered how you’ll keep going when you’re just so drained, you are not alone. This episode is for you.
Also, huge thank you to our sponsorFunctional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa at@caffeinated_caregivers!
Follow us on Instagram@the_rare_life!
Donate to the podcast orContact me about sponsoring an episode.
Followthe Facebook page.
Join the Facebook groupParents of Children with Rare Conditions.
Access the transcript on the websitehere.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When Jessica Fein’s daughter, Dalia, was diagnosed with a rare degenerative disease (MIRF syndrome) after a long diagnostic process, she was thrown into a world of medical uncertainty, impossible decisions, and the heartbreaking reality of watching Dalia’s abilities slowly fade.
In this episode, Jessica shares her adoption story with Dalia, the ambiguous grief associated with her diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found beauty in the hardest moments.
If you’ve ever fought to get answers, struggled to balance hope with heartbreak, or felt like you were carrying the weight of it all, this episode will feel deeply familiar.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Jessica’s podcast: I Don’t Know How You Do It.
Read Breath Taking: A Memoir of Family, Dreams, and Broken Genes by Jessica Fein.
Fill out our contact form to join upcoming discussion groups!
Follow Jessica on Instagram @feinjessica!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s time to officially kick off Season 11! This season, we’re diving deep into how this life affects you—the parent. From mental health to medical trauma to grief, and even hobbies, this season is all about how the experience of parenting a medically complex or disabled child shapes our lives too.
We’re also launching our second annual Friends and Family Fundraiser this season, running from 2/14-2/28. This fundraiser allows your friends, extended family, and broader support system to show up for you in a tangible way by supporting The Rare Life. And we are not asking this community of parents to financially support us directly. All you have to do is share! (And we’ve got some exciting incentives for you to get the word out!)
As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you.
This season is packed with tender, honest, and relatable conversations. We’re so grateful to share these moments with you. Let’s dive in! ⠀
Links:
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Building connections can feel impossible when life is already overwhelming. That’s where The Rare Life discussion groups come in.
In this episode, I’m pulling back the curtain on our discussion groups—virtual gatherings that feel more like a book club than anything else.
You’ll hear from three amazing facilitators about the friendships, resources, and support they’ve found through this space.
If you’ve been searching for a place where you can connect with other disability parents who just get it, this is your invitation.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins.
Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
For disability parents, the New Year doesn’t always mean lofty resolutions or big changes. It might mean survival mode, holding boundaries, or simply getting through the day.
In this episode, I’m sharing your thoughts on New Year’s resolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to tentative hope, this is a conversation about giving yourself grace.
If the traditional “new year, new me” doesn’t fit your life, this one’s for you.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins.
Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
What if the hardest part of your year was also the one that shaped you the most?
In this special mini-episode, I read submissions from the community that capture the resilience, heartache, and triumphs we’ve all experienced this year (including a few entries that count as both highs AND lows.)
From the heartbreaking realities of denied services and exhausting diagnoses to the incredible wins of first smiles and newfound independence, it’s a powerful reminder that no matter how hard it gets, we’re never alone.
Tune in for a dose of solidarity, and let’s close out 2024 together.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on navigating the holidays with Amanda Griffith-Atkins.
Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow.
In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who love us to get a glimpse into these often unseen parts of our lives.
If you’ve ever felt like you’re carrying the weight of it all, alone, this one’s for you.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins.
Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it.
In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the mark and the joy of gifts that actually make your kid light up (think Elmo toys and shiny balloons).
If the holidays bring up all the complicated feels, this one’s for you. ⠀⠀⠀⠀⠀⠀
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins.
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship.
So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have probably never considered before this life of disability parenting.
And in this episode, we’re sharing them all, from the way moments with our disabled children feel so much more precious to just having the best parking. If you need a little feel-good episode to brighten your day, don’t miss this one!
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Links:
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Season 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet!
So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 10. And we’re sharing our most listened to episodes from this season as well.
Finally, we’re giving you a look into what Season 11 has in store, and the mini episodes that we’re sharing in between seasons again.
Thank you so much for being here and supporting The Rare Life for 10 seasons now! We would not be here without you ❤️
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Links:
Join The Rare Life newsletter and never miss an update!
Listen to The Rare Life Holiday episodes: Inpatient During the Holidays, Isolating at Home, & Why the Holidays Suck Sometimes.
Get Jillian Arnold’s children’s book, Soaring Together.
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!)
And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you’ve ever wanted to get a glimpse of how The Rare Life works behind the scenes, this episode is for you!
And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win a book bundle, sign up for Sticker Club! Today is the last day!
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Links:
Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Watching our children go through pain in a medical setting, even when we know it’s what is best for them, can be difficult for parents to navigate. We want to help, but sometimes it can be hard to know what is actually easing instead of compounding the trauma.
Fortunately, there’s a specialty that focuses on this exact problem: enter the Child Life specialists. They’re here to help families provide as much comfort and as little trauma as possible for children in medical settings, including helping families advocate for comfort accommodations.
In this episode, Katie Taylor of Child Life on Call is here to explain what exactly a child life specialist is, how they can assist families, and most importantly, the variety of ways that parents can help minimize the medical trauma that their children experience.
If your child regularly interacts with the medical system, this is one episode you can’t miss.
Links:
Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!)
Visit the ABLEnow website to learn how to open an account for your child!
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Get the SupportSpot App,where you can find the comfort positions mentioned in this app (plus a ton of other resources!)
Download the Six Comfort Positions guide.
Listen to Katie’s podcast Child Life on Call!
Listen to Katie’s previous episode: Ep 47 on Siblings
Follow Katie on Instagram @childlifeoncall!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Summary:
On this special mini episode, we’re hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The Rare Life has meant to her, how she helped plan this year’s Sticker Club as part of our fundraising committee, and how she’s helping us grow and reach new communities via a Spanish translation of the podcast!
And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, sign up for Sticker Club!
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Links:
Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way.
Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages.
And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm for both parents and their medically complex and disabled children.
In this episode, I’m joined by Alyssa Nutile share thoughts from Erica Stearns, Hailey Adkisson, and Suzi Boubion, as well as our own commentary, on why you’re allowed to share your story on your terms, the benefits of sharing, and the harm that comes with being silenced and isolated.
We hope this empowering and nuanced episode will give you the confidence to share your experiences (if you so choose) and maybe make you think twice about the way you engage with your community on social media.
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Links:
Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!)
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa & Erica on Instagram at @caffeinated_caregivers!
Follow Hailey on Instagram @growing_juniper!
Follow Suzi on Instagram @oliversodyssey1!
Follow us on Instagram @the_rare_life!
Erica’s Episodes: 54: Disabled Adult Perspective
Hailey’s Episodes: 117: Traumaversaries
Sticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins.
In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!)
If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, don’t miss this episode!
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Links:
Join the TRL Sticker Club to support the podcast for the coming season!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!)
In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for Sticker Club members sponsored by Amanda Griffith-Atkins.
If you want to learn more about how to support The Rare Life AND get some awesome stickers as a thank you, don’t miss this episode!
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Links:
Join the sticker club: https://therarelife.org/stickerclub
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”
This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.)
But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter.
This episode is equal parts relatable and uplifting. You can’t miss it!
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Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Nikole @martinfamilyshenanigans!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.
In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress.
This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in!
Links:
Visit the ABLEnow website to learn how to open an account for your child!
Visit SupportNow to start a registry and share with your community.
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow Amanda on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Listen to previous episodes with Alyssa:
Ep 170 on Hospitalizations
Ep 140 on Alyssa’s Story
Ep 125 on Traveling with Disabled Children
& on our recent season opener and finale episodes!
Listen to previous episodes with Amanda:
Ep 159 on Sharing the Mental Load
Ep 156 on Getting a Divorce
Ep 153 on Hurtful Things Loved Ones Say
Ep 147 on Sex and Disability Parenting
Ep 142 on If My Disabled Child Outlives Me
Ep 135 on Career and Family Roles
Ep 132 on Self-Care
Ep 131 on Chronic Stress
Ep 130 on Anticipatory Grief
Ep 99 on Family Planning
& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful.
In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and sleep, the triggers that are all over the hospital, the difficulties that continue as we come home, and so much more.
Plus, we cover those existential questions that come up during hospital stays... like if this might be the one we don’t all come home from, and how those around us can help out during a hospital stay.
If your child has ever had a hospital stay, this episode is going to be so relatable.
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Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Get our packing list here!
Listen to our episode about when your child is inpatient during events and holidays.
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow Larisa on Instagram @sarmabothma!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals.
This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.
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In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves abruptly living a life of pharmacies, hospital visits, and medical procedures, while navigating the harsh divide between those two worlds and reevaluating some of their long-held beliefs around medicine.
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We also cover what finding community looks like for them now, how they are each working through their trust issues with the medical system, and how they’ve found strength as advocates for their children.
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This is one episode you cannot miss!
Links:
Visit the Functional Formularies website to learn how you can get real food blends for your tube fed child!
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Suzi on Instagram @oliversodyssey1!
Follow Julianna on Instagram @howlinghive!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them.
And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver.
But even though the big plans for their family had to be adjusted, Stephanie doesn’t spend her time grieving the “what ifs.” In this episode, she shares how she’s accepted the reality that she’s been given, how her family has navigated medical complexity, and how at the end of the day, she was able to embrace her ballroom dreams after all.
This episode is equal parts raw, honest, and uplifting. Don’t miss it!
Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Stephanie on Instagram @truthandbeautyremain!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward.
So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning?
And in today’s episode, I’m sitting down with Chandra Bloomfield to share those answers. We sift through all the wisdom, encouragement, and validation from seasoned parents as they share their heart with anyone coming after. And to be honest, there’s lot of tidbits in here that are relevant for more experienced parents too.
This episode is so tender and meaningful, and there is something here for everyone.
Links:
Set up an AbleNow account for your child today!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Episodes Mentioned:
Books/poems:
Visit Supportnow to set up your support registry!
Manage your child’s medical recordswith Hibi!
Get a medical ID bracelet through MyID!
Get our favorite organizational cart from Ikea.
Follow Accessible Adventures on Instagram!
Follow Chandra on Instagram @miraculouslycomplexmaddie!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is?
These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities.
In this episode of The Rare Life, we’re digging into how we long to know our nonspeaking kid’s inner thoughts, how their challenges to communicate affect their medical autonomy, and why, at the end of the day, so many of us would give anything for them to be able to tell us exactly what they do –and don’t– want.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Listen to Ep 124: Suzi’s Story.
Follow Suzi on Instagram @oliversodyssey1!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework?
Or remind them just how many other therapy appointments you have scheduled this week.
Or maybe just explain to them that... you want to be mom, not play the role of therapist today.
In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We cover all kinds of topics, but at the end of the day, I think we mostly just want to remind therapists that our disabled and medically complex kids are children too, and whatever therapy activities they are expected to do should account for that.
This episode was so cathartic to record with Alex, and I think every parent who has ever had a child in therapy is going be nodding their head the whole time.
Also, huge thank you to our sponsor Permobil for their wide array of mobility devices and their support of this community!
Links:
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Visit the Permobil website to learn more about their mobility products!
Listen to Ep 126 on when to scale back therapies.
Listen to Ep 4 on how we are NOT our child’s therapist.
Connect with Alex on Instagram @al.farha_!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella.
In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same disease, and how the disease has impacted each child in unique ways.
Jillian also shares the way her own mindset has changed, including the way she cherishes every moment she does get to spend with her children.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 157: Friendships with People Who Don’t Have Disabled Children with Jillian Arnold.
Listen to Madeline’s episode on Confessions of a Rare Disease Mama.
Follow Jillian on Instagram @confessionsofararediseasemama!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the end of the season.
But, before we dive into our sneak peeks at the end of the episode, we’ve got some exciting updates for you! We’re launching a newsletter that you should join so you never miss an episode, update, or Sticker Club news! (Yes, Sticker Club is coming back this fall!)
We’re also in search of one last board member for The Rare Life! Check out the application and fill it out if you think you’d be a good fit!
Thank you so much for being here and supporting The Rare Life for 10 seasons! We are so excited for this upcoming set of episodes, and we can’t wait to share them with you.
Links:
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore.
In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that she’s found to be most difficult, what she still grieves, and the surprising bright spots she’s found despite the painful changes.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 129: Maddison’s Story.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled.
In this episode, I’m sharing those decisions, how we made them, and how they’ll impact our future. Plus, I’m sharing a positive and heart-warming update on how my children have grown their sibling relationship. This episode is so tender, and I’m so honored to share it with you.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 22: It’s All My Fault.
Listen to Ep 40: Wendy + The Sibling Experience.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now?
In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her daughters. Seeing how far Tiffany’s family has come in two years is so heart-warming.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 101: Tiffany’s Story and Ep 102: Becoming a Single Medical Mama
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community.
In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways.
In this catch-up episode, Kari shares with us what it’s been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in some of her darkest moments. She also shares how full her life is now, despite the despair she’s waded through. This episode is so real and raw, and I’m so honored to share it with you.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 10: The Story of Sloan and Ep 11: Embracing Your Medical Community with Kari.
Listen to Ep 123: “Special Needs” with Kari Harbath and Hannah Setzer.
Listen to Ep 151: Fostering Friendships with Other Disability Parents with Kari and Kate.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family.
I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower stakes facts. I’m so grateful for this opportunity to be vulnerable with all of you, and I am so excited to share this episode.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 127 on traveling with our disabled children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere?
In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down.
In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on their family, and how they’ve all been trying to recover in the past year.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 69: Vanessa’s Story and Ep 70: Accessibility and Ableism.
Follow Vanessa on Instagram @vanessamcleod_!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Birthdays, as we understand them societally, are a time for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation to reminders of difficult hospital stays to a resurgence of anticipatory grief.
In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to our episode on being inpatient during the holidays.
Listen to our episode on isolating during holiday events.
Listen to our episode on navigating the holidays with medically complex kids.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!
In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 127 on traveling with our disabled children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!
In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 127 on traveling with our disabled children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then.
Today, I’m sharing thoughts from this community on what they wish they could go back and say to that earlier version of themselves who was just beginning on their medically complex journey.
I’m so excited to kick off our summer minis with this heart-warming episode.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Read the original “What We Wish We Could Go Back and Tell Ourselves” blog post.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We’re finally rounding out Season 9, and what a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser.
In this episode, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 9. We’re also sharing the most popular episodes of the season, just for some comparison (it’s not always the ones you might expect!)
Finally, we’re giving you a glimpse into Season 10 and the all-new summer format we’re trying out, as we publish some lighter mini-episodes in the off season this summer.
Thank you so much for being here and supporting The Rare Life for 9 seasons now! We would not be here without you. Let’s dive in!
Links:
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities.
In this episode, Brianna, a mom of disabled son who went on to have another nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that came up for them after having a nondisabled child after their disabled child.
And we end the episode by reiterating the honor and privilege it is to be able to raise our nondisabled and disabled children alongside each other, while still the conflicting emotions that come up for us.
This episode is so poignant and full of so many thoughtful reflections. Don’t miss it!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Listen to Brianna’s story in Ep 105 and Ep 106.
Listen to Ep 99 on Family Planning.
Follow Brianna on Instagram @brianna.alcox!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!”
While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndrome.
She shares what her family grieves the most (and it’s a little surprising), how her disabled and non-disabled child interact and grow together, and what it’s been like for their family as she continued her career and her husband stayed home as a full-time caregiver for their children.
This episode has ALL the feels. Let’s dive in!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow Ashley on Instagram @ashleypaigesmith!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)
In this episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull back the curtain on what it was like for them to find a better way to share the mental load that comes with parenting their medically complex child.
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They share the ways they improved their communication, helped each other take equal responsibility and ownership of medical decisions, and built trust that they could each handle situations that would spring up suddenly. Amanda also offers some actionable tips for other families with medically complex children.
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If you’ve been trying and struggling to find a balance that works for your family, this is an episode you can’t miss.
Links:
Get the book “Fair Play” by Eve Rodsky.
Listen to Ep 81 with Amanda on health anxiety.
Follow Amanda on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought.
But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them.
In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering that her son Rudy has Lama2 Muscular Dystrophy, a disease that is progressive and life-limiting.
Serena walks us through the emotional rollercoaster of her son’s first few months, as well as the conflicting feelings that have come up for her in the way that she both embraces her son’s disability and grieves the pain of knowing his disease will likely take his life.
This episode is SO REAL and raw. It’s one you can’t miss!
Links:
Get a copy of “The Power of Now” by Eckhart Tolle.
Get a copy of “Demystifying disability” by Emily Ladau.
Get a copy of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman.
Listen to Ep 97: Melissa’s Story.
Listen to Ep 77: To those who cannot say I wouldn’t have them any other way.
Visit Serena’s website, Play Spark.
Follow Serena on Instagram @play_spark!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.
In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B).
We dig into all the aspects of befriending and maintaining friendships with parents who don’t have disabled children. We cover the logistical difficulties, the triggers that come up for us, the beautiful parts, and how to stay empathetic to those who are experiencing the world so differently from us.
This is a gem of an episode, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.
Links:
Visit MOOG’s website to learn about all the resources they’ve created to support your tube-fed child (and you!)
Listen to Ep 151: Befriending Other Disability Parents.
Listen to Ep 95: Parable of the Pain Scale.
Listen to Jillian’s podcast Confessions of a Rare Disease Mama.
Visit Jillian’s website to raise funds to cure her children’s rare disease ASMD (a.k.a. Niemann Pick Disease Type A/B).
Follow Jillian on Instagram @confessionsofararediseasemama!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Making the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships.
So how do you know if divorce is an option, and where do you start if you’re exploring that possibility?
In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce between parents of medically complex kids and read experiences shared from the community of other women who have already separated or divorced their partners. We talk through fears, hesitations, and some options that you might have if you feel like divorce is in your future.
Whether or not you’re considering separation or divorce, we hope you leave this episode feeling capable and empowered!
And a big thank you to our sponsor Hibi for making this episode possible! Hibi is an app that helps you organize, manage, and share your child’s medical information. Check them out here!
Links:
Visit Hibi’s website to download the app!
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Find a therapist who understands your life as the parent of a disabled child via Amanda’s therapist directory!
Follow Amanda on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
If you’d like to reach out to any of the women who contributed to this podcast, you can find them here:
Abigail @gail.putmannn (its hard, there will be tears and a lot of fear but its so worth it. ace needs his dad)
Alex @_alexishome (confide in someone you can trust and do whatever you can to be able to say you tried it all no regret)
Susan @susiev76 (not in episode but welcomes messages)
Amber @ambysaslytherin (not in episode but welcomes messages)
@Johanna_holtz (cheating for 5 years, healing in heartbroken kind of way)
Sandra @_sandraviramontes_ (during covid totally stopped seeing him and now is super hands off, sometimes it works for parents to go half and half on expenses)
Mckenzie @Kenzie.and.jett (wasn’t much fight for our son. NICU for 350 days and brought him home)
Barby @Barslol88 (heaviness in my life, imagine if there were no children. would you still be there?)
Maddison ward @maddisonjward (last one, mic drop that I said I was supposed to read first, you may feel cemented together but its really just Velcro)
Andie @We.are.takingcare (let go of control and discuss everything and get it in writing)
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When her son Jeremiah was first born, Aneesa had no medical training or experience. But as it became clear that something was out of the ordinary with Jeremiah’s health, she did what so many of us do when our kids need support: she started advocating and asking questions. Eventually through her research and advocacy, her son was diagnosed with a rare life-limiting mitochondrial disease, TK2D.
In this episode of The Rare Life, Aneesa shares the new skills she had to learn as she was thrust into the medical world, the grim prognosis her family received about Jeremiah, and the bright spots that keep them going. Aneesa also shares why she’s so passionate about documenting Jeremiah’s life and how she’s raising her other three boys in addition to her medically-complex son.
This is a sweet, tender episode you won’t want to miss!
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Follow Aneesa and Jeremiah on Instagram @jeremiahgracentk2dwarrior!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
As heart-breaking as it is, if you’ve been in the rare disease community for long enough, you probably know someone, maybe even someone close to you, who has lost a child. And because that potential reality looms large for so many of us, this loss can affect us as well.
In this episode, Rose Watson, whose daughter Lavender has Trisomy 18, joins me to discuss her experience of maintaining a relationship with a friend who lost a child and how that experience impacted her and her friend individually.
We also share thoughts from parents who have lost children on how they would like to be supported by their community (spoiler alert: don’t forget about their child or act like their child never existed), and finally we discuss the way deaths in the community reach far beyond just the families of these children.
This is a tender episode you cannot miss, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.
Links:
Grab your copy of Moog’s Caregiver Feeding Pump Guide to keep on hand for nurses, family, or maybe even yourself!
Listen to our episodes on child loss and grief, Ep 130 on anticipatory grief, Ep 134 on Child Loss 101, and Ep 137 on life after child loss.
Follow Rose on Instagram @little.miss.seamstress!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.
In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth repairing.
Because while hurtful words from our loved ones are often grounded in their own unresolved baggage... sometimes, we discover someone's true character, and it can be a relationship ender. This is one episode you won’t want to miss.
And a big thank you to our sponsor SupportNow.orgfor making this episode possible! Check out their website to get the exact support you need from you community!
Links:
Check out SupportNow.org to get the help you need during tough times!
Listen to Ep 94 on how our friends and family can support us.
Listen to Ep 148 on the family & friend’s perspective.
Listen to Ep 101 & Ep 102 to hear Tiffany’s story.
Follow Amanda @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings.
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In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating guilt, fear, and her new normal after discovering that her son Payton had a stroke in utero. Stephanie speaks to the journey so many of us have been on and are still on, as we attempt to process the medical trauma we’ve endured with our children, while never really getting a break from it.
This episode is so real and honest. You won’t want to miss it.
And a big thank you to our sponsor Hibi for making this episode possible! Hibi is an app that helps you organize, manage, and share your child’s medical information. Check them out here!
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Links:
Visit Hibi’s website to download the app!
Listen to Ep 77: To Those Who Cannot Say You’d Have Them Any Other Way.
Follow Stephanie on Instagram @steph_stanley12!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends?
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In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how to create REAL, connective friendships with other parents of disabled kids. We chat about how to go about creating these fulfilling friendships, how to take your current friendships to the next level, AND how to figure out if they are someone you *should* pursue friendship with.
Plus, we talk about how sometimes you can make these friendships on the internet and how some of your best friends can be people you’ve never even met IRL.
Is there a place for friendships with people who *don’t* have disabled kids too? Absolutely. But there’s also a need for friendships with people who truly get your life, and that’s often the other parents who are living this medical life with us.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Listen to Kari’s previous episodes on The Rare Life: Ep 123 on using the term “special needs,” Ep 10 on Sloan’s story, and Ep 11 on embracing your medical tribe.
Follow Kari on Instagram @kariharbath!
Follow Kate on Instagram @klovestone!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We talk all the time about our disabled children in this space... But what about their non-disabled siblings?
In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!)
Megan Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these tender thoughts from some of the other kiddos in our lives.
This episode is so raw, so heart-wrenching, and so sweet. You can’t miss it.
Also, it's the last day of our Family and Friends fundraiser! Don’t forget to promote your own fundraisers one more time (or start one just for today and see how much you can raise!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Listen to Ep 142: What If My Child Outlives Me?
Listen to Ep 40: Wendy’s Experience.
Listen to Ep 47: Siblings with Katie Taylor.
Listen to Ep 50: Katherine’s Sibling Experience.
Listen to Ep 99: Family Planning.
Check out @ourrealrarelife on Instagram!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal!
If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish?
Get more info at https://therarelife.org/fundraiser.
Thank you so much, friends!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.
This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today.
This is one story episode you cannot miss, and a big shout out to our sponsor Functional Formularies who made this episode possible!
Links:
Visit the Functional Formularies website and get assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow Annie on Instagram @dranniekuo!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share!
If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier!
Get more info at https://therarelife.org/fundraiser.
Thank you so much, friends!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.
So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.
Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Donate to the fundraiser here.
Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.
Listen to Ep 146: The Dad Perspective.
Listen to Ep 104: How to Support the Parents of Disabled Children.
Read Show Up and Bring Coffee by Megan Amrich.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Access the transcript on the website here.
If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.
The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.
Amanda Griffith-Atkins is once again here to help us sort through the conflicting feelings and causes behind these sex struggles, and she also shares several tips for reclaiming your sex life after disability parenting. This spicy episode is one that soooo many of us can relate to. Don’t miss it!
Links:
Visit Esther Perel’s website.
Learn more about sensate focus here.
Listen to Ep 99 on Family Planning.
Listen to Ep 131 on Chronic Stress.
Listen to Ep 138 on Therapy 101.
Follow Amanda on Instagram @amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.
So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness, and the ways that they and their partners each coped differently in the wake of their children’s diagnoses.
These dads are so vulnerable and honest with us, and this episode is an absolute must-listen for anyone with a rare disease dad in their life!
Links:
Learn more about our upcoming The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Listen to Ep 97 of The Rare Life on radical acceptance.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting diagnosis of childhood dementia, and Ashley’s family was turned completely upside down.
In this raw and real episode of The Rare Life, Ashley shares what it was like to receive her daughter’s diagnosis, the ways this revelation altered her family, and how she’s found new and fulfilling relationships in her life since then. And while Ashley’s found a new way to look at life, she also shares openly and honestly about her grief and how she’s navigated through her complicated feelings.
This episode is so good and so tender. You don’t want to miss it. And a big thank you to MOOG, our sponsor for this episode!
Links:
Visit MOOG’s website to see the many ways they support families like ours!
Listen to Ep 130: Anticipatory Grief.
Listen to Ep 19: The Story of Claire.
Listen to Ep 51: Isolation vs. Connection.
Follow Ashley on Instagram @savingsadierae!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy!
Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first major fundraiser, and if it goes well, we could raise funds to keep running this podcast and supporting and uplifting you for the entire next year! And the best part is we’re not asking for a single cent from you, our listeners. Instead, we’re empowering you to tell your own story and offer an opportunity for those close to you to support you by supporting us. It’s a win-win!
As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you.
Thank you so much for being here and supporting The Rare Life for 9 seasons now! We’re so excited for this slate of episodes. Let’s dive in!
Links:
Follow Alyssa on Instagram @alyssanewt!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether.
Whichever way your family chooses to navigate these difficult circumstances is totally valid, and in this episode, Amanda and I share experiences from listeners on how they make it through these moments. We cover feedback from how awful it feels to be inpatient during big events to practical tips to celebrate when you’re in the hospital to encouragement on handling these tough situations in whatever way is easiest and safest for you and your family.
A big, big thank you to all our listeners who sent in tips, clips, and feelings to share with everyone. We used all of your feedback to create this episode, and we are so grateful!
Links:
Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 109: Isolating to Avoid Illness, Ep 108: Why the Holidays Suck, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety.
Visit Icing Smiles for custom cakes when in the hospital.
Visit the Confetti Foundation for birthday boxes for hospitalized children.
Visit Little Wishes, a foundation that brings special moments to children who are inpatient.
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.
In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events.
We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible.
Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible!
Links:
Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety.
Get a copy of Brené Brown’s book “The Gifts of Imperfection.”
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.
And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.
In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.
Links:
Join the Sticker Club and help us produce Season 9 coming in January!
Listen to Ep 20: Anticipatory Grief with Katie Peterson.
Check out Ep 104: How to Support Parents of Disabled Children.
Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.
Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.
Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.
Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa!
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We’re closing out Season 8, and this time I have Alyssa Nutile with me to celebrate the end of another successful season. The Rare Life went through some major changes this past year (if you remember from the Season 8 Kickoff – we're a nonprofit now!) And that meant we spent a ton of time working behind the scenes on some really exciting projects to keep us going for years to come.
We dive into all those details alongside our usual recap of episode clips and insights from three listeners from around the world on their favorite episodes of the season (and why they love The Rare Life so much!) We also review the most popular episodes of this season, and some of them were a little surprising! And finally, as always, we share a few glimpses into Season 9, which we can’t wait to share with you in January.
This episode was such a fun conversation and great way to round out the end of the year. Thanks for another amazing season, friends. See you in the new year!
Links:
Join the TRL Sticker Club to support the podcast for the coming season!
Follow Alyssa on Instagram @alyssanewt!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
What happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone?
In this episode, Amanda Griffith-Atkins and I tackle this tough reality. We share notes from this community from all the feelings that come up around leaving our child alone in this world to the many questions we have about planning for their care once we’re gone. We don’t have all the answers, but we do try to leave you with a few hopeful thoughts by the end of this episode. And if nothing else, you can know that you are not alone in your fears and uncertainty.
Links:
Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.
Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.
Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.
Use my mejo to have a record of all of our child’s medical records and documents in one place.
Use this free Medical Summary Sheet to give other caregivers a quick overview of your child’s health updates.
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways.
Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never really existed at all.
This episode has something for absolutely everyone, no matter your religious or spiritual background, and I’m so proud of how open and respectful each of these women were as they shared their stories. This is one episode you can’t miss!
Links:
Join The TRL Sticker Club!
Watch our brand-new trailer!
Listen to Episode 83 Part 1 & Episode 83 Part 2 to hear An Evolution in Faith with Kimberly Arnold.
Follow Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis on Instagram!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There’s this moment in every parent of a rare or medically complex kid’s life, where you suddenly realize that the medical team you’re working with doesn’t know everything and might not know how to make the best medical decision for your child. It’s terrifying... but it also feels a little bit like a rite of passage by now, and you can only hope that the way you find this out isn’t through pain and trauma for your child.
In Alyssa’s case, her daughter and her family weren’t so lucky. In this episode, Alyssa Nutile, mom (and also producer for this podcast!), shares the traumatic story of Gemma’s first few weeks of life, from a misdiagnosis, multiple unnecessary brain surgeries, and a lot of doctor conflict. This lost time and unneeded pain cuts especially deep, considering her daughter has a life-limiting prognosis.
Alyssa also shares how, despite everything, she’s found a way to work with her daughter’s medical team, albeit much more cautiously. And, at the end, she tells her side of the story for how she started working for Madeline and The Rare Life!
Finally, a big thanks to our sponsor for this episode, Functional Formularies!
Links:
Visit the Functional Formularies website for more tube-fed formula options!
Listen to Ep 19: The Story of Claire for another perspective on life-limiting diagnoses.
Listen to Ep 125: Traveling with Disabled Kids w/Alyssa Nutile.
Listen to Alyssa’s podcast Caffeinated Caregivers.
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
As necessary, important, and life-changing as in-home nursing can be, there’s nothing simple about it. While there are a ton of benefits, there are some really tough parts too. It’s an added layer of administration to deal with, extra personalities in your home to handle, more routines to train, and can come with a lack of personal space. And acknowledging those downsides can feel tricky too, when many families don’t have access to nursing at all.
In Ep 139 of the Rare Life, I sit down with Brooke Teremi, Caitlin Castro, and Nicole Dennis, all of whom have or had in-home nursing care, to discuss many of the harder parts of in-home nursing, and why so many of these issues are systemic instead of individual problems.
If you have in-home nursing and feel like you need a little vent sesh, this is the episode for you.
Links:
If you’re just getting started with in-home nursing, read our blog post: 13 Rights You Have As a Parent When You Have In-Home Nursing.
See if and how you qualify for in-home nursing in your state by checking the state-by-state guide at Kid’s Waivers.
Follow Brooke on Instagram @brooketeremi!
Follow Nicole on Instagram @nicolebdennis!
Follow Caitlin on Instagram @seedycastro!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
If you’ve been around in the medically complex world for a minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?”
Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve endured comparatively.
In Ep 138 of The Rare Life podcast, Liz breaks down the different types of therapy parents and caregivers of medically complex children can benefit from and also how to access those therapies, including acknowledging the many barriers and providing workarounds for those of us who want therapy, but don’t know how to make it fit in our lives. If you’ve been curious about therapy but aren’t sure where to start, this is the episode you need.
Also, a big thanks to our sponsors for this episode: The Nettle Families in honor of The Steitz Family, who lost their son Logan during pregnancy to a rare genetic syndrome CDPX1
Links:
Check out our affiliate BetterHelp for online licensed therapy.
See Amanda Griffith Atkins Directory of therapists who have experience working with parents like us!
Check out this list of Cognitive Processing Therapy (CPT) providers.
Here's a directory of EMDR therapists!
Check out the Postpartum Support International "Mental Health Support for Special Needs and Medically Fragile Parenting" group.
Check out Give An Hour’s Rare Caregiver Peer support groups.
You can also find therapists on PsychologyToday.com.
Learn more about ACT therapy.
Listen to Ep 25: EMDR therapy.
Read Special by Melanie Dimmitt for her experience with therapy.
Follow Liz on Instagram @parent.caregiver.therapy!—her Instagram account
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Not all of us have or will experience the loss of a child, but we ALL have to navigate some type of grief and loss in our lives.
I know this sounds heavy, but in today’s episode grief expert Cole Imperi and grieving mother Leah Deason and I have a frank but honestly kind of soothing conversation about the way grief and loss shape our lives, and how we can move through traumatic moments by understanding and embracing our grief.
Even if you don’t feel like you’ve experienced a traumatic loss yet, I think you’ll find something in this conversation for you, because grief is universal, but it doesn’t have to be scary.E Stephens families. in 2021, they lost their sweet grandson Logan en utero to a rare genetic syndrome. This episode is lovingly dedicated to Logan Reid Steitz and to his dear parents Brittany and Matt. Their grief of losing Logan will forever keep him in their hearts.
Links:
Listen to our other episodes on child loss, 134: Child Loss 101 and 130: Anticipatory Grief.
Visit Cole’s website to read her blog and stay up-to-date with her book launches!
Follow Cole on Instagram @imperi.
Follow Leah on Instagram @becauseofozzie.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Having to rely on a medical device for your child’s survival is equal parts frustrating and terrifying. It’s not that we aren’t grateful that the technologies exist to keep our children healthy... but medical devices aren’t fool-proof, and when things go awry, it’s traumatic for everyone involved.
In today’s episode, Bethany Beazley shares her experience of receiving her son’s diagnosis and how her family’s life changed in the blink of an eye when her son William was given a tracheotomy shortly after his birth.
While William’s trache helped him to breath well most of the time, he had more than one terrifying incident when his trache didn’t function as planned. Bethany explains, in heartfelt detail, the emotional fallout from those moments, and how her perspective of disability has changed through her experience. You won’t want to miss it.
A big thanks to the sponsor for this episode, Functional Formularies!
Links:
Visit today’s sponsor Functional Formularies your child’s special dietary needs!
Grab a copy of Bethany’s book “William Tries Again.”
Follow Bethany on Instagram @joyfulblondie
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion eetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Whether you're trying to manage a career and care for a medically complex child, or you've had to suspend your career for the sake of your family, none of us can escape the impact of this rare and medically complex life.
In Ep 135 of The Rare Life, Amanda Griffith-Atkins and I share responses from listeners about the ways their careers have been impacted by having medically complex children, and all of the feelings that come up for us around that. It’s certainly not as simple as “Well, I got to keep working, and that’s great,” or “I had to quit, and I’m sad.” There are serious emotional and mental ramifications to both, from resentment to grief to gratitude and everything in between.
This episode isn’t so much about career advice as it is to offer you some solidarity and a little virtual hug, as we all try to untangle the tricky emotions around the way our children and careers have intersected.
Links:
Listen to all of my previous episodes with Amanda: Ep 132: When Self-Care Gives Us the Swears, Ep 131: Chronic Stress, Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.
Follow Amanda Griffith-Atkins on Instagram amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Losing a child isn’t something any of us want to think about... However for some of us, we know that we don’t have the luxury of putting off planning the logistics around the end of our child’s life. But where do you even start?
In today’s episode, bereaved mother Leah Deason, pediatric hospice nurse Gina Thuene, and Tiffany Goodchild, a mother who has dealt with hospice care, share their experiences with us to offer a guide for parents who may find themselves preparing for the loss of their child. We talk about the hospice system, decisions that you can make ahead of time to make the end of your child’s life smoother and more peaceful, and what the process of losing a child can look like.
TW: This episode will discuss child loss and the logistics of planning for such an event in gentle but frank terms. If this topic is triggering for you, consider saving it to come back to or listening in smaller segments to give you time to digest this heavy material.
Links:
Listen to Ep 130 on Anticipatory Grief.
Visit the website for Now I Lay Me Down to Sleep (end of life photography).
Look at @adventuresofamelieandbros stories for information on her diamond ring made from ashes of daughter.
Check out Leah’s hospice memory making Amazon list.
Follow Leah on Instagram @becauseofozzie!
Follow Tiffany on Instagram @lifewithkourageouskarter!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
If you love this podcast, please leave us a rating or review in your favorite podcast app!
And finally, here is Leah’s list of books that helped her through the child loss process:
Holding On to Hope: A Pathway through Suffering to the Heart of God
Hearing Jesus Speak into Your Sorrow
It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand
Finding Meaning: The Sixth Stage of Grief
You Are the Mother of All Mothers - A Message of Hope for the Grieving Heart
Born to Shine: Practical Tools to Help You SHINE, Even in Life’s Darkest Moments
I Am Here: The Journey from Fear to Freedom
Hope in the Dark: Believing God Is Good When Life Is Not
Gentle Willow: a story for children about dying (their own death or others) by Joyce C. Mills, PhD
Little Tree: A Story for Children with Serious Medical Illness
Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother.
In this episode, she shares with us just how lonely and alienating parts of her journey have felt, both as a single mother and as the mother of a medically complex child whose needs are very different than many of his peers. Bek also shares how her life and the way she must care for her son have changed as he’s gotten older. Bek’s speaks so vulnerably, and I can guarantee that there’s something here for everyone, even if your life circumstances differ. I can’t wait for you to hear her story.
And a big thanks to this week’s sponsor, GeneDx. Check them out if you're in the process of finding a genetic diagnosis for someone in your life.
Links:
Check out GeneDx and see all their options for genetic testing!
Listen to Ep 130 on Anticipatory Grief
Follow Bek on Instagram @bek_bradley!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Is it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spa treatments. So what does self-care look like (in the most feasible and east cringy way possible)?
In today’s episode, Amanda Griffith-Atkins is back one more time to discuss this topic. We share all the thoughts and feels from this community on “self-care” and especially how it feels so inaccessible to us as parents of children with rare diseases. Amanda and I also discuss how we can redefine self-care in a way that’s actually helpful to families in our position.
If you’ve been feeling tired, burned out, and honestly, so done with the traditional *SeLf-CaRe* advice, you’re not going to want to miss this episode.
Links:
Listen to all of my previous episodes with Amanda: Ep 131: Chronic Stress, Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies.
From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharing all the ways chronic stress has manifested physically in our bodies in today’s episode. Amanda Griffith-Atkins joins me once again as we discuss the impact on chronic stress and some of the ways that we can try to minimize its effects.
We don’t have the solution to every issue chronic stress causes, but we see you and we’re right here with you trying to figure it out for ourselves too.
Links:
Listen to all of my previous episodes with Amanda: Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety.
Listen to Ep 85: Parental Identity When You Have a Disabled Child with Emily Ladau.
Read Burnout: The Secret to Unlocking the Stress Cycle by Emily and Amelia Nagoski.
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Every parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality.
When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose our child colors everything from the way we interact with those around us to the choices we make when it comes to structuring our lives.
In today’s episode, Amanda Griffith-Atkins joins me once again to explore the fears around child loss and the anticipatory grief that so many of us carry. We share contributions from members of our community covering everything from fears of all the different ways we could lose our children to dealing with the ever-present grief of knowing that our children might not outlive us.
This episode is here to offer you some solidarity and assurance that you’re not alone when it comes to coping with this heavy topic.
Links:
A big thanks to our community members who contributed to this episode including @findingoutrainbows, @momofhanah, momlife0203, @freyasluckyarm, @niki8663, @vilmers, and many others!
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough” or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her daughter Eleanor’s rare diagnosis.
In today’s episode, Maddison shares with me how, despite her family’s struggles, she’s still had trouble feeling like she belonged in the medically complex community, and how she eventually came to terms with that reality. We also dive into the trickiness around overcompensating with our children who have disabilities and what it feels like when the people around us seem to be over our children’s recurrent medical issues.
If you’ve ever felt like you’re still finding your place in our community, this is one episode you can’t miss!
And a big thank you to our sponsor GeneDx for making this episode possible. Check out their website for more information on genetic testing if you’re still searching for a diagnosis in your family.
Links:
Check out our generous sponsor for this episode GeneDx!
Follow Maddison on Instagram @maddisonjhall!
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We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you.
As with each kickoff episode, I’m also sharing a little glimpse into the topics we’re diving into this season (we’ve got some heavy ones, but we’re balancing it out with content that’ll make these tough topics easier to digest), the season’s theme, and snippets of the first four episodes.
Plus, a reminder that the discussion groups are here to stay! You all seem to love them so much, and we’re so excited to be able to offer a space for you to meet and form relationships with over parents of disabled and medically complex kiddos. Meetings will be held every other Tuesday, with two times to choose from, with one group meeting at 8pm CST and one at 8pm PST.
I’m so excited about this new season. Can’t wait to dive in with you!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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Donate to the podcast or Contact me about sponsoring an episode.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.
In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding two different meetings run by our amazing group facilitators every Tuesday at 8pm in PST &CST. Fill out our contact form to get the Skype link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Check out our sponsor Aeroflow Urology for incontinence supplies.
Follow Amanda’s Instagram account.
Check out Amanda’s therapist directory.
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Join the Facebook group Parents of Children with Rare Conditions.
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Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening.
In this solo episode, I divide out disabilities and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group.
I also acknowledge that the sadness or pain we have over any of these disabilities or medical issues always stems from the love we have for our children.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding two different meetings run by our amazing group facilitators every Tuesday at 8pm in PST &CST. Fill out our contact form to get the Skype link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Support your mental health and this podcast by checking out our sponsor BetterHelp for licensed online counseling.
Solo episode about Wendy and our huge struggle together.
Ep. 13: Feeding Tube Adventures.
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Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day.
In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Ep. 40: Wendy + the Sibling Experience
Ep. 47: Siblings w/ Katie Taylor
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Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.
But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.
In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Purchase Demystifying Disability by Emily Ladau via Penguin House or Amazon.
Listen to The Accessible Stall podcast
Follow Emily on Instagram.
Follow Amanda on Instagram.
Follow Madeline on Instagram.
Listen to Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT
Listen to Ep. 54: Disabled Adult Perspective w/ Erica Stearns
Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have them Any Other Way”
Join the Facebook group Parents of Children with Rare Conditions.
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We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain.
In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.
We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Check out adorable photos of Libby, Lennon, and fam on the website.
Follow Libby on Instagram.
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Check out our sponsor BetterHelp for online licensed therapy.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal.
In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood.
She also shares ways that she has become a stronger, more gratitude-filled and empathetic person because of Claire and the lethal nature of her diagnosis.
Trigger warning concerning childhood death.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated.
We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?
In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Get full show notes and transcript here!
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Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life.
It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes.
Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future.
In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Ep. 25: EMDR Trauma Therapy w/ Rosey S.
Ep. 88: Numbing Out w/ Anna Smyth
Ep. 87: PTSD + Mental Health w/ Karley Henderson
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NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as possible.
Sam Keirsey is one of those such exceptional nurses. In this episode, she shares some of her lows and highs, both of which are dripping with love for the babies and families she’s served. She’s held babies as they passed away when parents couldn’t make it in time, and she’s attended birthday parties of thriving NICU grads. With all the ups and downs, she insists that her job loving these babies is full of privilege and transformation.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Ep. 26: The NICU Experience, a solo episode.
Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/ Dr. Dominic Moore
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And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston. This finale is a little different from seasons past because we’re not just celebrating another season, it’s also the third anniversary of the podcast.
To honor that milestone, I’m answering a ton of questions with Juston from this community about what it’s like behind the scenes, how I plan and run the podcast, and how I handle the sometimes heavy topics and stories that I bring to you all week after week.
Not going to lie, this last season and planning for Season 8 have been a little tougher than previous seasons. But this podcast is a labor of love. It’s for all of us: those who wished we had something like this when our children first received their diagnosis and the families who will come after us who can hopefully find space and hope here, instead of feeling scared and alone. And my goal for the future is that we share this podcast far and wide so everyone who needs it will have access.
Finally, make sure you catch our exciting announcement about ways you can connect with other listeners over the summer! If you’ve ever wanted to chat about the topics we cover each week, you’re in luck! Thank you for being here these last three years, and I feel so honored to create even more episodes for you next season.
Links:
Fill out our contact form to be added to our email list for Discussion Groups!
Listen to Ep 114 about grieving intellectual disability with Marci Dunning.
Listen to Ep 124 about living in survival mode with Suzy Boubion.
Check out Ep 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way” one of my favorites.
Listen to Ep 19 and Ep 20 with Katie Peterson about her daughter’s terminal diagnosis and anticipatory grief.
Connect with Rebekah, Andie, and Emily!
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Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Most parents, myself included, fall into this trap when we first bring our medically complex kids home: We want what’s best for them, and that usually feels every type of therapy we can get (OT, PT, Speech, and more!) And if some therapy is good, then more is great, right?!
But after months or years of running from one therapy session to another, often while juggling school, siblings, work, and homelife, it can become too much, and not just for us, but our kids that are supposed to be receiving benefit from these services.
So in today’s episode, I’m talking with Andrea Loveday-Brown of @centeringdisability and Larkin O’Leary from the Common Ground Society to talk about when –and how – to start limiting therapies and how that can benefit our kids and our families! More isn’t always better, and we’re going to dive into all the nuances around these tough decisions today.
Links:
Listen to Ep 9 of The Rare Life all about taking charge of your child’s medical team and therapy plan.
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Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation.
In today’s episode, Alyssa Nutile and I share the best tips and tricks from The Rare Life community, plus a few of Alyssa’s own tips from all the traveling she’s done with her daughter Gemma. We cover everything from general planning to airplane specific tips (there are a ton!) to finding the best accommodations and more. We even have a few tips for camping with medically complex kiddos!
Plus, we also dive into the big feelings that can come up for us around traveling with our kids and why it’s okay if that’s not a priority for your family right now. If you really want to take your disabled children on a trip, there are many ways to do it, but we also recognize that travel still isn’t feasible or accessible for many.
Thank you to everyone who submitted tips, tricks, hacks, and ideas to this episode! And don’t forget to check our website and Youtube channel (linked below) for articles linking our favorite travel items, carriers, and tips, plus images of all the setups and devices parents in our community use.
Links:
Check out the blog section of our website for a list of our must-have items for traveling with a disabled child, our favorite child carriers, and more!
Visit our Youtube channel to see the video version of this episode with photos of all the items mentioned and captions so you can read along!
Listen to Ep 118: Organization Hacks for helpful devices when packing and traveling.
Listen to Ep 66 with Falesha Johnson on how she travels with her daughter Cali, who was machine dependent at the time.
Follow Alyssa on Instagram!
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Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position.
Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her son Oliver’s brain injury during birth, how the experience of raising a medically complex child changed her relationships, including her marriage, and how the exhaustion of living in survival mode for years takes a toll on your mind and body.
And toward the end of the episode, we also touch on the topic of child loss and how Suzy is navigating her emotions and decisions that come along with that possibility for her own family. If that’s a sensitive topic for you, please listen with care.
Links:
Listen to Ep 33 of The Rare Life with palliative care worker Orley Bills.
Follow Suzy on Instagram!
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Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
**This is the voiceover version. There are two versions of this episode! One where you can hear directly from Hannah, and one where we used an AI voiceover. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation!
Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah Setzer (disabled activist), to explain why the terms we use for our kids are really important and set the tone for how disabled children and adults can move about in the world.
In this episode, Hannah describes her experience as a disabled child and now a disabled adult and why she prefers the term “disabled” instead of special needs. She and Kari also discuss how they’ve heard the term “special” used in society and why that just isn’t an ideal description for our kids.
And I want to add, this conversation isn’t about calling out or shaming anyone! We’re just here to give you another perspective and offer you an alternative to some very popular (but kind of infantilizing) terms often used in wider society. We’re so grateful that you’re here and willing to tackle topics like this with us.
Links:
Watch this episode with subtitles on YouTube.
Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.”
Get a copy of Demystifying Disability by Emily Ladau.
Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children.
Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole.
Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life.
Follow Hannah on Instagram!
Follow Kari (and Sloan) on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation!
Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah Setzer (disabled activist), to explain why the terms we use for our kids are really important and set the tone for how disabled children and adults can move about in the world.
In this episode, Hannah describes her experience as a disabled child and now a disabled adult and why she prefers the term “disabled” instead of special needs. She and Kari also discuss how they’ve heard the term “special” used in society and why that just isn’t an ideal description for our kids.
And I want to add, this conversation isn’t about calling out or shaming anyone! We’re just here to give you another perspective and offer you an alternative to some very popular (but kind of infantilizing) terms often used in wider society. We’re so grateful that you’re here and willing to tackle topics like this with us.
Links: Watch this episode with subtitles on YouTube.
Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.”
Get a copy of Demystifying Disability by Emily Ladau.
Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children.
Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole.
Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life.
Follow Hannah on Instagram!
Follow Kari (and Sloan) on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period. Making that process more difficult is the fact that many of the individuals working in those systems, like special education professionals and therapists, aren’t actually parents of disabled children if they even have children at all. And because of this, communication between both sides can be... let’s just say difficult at times. Here to help bridge the gap is a former Sp. Ed. professional and mom to a disabled son, Tiffany Goodchild.
In today’s episode, Tiffany shares all the things she wishes she had known as a Sp. Ed. professional before she had her son. She shares difficult experiences that she’s had navigating the Sp. Ed. system, even after having worked in it for years, and it’s her goal to help educate other special education professionals to make the special education system better for both professionals and kids.
To this end, we’ve made digital and printable flyers that you can send to the Sp. Ed. Professionals in your life. We’d love for you to send this episode to anyone who works in special education so we can make the system work better for everyone. Get a copy of the flyers here.
Finally, an extra special thanks to Trexo for sponsoring this episode! Check out their website and Instagram to see their amazing robotic devices in action!
Links:
Visit Trexo’s website to get more information about their assistive devices.
Follow Trexo on Instagram to see their products in action.
Send this flyer to your Sp. Ed. professionals! Printable version or digital.
Get a copy of No Such Thing as Normal by Megan DeJarnett.
Get a copy of Demystifying Disability by Emily Ladau.
Listen to Ep. 59 about IEPs with Catherine Whitcher, M. Ed.
Listen to Ep. 68: Dipping My Toes into Educational Advocacy.
Check out the Kourageous Karter Foundation.
Follow Tiffany on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question.
But if you’ve ever wanted permission to just not answer invasive questions from strangers, this episode is here to validate you. I’m talking with James Catchpole, author and publisher, about his experience as a disabled adult and how he deflects or simply (but politely) refuses to answers questions from strangers about his disability.
He also shares about his experience as a disabled child and how his parents were able to set a helpful example for how on how to navigate questions about his disability as he grew older. Whether your child will eventually be able to advocate for themselves or if you as the parent will be their advocate indefinitely, this episode will give you lots to think about when it comes to dealing with uncomfortable and invasive questions about your child’s disability or medical status.
Links:
Listening to Ep 100 on Raising Awareness.
Get a copy of James’ book “What Happened to You?”
Read a collection of parenting essays written by disabled parents (including a chapter by James and his wife Lucy.)
See more of James’ work and writing on his website!
Follow James on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth.
Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter Claire’s recent rare diagnosis, how she’s coping with her new life as the parent of a medically complex infant, and some of the really hard, really dark parts that can come right after receiving a diagnosis for your child.
A warning, this episode will discuss some very heavy mental health thoughts, including suicidal ideation, so if that’s not something you’re in a place to hear, that’s okay! Maybe skip this one.
And a big thanks to our generous sponsor for this episode, GeneDx!
Links:
If you’re dealing with suicidal ideation or have had suicidal thoughts, please reach out. Call 988 if you’re in North America or visit the Suicide and Crisis Lifeline to get help.
Visit GeneDx on their website for more information on genetic testing, where they’ve made it their mission to get timely diagnostics to families like ours.
Read the poem “Welcome to Holland” by Emily Perl Kingsley.
Listen to Ep 95: The Parable of the Pain Scale.
Listen to Ep 108: The Holiday + Ways to Cope.
Listen to Ep 25: On EMDR and Trauma Therapy.
Find a licensed therapist in your state who works with parents of disabled or medically complex children on Amanda Griffith-Atkins' therapist directory.
Get remote therapy from a licensed professional at BetterHelp.
Follow Alexis on Instagram.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well. When it comes to dealing with doctors and other specialists, it can sound like they’re speaking a different language, and we are often coming to the table from two very different perspectives.
So in today’s episode, Dr. Kelly Fradin, MD shares with us how we can better communicate with our child’s medical team and advocate in a way that feels less frustrating. She offers some amazing advice on how to navigate getting second opinions, how to ask questions that get to the root of the issues at hand, and even how to find those seemingly rare physicians who are willing to go above and beyond for our children.
If you’ve been trying to find better ways to work with your child’s medical team, this episode is for you!
And a big thanks to this episode’s sponsor, MOOG Medical, maker of the Infinity pump. If you’ve been frustrated with your child’s assistive feeding devices, go on over to MOOG’s website, take a look at their products, and ask your medical team if their products might work better for you and your child!
Links:
Learn more about MOOG Medical on their website and ask your medical providers if their products might be right for you!
Listen to Ep 58: Medical Advocacy with Tameka Diaz.
Listen to Ep 118: Organization Hacks for ideas about keeping track of providers and appointments.
Preorder Dr. Kelly’s book “Advanced Parenting” here!
Learn more about Dr. Kelly Fradin on her website.
Follow Dr. Kelly on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges. And as it turns out, I’m not alone with that feeling!
So today’s episode is a community-collaboration. On Instagram, I asked for all your best tips for staying organized, and you delivered! We have hacks for making tube-feeding easier, organizing all the physical “stuff” we need for our kiddos, staying on top of appointments, keeping track of medical information, and more.
If you’ve felt exhausted, overwhelmed, and inadequate about the way you have – or haven’t yet – been able to organize your child’s medical life, this episode is here to make you feel seen and then maybe give you a few ideas to make the organization process feel more manageable.
A big thanks to our sponsors for this episode, Mejo, FreeArm, and the Glory Days planner! All three of these are incredible tools for saving mental and physical energy when it comes to staying organized, and we’re so thankful they’ve partnered with us to bring all these ideas to you!
Links:
To get a link or photo for many of the tools, tricks, and ideas in this episode, check out our blog post!
Check out the video form of this episode for photos of hacks shared!
Get 20% off your FreeArmorder with code RARE20.
Use the Mejo app to organize and easily access all your child’s medical records.
Get a Glory Days planner to stay on top of every appointment, therapy session, and specialist visit.
Listen to Ep 61and Ep 62 for the story of Erica Ryan and her family, and check out the tools Erica made to make lives like ours easier.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced.
So often, the feelings that come up on these days feel overwhelming and unavoidable. But you are not alone. Today, I’m sharing my conversation with Hailey Adkisson and Madhura Katre, two moms of medically complex daughters, about how we handle our traumaversaries. We cover tips to get through these rough anniversaries, how to give yourself grace about managing the rough days however you need to, and how we appreciate when those traumaversaries finally start to feel a little less triggering.
I hope you feel seen, held, and understood after listening to this episode. I know I did, and I’m so honored to share it with you. Happy listening, friends.
Thanks to Hailey and Madhura for the amazing conversation and a huge thanks to our sponsor, MOOG Medical.
Links:
Visit MOOG Medical for tips and assistance with feeding devices on their website or call their helpline at 800-970-2337.
Listen to Ep 25 on EMDR Therapy with Rosey Schaefermeyer, LCSW.
Find a licensed therapist in your state who works with parents of disabled or medically complex children on Amanda Griffith-Atkins' therapist directory.
Get remote therapy from a licensed professional at BetterHelp.
Follow Hailey & Juniper on Instagram.
Follow Madhura on Instagram.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript and download the research articles Hilarie cited on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around.
So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked parents from our community to record their answers to four questions about their relationship with their kids, from your favorite thing about your child to your favorite moments with your kids to the moments that have made you the most proud, and we received 24 responses. Listening back through them to compile this episode, I teared up more than once because all these responses were bursting with love and connection.
Some of the reflections shared were so personal and tender. At the end of the day, it’s so clear to me that we are all our kids’ fiercest advocates and number one fans, but it’s not every day that we actually get a space to talk about just how amazing our kids are. If you’re the parent of a child with a rare disease (or any medical complexity!), you’re going to love this episode.
And if you’d like to join in the celebration, we’ll be asking these questions again on Instagram this week (link to my page is below) and you’ll be able to share your own answers with all of us.
Thanks again to each and every parent who shared audio with us for this episode. I’m so honored that you feel safe and supported in this space and that you’ve let us into these tender moments. Together, we’ve created something so special and I’m so excited to share this episode with you.
Links:
Check out our incredible sponsor Trexo Robotics and learn more about their robot legs!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript and download the research articles Hilarie cited on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
A big, big thank you to everyone who contributed thoughts and suggestions to this episode:
Madeleine @madeleineoudin
Alison @growinupgrounded
Sarah @s_fowler19
Katie @katiemelan_
Brittany @britbratsteitz
Daniel @disorderrarediseasefilms
Kathryn @bornbyariver
Karley @karley_l_h
Loren @lorenecm
Carolina @carolq14
Rachel @alvesmomkickingcask
Julianna @howlinghive
And more! Checkout the website for all the details.
Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her.
Before Melanie received her son’s diagnosis, she was a little terrified of having a child with a disability. It wasn’t just that she was afraid of how hard it would be, but that she would miss out of so many parts of parenting and family life. But as she soon found out, while parenting a child with disabilities can bring significant challenges, it also brings extreme joy.
In today’s episode, Melanie shares the story of how her son Arlo was diagnosed with cerebral palsy, the way she viewed disability before Arlo, and how her view of parenting and raising a child with a disability has shifted since his diagnosis (it’s drastic!). She also explains how she wrote her book Special. to help rebrand disability parenting and offer support and encouragement for new parents who have found themselves in the same shoes as Melanie.
This conversation was so encouraging and uplifting. You’re not going to want to miss it!
Links:
Learn more about our generous sponsor Moog Medical’s Infinity Feeding Pump.
Get your copy of The Blend Magazine.
Order a copy of Special. By Melanie Dimmit.
Check out Kelle Hampton’s book, Bloom.
You can find out more about the Upsee Harness here.
Follow Melanie on Instagram.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript and download the research articles Hilarie cited on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Society’s values are slowly shifting away from a focus on physical beauty toward intellect instead. We’re taught that academic and intellectual achievement is so valuable, maybe even one of the most valuable things we can accomplish. On the surface, that might feel like a good thing, but where does that leave our children with intellectual disabilities?
In today’s episode, Marci Dunning shares with us her experience of learning that her daughter Freya has an intellectual disability. At first, she couldn’t believe that her precious, cheeky child who was full of personality could even have an intellectual disability because it seemed so different than the way intellectual disability is portrayed in media and society. But after a long journey to a diagnosis and confirmation of Freya’s intellectual disability, Marci has begun to face her grief and to unlearn the internalized ableism that plagues nearly all of us.
Marci explains that part of her grief isn’t simply about Freya’s disability, but also from the guilt of knowing that she spent so long viewing intellectual disability in a negative light. We also talk about the frustration of knowing that testing still doesn’t capture of full range of Freya’s capabilities and interests and how letting go of certain therapies allowed Marci and Freya to develop a closer relationship.
And finally, we discuss Marci’s acceptance that disability is part of life and that she and Freya have a full life anyway, even if she still feels some sorrow for the struggles Freya may face.
Links:
Listen to Ep. 77: To Those Who Couldn’t Say “I Wouldn’t Have Them Any Other Way”.
Listen to Ep. 9: Taking Charge of Therapy.
Follow Marci & Freya on Instagram!
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life. After all, that’s what they kept hearing from many medical professionals when Eloise had difficulty tolerating formula after formula. But as Cassie discovered, highly processed formulas aren’t the only option available for many tube-fed kids.
After working with Hilarie Dreyer, a registered dietitian who specializes in blenderized diets, Cassie was able to switch out the formula that made Eloise’s life so difficult to blends that she makes from whole foods at home. This change in food has been life-changing for Eloise’s overall health and her relationship with food by now being able to choose and help mix her own blends.
In this episode, I talk with both Hilarie and Cassie as we discuss all things blenderized diets, from what that actually means to what the research says about its health benefits. Cassie shares the story of how working with Hilarie and changing to a blenderized diet for Eloise improved life for her entire family. Hilarie and Cassie also share ways to integrate blends into your child’s feeds that can help the whole process feel less overwhelming.
Blenderized diets might not work for everyone, and it doesn’t have to be an all or nothing switch either! There are a ton of options when adding blends into your child’s diet, including shelf-stable blends made from whole foods from Functional Formularies. If you’ve been considering integrating more “real” food into your child’s diet, this episode is for you.
Links:
Visit Functional Formularies for formula made from whole food that can make switching to a blenderized diet that much easier.
Research about benefits of blenderized diets:
Visit the Feeding Tube Awareness Week website for more resources.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6660979/ - Health Outcomes and Quality of Life Indices of Children Receiving Blenderized Feeds via Enteral Tube
(paid research)https://aspenjournals.onlinelibrary.wiley.com/doi/10.1002/ncp.10493
(paid research)https://aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.1049
Follow Hilarie on Instagram.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Transcript on the website.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
For the first part of Abby’s pregnancy with her son Jackson, everything was perfectly uneventful. But at her twenty-week ultrasound, her medical team discovered some unusual markers. This appointment set off a chain of visits, tests, and specialists that eventually ended in a diagnosis of a rare and life-threatening form of skeletal dysplasia called osteogenesis imperfecta.
In this episode, Abby and her family were thrown into the world of medically complex caregiving and advocacy, which sometimes included teaching other nurses and medical professionals how to care for their son. Abby tells us how, in the years since his birth, she has continued to advocate while also accepting that she can’t protect her son from every single injury and illness, but she can offer him new experiences, intense love, and a joyful life.
I can’t tell you just how much I love this story, and I can’t wait to share it with you.
Links:
Learn more about the sponsor Moog Medical’s Infinity Feeding Pump and their customer panel.
Listen to Ep. 82 which covers Kimberly’s experience with osteogenesis imperfecta.
Follow Abby on Instagram.
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript and download the research articles Hilarie cited on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks, trauma-versaries, grief and acceptance for our child’s disabilities, and more.
For the last six seasons, we’ve been using the same pattern and order for planning episodes, and I’ve been really comfortable with that structure. BUT I want to give even more parents an opportunity to share their stories and their wisdom, so season 7 is going to flow a little differently as we interview a new guest every episode.
In this episode, I’ll give you some details about the busy offseason, more insight into the new season structure, and sneak peeks for the first four episodes of this season. Thanks for joining me for this new season. I’m so excited to dive in with you!
Links:
Follow me on Instagram!
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether.
Whichever way your family chooses to navigate these difficult circumstances is totally valid, and in this episode, Amanda and I share experiences from listeners on how they make it through these moments. We cover feedback from how awful it feels to be inpatient during big events to practical tips to celebrate when you’re in the hospital to encouragement on handling these tough situations in whatever way is easiest and safest for you and your family.
A big, big thank you to all our listeners who sent in tips, clips, and feelings to share with everyone. We used all of your feedback to create this episode, and we are so grateful!
Links:
Listen to our other episodes in this holiday series with Amanda: Ep 108 & Ep 109.
Visit Icing Smiles for custom cakes when in the hospital.
Visit the Confetti Foundation for birthday boxes for hospitalized children.
Visit Little Wishes, a foundation that brings special moments to children who are inpatient.
Donate to the podcast via Buy Me a Coffee.
Follow Amanda on Instagram.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.
In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events.
We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible.
Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible!
Links:
Listen to our other episode in this holiday series with Ep 108: Why Holidays Kinda Suck with Amanda Griffith-Atkins.
Check out Ep 81: Health Anxiety which also features Amanda Griffith-Atkins.
Get a copy of Brené Brown’s book “The Gifts of Imperfection.”
Donate to the podcast via Buy Me a Coffee.
Follow Amanda on Instagram.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.
And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.
In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.
Links:
Listen to Amanda’s previous episodes: Ep 81: Health Anxiety, Ep 85: On the “Disability Parent” Identity, & Ep: 99: Family Planning.
Listen to Ep 20: Anticipatory Grief with Katie Peterson.
Check out Ep 104: How to Support Parents of Disabled Children.
Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa!
Donate to the podcast via Buy Me a Coffee.
Follow Amanda on Instagram.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our team and I was able to branch out creatively to bring you an even better podcast episode each and every week. This episode was so fun as we reflected on how the podcast has grown this last season.
In this episode, we listen to a short clip featuring snippets from every episode in Season 6. Then we’ve got three recorded voice messages from listeners where we get to relive our favorite parts of the season. Toward the end of the episode, Brittany and I recap some fun behind-the-scenes updates and how it’s been working with sponsors including this amazing community who sponsored the last two episodes this season! And finally, we’re sharing how I’ve changed up The Rare Life’s upcoming “off-season.”
I can’t wait for you to hear this episode, and I’m so grateful to have shared another season of The Rare Life with you. See you next season!
Links:
Listen to the episodes that you, as a community, sponsored: Ep 105: Brianna’s Story & Ep 106: Respecting Our NonSpeaking Children
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Favorite episode of Madhura & Alyssa - Ep 100: Raising Awareness
Favorite episode of Kahrissa - Ep 94: Family + Friends w/ Chelsea Denham and Ep 95: Parable of the Pain Scale
Follow each of us on Instagram! Me, Brittany, Kahrissa, Madhura, & Alyssa!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
I think most of us have a vision of what our relationship with our children might look like when we first step into parenthood. We know what we want our kids to experience, how we hope to interact with them, and how we want to communicate with them to build a strong bond.
But, as parents of children with disabilities, we also know that these visions don’t always play out. In the case of nonverbal children, we have to learn how to use communication devices and become incredibly attuned to body language instead of having the verbal conversations we might be used to. It doesn’t change our hopes for our relationship with our children, but it does affect the way we communicate and build that bond with them.
In this special topic episode, Brianna Christian shares how she celebrates her son Isaac’s ability to communicate in his own unique way. She talks about all the ways she can see him growing and developing his personality even though he doesn’t meet “milestones” prescribed by the typical medical community. At the same time, she acknowledges the difficulty that her son faces when he has trouble expressing himself to others, and the frustration of trying to teach others to read his body language and understand his communication skills and respect his intellectual capabilities.
Through it all, Brianna’s main goal is to always honor and respect her son and the many complex feelings that he has as a three-year-old, even if the way he communicates looks unfamiliar to most. Allowing him to feel his feelings and letting Isaac guide Brianna about his needs has only strengthened the bond between the two of them.
Links:
Listen to Ep 105: Brianna’s Story.
Donate to the podcast via Buy Me a Coffee.
Follow Brianna on Instagram.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And thank you so much to our sponsor for this episode, Miranda Dobrowolski!
After struggling with fertility issues for years, Brianna was overjoyed to finally be pregnant, carry the pregnancy to term, and bring home her sweet baby Isaac. As a nurse herself, she understood the risks and complications and possibilities for things that could go awry, but there were never any indications during birth or pregnancy that something was amiss with her son’s health until several months after he was born.
After months of consultations, monitoring, blame from medical staff, and confusion, Brianna and her family were finally given a diagnosis for Isaac that had the potential to change the way they planned for their future family.
In this episode, Brianna tells us what it was like to feel like to have the sense that she was just missing something around her son’s health, especially after such a “perfect” pregnancy and delivery and the difficult journey to receiving his diagnosis.
Links:
Listen to Ep. 77: Wendy’s story.
Listen to Ep 99 on family planning after having a child with medical complexities.
Donate to the podcast via Buy Me a Coffee.
Follow Brianna on Instagram.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant.
Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether.
It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support?
In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships.
Links:
Check out Annette Moreau’s courses.
Follow me on Instagram.
Follow the Facebook page.
Donate to the podcast via Buy Me a Coffee.
A big, big thank you to everyone who contributed thoughts and suggestions to this episode:
Kenya Davis @sunflowers_sea
Catherine Hoffman @cathsheahoff
Grace Bongiovanni @grace.bongiovanni
Huang Hsin @becky812
Maddison Ward @maddisonjward
Michel-Anne Bridges @mrs.mabridges
Jenna @donotfeedwildlife
Shannon Read @mrs_read_15
Jill Jones @jilllatimer294
@jenangarita
Siobhan and Jamie @jamies_gdd_diary
Victoria Shaver @vicgs
Kate McGregor @kate_mcgregor_
Kate Rolfes @kate.rolfes
Krystal Hatch @mrs_katch
@linavilela
Sarah Harris @sarah_harris_insta
Katie Peterson @katiebpeterson
Chloe @chloerose1127
Marci Dunning @freyasluckyarm
Libby @libby.shidel
Karissa Taylor @the_advocating_mom
@jenangarita
Hailey @Growing_juniper
Rachael Carlucci @rachaelmcarlucci
Julianna Morasse @howlinghive
Kari Harbath @Kariandsloan
Tricia @triciajeanb
Ashley Garrison @ash.garrison
Like so many of you, I worry about how to teach my son with disabilities to fully love and embrace all of himself—including and especially his disabilities that set him apart from his non-disabled peers.
And I believe it starts with us. We need to accept and love our bodies exactly as they are—even the parts we think are not worthy of being seen. We need to model body image resilience for our children.
In this episode, Dr. Lexie Kite, a leading expert in the field of body image resilience, shares ways that we can shift how we view and speak about our bodies in order to influence the ways our children view their own bodies.
Links:
Check out our lovely sponsor Bitsy Atwold Teaching Tools (Use code RARE10 to receive 10% off!)
Follow Bitsy Atwold on Instagram.
Purchase a copy of More Than a Body by Lexie and Lindsay Kite.
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When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her diagnosis of trisomy 18.
In this episode, she shares what it was like to navigate the following year inpatient at the hospital, co-parenting with a man she had very mixed feelings about. She also talks about what it was like to be discharged from the hospital with two daughters to care for without a house or job to go home to, and the ways she’s whittled time for self-care when everything is on her shoulders alone.
Links:
Functional Formularies (our awesome sponsor!):
Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount being applied)
Use this link for your clinician to request a free sample of Functional Formularies.
Follow Functional Formularieson Instagram.
Follow Functional Formularieson Facebook and join the giveaway this weekend!
Follow Tiffanyon Instagram.
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Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our affiliate BetterHelp for online licensed therapy and receive 10% off.
When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18/Edward Syndrome diagnosis, she was immediately pressured to terminate. After deciding to continue her pregnancy, Aiyana was born alive—beating the odds. And because of the T18 diagnosis, doctors refused to give her the life-saving procedures she needed. Tiffany then changed her care, in favor of a doctor who agreed to give her the procedure and save her life.
In this episode, Tiffany tells what it's been like to have to fight for her daughter to receive needed medical care. She also shares what it was like to go through a divorce in the weeks leading up to and following Aiyana’s chaotic birth, and ways she has learned to surrender the illusion of control.
Links:
Functional Formularies (our awesome sponsor!):
Follow this link to check out Functional Formularies’ products and to receive 10% off your purchase. (Use code “rare10” if there are issues with the discount being applied)
Use this link for your clinician to request a free sample of Functional Formularies.
Follow Functional Formularieson Instagram and join the giveaway!
Follow Functional Formularieson Facebook.
Read about the Boston Children’s study about blenderized diets.
Follow Tiffany on Instagram.
Follow me on Instagram.
Check out adorable photos of Tiffany + fam on the website.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our affiliate BetterHelp for online licensed therapy.
So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an effort to show that our child really isn’t that different from the next and deserves inclusion. Or perhaps we’re teaching about the importance of being an organ donor because our child wouldn’t be here today without generous donors. Or maybe we’re shouting the symptoms and definition of our child’s rare syndrome in the hopes that they’ll finally get the funding needed to research a cure.
There are many causes to fight for and many reasons for doing so. But it’s important to remember that we are not obligated to raise awareness about anything. Becoming a parent to a child with a disability does not require it.
In this episode, I invite parents to evaluate their cause and their “why” against the question: “is this serving me? Is it serving my child?” Because at the end of the day, that’s what really matters.
Links:
Children’s book What Happened to You? by James Catchpole
Demystifying Disabilityby Emily Ladau
Ep. 85 w/ Emily Ladau and Amanda Griffith-Atkins
Ep. 23: Disability Advocacy w/ Jenny McLelland
Disabled adults on Instagram whom I love learning from:
When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated.
We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?
In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.
Links:
Relevant episodes to listen to:
-Ep. 19 and Ep. 20 w/ Kate Peterson
-Ep. 33 w/ Palliative Social Worker Orley Bills
-Ep. 22: It’s All My Fault (finding out I was a carrier for my son’s condition)
-Ep. 50: The Sibling Perspective w/ Katherine Acton
-Ep. 47: Siblings w/ Katie Taylor, CCLS
-Ep. 40: Wendy + the Sibling Experience
-Ep. 98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer
Episodes with Amanda Griffith-Atkins:
-Ep. 85: Should A Child’s Disability be a part of Their Parent’s Identity?
-Ep. 81: Health Anxiety
Join this group of x-linked carriers called Remember the Girls
Learn about genetic counselors
Find a genetic counselor
Connect with us on Instagram!
-Madeline Cheney (host) @The_Rare_Life
-Amanda Griffith-Atkins @Amanda.Griffith.Atkins
-Marci Dunning @FreyasLuckyArm
-Maddison Ward @MaddisonJWard
-Brea Rainey @thatonegirlbrea
-Meg Dawley @Meg.Dawley
-Rachel Bennett: @rachglickb
-Allison Wolf @AllisonHopes
-Taylor @taylorhuss15
-Katie Peterson @KatiebPeterson
-Caitlin Castro @SeedyCastro
-Emma Bliss @Emma_Blissful
-Thea @TheaMoshofsky
-Marie Wood @chariskaieirene
-Karlita @KarlitaBWell23
Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with disabilities. And because they appear a lot stronger than they are. Because they are, afterall, just kids.
In this special topic episode, Melissa Schlemmer shares all about her incredible son Alexander and his big heart. She talks about ways she protects his relationship with his disabled brother Christopher by not accentuating their differences and allowing them to simply be brothers. She also tells us of a tragedy that occurred in her mother’s family that has shaped the way she parents them.
Links:
Check out the Trexo Robotics website
Follow us on Instagram:
Melissa (Our AMAZING guest!)
Trexo Robotics (our AMAZING sponsor!)
Follow us on Facebook:
Melissa (Our AMAZING guest!)
Trexo Robotics (our AMAZING sponsor!)
Episodes to listen to next:
Ep. 40: Wendy + the Sibling Experience (a solo episode)
Ep. 47: Siblings w/ Katie Taylor, CCLS (with a childlife specialist)
Ep. 50: The Sibling Perspective w/ Katherine Acton (with an adult who grew up with a disabled sibling)
When Melissa knew something was up with her infant-son Christopher nine years ago, she reassured herself that as long as his brain was ok, they would be ok.
So, when his neurologist told her about his rare disorder and the way it affected his brain, everything crumbled around them. After years of navigating all the sub diagnoses that come along with his syndrome, Melissa has come to a place of radical acceptance of her son’s disabilities.
In this episode, Melissa shares this and more.
Links:
Check out NAPA Center and their resources.
Get info about NAPA Center’s new Chicago Clinic.
Fill out an interest form for NAPA Center's new Chicago clinic.
Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way”
Follow Melissa on Instagram
Follow Melissa on Facebook
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our affiliate BetterHelp for online licensed therapy.
Access the transcript on the website here.
We’ve probably all heard it before: When asked whether a parent is hoping their unborn baby is a boy or a girl, they reply sweetly, “all we want is a healthy baby.” To most people this seems like a valiant proclamation of unconditional love and indifference to the baby’s gender. But to parents of medically complex and admittedly very unhealthy babies, it can really pack a punch.
In this solo episode, Madeline unpacks what emotions this often brings up for parents, drawing from her own experience as well as the input from listeners as submitted via Instagram.
Links:
Check out Worthy Brands website.
SeeWorthy eye patches on Amazon.
Listen to Ep. 60: Blindness.
Listen to the Preface episode.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain.
In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.
We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.
Links:
A huge shoutout to our generous sponsor Rifton adaptive equipment!
Check out adorable photos of Libby, Lennon, and fam on the website.
Follow Libby on Instagram.
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Join the Facebook group Parents of Children with Rare Conditions.
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When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most.
In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go through. We also talk about ways we can try to be just a little more vulnerable with them and how to tell our family and friends what kind of support we want and need.
Links:
A huge thank you to our generous sponsor Moog Medical!
Access Moog’s 24/7 live support for current users of their products like the Infinity Pump.
Follow Chelsea on Instagram.
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Join the Facebook group Parents of Children with Rare Conditions.
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When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has.
In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so little is known about the rare conditions they have. We also discuss how blindsided they were when their second was born with similar issues, and the way that emergent medical situations with her sons affect her.
Links:
Follow Chelsea on Instagram @thiselegantlife.
Follow The Rare Life on Instagram @the_rare_life.
Check out adorable photos of Chelsea + fam!
A huge thank you to our sponsor Moog Medical.
Access Moog’s 24/7 live support for current users of their products like the Infinity Pump.
We’re back with brand-new episodes of Season 6! In this short and sweet episode, host Madeline Cheney introduces the theme of the upcoming season and gives sneak peeks into the first four episodes of Season 6.
Links:
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth.
Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her.
Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to Autumn’s death and Lily’s prematurity.
This is a rebroadcast of Ep. 37 of Season 3. Join us next time for Season 6’s kickoff episode!
Links:
Listen to Jess’ special topic epsiode about social media, released immediately after this one.
Follow Jess on IG here: https://www.instagram.com/lilyslittlelungs/
Follow me on IG here: https://www.instagram.com/the_rare_life/
Still Apart of Us, a Podcast about Stillbirth, and Infant Loss: https://stillapartofus.com/
For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant.
Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are.
In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced.
This is a rebroadcast of Ep. 26 of Season 2.
Links:
Listen to Anna’s story episode, that released immediately after this one.
Listen to the Preface Episode here:
https://therarelifepodcast.com/show-notes/preface
Ep. 13: Feeding Tube Adventures:
https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures
Ep. 5: A List of Diagnoses:
https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode
Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html
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Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.
Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!
This is a rebroadcast of Ep. 41 from Season 3.
Links:
Listen to Ep. 42: Friendship and Inclusion for Our Children and Ourselves w/ Effie Parks, the episode released right after this one.
See photos of Effie + fam: https://therarelifepodcast.com/
Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast
Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me on Instagram: https://www.instagram.com/the_rare_life/
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care.
In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph they experience when the opposite occurs. He also gives us much-needed reassurances in our role as our children’s caregivers.
This episode is a rebroadcast from Season 4.
Links:
Ep. 71: Confessions of a NICU Nurse w/ Sam Keirsey, BSN
Atypical Truth podcast.
The Lower Lights music group on Spotify.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown shares three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram.
We unpack three of her—and her followers’—favorites:
1. I am not stronger than you.
2. What happens when it stops being cute?
3. I wish your pity were replaced with empathy.
This is a rebroadcast of Ep. 46: Confessions of a Special-Needs Mama w/ Anna Brown from Season 3. We will be back to kick off Season 6 on July 28th.
Links:
Listen to Anna’s story episode, released just prior to this episode.
Listen to the episode about siblings, released just after this episode.
Follow Anna on IG: https://www.instagram.com/mothering_rare/
Follow me on IG: https://www.instagram.com/the_rare_life/
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Cali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring.
In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow and laughs at the fact that we as parents are dependent on the machines too, but at more of an emotional level.
This episode is being rebroadcasted from Ep. 66 in Season 4.
Links:
Listen to Falesha’s story episode released immediately before this one.
Listen to Ep. 67, the episode released immediately after this one.
Listen to Episode 13: Feeding Tubes.
BetterHelp, online counseling affiliate link.
Let’s be friends on Instagram! @the_rare_life
Follow The Rare Life podcast on Facebook.
Follow Falesha on:
Instagram, @falesha11
YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg
Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life.
It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes.
Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it.
This is a rebroadcast of Ep. 22 of Season 2.
Links:
The episode that released right after this one Ep. 23: Jenny’s Story.
Follow me on Instagram.
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Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
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The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital.
Sometimes he does this by utilizing his training as a certified grief counselor and LCSW and helping them sort through the hugely painful emotions that arise. Other times he gives parents a break from the heaviness and just chats about superhero movies. Regardless of the mode, Orley takes his job of supporting parents very seriously.
In this episode, Orley shares a few of the gems he’s picked up in the past 13 years in that role. He shares the necessity of creating a care plan to guide us in decision making for our children. We also chat about leaning into the painful emotions instead of stifling them, to cope with them in a healthy way.
This is a rebroadcast of episode 33 that was released in Season 2.
Links:
Follow the episode’s sponsor Carolina Quijada on Instagram.
Reach out about becoming a personal (or corporate) sponsor.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a sleep study after much resistance and found she had severe sleep apnea and required surgeries and machines to help her breathe at night. And most recently, they found epilepsy after another round of fighting doctors to give her daughter the tests to look into her concerns.
Because of these experiences, Tameka is passionate in empowering other parents to follow our gut and never stop fighting for them. In this episode, she shares each of these three experiences and gives us advice on fighting for our own medically-complex children. She also speaks to the emotional breaking point she hit from all the stress and the necessity for caring for ourselves, too.
Links:
Book a free strategy session with Chardell or check out her courses on her website.
Grab your free Appointment Day Fuel Plan.
Find Tameka on Instagram @thediazgirls.
Find me on Instagram @the_rare_life.
Listen to Ep. 24: Disability Advocacy w/ Jenny McLelland.
Listen to Tameka's story episode that was released prior to this one.
Listen to Educational Advocacy w/ Catherine Whitcher, released just after this one.
Hear all the tea on The Rare Life podcast and celebrate the two-year birthday with us in this incredibly fun finale episode. For the first time ever, I am joined by a special guest to celebrate and reflect right along with me —newest TRL team member and my biggest hype woman Brittany Steitz. This episode is a whole lot of fun and a lot longer than typical finale episodes, too!
In this episode, we listen a 3-minute audio clip composed of snippets from each of the 20 episodes of Season 5. We listen to recorded voice messages from three listeners and geek out about the impact of the podcast on us personally and on listeners. We also explain the growth happening in the form of the brand new TRL ambassador team and funding opportunities for the podcast.
Links:
Join the TRL ambassador team
Favorite episode of Hilarie and Rebekah Ep 85 w/ Emily Ladau and Amanda Griffith-Atkins
Favorite episode of Laurel Ep. 83: Evolution of Faith pt. 1 and Ep. 83 pt. 2
Follow each of us on IG! Me, Brittany, Rebekah, Laurel and Hilarie
Ep. 89 sponsored by Brittany
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future.
In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep.
Links:
Ep. 25: EMDR Trauma Therapy w/ Rosey S.
The pain we’ve experienced alongside our disabled children is often gaslit by others. Responses like “Oh, it’s not that bad…” and “At least….” Or “You should be grateful that….” are all forms of toxic positivity. Just like that, our pain and struggle are minimized.
But the same can happen internally. When we’re struggling and our inner voice berates with “you’re so weak” and “it’s really not that bad” and “so-and-so has it so much worse than you do.”
Both are harmful and both need to stop.
Links:
Listen to Ep. 25: EMDR Trauma Therapy.
Follow me on Instagram.
Donate to the podcast via Buy Me a Coffee.
Check out our sponsor BetterHelp for online licensed therapy.
Reach out about sponsoring an episode https://therarelifepodcast.com/contact
Numbing out is a go-to coping mechanism for so many of us experiencing painful and stressful situations and emotions. And it’s not a bad thing! There are situations when we absolutely need to. But when we numb out excessively, we can become hardened and a bit of a shell of ourselves. And we deserve more.
In this episode, mindfulness expert Anna Smyth explains the ins and outs of numbing out and how we can take small and compassionate steps towards choosing to stay present when our kneejerk response is to numb out. As part of this, she leads us through two short mindfulness practices that can aid us in that.
Links:
Anna Smyth’s website.
A STOP practice on YouTube.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
Karley has always dealt with anxiety. But as is the case for many of us, her mental health took a turn for the worse when her daughter Nora was born. Because of the medical trauma that ensued for the whole family, she now deals with night terrors, panic attacks, and depression as well.
In this episode, Karley shares how she copes with these things while caring for her daughters. She also shares the difficulty of therapy, accepting a diagnosis of PTSD, and seeing her six-year-old daughter struggle with her own mental health.
Links:
Listen to Ep. 25: EMDR Trauma Therapy w/ Rosey Shaeffermyer, LCSW
Check out our sponsor BetterHelp for online licensed therapy.
Follow Karley on Instagram.
Follow me on Instagram.
With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus.
In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible experience of seeing her baby smile and open her eyes for the first time after a life-saving shunt was placed. We also dig into the dynamics of almost-daily appointments for her family.
Links:
Follow Karley on Instagram.
Follow me on Instagram.
Check out photos of Karley + fam on the website.
Check out our appointment day merch.
Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.
But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.
In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?
Links:
Check out our sponsor WorthyBrands Eye and Port Patches.
Purchase Demystifying Disability by Emily Ladau via Penguin House or Amazon.
Listen to The Accessible Stall podcast
Follow Emily on Instagram.
Follow Amanda on Instagram.
Follow Madeline on Instagram.
Listen to Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT
Listen to Ep. 54: Disabled Adult Perspective w/ Erica Stearns
Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have them Any Other Way”
Grief is something that most parents of disabled/medically complex children experience. And as Carrie shares in this episode, it never goes away. Instead, it shifts and evolves.
She also explains how difficult it was to process her grief in the early days of her son’s life (15 years ago) when she was in survival mode and offers comfort and advice to those currently in that situation.
We discuss what exactly it is that we’re grieving, and how she has helped her son process his own grief.
Links:
Follow Carrie M. Holt on Instagram.
Follow me on Instagram.
Check out our sponsor BetterHelp for online licensed therapy.
Listen to Take Heart Special Moms podcast.
Episodes mentioned:
Ep. 20: Anticipatory Grief w/ Katie Peterson
Ep. 64: Improvement-Triggered Grief
Apply to be a guest on The Rare Life podcast.
Find adorable photos of Carrie and Toby on the website.
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder.
In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to place her daughter in His hands, regardless of the outcome.
This episode is divided into two parts. This is part 2.
Links:
Check out our sponsor BetterHelp for online licensed therapy.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder.
In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to place her daughter in His hands, regardless of the outcome.
This episode is divided into two parts. This is part 1.
Links:
Check out our sponsor BetterHelp for online licensed therapy.
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After further imaging, they found she had fractured a rib while still in utero. This led to the suspected diagnosis of OI—a rare syndrome that results in extremely breakable bones. After they were discharged, little Julianne broke just about every limb. Kim and her husband were reeling with the unexpected medical journey they were on.
In this episode, Kim shares what it was like to endure the learning curve during the first several months of her daughter’s life. She also talks about the awesome things that have come because of her daughter’s diagnosis, and the ways that her brand-new marriage was affected.
Links:
Follow Kim on Instagram
Follow me on Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.
In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.
Links:
Check out our sponsor Aeroflow Urology for incontinence supplies.
Follow Amanda’s Instagram account.
Check out Amanda’s therapist directory.
Follow me on Instagram.
Check out our sponsor BetterHelp for online licensed therapy.
In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective. They also share a few of their favorite things about their child.
This episode is a celebration of the beauty of being parent to medically-complex children and the important lessons we pick up along the way.
Links:
Book “Mighty Me” by Analy Navarro
Book “Special” by Melanie Dimmitt
Join the Facebook group Parents of Children with Rare Conditions.
Rayel Lockhart on Instagram: https://www.instagram.com/itsalockhartlife/
Lexie Emory on Instagram: https://www.instagram.com/lexie_be_cheesin/
Heather Cox on Instagram: https://www.instagram.com/ariannasarmy1/
Analy Navarro on Instagram: https://www.instagram.com/the_a_navarro/
Roya Malaekeh on Instagram: https://www.instagram.com/the_destroya/
Follow me on Instagram.
Follow the Facebook page.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
When her son was young, Wendy grappled with the crushing feeling that she somehow caused her son’s disabilities and delays. The weight of that guilt and shame was unbearable, and it wasn’t until she saw herself in another mom struggling in similar ways that she discovered self-compassion. This aha moment changed her perspective for the better.
Ammon was five years old then, and in the ten years that’s past since that point, she’s developed a much healthier view of her relationship with Ammon and her relationship with guilt.
In this episode she shares what that was like for her, and ways that she has been able to rise above the guilt and shame, while also using the guilt she feels to make necessary adjustments to her life.
Links:
Check out our affiliate BetterHelp’s therapy services.
When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and more medical issues arose.
In this episode, she shares the trauma she experienced when no one took her concerns seriously. She also tells us of the incredible story of finding his rare genetic syndrome diagnosis when he was five years old, and how that affected her grief.
Ammon is now 15 years-old and brings her and her family so much joy.
Links:
Check out the website for photos of Wendy + fam.
Ep. 64: Improvement-Triggered Grief
Connect with Wendy on Instagram.
Connect with me on Instagram.
I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening.
In this solo episode, I divide out disabilities and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group.
I also acknowledge than the sadness or pain we have over anyof these disabilities or medical issues always stems from the love we have for our children.
Links:
Support your mental health and this podcast by checking out our sponsor BetterHelp for licensed online counseling.
Solo episode about Wendy and our huge struggle together.
As caregivers, our needs often get pushed to the side. Self-care can seem impossible. Which is why I love the simple act of recognizing our top four values. According to Moira Cleary, when we identify our top four values, we identify what we need most in our lives. These can vary wildly from person to person.
Moira gives us the tools we need to do a little soul-searching and figure out just what these values are for us. Simply being aware of these things can inspire us to make subtle and simple adaptations to our ever day (busy) lives that truly make a difference.
In this episode, we also discuss the need let go of the expectations we had for parenthood and embrace our very different reality. Moira also speaks to the importance of recognizing our limited capacities—We cannot and should not try to do it all.
Links:
Ep. 32: Self-Care w/ Jessica Patay.
Download Moira’s Value Exercise.
Moira’s website.
Follow Moira on Instagram.
Follow me on Instagram.
Over the two years Sarah and her husband Steve have been foster and adoptive parents, they have had to face intense feelings towards those who have harmed their children, and work through intense grief.
In this episode, Sarah talks about her grieving process in regards to Zariah, ways she’s changed as a person because of her, and how she’s dealt with the difficult feelings towards her children’s birth parents. She also shares the intensely difficult feelings towards the nurse that caused her daughter’s death, and her desire to someday forgive her.
Links:
Check out our affiliate partner BetterHelp, an online therapy service.
Follow meon Instagram.
Follow Sarahon Instagram.
When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was clear that Zariah would need a foster home, and eventual adoption.
Sarah immediately knew she was meant to be her mother. Convincing her husband Steve was another story. Because of HIPAA laws, he wasn’t allowed to meet Zariah until they were officially her foster parents. Miraculously, he agreed.
After several months as a family, Zariah passed away as a result of a tragic trach accident with her home health nurse.
In this episode, Sarah shares their journey with Zariah, and all the love they share.
Links:
Follow Sarah on Instagram @adoptive.foster.medical.mama.
Answer this month’s question.
Join Parents of Children with Rare Conditions FB group.
It is SO good to be back! After an extra long break between seasons, I’m here with a brand-new season of episodes all centered around our personal journey as parents and caregivers. Obviously, we refer to our personal journeys frequently in virtually every episode, but Season 5 is a chance to really home in on and talk about what occurs for us at a very personal level while facing a very different reality than we had envisioned for ourselves.
In this episode, you’ll get a closer look at this season’s theme, and listen to extended clips of the first four episodes coming your way.
Links:
Follow meon Instagram.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Check out our appointment day merch.
Check out our sponsor BetterHelp for online licensed therapy.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 22: It’s All My Fault, an exceptionally vulnerable solo episode about finding out I’m a carrier for my son’s genetic syndrome. I share the profound guilt I carry, and the emotions surrounding the fact that I might pass it on to another child someday.
Next week’s episode is Season 5’s Kickoff! I’m stoked to be back with fresh, new episodes.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 54: Disabled-Adult Perspective with the lovely Erica Stearns. In this heartwarming episode, Erica shares the dos and don’ts of medically complex parenting as she has learned as both a medically complex daughter, and mother to two medically complex children.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 33: It’s OK to be Angry, with our local children’s hospital’s palliative care team member Orley Bills. In this episode, we talk about the extremely difficult decisions we must make for our children, and that all emotions are ok.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 39: Inclusive Books are for Everyone. In this episode, I chat with three fabulous authors of inclusive children’s books—Macy Gilson (author of Kindness is Golden), Jessica Parham (author of Good to be Me and Baking up a Storm), and Megan DeJarnett (author of No Such Thing as Normal).
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 37: The Story of Lily. In it, I chat with one of my all-time favorite guests Jess Wolff whose twin daughters were born at 24-week gestation. One of her daughters, Autumn, sadly passed away, and Lily spent her first year in the NICU.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 48: Lifting the Curtain, a solo episode celebrating the one year anniversary of the podcast. I share some behind-the-scenes on the creation and upkeep of the show, the ways it’s impacted many of you, and the power of vulnerability.
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th.
But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you!
This week’s recommended episode is Ep. 25: EMDR Trauma Therapy w/ Rosey Shaeffermeyer. In it, I chat with my therapist about the trauma therapy that changed my life and allowed me to move through difficult events around Kimball’s medical complexities and birth.
Another awesome season come and gone! This episode is in celebration and appreciation of the meaningful episodes, guests, and listeners of season 4.
In this episode, I share a few behind-the-scenes of the season (with an exciting update!) and reminisce as we listen to the sixteen episodes condensed into a two-minute segment. I also share and respond to three audio submissions from parent-listeners as they speak of the impact the podcast has had on them, and their favorite episodes of season 4.
Links:
Pitch in on the group gift for our dedicated interns.
Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/Dr. Dominic Moore
Ep. 70: Accessibility and Ableism w/ Vanessa McLeod
Follow Jessica on Instagram.
Follow Lexie on Instagram.
Follow Alyssa on Instagram.
Follow meon Instagram.
NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as possible.
Sam Keirsey is one of those such exceptional nurses. In this episode, she shares some of her lows and highs, both of which are dripping with love for the babies and families she’s served. She’s held babies as they passed away when parents couldn’t make it in time, and she’s attended birthday parties of thriving NICU grads. With all the ups and downs, she insists that her job loving these babies is full of privilege and transformation.
Links:
Support the podcast with a small, one-time donation. Much thanks!
Ep. 26: The NICU Experience, a solo episode.
Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/ Dr. Dominic Moore
Answer theQuestion of the Month.
Read Sam’s lightning round with practical NICU questions.
Follow me on Instagram @the_rare_life to watch the live Q and A with Sam.
At only 2.5 years old, Ivy has already faced discrimination based on her disability. In this episode, her mom Vanessa McLeod shares what that’s been like for her to advocate to give her daughter everything she deserves in life. She talks about the ableism they’ve encountered, and her blazing confidence that Ivy will live a fulfilled life.
She insists again and again that her daughter’s disability is not sad at all—it’s wonderful.
Links:
Follow Vanessa on Instagram @venessamcleod_
Follow Madeline on Instagram @the_rare_life
Follow The Rare Life on Facebook.
Check out our appointment day merch!
Support the show and become a Patreon.
Vanessa’s Recommended Resources:
Crimp Camp on Netflix (film)
Demystifying Disability by Emily Ladau (book)
Sitting Pretty by Rebekah Taussig (book)
Instagram Accounts:
@theheumannperspective
Ivy was formed without forearms or hands, which was discovered halfway through Vanessa’s pregnancy. Because of this, she was pressured by her medical team to terminate the pregnancy. The doctors insisted her daughter would have no quality of life and left Venessa wondering if terminating would be the selfless thing to do. When she refused the termination, zero medical support or resources were offered.
In this episode, we dig into what that was like for her, the ableism that fuels that type of pressure to terminate, as well as the ableism we have to unlearn as parents.
**Note: Ableism is defined as “discrimination in favor of able-bodied people.”
Links:
Check out photos of Venessa’s family on the website.
Follow Vanessa on Instagram.
Follow me on Instagram.
Read Venessa’s blog post “A Letter to the Doctor Who Told Me to Terminate My Pregnancy…”
The Lucky Fin Project.
When Charlie Met Emma by Amy Webb.
What Happened to You? By James Catchpole.
Pictures, comments, and more on my website. Ep. 69: Vanessa’s Story | The Rare Life (therarelifepodcast.com)
As a total greenie in the IEP/504/educational advocacy realm, I was a bit surprised at the emotions that kept pounding in my heart. It was all familiar—the feeling of being a clueless parent in a new terrain as professionals used terms and procedures they assumed I understood. And of course, that familiar friend called grief.
It was all there in my first ever eligibility meeting. But unlike the early days of the NICU when I had similar emotions, this time I was compassionate and understanding with myself. I now know there are learning curves with every new stage, and I will come out on top.
In this episode, I speak to these emotions that came, as well as the happy ending to my first go at educational advocacy.
Links:
Ep. 59: Educational Advocacy + IEPs w/ Catherine Whitcher m.Ed
Find Catherine and her podcast here:
Website: www.catherinewhitcher.com
Facebook: www.facebook.com/catherinewhitcher
Instagram: www.instagram.com/catherinewhitcher
Podcast: www.catherinewhitcher.com/podcast
YouTube: www.youtube.com/catherinewhitcher
Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care.
In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph they experience when the opposite occurs. He also gives us much-needed reassurances in our role as our children’s caregivers.
Links:
Answer the Question of The Month.
Atypical Truth podcast.
The Lower Lights music group on Spotify.
Follow Madeline on Instagram @the_rare_life
Join the Facebook group Parents of Children with Rare Conditions.
Follow The Rare Life on Facebook.
Check out our appointment day merch!
Support the show and become a Patreon.
Kali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring.
In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow, and laughs at the fact that we as parents are dependent on the machines too, but at more of an emotional level.
Links:
Listen to Episode 13: Feeding Tubes.
BetterHelp, online counseling affiliate link.
Let’s be friends on Instagram! @the_rare_life
Follow The Rare Life podcast on Facebook.
Follow Falesha on:
Instagram, @falesha11
YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg
When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival.
In this episode, Falesha shares how much their lives have changed over the 16 months of her life, and the ways she became an expert of her daughter’s syndrome to help her have the best care possible.
Links:
Check out photos of Falesha + fam on the website here.
Let’s be friends on Instagram! @the_rare_life
Follow The Rare Life podcast on Facebook.
Follow Falesha on:
Instagram, @falesha11
YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg
When your child’s development or health take a turn for the worse, its totally logical for the parents to struggle. Apathy, sadness, overwhelm, darkness, most parents have experienced this reaction at one time or another. But what about when their health takes a turn for the better? What about dropping off therapies and specialists?
It seems like it would be a really straightforward response—happiness, relief, gratitude. And yet, as we’ve been receiving good news for our son, my brain has responded in confusing ways—relief, apathy, gratitude, darkness. Is something wrong with me? No, I’m beginning to realize this is a pretty common thing.
In this episode, I share the complex emotions I’ve experienced as Kimball’s health has been on the up, and the remarkable story of receiving nothing short of miraculous healing which spent me into a spiral.
Links:
Listen to Ep. 30 (the pt. 1 of this episode)
Listen to Ep. 53: Diagnosis Jealousy w/ Kara Ryska
Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons. After months of back-and-forth, she was finally able to secure the life-sustaining equipment her children required and deserved.
The difficulty in the system inspired her to join an organization dedicated to helping families like ours navigate the medical-financial world. She recently retired after 31 years in the realm.
In this episode, Gina opens up about how difficult the financial battles were, and gives us tons of ideas and resources to give our children the care they deserve.
Links:
Medical Home Portal (can search resources in your state. We talked about this one a lot)
Parent Center Hub (to find your state’s version of the Utah Parent Center)
Family Voices(to find State and local resource centers)
Medicaid Waivers (to find Medicaid Waivers by state - search 1915 (c) in the filter)
Children with Special Health Care Needs program (also referred to as Title 5 in episode, and includes Technology Dependent Waiver mentioned in episode)
Rare disease financial assistance program (may help with medical needs including respite)
UnitedHealthcare Children’s Foundation (can receive grants for costs not covered by insurance up to $5000)
Angel’s Hands Foundation (non-profit in Utah)
Ep. 24: Disability Advocacy w/ Jenny McLelland (great episode about affecting change in coverage policies)
Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly.
After 526 days spent inpatient with their son Westly, Erica and her husband Shaun are alleged pros. They learned pretty quickly what works well—and what doesn’t.
I met her a year ago when she sent me a copy of her Extended Stay Notebook, a spiral bound notebook meant for tracking medical happenings, and staying on top of things while at the hospital. She and her husband co-created it, in hopes of giving other parents in their situation the confidence and know-how needed to progress safely towards discharge.
In this episode, we chat about her inspiration for the creation of the notebook, and she gives us her top three pieces of advice as we navigate hospitalizations with our children.
Links:
Check out the Extended Stay Notebook by Erica and Shaun Ryan.
Listen toEp. 58: Medical Advocacy w/ Tameka Diaz.
Listen to Ep. 9: Taking Charge of Your Therapy and Medical Team.
Follow Erica on Instagram.
Follow me on Instagram.
Answer this month’s question.
Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications. Because of this, his mom Erica never fit in with the scores of other parents of children with Down syndrome. Add in a couple of rare sub-diagnoses, and it’s clear that Erica is certainly one of us.
In this episode, Erica shares a bit about Westley’s 455-day hospital stay which ended with a tough decision to switch him to comfort care and bring him home to spend the rest of his life cuddling and spending time with his three older brothers and parents. She also opens up about the complex grief she has been dealing with since his passing a few months ago, that brought both heartbreak and relief.
Links:
Check out pics of Erica + fam on the website.
Follow Erica on Instagram.
Follow me on Instagram.
Kimball’s confirmed blindness was one of the most torturous diagnoses to receive. And yet, I knew. I had known for months that he couldn’t see us. Our sliding glass door had his heart and his eyes. It had the smiles and the “goo”s far longer than a typical newborn. At 5 months, he hadn’t once looked at our faces. And the lack of visual connection was destroying my heart.
Listen to hear what it was like to have this fear confirmed at a time I was barely holding it together with everything else that we were dealing with. And learn what unexpected outcome and emotions have come with time.
Links:
Answer the Question of the Month
Follow meon Instagram
Listen to Ep. 5: A List of Diagnoses
Listen to Ep. 10: The Story of Sloan
Listen to Ep. 27: The Story of Gilbert
Listen to Ep. 44: Deafness
There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes.
Catherine Whitcher has been guiding parents and schools in creating IEPs that our children reach their full potential for over twenty years, and in this episode, she gives us some of her best tips.
Links:
Find Catherine and her podcast here:
Website: www.catherinewhitcher.com
Facebook: www.facebook.com/catherinewhitcher
Instagram: www.instagram.com/catherinewhitcher
Podcast: www.catherinewhitcher.com/podcast
YouTube: www.youtube.com/catherinewhitcher
Find Madeline on Instagram and Facebook.
You can also listen on my website, as well as see photos for parent episodes, request transcripts, make comments, answer the Question of the Month, and contact me.
Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a sleep study after much resistance, and found she had severe sleep apnea and required surgeries and machines to help her breathe at night. And most recently, they found epilepsy after another round of fighting doctors to give her daughter the tests to look into her concerns.
Because of these experiences, Tameka is passionate in empowering other parents to follow our gut and never stop fighting for them. In this episode, she shares each of these three experiences and gives us advice on fighting for our own medically-complex children. She also speaks to the emotional breaking point she hit from all the stress and the necessity for caring for ourselves, too.
Links:
Find Tameka on Instagram @thediazgirls.
Find me on Instagram @the_rare_life.
Evely was born without eyes, a rare condition called anophthalmia. When Tameka and her husband brought Evely home from the hospital, they thought blindness would be their one hurdle to navigate. They quickly learned this would not be the case; over the past five years of her life, she has been accumulating diagnosis after diagnosis of things like microcephaly and CHD. And although she is far from lacking in the medical diagnosis department, she is considered undiagnosed because she has no genetic syndrome to link it all together and give them an idea of what to look out for to keep her safe and healthy.
In this episode, Tameka shares what that has been like, as well as the ways that she is perfectly suited to be Evely’s mother, and the huge impact the pandemic has had on her mental health.
Related episodes: (you might also be interested in:)
Episode 5: A List of Diagnoses
Links:
Follow Tameka on Instagram @thediazgirls.
Follow Madeline on Instagram @the_rare_life.
Check out podcast merch.
Find photos of Tameka’s family on the website.
This season’s theme takes a little more explaining than the first three—but long story short, we’re cycling back through themes, starting with season 1’s theme! This was always the plan, and I’m super excited to recycle those themes with a new spin.
In this episode, you will hear more about the theme, and extended sneak peeks into first four episodes of season 4: a parent story episode, special topic episode, professional episode, and my solo episode. This season is another amazing one and I’m so excited to kick it off with you!
It’s time to celebrate another fantastic season of fantastic episodes! This season was full of gains and setbacks, from the size of our TRL community doubling, to a ridiculous number of last-minute guest cancellations due to hospitalizations. It’s been a rollercoaster for all involved and I’m grateful to all that have supported, including each of my loyal listeners.
In this episode, we get to listen to brief clips from each episode of season 3. We also hear from three listeners about what they learned from this season and what episode impacted them the most.
Join us in two weeks for season 4’s kickoff episode as I introduce the new theme and we get an extended sneak peek into the first four episodes coming your way.
Links:
Go catch up with Season 3’s episodes on the website.
Let’s be buds on Instagram.
Never miss an episode and follow TRL on Facebook.
Erica has been on both sides of the road—she grew up with medical complexities and now mothers two children with medical complexities. In this episode, she shares how this unique perspective has influenced her parenting and given her greater compassion for the struggles her mom faced.
She advises us in touchy subjects like ableism and oversharing while also emphasizing the importance of our imperfect love for our children. This episode is all about the parent-child relationship and celebrates that unconditional love and all the efforts we make on their behalf.
You might also like:
Ep. 50: The Sibling Perspective w/ Katherine Acton INSERT LINK
Links:
BetterHelp Counseling affiliate link.
Check out and answer the Question of the Month.
See photos of Erica and family.
Check out Erica’s podcast Atypical Truth.
Follow Erica’s podcast on Facebook.
Follow Ericaand Atypical Truth on Instagram.
Follow Madelineon Instagram.
Ep. 50: The Sibling Perspective w/Katherine Acton.
A few of my favorite disabled adults to follow on IG:
@ableismistrash
@wheelchair_rapunzel
@crutches_and_spice
@nina_tame
@wheel.life.in.the.wheel.world
@mikholmgren_inspiring_others
@open_future_learning
@riizzyray
@mumsonaroll
@karniliddell
@wheelchair_rapunzel
@shaneburcaw
@thecatchpoles
@lexxachexx
Have you ever seen another child and thought, “Man. If only my child had that diagnosis. Things would be so much easier because…”? We have too. It’s a totally ridiculous thing to feel jealousy over, but it’s something our brains do, nonetheless. Whether it’s the plethora of existing research, the resources available, or the name that most people know, there seems to be a lot to envy when it comes to more common diagnoses.
In this episode, Kara examines this and other strange things our brains do in response to trauma with her life coach lens. We also conclude that the antidote to this isolating mindset is finding other parents who we can relate with on other levels.
Links:
Check out Kara’s podcast and coaching program.
Follow Kara on Instagram.
Join the Facebook group Parents of Children with Rare Conditions.
Check out my website for more details about this episode.
When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks. In this episode, mom Kara shares what it was like to get that life-shattering news and to send her toddler off into intensive surgery to remove the mass.
Although the surgery was life-saving, it had its own major repercussions for Levi and his body’s functionality. Even now ten years post-op, Levi requires medications and interventions to keep him alive and well.
Links:
Kara’s coaching: https://www.kararyska.com/
Kara’s podcast: The Special Needs Mom Podcast
Follow Kara on Instagram: @kararyska
Follow me on Instagram: @the_rare_life
It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey. Watching him suffer will likely remain number one on that list forever. But a close second is the isolation. Having a child with disabilities is so very isolating. With his arrival, it became difficult to relate with my family and friends. We were suddenly worlds apart. And I know I’m not the only one! I’ve heard many parents talk about how lonely the journey can be.
But one of my favorite parts of the journey goes right along with the isolation from the world at large and that is connection! Because of being thrust into this “other” category, the deep and often instantaneous connection I’ve experienced with other parents in the same boat has been incredible.
In this solo episode, I share my constant battle between the two ends of the same stick and the affect it had on my journey.
Links:
Join We Are Brave Together community here: https://www.wearebravetogether.com/
Find me on Instagram here: https://www.instagram.com/the_rare_life/
Join the Facebook group for parents of rare here: https://www.facebook.com/groups/parentsofrare
Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day.
In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children.
Links
Answer the Question of the Month.
Have you ever felt inadequate to mother your child because of their diagnosis? In this episode, Katherine shares what it was like to find out her daughter Anna had achondroplasia—the most common form of dwarfism—during a 32-week ultrasound. As she researched the condition and faced the stigma she would help her daughter navigate throughout her life, she felt Anna would be better off adopted by adults with achondroplasia. Anna’s birth was just what she needed to out of that headspace. She found healing in just loving and snuggling her daughter and found her voice in advocating for her medical care. It was then that she discovered her competence in her role as Anna’s mom.
Links:
Check out our sponsor BetterHelp counseling and get 10% off here.
Listen to Emily Young’s episodes about her daughter Nora with achondroplasia here and here.
See photos of Katherine and her family on the website here.
In celebration of the first birthday of The Rare Life podcast, I share some behind-the-scenes in the creation of the show. I explain what it’s like to run the podcast while also being a stay-at-home mom still very much in the trenches of rare parenting. Per usual, I stay real and include both the amazing and not-so-amazing aspects of it all.
I also talk about the purpose of the podcast, what it means to me, and ways you can help me continue to produce powerful episodes of vulnerability and healing.
Links:
Help me produce episodes by donating on Patreon here.
Check out merch here.
Listen to Ep. 25: EMDR.
Listen to Still A Part of Us podcast.
Listen to Ep. 22: It’s All My Fault.
Does your medically-complex child have a sibling? Are you contemplating adding one to the picture? In this episode, Katie Taylor, the child life specialist behind the popular podcast Child Life on Call, answers listener-questions.
We talk about educating them about their sibling’s medical needs, helping them cope with the difficult and complex emotions that often arise, and how to know if/when it’s time to add a sibling to the picture.
Links:
Katie’s website and podcast, Child Life on Call: https://www.childlifepodcast.com/
Katie on Instagram: https://www.instagram.com/childlifeoncall/
The Rare Life on Instagram: https://www.instagram.com/the_rare_life/
Ep. 33 w/ Orley Bills, LCSW: https://therarelifepodcast.com/show-notes/ep-33-its-ok-be-angry-w-orley-bills-lcsw
Ep. 40: Wendy + Kimball: https://therarelifepodcast.com/show-notes/ep-40-wendy-sibling-experience
No Drama Discipline by Daniel Siegel: https://amzn.to/30wXqaq
Teleplay through Project Sunshine: https://projectsunshine.org/teleplay/
Taking Cara Babies (new baby help): https://takingcarababies.com/
The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown comes back to share three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram.
We unpack three of her—and her followers’—favorites:
1. I am not stronger than you.
2. What happens when it stops being cute?
3. I wish your pity were replaced with empathy.
Links:
Answer this month’s question: https://therarelifepodcast.com/
Follow Anna on IG: https://www.instagram.com/mothering_rare/
Follow me on IG: https://www.instagram.com/the_rare_life/
Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced with countless appointments, tube feedings, and perplexing medical issues, all while being extremely sleep-deprived—Emery frequently wakes up at night due to pain.
In this episode, Anna and I chat about the shift that occurred in her social circles after Emery’s arrival. She shares how she and Justen quickly became aware of their flaws and had to address them to withstand the constant stress. Anna also opens up about how the ways that Emery has made her a better person overall.
Links:
Our Sponsor, BetterHelp Counseling: https://www.betterhelp.com/therarelife
Anna on Instagram: https://www.instagram.com/mothering_rare/
Madeline on Instagram: https://www.instagram.com/the_rare_life/
Finding out Kimball was hard of hearing was one of the hardest diagnoses to receive. It was totally unexpected, and we grieved the lifelong implications of it.
In this episode, I share our journey with Kimball and his hearing loss, the controversial world we were thrown into, and the importance of following your child’s lead in determining what language(s) to give them.
I also open up about the traumatizing and heartbreaking interactions with other parents of children with deafness because of our decision to give our son Listening Spoken Language instead of American Sign Language and talk about the need for more inclusion in the deaf community.
It is time we pull together and support each other in our journeys, regardless of our differing opinions and choices on behalf of our child and family.
This is a fantastic episode for all within this community, as well as the curious wanting a peek inside this unseen world.
Links:
Donate via Patreon: https://www.patreon.com/therarelifepodcast
Ep. 5: A List of Diagnoses: https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode
Ep. 12: Language Development w/ Angie: https://therarelifepodcast.com/show-notes/ep-12-3-fun-ways-facilitate-language-development-w-hearing-specialist-angie
Flintstones video: https://www.youtube.com/watch?v=Va1wrnsMve0
Join the Inclusive Parents of Deaf and Hard of Hearing FB group: https://www.facebook.com/groups/226590729019924
My story on All About Audiology podcast: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/
Emotional safety is the security that I can share what is in my heart with my partner. Every relationship needs that, but perhaps none more than in the relationship of special needs parents. So much is asked of us, and there is often grief to work through. Being able to feel safe in sharing the deepest, darkest places of our hearts is critical.
In our conversation, Dr. Matt Townsend teaches us about emotional safety, and how to improve it if your partner is prone to shutting down and detaching when emotions are high. He explains the why of detachment and how we can respectfully help our spouse feel emotionally safe with us, and in return give us the emotional safety we long for.
This episode is full of advice for nurturing our relationships and mastering the art of communication.
Links:
Purchase his book here: https://amzn.to/3mcYjNY
Find Matt Townsend here: https://matttownsend.com/
Follow him on Instagram here: https://www.instagram.com/drmatttownsend/
Find him on FB here: https://www.facebook.com/mattmtownsend
When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world. She shares some truly heartwarming stories of inclusion and the surprising effects of putting LED lights on the wheels of his wheelchair.
We also dive into the dynamics of our relationships with friends and family that shift when we add our medically-complex children to the picture. She shares advice on how to keep closeness with them and the importance of finding your people that can really understand your life (ahem, us!).
This conversation was a fun one and I hope you enjoy it as much as we did!
Links:
Follow Effie and Once Upon a Gene podcast on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me and The Rare Life on Instagram: https://www.instagram.com/the_rare_life/
Ep. 39: Inclusive Children’s Books INSERT LINK
Gary Gigantic Dream by Dr. Nicole Julia: https://amzn.to/35qAXyR
When Charley Met Emma by Amy Webb: https://amzn.to/2Lz8z6n
Friendship Circle: https://www.friendshipcircle.org/get-involved/families/
LED lights for wheels on wheelchair: https://amzn.to/35jzvOq
Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.
Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!
Links
Answer the Q of the Month and see photos of Effie + fam: https://therarelifepodcast.com/
Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast
Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/
Follow me on Instagram: https://www.instagram.com/the_rare_life/
It felt like Wendy and I were drowning right beside each other in the same stormy water, and I couldn’t save her. Wendy has struggled right along with me since Kimball’s arrival in our family, and it’s something that has improved with time.
In this episode, I share all about that as well as what Wendy has taught me along the way. I also tell stories of Wendy’s hysterical schemes with Kimball including her infamous “bro time” and the boarding school she hopes to create for “buddy boys like Kimball” when she grows up.
Links:
Child Life on Call podcast: https://www.childlifepodcast.com/
Child life on IG: https://www.instagram.com/childlifeoncall/
Inclusion: What does it mean to you? If you’re in the same parenting corner I am, it probably means a whole lot. What would we give to create a more inclusive and loving world for our children?
There are many ways of doing that, and one of the most effective ways is in children’s literature. So many foundations for our lives were laid as little children peering at books read to us by our parents.
In this episode, authors Macy Gilson, Jessica Parham, and Megan DeJarnett share their inspiration behind their inclusive children’s books. We talk about the importance of inclusion and love, and how we can bring these conversations outside of our hidden world of disability and special needs as we gift others in our communities these books and others like them.
Links:
Inclusive Books | The Rare Life (therarelifepodcast.com)
Madeline Cheney (host) IG: https://www.instagram.com/the_rare_life/
Good to be Me (10% off this weekend):
No Such Thing as Normal (10% off this weekend with code therarelife10):
Kindness is Golden:
The Able Fables by Nicole Julia:
Social media can benefit many kinds of people, but perhaps none so much as special needs parents. So many of us have feelings of isolation from friends and family as we are thrown into a world they don’t understand. Enter other parents who get it.
Social media can connect us with other parents navigating similar medical and other needs. We can feel seen and heard and get ideas on how to make our lives easier.
In this episode, Jess Wolff shares her unique perspective on Instagram, with over 40k followers and a tight-knit community of parents that have made the two years with her daughter Lily so much more doable. In it we wonder together how special needs parents did it all in a world before social media existed.
Links:
Follow Jess on Instagram @LilysLittleLungs here: https://www.instagram.com/lilyslittlelungs/
Follow me on Instagram @the_rare_life here: https://www.instagram.com/the_rare_life/
Join the FB group Parents of Children with Rare Medical Conditions here: https://www.facebook.com/groups/parentsofrare
Jenny’s episodes: https://therarelifepodcast.com/show-notes/ep-23-story-jamesand https://therarelifepodcast.com/show-notes/ep-24-disability-advocacy-state-level-w-jenny-mclelland
Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister known as Autumn passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth.
Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her.
Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to A’s death and Lily’s prematurity.
Links:
Follow Jess here: https://www.instagram.com/lilyslittlelungs/
Follow me here: https://www.instagram.com/the_rare_life/
Answer this month’s question here: https://therarelifepodcast.com/
Still Apart of Us, a Podcast about Stillbirth and Infant Loss: https://stillapartofus.com/
In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions. This is a tribute to all children with rare diseases everywhere, and their parents who love them more than life.
These twelve moms tell us a bit about their child’s diagnosis, what it was like to find out about it, and what they want the world to know about their child.
And its gold.
In their 2-4 minute segments, they capture a variety of perspectives and unique situations, but they all have one thing in common; they love their children profoundly.
Links:
Join the FB group Parents of Children with Rare Conditions: https://www.facebook.com/groups/parentsofrare/permalink/419788272495139/?comment_id=419995795807720&reply_comment_id=420670799073553
FreeArm Tube Feeding Assistant: https://freearmcare.com/
Instagram accounts:
Madeline Cheney, host: @the_rare_life
Eliza +Lorenza: @chargeonwardandupwards
Harper + Morgan: @hustleheartsandhospitals
Beau + Kim: @beaus.journey
William + Bethany: @joyfulblondie
Isaac + Brianna: @brianna.alcox
Freeman + Misti: @freearm.tube.feeding.assistant
Jade + Phylicia: @shortandsweet.pnw
Mauve + Morgan: @mauvevalentina
Season 3 is upon us! I am so excited to share with you the amazing guests and topics we have coming your way!
This season’s theme is all about how our relationships have been affected by our children—with our partners, with extended family, with our other children, with friends, with the world at large.
In this episode, I share a bit about the first four episodes of season 3 (including a special collaborative episode releasing on Rare Disease Day), and I share extended clips of each of them.
This season is going to be rockin’ and I hope you’re as excited as I am!
Links: Preface episode: https://therarelifepodcast.com/show-notes/preface
Follow me on IG here: https://www.instagram.com/the_rare_life/
And on FB here: https://www.facebook.com/The-Rare-Life-Podcast-100145211681157
Another amazing season has come and gone! In this episode, we celebrate relatable episodes, listen to the takeaways and thoughts of three parent-listeners, and I share my number one goal for the upcoming year.
My heart is brimming with gratitude for Season 2 and all the stellar guests I had the honor of interviewing and sharing with you.
We’ll be back February 18th to kick off Season 3! We will discuss the new (awesome) theme and get a glimpse into the upcoming episodes and guests.
Donate: https://www.patreon.com/therarelifepodcast
Ep. 22: Its All My Fault: https://therarelifepodcast.com/show-notes/ep-22-its-all-my-fault
Ep. 23 w/ Jenny McLelland: https://therarelifepodcast.com/show-notes/ep-23-story-james
Ep. 29 w/ Claudia Taboada: https://therarelifepodcast.com/show-notes/ep-29-resilient-mindset-w-claudia-taboada
Ep. 30: You Are What Your Child Needs: https://therarelifepodcast.com/show-notes/ep-30-you-are-exactly-what-your-child-needs
The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital.
Sometimes he does this by utilizing his training as a certified grief counselor and LCSW and helping them sort through the hugely painful emotions that arise. Other times he gives parents a break from the heaviness and just chats about superhero movies. Regardless of the mode, Orley takes his job of supporting parents very seriously.
In this episode, Orley shares a few of the gems he’s picked up in the past 13 years in that role. He shares the necessity of creating a care plan to guide us in decision making for our children. We also chat about leaning into the painful emotions instead of stifling them, to cope with them in a healthy way.
For comments, pictures, question of the month, and more, visit the website: Ep. 33: It’s OK to be Angry, w/ Orley Bills, LCSW | The Rare Life (therarelifepodcast.com)
You matter. You deserve self-care. What’s yourself-care like right now? Do you make conscience decisions about filling yourself with fulfillment and peace, or are you numbing out in front of the TV before collapsing into bed?
Regardless of your current self-care practices (or lack thereof), this episode is for you.
Especially as parents of children with extra needs, we merit extra care.
In this episode, Jessica differentiates between self-sooth and self-care, and responds to the “I don’t have time” excuse. We chat about some of her favorite forms of self-care like running and deep breathing, and she teaches us about the concept of false guilt.
As you’ll hear over and over throughout the episode, the art of self-care is vital. And I promise you won’t regret the time and care dedicated to yourself.
Answer January’s question: https://therarelifepodcast.com/
The Calm App: https://www.calm.com/
Marriage 365: https://marriage365.com/
For pictures, comments, question of the month, and more, check out the website: Ep. 32: Self-Care w/ Jessica Patay | The Rare Life (therarelifepodcast.com)
17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating. His parents keep their kitchen pantry locked up to prevent him from consuming dangerous amounts of food in search for the satisfaction that will never come. As his mom Jessica Patay relates in the episode, it’s the ultimate combination because Prader -Willi syndrome also causes obsessive behaviors and a slow metabolism. In their home, food is no joke.
Jessica shares her view on cyclical grief in special needs parenthood, as well as things she has learned and gained from her challenges with Ryan.
One of those gains is the community and nonprofit organization We Are Brave Together, which offers workshops, support groups, and retreats for special needs moms. Jessica has put her heart into spreading the message that we are not alone.
Follow WABT on Instagram here: https://www.instagram.com/wearebravetogether/
Join the WABT Community: https://www.wearebravetogether.com/connect.html
Check out BetterHelp: https://www.betterhelp.com/therarelife
For pictures, my written thoughts, comments, and more, visit my website: Ep. 31: The story of Ryan | The Rare Life (therarelifepodcast.com)
Our fierce love for our children is our superpower—it’s what makes us just what they need! But love can also be a double-edged sword of joy and agony.
Listen to this episode to find out how my son’s neurosurgeon reacted when I showed him a homemade cervical collar—a medical device to protect his spine from compression, an extremely dangerous complication.
Love can push us out of our comfort zone and have us attempting the seemingly impossible—whether that is in the form of advocating for our children, or simply choosing to get out of bed.
We are enough. Our love for our children is enough.
Becoming aware of our thoughts and emotions is the first step in developing a resilient mindset. For life-coach and author Claudia Taboada, walking her dog each day was the first step in this life-changing awareness. She was able to process her stressors related to her special-needs son and create solutions to alleviate them.
In this episode, Claudia shares her top techniques in creating and nurturing an empowered mindset, a must-have when caring for children with different needs.
Claudia’s book Burnout to Unstoppable: https://amzn.to/2GQyXXk
Claudia on IG: https://www.instagram.com/badassautismmoma/
Join Burnout to Unstoppable Moms FB group here: https://www.facebook.com/groups/burnouttounstoppable
Submit Season 2 takeaways here: https://www.speakpipe.com/therarelife
When Lillian died four years ago, Anna’s heart was ripped out. When her son Gilbert was born with severe birth defects three years after, her grief evolved and has in many ways intensified.
In this episode, Anna shares Lillian’s story of being stillborn at 35-weeks, and how that has interacted with her grief over Ghillie’s brain injuries and a second round of lost milestones with her child. She also shares advice and speaks out against the stigma often associated with death and those that grieve.
Record your Season 2 takeaways here: https://www.speakpipe.com/therarelife
Donate to Lillian’s Stillbirth Research Fund here: https://philanthropy.mayoclinic.org/donateMC
In dropdown menu that says, “Designate to”, select “other.” Fill in the field with “Lillian Ruth Stanfield Stillbirth Research Fund.”
Follow Anna on Instagram here: https://www.instagram.com/anna.margarets/
The Gift of Imperfections by Brene Brown: https://amzn.to/3nJOIQv
When Ghillie was born at 25 weeks, Anna and her husband thought their biggest hurdle would be his micro preemie size and lungs. It wasn’t until after he was examined in the NICU that they learned about his in-utero brain injury which has life-long affects.
In this episode, Anna shares Gilbert’s birth and agonizing NICU stay during which it was suggested they remove him from life-support, hugely triggering to their tragic past with child death.
She also shares the way she has found her voice in public as they receive stares and ignorant comments in response to his extensive medical equipment.
Link to Flintstones Hearing Loss Simulation: https://www.youtube.com/watch?v=Va1wrnsMve0
Anna’s Instagram account: https://www.instagram.com/anna.margarets/
BetterHelp affiliate link: https://www.betterhelp.com/therarelife
For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant.
Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are.
In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced.
Links:
Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html
Listen to the Preface Episode here:
https://therarelifepodcast.com/show-notes/preface
Ep. 13: Feeding Tube Adventures:
https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures
Ep. 5: A List of Diagnoses:
https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode
What comes to mind when you hear the word “trauma”? For many parents of children with complex medical needs, it’s a very real part of our lives.
In this episode, guest Rosey Shaefermeyer answers the questions:
1. What is trauma?
2. What are some red flags that we might need professional help working through our trauma?
3. What is EMDR therapy and how does it work?
4. What can we do if we don’t have the time or money for traditional therapy?
BetterHelp affiliate link: https://www.betterhelp.com/therarelife
Find a professional offering EMDR in your area here: https://www.emdria.org/find-a-therapist/
Video about EMDR: https://www.emdria.org/about-emdr-therapy/
The Body Keeps the Score: https://amzn.to/30HdczY
Answer this month’s question: https://therarelifepodcast.com/
This episode is an invitation to all of us to join the army of parents like Jenny in improving policies that directly affect our loved ones and others with disabilities.
While you’re listening, maybe an issue you’ve run into will pop into your head that you want to tackle, or maybe you can tuck this episode in your back pocket in case you run into issues that matter to you in the future.
In this episode, Jenny shares her victory in making in-home nursing more accessible to trach and ventilator-dependent California residents by lobbying at the state level.
She also teaches us how we can get our hands wet in state-level advocacy, beginning with issues that matter to us personally.
These are civil rights issues. People with disabilities matter.
As a former police officer, Jenny was prepared for the extreme stress of living 200 miles away from her baby in the hospital for nine-months as he fought for his life threatened by severe birth defects as a result of his extremely rare genetic syndrome (one that her 9-year-old and my 2-year-old son share).
In this episode, she hilariously recounts describes her memo-writing for each medical appointment, her bottling up of emotions to hold it together, and how refreshingly normalcy of arguments you can expect between any 9-year old boy and his mom.
For comments, pictures, and more check out the my website, https://therarelifepodcast.com.
Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life.
It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes.
Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it.
Joining in a cause to uplift and help others in their struggles can be very healing as Tara Docekal, founder of the non-profit organization Mightiest Mamas, knows well.
In this episode, Tara inspires us to look beyond our own challenges and trauma to serve others. She shares how a one-time NICU and antepartum care Christmas gifting event turned into the beginning of her cherished Mightiest Mamas organization.
She gives super practical advice for those wanting to give back in similar ways.
Tara also explains how meaningful it has been to see the impact of their acts of kindness.
Answer question of the month: therarelifepodcast.com
To donate: [email protected]
Donate items from Amazon list here.
More about Mightiest Mamas: http://www.mightiestmamas.org/
Mightiest Mamas FB Page: https://www.facebook.com/mightiestmamas/
Grieving the loss of a loved one before they’re gone has a name: anticipatory grief. In Katie’s special topic episode, she shares all about her experience living with the pain that she and her family will outlive their precious daughter Claire.
Although her grief was all-encompassing in the early days after receiving her daughter’s prognosis, Katie has learned to carry her grief and even thrive.
In her witty no-nonsense fashion, she shares advice for others who also experience anticipatory grief as well as advice on how to best support friends and family experiencing anticipatory grief.
Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal.
In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood.
She also shares ways that she has become a stronger, more gratitude-filled and empathetic person because of Claire and the lethal nature of her diagnosis.
Trigger warning concerning childhood death.
Season 2 is finally here! I’ve been really looking forward to Season 2 because I have some amazing guests to share and the theme is dynamite. We will be focusing on our personal journey and evolution as parents!
In this kickoff episode, I share summaries and audio clips of the first four episodes in Season 2 so you can really whet your appetite for the good stuff coming!
Listen to the Preface episode here: https://therarelifepodcast.com/show-notes/preface
Visit my website for the full transcript and comments! https://therarelifepodcast.com/
TRANSCRIPT:
Madeline Cheney 0:00
Hi! You're listening to The Rare Life. I'm your host Madeline Cheney, and today I'm thrilled to kick off Season 2. As a reminder, each season is structured around themes. If you want a little more information about that and you haven't already, please go to the preface episode. That is where I explain a lot more about the podcast, the purpose of it and how it works, and a little bit of getting to know you. In a nutshell, each season's theme is a loose theme that mostly guides the topics for the professional episodes, my solo episodes, and parents' special topic episodes. And the story episodes are much looser in their themes. So Season 2's theme is our personal journey. It is all about the way that our children and their medical needs, and their special needs have affected us as people. I'm really excited about this topic. I think it's really fascinating to explore how it's changed us, for better or for worse, and most often a combination of the two. A few episode topics include grief, self-care, trauma counseling, and mindfulness. Per tradition, I will give you a glimpse into the first four episodes of Season 2. Our first parent story episode is The Story of Claire with her mom, Katie. Claire has a very rare and lethal form of dwarfism. Among other things, in this episode, Katie shares the heart-wrenching experience of being told that their daughter Claire would not survive childhood. Katie is hilarious and she's real, and I really enjoyed this conversation with her. Her special topic episode is the following episode, and she shares all about anticipatory grief as she has experienced with her daughter...
Well that’s a wrap! Reminisce about the amazing episodes from Season 1. We’ll listen to the season in the form of short audio clips, and I’ll share feedback about a few episodes from Season 1 from unexpected (but amazing!) audience members.
Thank you for an epic first season! We’ll be back October 15thwith Season 2’s kickoff episode!
Link to my episode in All About Audiology: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/
Facebook Page for The Rare Life: https://www.facebook.com/The-Rare-Life-Podcast-100145211681157/?view_public_for=100145211681157
Follow me on IG here: https://www.instagram.com/the_rare_life/
From food play to food chaining, there are many practical strategies in this episode, as explained by speech language pathologist Kimberly Hirte.
She is dedicated to helping what she calls “selective eaters” eat an increased quantity and variety of foods while fostering a fun and secure mealtime experience.
LINKS:
Vegetable cutters: https://amzn.to/2C3c2Wl
Adjustable Highchair (Tripp Trap): https://amzn.to/3gRl6wa
Straw trainer cup: https://amzn.to/2CkQaFZ
Divided suction plate: https://amzn.to/38KIcBS
More on the division of responsibility in feeding: https://www.ellynsatterinstitute.org/how-to-feed/the-division-of-responsibility-in-feeding/
Short and nubby baby spoons: https://amzn.to/32cL0Xl
Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there. In this special topic episode, they share things they’ve learned along their 8-year journey with their son Miller.
This episode has lessons to be learned from for parents of every kind, but especially those that long to improve their communication with children for whom spoken language just isn’t an option.
Their advice can be summed up in 3 aspects:
1. Be creative.
2. Be flexible.
3. Be persistent
Etsy PECS communication systems:
General PECS etsy page: https://www.etsy.com/search?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs+cards&ref=return_to_search&organic_search_click=1&explicit=1&q=pecs+cards
Printable version ($5):
Portable device ($17+):https://www.etsy.com/listing/766745671/aac-portable-device-waterproof?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs&ref=sr_gallery-1-2&organic_search_click=1
For pictures, comments, and the full transcript, visit the website: https://therarelifepodcast.com/show-notes/ep-15-communicating-w-nonverbal-child
TRANSCRIPT:
Candace 0:00
"No one thing has been the ideal form of communication for him. So he uses several forms of communication which is intense as a parent."
Madeline Cheney 0:13
Hi, I'm Madeline Cheney and you are listening to Episode 15 of The Rare Life. Today I have a special topic episode from Candace and Shawn. They shared all about their son Miller with Angelman syndrome last week in Episode 13. As we talked about in that episode, their number one challenge with Miller is his non verbal ism. So today they have chosen to share things that they have learned in trying to communicate with him. They sum it up in three aspects: be creative, be flexible, and be persistent. And they have some really great insight. So whether you have a child that is nonverbal, you know a child that is nonverbal, or you're curious about what it is like, join us. Let's dive in.
Welcome back, Candace and Shawn.
Candace 1:06
Hello!
Madeline Cheney 1:08
Today for our special topic, we're talking about communicating with a nonverbal child and things that you have learned in your journey with Miller thus far. And so, what kind of tip or advice would you like to give to parents that may be also in that similar situation with a nonverbal child?
Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures.
In this conversation, Candace and Shawn share these challenges and solutions they’ve discovered in the course of his 8 years of life. Candace shares her journey in finding Miller’s diagnosis at almost 2 years old whilst going through a divorce from his bio-dad, and Shawn’s experience in entering their lives and being totally and completely accepting of Miller and his differences.
We also talk about the prospect of curing Angelman syndrome, their choice to call Miller “disabled” instead of “special needs”, and the isolation that comes with having a child that has differences and challenges that few understand.
----
Mini-doc about Miller and family: https://www.youtube.com/watch?v=9iQLAHobfAU
Donate to FAST, and help fund a cure here: https://cureangelman.org/
Learn more about resources for children with Angelman here: https://www.angelman.org/
---
For images, comments, the full transcript and more, visit the website: https://therarelifepodcast.com/
TRANSCRIPT:
Shawn 0:00
"And then as soon as you say chromosomes, they're like Oh, so like Down syndrome. And I'm like No."
Madeline Cheney 0:08
Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Now that we are into September, we have a new question of the month. This question of the month is a little more complex. It is: What is your favorite toy/tool/supply for (fill in the blank). This could be for dwarfism, hearing loss, vision loss, autism, low muscle tone, trachs, etc, etc, etc. So when you go to fill out the question, there will be a field that you can fill in to tell us what category your favorite tool, toy, or supply is for. And so I think it'll be really great for us to be able to share what we have learned as far as things that have been helpful. And this will be also a great thing for us to go to, I think, for birthday ideas and Christmas ideas, I'm really excited to see what you guys say. So head over to the website, therarelifepodcast.com both to answer September's question of the month and to look through the answers from last month. This is Episode 14: The story of Miller. This is our first ever episode with both parents in the interview, and I really loved it. It was great to have both perspectives and I'm hoping to be able to have that be more of the norm now so that this truly can be a podcast for both parents of children with rare conditions. Today we have Candace and Shawn talking about their son Miller. They talk about the challenges that come with having an eight year old with Angelman syndrome, like navigating non-verbalism, sleep issues, and seizures. They also talk about the prospect of a cure for Angelman syndrome, and what that would mean for them and Miller. Candace also shares about receiving Miller's diagnosis when he was almost two years old and while she was going through a divorce. Candace and Shawn have five children between them, Miller being the youngest. Shawn teaches English as a second language and he also has a background in film....
“Tubie”: Do you know what it means? Before Kimball came along, I hadn’t a clue what the term meant (a word among many I learned courtesy of my medically complex parent status). Whether you know that term because you have a child known as a “tubie” or “tubie-graduate”, or you are only now catching on to what it means because of contextual clues, this episode is meant for you.
In this solo episode, I share my intense love/hate relationship with my son’s feeding tube and give a little peek into our personal experiences with it, in all it’s convenient, hellish glory. I also share a bit of what it was like for me to exclusively pump for Kimball’s nutrition.
For comments, pictures, and the full transcript, visit the website. https://therarelifepodcast.com
TRANSCRIPT:
Madeline Cheney
"I love his feeding tube. I hate his feeding tube. But I love his feeding tube because it kept my son alive."
Hi, you're listening to Episode 13 of The Rare Life. I'm your host Madeline Cheney, and I have a solo episode for you today. I have chosen to give an entire episode about Kimball's feeding journey. This is actually a topic I don't love thinking about or talking about because it has been something I don't try to remember. I have a lot of hard, traumatic memories from trying to feed Kimball. He is a G-tube graduate. And he now is able to eat by mouth, which we're really excited about. At two years old, he still has his G-tube button as needed, that's for surgeries. It's also been like really helpful when Kimball is sick. So let's talk feeding tubes, both for people who can relate and have children who have been tube-fed or still are tube-fed. And for those who wonder what it's like to have a child with a feeding tube.
So, Kimball needed a feeding tube straight off, right after he was born. He never has breastfed and it took him a long time before he would take a bottle because of his nose and I've I've talked about this in previous episodes, but really quick just as a review, because he does no nose bone, his nasal airway is really restricted like he has hardly any opening in his nares (which is a fancy word for nostrils). And so before he was born, we kind of knew that that was a possibility for him to have feeding issues, because babies need to breathe through their nose while they're taking a bottle or nursing. And so that is kind of his main reason for needing a tube. Later I kind of--that's what they always blamed it on. But later I kind of suspected also that his low muscle tone had a lot to do with his inability to take a bottle because I think he just tired out really fast. And as he got bigger, and a little bit stronger and older, he was able to take a bottle really well, but I still noticed his nose didn't seem any more open, like he still had a lot of issues with his nose. And so I was like, I think that maybe more of his muscle tone. So anyway, that's kind of my suspect, but we don't really know. But I think it's a combination of his airway and his low muscle tone.
So, when he was born, he was given an OG tube, and I looked at what that stands for, and I'm not even going to read it because it jibberish it's medical stuff but it's just a feeding tube that--typically they go in through the nose called it's called an NG tube. But for Kimball, he was given an OG tube going through his mouth so just threaded in through the side of his mouth and then down his throat right into his stomach. And so that is a pretty rare thing for kids to have I think because it's less pleasant so that goes right in through your mouth and it's harder to keep in but he didn't have an NG tube because of his really narrow airway to begin with. And so he had an OG tube in the NICU....
Learn why these three everyday activities help children develop language and discover fun tips to tweak them in order to enrich your child’s access to language even more.
Hearing specialist Angie works as an in-home therapist for the Utah School for the Deaf with the mission to give children with hearing loss access to language. Turns out the three most powerful tools are ones that apply to all children, typically hearing or not.
Contact form for Season 1 takeaway: https://therarelifepodcast.com/contact
For images, comments, full transcript, and more, visit the website: https://therarelifepodcast.com/show-notes/ep-12-3-fun-ways-facilitate-language-development-w-hearing-specialist-angie
Books:
Board Books by Sandra Boynton: https://amzn.to/38UEQfT
Dr. Suess 4 Board Book Bundle: https://amzn.to/2Oo71KF
Brown Bear by Eric Carl: https://amzn.to/2OrAeo5
The Very Busy Spider by Eric Carl: https://amzn.to/2OlqhbM
From Head to Toe by Eric Carl: https://amzn.to/3gZH5kW
Flap books:
Where’s Spot? By Eric Hill: https://amzn.to/3fplyBE
Dear Zoo by Rod Campbell: https://amzn.to/2CDe0gk
Toys:
Cargo Truck by Plan Toys: https://amzn.to/38UDS3j
Baby Dolls by Melissa and Doug: https://amzn.to/3eqI7EJ
Plastic balls, set of 50: https://amzn.to/3evqWC7
Vehicle Puzzles by Melissa and Doug: https://amzn.to/304A4Za
Super Simple Songs (via YouTube): https://www.youtube.com/user/SuperSimpleSongs
(also can be found on Spotify)
Lego Duplos: https://amzn.to/2Zu5zNm
Mr. Potato Head: https://amzn.to/3gZHtzU
Building Blocks by Melissa and Doug: https://amzn.to/3fv0ud4
Plastic Animals: https://amzn.to/3h0evjf
Wooden sensory balls by Plan Toys: https://amzn.to/32jJJxI
TRANSCRIPT:
Angie
You'll always have that next milestone in mind. Celebrate the milestones that they're doing now and don't give up.
Madeline Cheney
Hi, you're listening to the rare life. I'm your host Madeline Cheney. And today we have episode 12. A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes...
---
For the full transcript, visit the website.
Do you totally love your child’s intervention tribe? Or do you see room for improvement in that department? Kari is an exceptional example of opening her heart and home to her tribe and is so inspiring. In this episode, she shares all about her deep love and appreciation for professionals that have come together for the good of her daughter. She also shares a few strategies she’s used to keep up with doing “all the things” that her tribe recommends.
Shoutout to amazing therapists/doctors/nurses/specialists everywhere that support and love our children almost as much as we do.
Book “Special” by Melanie Dimmitt: https://amzn.to/2AX4GDh
Share a takeaway from Season 1 here: https://therarelifepodcast.com/contact
Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails. Sloan has a clinical diagnosis of CHARGE syndrome, a rare disorder affecting various parts of the body.
In this episode, Kari shares what life is like with the dual sensory loss, her birth story, and how her dreams for her daughter have shifted in meaningful ways.
Kari and Sloan’s GoFundMe: https://www.gofundme.com/f/for-kari-and-sloan
Answer August’s question of the month: https://therarelifepodcast.com/
July responses to question of the month: https://therarelifepodcast.com/q-of-the-month/appointment-day-hacks
Sensory swing: https://amzn.to/3kbb7EE
Check out the website for pictures, comments, the full transcript, and more. https://therarelifepodcast.com/show-notes/ep-10-story-sloan
TRANSCRIPT:
Madeline Cheney
A quick update before we get to Episode 10. I have a message to read from Kari Harbath who I will chat with in this episode: "I'm saddened to say Aaron, Sloan's dad, passed away on June 2. This loss has been devastating for our family. And as you'll hear throughout the episode, Aaron's claim to fame will always be his amazing entry into fatherhood. Sloan is lucky to call him her dad. He was an extremely dedicated and loving father and we all love and miss him dearly." To Kari, Aaron, and Sloane, I'm shattered for your loss and in awe at the fierce love that you have for each other. You can support Kari and Sloan monetarily by donating to their GoFundMe. The link is in the show notes. And now let's continue on to the episode.
Kari 0:00
Nothing has been very normal around here! But that's cool. It's cool. What is normal, right?
Madeline Cheney 0:04
Hi! You're listening to Episode 10 of The Rare Life. I'm your host Madeline Cheney. And now that we are in August, we have a new question of the month. Thank you so much for everyone who contributed to July's question of the month. To see those answers, head over to the website, therarelifepodcast.com, there will be a link to that in the show notes. This month's question is: what has helped you follow through on advice from your child's therapist and medical team? One more time: what has helped you follow through on advice from your child's therapist and medical team? I love this question. It goes along very well with Kari's special topic episode which comes out next week. So head on over to answer that question. I'd love to hear your input. Today you get to listen in on my conversation with mom Kari. She is mother to Sloan, who just turned one. She has CHARGE syndrome, which is an acronym for the different birth defects that often comes along with that. In this episode, we mostly talk about Sloan's profound deaf-blindness, which is the most life altering birth defect that she has. We also talk about her birth story, and how her dreams for her daughter has shifted in awesome ways. And as a caution, her birth story does contain possible triggers. So proceed with caution. We met at a deafblindness parent conference. It was really great to connect with with her and her husband, and we even found out we have the same PT for our children....
Take your rightful place at the head of your child’s care team and watch everyone benefit from it. Initially, parents often must surrender a lot of their control to experts when their child has extra needs.
In this solo episode, I share my own evolution in owning my leadership role in my son’s intervention. I also detail strategies I’ve found helpful and revolutionary in really growing into the role of leader in his therapy team in a way that truly benefits my child. This includes simple things like calling your provider by name, minimizing the care team and tasks, and customizing goals to you and your child.
This episode can be beneficial both to new and more seasoned parents, as well as therapists and medical professionals.
Contact form for Season 1 takeaway: https://therarelifepodcast.com/contact
Essentialism by Greg McKeown: https://amzn.to/3evRnrf
For comments, images, full transcript, and more, you can visit the website. https://therarelifepodcast.com/show-notes/ep-9-3-ways-charge-your-therapy-and-medical-team
TRANSCRIPT
Madeline Cheney 0:00
"Now it feels more like they are educated advisors to me."
Hi, you're listening to The Rare Life. Today I have a solo episode for you. I chose to talk about taking charge of your medical and therapy team.
A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes. For the Season 1 finale episode in September I will read a few of these and respond.
Alright, back to taking charge; Kimball has had many therapies in his short life, as far as he has had feeding therapy, physical therapy hearing specialist, a vision specialist, a deaf blind specialist, a developmental specialist, as well as tons of medical specialists. So, this is a huge deal to me. And I will kind of outline where I'm going with this you have a little roadmap. First I will talk about the evolution of my taking charge-ness and I have three tips for taking charge. I will talk about befriending your therapist and medical team, prioritizing, and letting them help you. So let's dive right in....
FIG is an acronym to guide advocacy for your child. They are the three considerations you should take when advocating for your child, according to audiologist Dr. Lilach Saperstein. FIG stands for:
F: familiarity
I: intention
G: goal
For the full transcript, comments, images, and more visit the website: https://therarelifepodcast.com/show-notes/ep-8-advocating-using-fig-method-dr-saperstein
My journey with Kimball’s hearing loss on Dr. Saperstein’s podcast: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/
Check out Dr. Saperstein’s podcast: https://allaboutaudiology.com/
Link to get a workbook with the FIG method: https://allaboutaudiology.com/fig/
TRANSCRIPT:
Lilach
In this case you do need to bring all that mama bear energy and papa bear you know guardian energy. Come and get it like this is the time to bring out all of that energy and fight for your kid. But like save it when it's a kid on the playground who doesn't get it.
Madeline Cheney
Hi, I'm your host Madeline Cheney and you're listening to episode 8 of The Rare Life: advocating for your child using the fig method with Dr. Lilach Saperstein. Dr. Saperstein created what she calls the FIG method for advocating for your child. We will obviously get into more details about it but just an overview, FIG is an acronym. So each letter in fig stands for a consideration you should take when knowing how and if you should advocate for your child. F stands for familiarity. I stands for intent, and G stands for goal. I really appreciate this practical approach to something as complex and emotionally charged as advocacy. This is a great follow up to last week's special topic episode with mom Emily as she talked about her own experience and educating others about her daughter Nora. These episodes really work well together...
Emily’s mission is to help the others see past her daughter Nora’s differences and treat her like anyone else; and she has had plenty of experience doing so.
In this episode, she shares things she’s learned from it, like when to speak up and when to drop it and how to set the example for siblings and eventually Nora to be able to speak up on her behalf.
For a full transcript, images, comments, and more visit the website: https://therarelifepodcast.com/show-notes/ep-7-educating-others-about-your-childs-differences-w-emily-young
TRANSCRIPT:
Madeline Cheney
Emily, welcome back to the show.
Emily
Thanks for having me again.
Madeline Cheney
Okay, we're going to talk today about educating others as your special topic, which I love since you are a special education teacher, so educating someone just makes so much sense for your topic. And what is your purpose and educating others about Nora?
Emily
I think my biggest goal when I'm educating about Nora is for people to understand that just because she's small, it doesn't mean that she isn't capable. Even now at two I find that people think of her as a baby, not a toddler, even though she's walking around and talking and communicating and that initially when people see her they just Oh, what a cute little baby which is nice. I know. They don't mean any harm by it, but it just kind of gives me a glimpse into the future of what people are gonna think given her size, and she'll never really be average height. So I worry that people will think because she's small, she's not capable, or that she's much younger than she is not smart. She doesn't understand what people are saying. But she does...
Nora is unstoppable. Her determined and ambitious spirit is housed in a body affected by the most common form of dwarfism, achondroplasia. Her mother Emily shares all about the obstacles that Nora has overcome in her two years of life, and her confidence that she will continue to overcome throughout her life.
In this episode, we also talk about the lack of knowledge about rare diagnoses and the power in connecting with other parents in the achondroplasia community via social media.
Emily is a special education teacher residing in central Massachusetts with her husband, Nora, and 9-year-old son Nate.
For transcript, comments, images, and more visit the website. https://therarelifepodcast.com/show-notes/ep-6-story-nora
TRANSCRIPT:
Madeline Cheney 0:35
Emily, thank you so much for sharing your heart today.
Emily 0:38
Thank you for having me.
Madeline Cheney 0:39
Yeah, of course. So if you could start out by just telling us about your daughter Nora, what is she like?
Emily 0:46
Nora is amazing. So she's two years old. Um, we found out at about 26 weeks that she was going to possibly have a form of dwarfism called achondroplasia. Her ultrasounds were measuring--her long bones were measuring far behind average height babies. So that was kind of a shock to us. In the beginning she was very healthy in all the tests that she had. Everything else was going well. They just kept an eye on her growth. So that's kind of what led us down that path to start....
Any diagnosis received for your child can be completely overwhelming and heartbreaking. In this solo episode, Madeline shares her experience learning about each birth defect her son has because of his rare genetic syndrome.
She also talks about the minimizing effects of spouting off lists of diagnoses, the crippling weight each new diagnosis brought, as well as the triumph and personal evolution she has seen in herself as a result.
Her son’s “list” includes: Dwarfism, cervical spine instability, no nasal bone, low muscle-tone, hearing loss, and vision loss.
Head to my website for the transcript, comments, question of the month, and more.
https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode
Do you ever feel like you’re just not enough? As special needs parents, I’m pretty sure we all have at some point. This episode is a pep-talk of sorts woven in with practical advice from guest Lisa Rawley, a developmental specialist with 20 years of experience.
We discuss when increasing or reducing therapies makes sense, the power of creating a strategy before the misbehavior arises, and the importance of knowing that we are enough.
Wonder if your child could be on the autism spectrum? Click link below to listen to a 3-minute outtake about autism red flags to look for in a child: https://therarelifepodcast.com/show-notes/red-flags-autism-clip-lisa
More about Early Intervention: https://www.parentcenterhub.org/ei-overview/
For the full transcript, comments, and more details visit: https://therarelifepodcast.com/show-notes/ep-4-you-are-not-your-childs-therapist-developmental-specialist-lisa-rawley
Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved? Alyssa affirms that these questions are key in determining our children’s quality of life, and that their abilities have nothing to do with it.
We also talk about how medical decision-making on behalf of our children comes into play. She shares some great advice on weighing the side effects against a potential medication or surgery.
Alyssa is passionate about the concept of quality of life; her roles both as William’s mother and a RN in oncology have given her unique perspectives both medically and holistically.
In this conversation, Alyssa also boldly declares that our children’s disabilities and diagnoses are not negative; they’re positive.
Find more details, full transcript, pictures, and a comments go to https://therarelifepodcast.com/show-notes/ep-3-quality-life-special-topic-alyssa
TRANSCRIPT:
Alyssa 0:00
"I've been questioned like, he doesn't have a quality of life. He doesn't do anything, he doesn't walk and, I just don't want him to be measured by his abilities. I don't want to be measured by my abilities. No one does."
Madeline Cheney 0:12
Hello, you are listening to The Rare Life. I'm your host Madeline Cheney. And today we have a special topic episode with Alyssa Reidhead. Alyssa shared all about her journey with her son William in the previous episode. If you missed that, I highly recommend going back and taking a listen. Alyssa chose to talk about quality of life and what that means to her-- What good quality of life is and what it is not. She also talks about the deep connection that she has with her son and how she measures his quality of life by his love and happiness and not by his abilities. I learned so much from our conversation together about this. I think her point of view and perspective is very refreshing and very positive. And I'm just so excited for you to listen in on this. So without further ado, let's talk about quality of life.
Okay, Alyssa, for people who aren't familiar with the term quality of life, how would you describe that or define it?
Alyssa 1:15
I'll start with like, me being a nurse. Quality of life basically kind of describes if you're given a diagnosis of something. It's how is your life going to look with that diagnosis? Are you going to be able to go about your normal daily life? Having a job or getting married, having kids, going to school? versus Are you going to be stuck in your home? Are you going to you know, those kind of things? What is your life going to look like? How is it going to change with this diagnosis? Quality of life... It's hard because everybody's definition of quality of life is so different. Um, some people may look at William, who's in a wheelchair and doesn't talk and doesn't eat. And, you know, these are the things he can't do. And they look at him and they, they will think they can say, he does not have a good quality of life, meaning he can't experience life. It's not-- his life doesn't have quality, quality meaning full of good things or, like happiness or not. Like, fulfillment like you know. And Ben and I have always felt like William has a great quality of life...
Alyssa was told her son William would die shortly after birth. He is now 4 years old, and Alyssa shares her incredible birth story, her deep connection with him despite his inability to speak, and the transformation Alyssa has experienced because of William.
Alyssa and her perspective on life is totally and completely inspiring.
William has several diagnoses and symptoms, some of which are seizures, dysphasia (inability to swallow), hydrocephalus, cutis aplasia, balance issues, vision impairments, developmental delays, and hormonal abnormalities.
Get an overview of how the first season will all go down. Whet your appetite with extended clips from Season 1 and get a better explanation of the theme.
In this episode, we also learn about the sequence of episodes:
1. Parent Story
2. Parent Special Topic
3. Professional
4. Solo
5. Repeat
A devastating ultrasound, a misdiagnosis of down syndrome, an incredible birth, and a whole lot of complicated feelings make up Madeline’s entrance into the special needs world.
Just listened to the trailer? Come here next. This episode covers a more in-depth road map of the show, and a chance to get to know Madeline as she shares her origin story as Kimball’s mama.
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TRANSCRIPT: (full transcript at https://therarelifepodcast.com/show-notes/preface)
Madeline Cheney:
"They had to give him an extra dose of sedation because he was being so feisty and trying to grab everything out. Which is really cute to know."
Well, hey, you're listening to the preface episode for The Rare Life. I'm so glad that you're listening to this. This is a great episode to get started with before you dive into the meat of the podcast. I'm going to cover a few things. I'll cover:
1. who this podcast is for a little more in depth
2. a bit more about the seasonal structure and a few fun facts about my family and me so you can kind of get to know me a little bit before I dive into all the nitty gritty of my experiences with Kimball and other parents as well.
3. And my origin story as I entered the ranks of special needs motherhood which is code for Kimball's pregnancy and birth, really when we found out that he- his body was not forming correctly.
So first of all, with this podcast I keep two groups of people in mind but mainly the first group which is derived from the name of the podcast, parents of children that have rare medical conditions. So this is really who I have in mind while I'm creating episodes and curating different topics for various episodes and different professionals, but it really applies to all parents of children with any kind of special needs or medical conditions or medical complexities. Regardless of how common or rare they are. We talk about rareness, partially because each individual diagnosis when they are rare, are so isolating, and so I mean, special needs parenting is isolating anyway, but it's a new level of isolation. So this is a way for us to band together and create our own big thriving group of everyone who relates with rare. And that brings me to group number two, which I also have in mind, but this is not really created for you, but you can benefit from it. This is for anyone who is curious about what it is like to be a special needs parent. This includes, maybe you have a family member who has a special needs child or a friend with a special needs child. Maybe you just admire special needs parents, which like I don't blame you, because like, we're awesome. Maybe you're a therapist or doctor and you want to hear the other side of the story, you want to learn more about what's on the other side of the mirror. So to all: welcome to The Rare Life.
...
You can read the full transcript at https://therarelifepodcast.com/show-notes/preface
New to The Rare Life? Start here to find out what types of episodes are featured in the show and enjoy a few audio clips from Season 1.
Comments and additional details at https://therarelifepodcast.com/show-notes/trailer
En liten tjänst av I'm With Friends. Finns även på engelska.