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.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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