S2E14 | Navigating the World of Medical Parenthood and Rare Conditions: Insights from Madeline Cheney

Today on the Miracle Moon Podcast, we're honoured to have Madeline Cheney join us, the creative force behind the podcast and Instagram page @therarelife . Madelines platform serves as the ultimate solidarity hub for parents navigating the uncharted territory of raising children with rare conditions. Just like we do here, Madeline fosters an environment of candidness and authenticity, creating a validating and normalising community for medical parents.

Neonatal Care & Rare Conditions

In this episode we discuss Madeleine's experience of finding out at 20 weeks that her child would have medically complex needs and would need a neonatal admission when they were born. We also talk about their journey through NICU with a child with medically complex needs and a rare genetic disease, whilst also juggling the care of a toddler at home. We discuss the impact of becoming a medical parent and how it can influence mental health, relationships and our world view. We discuss feelings that many medical parents feel but may not always articulate- such as resentment, jealousy, bitterness, grief, intense primal love and uncertainty. 

Key quotes: 

“The day you find out something is different about your child, you become the person you never thought you would be” 

“I had a lot of feelings of inadequacy and overwhelm and having no idea what anyone was saying. I knew nothing about the NICU.” 

“I will do anything to keep this child alive… it was survival mode” 

“NICU wasn't all trauma, I have fond memories… this feelings of I get to see my baby, I felt so much excitement” 

“The first few weeks at home were hellish adjusting to being home without the nurses there to hold our hands and we didn't know what we were doing with the medical devices” 

“I ache for the pain she went through (my daughter at home), cos I was in pain. I grieve everything she went through and I went through” 

“The unknown part of it complicates grief, you're grieving what you have gone through but you are also not sure what else is going to happen” 

“I feel the protective feeling that most parents feel but on steroids because of everything he has been through” 

“When I recognise it is grief and sadness, sometimes that feels more unmanageable than anger” 

Connect with Madeline:
For those seeking a community that understands the unique challenges of parenting children with rare conditions, Madeline's podcast and Instagram page, @therarelife, offer valuable insights and a sense of belonging. Her work resonates with parents navigating similar journeys, providing a place where experiences can be shared and understood.

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Music: Moments by Shane Ivers - https://www.silvermansound.com