The Rare Life

Mar 06 2025 239 ep. 40 mins 61
The Rare Life Podcast artwork

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.

  Kids & Family
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183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson

Mar 06 2025 71 mins  
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, refrac

182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins

Feb 27 2025 48 mins  
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-ch

181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been”

Feb 20 2025 44 mins  
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 r

180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile

Feb 13 2025 59 mins  
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 d

179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile

Feb 06 2025 69 mins  
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 thi

178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control

Jan 30 2025 56 mins  
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 associate

177: Kicking Off Season 11 | Episode + Fundraiser Sneak Peeks w/ Alyssa Nutile

Jan 23 2025 26 mins  
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 se

Holiday Mini 6: Find Your Community in TRL Discussion Groups

Jan 09 2025 12 mins  
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 fou

Holiday Mini 5: The New Year for Disability Parents

Jan 02 2025 9 mins  
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 i

Holiday Mini 4: 2024 for Medical Parents | Highs and Lows

Dec 26 2024 19 mins  
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 in