Ep97: You're not failing, you're unsupported with Madeline Cheney (The Rare Life)

There's a difference between a hard life and an unsupported one. This episode is about that difference.Madeline Cheney is the founder of The Rare Life — a nonprofit podcast and online community for parents of medically complex kids — and she is exactly the kind of person you want in your corner when the weight of it all starts to feel like a personal failing. Spoiler: it's not. It's a systems problem. And she's got receipts.We started, somehow, with yard work. And weeds. And the sneaky way that the things we keep avoiding cost us way more energy than actually doing them — a truth that hits different when you're a parent whose to-do list includes therapy schedules, IEP meetings, feeding protocols, and approximately ten thousand things the professionals think you should be doing right now.From there we got into the real stuff:The mental load that never clocks out. Even when you're sleeping. Even when you're at work. Even when someone else is technically watching your child. The hypervigilance is always running in the background — and it takes a toll on your body in ways that science is only beginning to catch up to.Grief that doesn't look like grief. It's universal among parents in this community, and it doesn't mean you love your child any less. In fact, it usually means the opposite. Madeline talks about why naming it — without the shame — is the fastest path through it.Why partners process so differently. And why the parent doing the daily caregiving almost always gets to acceptance first. (Hint: you can't ignore reality when it's in your face every single day.)The foster care system plot twist. Madeline is in the middle of becoming a licensed foster family, and what she discovered about the support infrastructure built into that system — the mentor families, the care teams, the respite care, the training — will make you simultaneously inspired and furious on behalf of every disability parent who never got any of that.Acceptance isn't what you think it is. It's not peace. It's not "I wouldn't change a thing." It's just — this is my life, and I'm not fighting that anymore. That's it. That's enough.And we talked about meaning-making. Not the toxic positivity version where everything happens for a reason. The real version, where you go through something hard and you become someone different on the other side — and that matters, even if nobody ever sees it.Madeline is the founder of The Rare Life, a nonprofit online community and podcast for parents of medically complex individuals. She started The Rare Life in 2020 when her medically complex son Kimball was 2, inspired by the isolation she had experienced to that point. Madeline lives in SLC with her husband Juston, 10 year old daughter Wendy and now 7 year old son Kimball. She enjoys vegging out to old murder mystery tv shows, her current favorite being Murder She Wrote, and connecting with loved ones outside.Find Madeline online:https://therarelife.org/https://www.instagram.com/the_rare_life