The Rare Life

236: When It Feels Like Your Fault | Accidents, Carriers, + Pregnancy What-Ifs

Did my body fail my child? Did I do something wrong? Could I have prevented this? You don't have to be a genetic carrier to grapple with the complex feelings around whet

235: Ways Our Identity is Impacted by Having a Medically-Complex Child

Who are you when so much of your life revolves around caring for your child? For parents of disabled and medically complex kids, our identities can shift in some pretty s

234: Carolina’s Story | A Surprise Diagnosis, A Liver Transplant, + When Relaxing Feels Risky

When Carolina’s daughter Cruz was just days old, newborn screening revealed she had maple syrup urine disease. Almost overnight, Carolina went from first-time mom to mana

233: PTSD | What It Looks Like + Why It’s So Prevalent for Disability Parents w/ Amanda Griffith-Atkins

A hospital admission. A seizure. A certain time of year. Sometimes your body can react to medical trauma long after the moment itself has passed. But when does that becom

232: Exercise + Disability Parents

Exercise can be a powerful coping tool, a way to feel stronger, and something that improves our mental health as parents of disabled children. But for those in our commun

231: Numbing Out | When Disability Parents Need a Break From Reality

Scrolling. Comfort shows. Exercise. Reading. Keeping yourself so busy you don’t have time to think. Numbing out can look a lot of different ways. In today’s episode, we’

230: Amanda’s Story | Medical-Parent Anxiety, Fear of the Future + 17 Years of Perspective

When your first child is medically complex, your experience can look very different from a “typical” parent. But sometimes, that’s only really apparent in hindsight. In

229: Season 14 Kickoff | Our Board Retreat, Summer Recaps + Sneak Peeks

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people. This season, we’ll be talking about things like

New Launch: The NICU Survival Guide w/ Cindy Reinhard and Ashley Caywood (Summer Mini #10)

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it. In this episode, we’

When You and Your Child are Both Medically Complex with Sarah (Summer Mini #9)

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this

Single Medical Parenting w/ Danielle (Summer Mini #8)

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty. From managing the financial realities of a solo parent household

Why Asking for Help Feels So Hard (Summer Mini #7)

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it ea

Sexual Health for Disabled Youth w/ Jill Arneson & Amanda Griffith-Atkins (Summer Mini #6)

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic. From appropriately navigating sexua

Clinical Trials | Should I Enroll my Disabled Child in One? (Summer Mini #5)

Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time

How Time in Nature Impacts Disability Parents (Summer Mini #4)

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated. Today, we’re talking about the ways nature groun

Traveling with Disabled Kids Tips and Tricks (Summer Mini #3)

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 tr

The Forgotten Fathers | To The Dads Who Hold It All Together w/ Lizzie (Summer Mini #2)

The dads deserve a village too. In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, cru

Summertime Feels, Disability Ed. (Summer Mini #1)

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings. Today, we’re digging into all of that: how

228: Season 13 Finale | Biggest Impacts, Hardest Listens, + A Special Guest

Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground. In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listen

227: Abuse and Neglect Safeguards | Who We Can Trust + How to Protect Our Disabled Children

Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to