Shows / The Rare Life
The Rare Life
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…
Episodes
- The Rare Life
237: Baggage | How Our Past Experiences Shape Disability Parenting
Yes, disability parenting changes us, but experiences we bring into disability parenting shape the way we navigate this life too! In today's episode, we're…
- 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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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 Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
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…
- The Rare Life
226: Should I Be Raising Awareness About My Child’s Diagnosis?
For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility…
- The Rare Life
225: Schooling Options for Disabled Kids | Advocacy, Access + Emotional Toll of Navigating Tough Choices w/ Rachel Redmond
For many families of disabled and medically complex children, school is rarely a simple decision. It’s a constant balancing act between medical needs, safety…
- The Rare Life
224: Emergencies & ER Visits | Making the Call, Coping with “What Ifs” + Survival Tips
For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life. Every time…
- The Rare Life
223: Noelle’s Story | A Terminal Diagnosis, Making Decisions Without a Roadmap, + Longterm Advocacy
Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be…
- The Rare Life
222: Intellectual Disabilities | Complicated Grief, Stigma, and Shifting Perspectives w/ Amanda Griffith-Atkins, Madeline and Alyssa
From an early age, most of us are taught that being “smart” matters. It’s tied to the way society measures and views success, independence, and worth. So what…
- The Rare Life
221: Equipment for Our Medically Complex Children | Grief, Gratitude, and Everything In Between
At face value, our kid’s equipment is just stuff. It helps our kids move, eat, hear, breathe, communicate, and more. But when that “stuff” feels like it’s…
- The Rare Life
220: Robin’s Story | Preparing for the Worst, Staying Present, + Embracing a Different Type of Fatherhood
Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding…
- The Rare Life
219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and…
- The Rare Life
218: Moms vs. Dads in the Medical System | Dismissal, Assumptions + the Cost of Not Being Trusted w/ Kyrie Herman
For most of us who have spent years inside the medical system with a complex child, the experience of being mom in an exam room can feel very different from…
- The Rare Life
217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline
For many disability parents, medically complex life begins in the NICU. In those early days, everything feels heightened: the machines, the uncertainty, the…
- The Rare Life
216: Cindy's Story | Survival Mode, Unexpected Grief + Navigating Inclusion and Accessibility
When you’re raising a child with complex medical needs, the early years can feel like one long stretch of survival mode. Hospital stays, surgeries, therapies…
- The Rare Life
215: Behaviors | Isolation, Guilt + Why It’s Not About “Control” w/ Annie and Katie
For a lot of disability parents, the behavioral side of our child’s diagnosis often gets judged the fastest and is understood the least. It’s also another part…
- The Rare Life
214: Relocation for Better Support | All the Factors to Consider + Complicated Decision-Making w/ Madeline
For families of medically complex kids, where you live can determine what services your child gets, whether you can be paid to care for them, how long you sit…
- The Rare Life
213: Deonna’s Story | A Childhood Injury & Stroke + Healing After Sudden Life Changes
Many of us start our disability parent journey early in our child’s life, with signs that something is medically awry sometimes as early as birth or in…
- The Rare Life
212: Surgeries | The Feelings We Have Before, During, and After + How Families Cope w/ Madeline
Surgery of some kind or another is a near universal experience for medically complex kids. (And yes, procedures that involve anesthesia or something similar…
- The Rare Life
211: Trachs & Vents | Fear, Hypervigilance, & Finding a New Normal w/ Ashley Caywood
What does it mean to bring home a child whose breathing depends on a piece of medical equipment? For many families, the idea of a trach is terrifying long…
- The Rare Life
210: Receiving Judgement for Disability Parent Decisions w/ Madeline
Living a medically complex life means making constant decisions under a microscope. About treatments. About schools. About rest. About what’s “enough.” And no…
- The Rare Life
209: Kenya’s Story | When Lightning Strikes Twice + Trusting Your Instincts
When Kenya’s daughter was six, her body began changing in ways that felt impossible to ignore, even as doctors insisted it was normal. What followed was a long…
- The Rare Life
208: Season 13 Kickoff | A New Theme + Sneak Peeks
Season 13 is here, and this time the focus is on our children’s disabilities themselves. This season, we’ll be talking about things like navigating surgeries…
The Rare Life207: Season 12 Finale | Switching Hosts, Behind the Scenes + A Unanimous Favorite
Season 12 is coming to a close, and it’s been a season of big shifts. With Alyssa stepping in to host every episode and Madeline handling more…
The Rare Life206: When Family Rejects Your Disabled Child + the Hurt it Causes w/ Madeline
When a family member rejects your disabled or medically complex child, whether through subtle distancing or outright exclusion, it creates a kind of hurt…
- The Rare Life
TRL + The Power of Feeling Less Alone
Today’s episode is a quick moment to pause and say thank you. Your messages about feeling understood, less isolated, and more connected remind us why TRL…
- The Rare Life
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we…
The Rare Life205: Our Relationship With Our Child’s Medical Team w/ Madeline
For medically complex families, relationships with ourchildren’s medical teams are anything but simple. In this episode, Madeline and Alyssa dig into what…
The Rare LifeBonus: 2025 Check-in with Disability Parents | Anxiety, Heaviness, + Navigating Relationships in a Polarizing Climate w/ Madeline
For many of us, this year has felt so heavy, from loss inthe community, to terrifying policy changes and the stress of uncertainty, to another emotional…
The Rare Life204: Abbey's Story | An Ultra-rare Diagnosis, Shifting perspectives + Holding onto Faith
What do you do when your baby is seizing and the people who are supposed to help you tell you that you’re overreacting? For Abbey, the fight to be taken…
The Rare Life203: How to Strengthen Your Marriage When You’re Always in Survival Mode w/ Amanda Griffith-Atkins
Your child’s diagnosis can reshape everything, marriages included. The same partnership that once felt effortless can become consumed by care plans, schedules…
The Rare Life202: All the Ways Our Marriages are Impacted by Disability Parenting
When your days revolve around medical routines, sleepless nights, and endless caregiving, marriage can start to feel more like project management than…
The Rare Life201: Roya's Story | A Diagnosis Without a Map, Learning to Advocate + the Journey Back to Herself
From the moment her daughter was born, Roya had an inkling that something was different. What followed was a long year of uncertainty, endless medical tests…
The Rare Life200: Facing End of Life Choices + The Way Life Changes After Child Loss w/ Stephanie Stanley
When your life has revolved around caring for your medically complex child, their absence changes everything: your routines, your identity, your relationships…
The Rare Life199: Adopting a Medically Complex Child w/ Kristen Henry
Sometimes the path to parenthood looks nothing like we planned. For Kristen, years of infertility led to adoption... and ten days after bringing her daughter…
The Rare Life198: Ashley’s Story | A Year in the NICU, Impossible Choices + Complex Joy
From the moment Ashley learned she was carrying twins, her life took a turn she would never have imagined. A diagnosis of twin-to-twin transfusion syndrome set…
The Rare Life197: When Meaningful Friendship with Other Disability Parents Feels Elusive w/ Madeline Cheney
Making friends as a disability parent sounds like it should be easy. We’ve already got so much in common. But in reality, it’s complicated. In this episode…
The Rare Life196: One & Done | Deciding Not to Have More Children After Disability
When your child has complex medical needs, the question of more children isn’t always simple. And for some parents of disabled children, the decision to stop…
- The Rare Life
195: Ali’s Story | An Invisible Disability, Living in Survival Mode + Giving Up Her Dream Career
What happens when your child’s rare disease doesn’t look “serious enough” to the outside world? For Ali Platt, the invisibility of her daughter’s Eosinophilic…
- The Rare Life
194: Kicking Off Season 12 | Episode Sneak Peeks + a BIG Announcement
Season 12 is here and, once again, the theme is all about relationships: the relationships we have with our children, our partners, our children’s…
- The Rare Life
When Therapists Leave | Feelings That Come Up + Knowing When It’s Time to Cut Ties
Therapists come and go, but that doesn’t make it easy. When a beloved therapist leaves, it can feel like losing a member of the family. And when it’s a bad…
- The Rare Life
How To Talk To Kids About Disabilities
Talking about disability with kids can feel like walking a tightrope. What do you say? How much do you explain? And when do you just… not? In this episode…
- The Rare Life
Inspired By Disabled Kids? What Feels Ok + What Feels Ick
When strangers call our kids “so inspiring,” it’s often meant as a compliment. But it doesn’t always feel like one. In this episode, Madeline and Alyssa dive…