PODCAST · kids
The Rare Life
by Madeline Cheney
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.
Episodes
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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 today’s episode, we (finally!) have Amanda Griffith-Atkins on to share the story of her and her son Asher. From the first…
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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 anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a...
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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’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of...
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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, you continue to uncover your own medical complexities. That story isn’t foreign to Sarah, our guest in today’s episode. She...
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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 to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something...
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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 easy to ask for it. From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why...
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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 sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health...
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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, they aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that...
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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 grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find...
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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 travel is a priority for your family, it is possible with the right planning and preparation. In today’s episode, we share the…
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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, crushing ways dads are often expected to carry everything without being seen. A huge thank you to our sponsor for this summer…
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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 we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway. A huge…
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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 listener and mom to Miles, to look back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also...
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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 help care for our disabled and medically complex kids. And honestly? That can feel terrifying. In this episode, we're…
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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 sitting on top of an already overwhelming life. Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what...
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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, transportation, therapies, staffing, inclusion, and what your child can realistically access. In this episode, Alyssa is joined by Rachel…
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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 something seems off and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?...
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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 and procedures, trachs and vents, behavioral diagnoses, schooling options, sexual health and safety, feeling judgment, and more. As always,...
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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 facing a progressive, terminal disease that no one, including their doctors, knew much about. In this episode, Noelle shares how they...
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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 happens when you're raising a child with an intellectual disability in that world? In this episode, Alyssa, Amanda, and Madeline get…
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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 taking over our lives (and homes), complicated feelings can come up. In this episode, Madeline and Alyssa talk about the emotional…
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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 started to unravel. In this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility…
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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 starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever...
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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 experience of being dad. Sometimes that means being dismissed while your husband gets taken seriously. Sometimes it means the opposite —...
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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 helplessness of watching doctors care for your tiny baby while you stand nearby unable to help. In this episode, Alyssa and Madeline unpack...
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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, and constant uncertainty loom large over everything. For Cindy, that uncertainty started before her son Thoren was even born. After a...
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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 that can make us feel like we’re failing, because it’s so hard to “control.” In this episode, Alyssa talks with Annie and Katie about...
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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 on a waitlist, and whether the world around you is even built for a kid like yours. In this episode, Madeline and Alyssa dig into one of…
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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 utero. But that’s not the story for Deonna. Instead, a seemingly minor injury for her four year old daughter Allie led to a medical event that...
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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 count too!) And these experiences don’t just affect our children, but our entire families. In this episode of The Rare Life, Alyssa and...
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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 before it ever becomes reality. And even after, the fear doesn’t magically disappear. In this episode of The Rare Life, Alyssa is joined by...
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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 matter what you choose, it often feels like someone is ready to tell you that you chose wrong. In this episode, Madeline and Alyssa talk...
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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 stretch of doubt, dismissal, and self-questioning, until Kenya finally found a specialist who confirmed what she had known all along: her...
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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 and procedures, trachs and vents, behavioral diagnoses, schooling options, sexual health and safety, feeling judgment, and more. As always,...
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207: 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 behind-the-scenes projects, the podcast sounded a little different, but still hit all the same emotional notes. We also covered some especially heavy...
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206: 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 that’s difficult to shake. In this episode, Madeline and Alyssa talk through the many ways that rejection shows up in families: minimizing your...
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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 exists in the first place. Hearing how this podcast fits into your NICU nights, med routines, or car rides means more than we can say. Sticker...
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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 wish the holidays could have been for our families lurk around every corner. And on top of that, having to manage schedules, special…
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205: 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 makesthem so emotionally loaded: the power imbalance, the fear of being dismissed,the exhaustion of coordinating between specialists, and the...
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Bonus: 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 reality many didn’t expect: feeling disconnected from the people who love us but don’t understand our lives. In this episode, we talk about the...
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204: 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 seriously began early, and it shaped everything that came next. Her daughter Avery’s rare metabolic disorder (ADSL Deficiency) brought hospital...
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203: 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, and unspoken grief. Over time, love turns into teamwork—and sometimes, survival. In this conversation with Amanda Griffith-Atkins, we...
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202: 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 partnership. In this episode, Madeline and Alyssa unpack all the ways that marriage is impacted amidst medical and disability parenting—the...
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201: 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, and finally anofficial diagnosis of Schaaf-Yang syndrome... all on top of learning a new language of care no parent expects to need. In…
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200: 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, and evenyour purpose in life. In this tender conversation, Stephanie Stanley shares what it’s like to live through end of life decisions...
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199: 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 home from the NICU, a cystic fibrosis diagnosis turned her world upside down again. In this episode, she shares what it’s been like to...
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198: 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 off a chain of events: heart-wrenching decisions for her twin daughters, another complicated pregnancy ending in an emergency C-section…
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197: 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, Alyssa and Madeline share community stories about what makes these friendships so hard to build and sustain: the comparisons that creep in,...
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196: 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 at one might not even feel like a decision at all. In this episode, Alyssa shares responses from hundreds of parents who live in this...
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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 Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and...
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ABOUT THIS SHOW
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.
HOSTED BY
Madeline Cheney
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Frequently Asked Questions
How many episodes does The Rare Life have?
The Rare Life currently has 315 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is The Rare Life about?
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...
How often does The Rare Life release new episodes?
The Rare Life publishes regularly with 315 episodes available. Check the episode list for the typical release schedule.
Where can I listen to The Rare Life?
You can listen to The Rare Life on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts The Rare Life?
The Rare Life is created and hosted by Madeline Cheney.
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