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.
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Nov 12, 2026 · 1:14:34
When you're parenting a medically complex child, there's a lot to be anxious about. And even when everything is going well, it's hard to stop waiting for the other shoe to drop.…
Nov 5, 2026 · 55:43
Shanna was parenting a toddler when her second son, Levi, was born with a brain injury and received an HIE diagnosis that changed everything. Between his medical needs, constant…
Oct 29, 2026 · 1:15:17
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 unpacking the baggage…
Oct 22, 2026 · 58:20
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 whether you…
Oct 15, 2026 · 1:05:58
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…
Oct 8, 2026 · 46:44
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 managing…
Oct 1, 2026 · 58:01
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 become PTSD,…
Sep 24, 2026 · 56:55
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 community, it…
Sep 17, 2026 · 45:50
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’re…
Sep 10, 2026 · 38:42
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…
Sep 3, 2026 · 25:53
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,…
Aug 13, 2026 · 23:18
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…
Aug 6, 2026 · 20:12
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…
Jul 30, 2026 · 31:19
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…
Jul 23, 2026 · 35:37
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…
Jul 16, 2026 · 29:56
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…
Jul 9, 2026 · 24:29
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…
Jul 2, 2026 · 26:01
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,…
Jun 25, 2026 · 1:24:12
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…
Jun 18, 2026 · 18:52
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…
Jun 11, 2026 · 21:33
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…
May 28, 2026 · 33:14
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…
May 21, 2026 · 34:16
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…
May 14, 2026 · 48:12
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…
May 7, 2026 · 52:41
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,…
Apr 30, 2026 · 1:05:53
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…
Apr 23, 2026 · 43:07
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…
Apr 16, 2026 · 1:00:54
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…
Apr 9, 2026 · 52:24
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…
Apr 2, 2026 · 40:08
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…
Mar 26, 2026 · 55:03
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…
Mar 19, 2026 · 54:31
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…
Mar 12, 2026 · 1:32:20
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…
Mar 5, 2026 · 53:41
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…
Feb 26, 2026 · 51:34
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…
Feb 19, 2026 · 1:19:34
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…
Feb 12, 2026 · 1:06:12
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…
Feb 5, 2026 · 1:12:41
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…
Jan 29, 2026 · 1:11:45
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…
Jan 22, 2026 · 1:09:20
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…
Jan 15, 2026 · 43:02
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,…
Jan 9, 2026 · 16:17
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,…
Dec 11, 2025 · 34:47
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…
Dec 4, 2025 · 1:08:26
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…
Nov 27, 2025 · 24:54
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…
Nov 25, 2025 · 1:37:06
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…
Nov 20, 2025 · 1:11:42
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…
Nov 13, 2025 · 51:36
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…
Nov 6, 2025 · 51:26
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,…
Oct 30, 2025 · 36:08
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…
Oct 23, 2025 · 1:11:49
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…
Oct 16, 2025 · 50:46
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…
Oct 9, 2025 · 44:12
When your life has revolved around caring for your medically complex child, their absence changes everything: your routines, your identity, your relationships, and evenyour…
Oct 2, 2025 · 39:41
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,…
Sep 25, 2025 · 1:04:09
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…
Sep 18, 2025 · 1:06:05
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…
Sep 11, 2025 · 40:17
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…
Sep 4, 2025 · 43:41
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)…
Aug 28, 2025 · 26:35
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 medical teams, and even…
Aug 14, 2025 · 14:38
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 fit, it can be…
Aug 7, 2025 · 23:45
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, Alyssa and I share how…
Jul 31, 2025 · 19:42
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 into the…
Jul 24, 2025 · 28:09
When your child’s health stabilizes, it should feel like a win. But about when it just feels...complicated? In this episode, Jessica Loey joins Madeline to talk about the…
Jul 17, 2025 · 26:43
When the federal government slashes Medicaid funding, states are left to decide what happens next... and families like ours are left bracing for the fallout. In this mini…
Jul 10, 2025 · 23:08
When you’re deep in the world of disability parenting, it’s easy to feel like every day is the same. The meds. The appointments. The routine that doesn’t seem to change much,…
Jul 3, 2025 · 16:47
What does it mean when a dream brings you to tears before breakfast? In this mini episode, Alyssa and I dive into grief dreams: those vivid, emotional dreams where our children…
Jun 26, 2025 · 26:51
Hormones, cycles, and caregiving—oh my. In this Summer Mini, Madeline is joined by Suzi Boubion to talk about how our menstrual cycles can affect caregiving formedically complex…
Jun 19, 2025 · 14:37
We usually cover a different guest and topic each episode, but this week, we’re peeling back the curtain to get to know Alyssa: the show’s producer, right-hand lady, and longtime…
Jun 12, 2025 · 24:30
What does it really mean to care for yourself while raising a disabled child? Not the bubble bath kind of self-care—but the kind that starts with naming your anger, your grief,…
Jun 5, 2025 · 13:54
Meditation might seem like a luxury when you’re managing meds, appointments, and survival mode. But for some of us, it becomes a lifeline. In this episode, Chrissy McGuire…
May 22, 2025 · 40:36
Season 11 is coming to a close, and it’s been one of our most emotional seasons yet. From intense behind-the-scenes chaos to topics that pushed the boundaries of what we’ve…
May 15, 2025 · 51:24
No one expects to be here. But many of us are. In this episode, Alyssa Nutile and I open up a raw and rarely discussed topic: abortion after a prenatal diagnosis. We talk about…
May 8, 2025 · 39:04
Sometimes the only place big enough for the weight you’re carrying is the side of a mountain. That’s where Colleen—and dozens of other moms—learned how to let it out. In this…
May 1, 2025 · 55:35
Grief around our children’s disabilities can take many forms. Some of us are grieving the life we thought we’d have with our child that looks so very different now.…
Apr 24, 2025 · 21:35
For the first time in The Rare Life history... we need a little extra time to work on the next few episodes. Not because we haven’t been preparing and planning, but because some…
Apr 17, 2025 · 1:11:18
When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising…
Apr 10, 2025 · 1:05:01
For a lot of us, the answer isn’t simple. You can miss your lighter, less-traumatized self and feel proud of who you’ve become. That’s the tension so many of us sit in as medical…
Apr 3, 2025 · 59:12
When Leah Crum gave birth to her daughter Camilla, she had no idea she was about to be launched into a world of medical unknowns, an undiagnosed rare condition, and 118 days in…
Mar 27, 2025 · 54:06
When the systems your child depends on are under threat, it doesn’t feel political—it feels personal. In this episode, Madeline and Alyssa unpack the deep unfairness of having to…
Mar 20, 2025 · 49:15
There are certain moments that never leave you—the sight of your child turning blue, the smell of hospital-grade hand sanitizer, the feeling of helplessness as doctors take over.…
Mar 13, 2025 · 34:29
At 28 weeks pregnant with her third child, Rachel experienced the unimaginable—losing her husband in a sudden tragedy. What followed was a whirlwind of grief, survival mode, and…
Mar 6, 2025 · 1:11:21
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…
Feb 27, 2025 · 48:35
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…
Feb 20, 2025 · 44:28
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…
Feb 13, 2025 · 59:30
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…
Feb 6, 2025 · 1:09:23
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.…
Jan 30, 2025 · 56:47
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…
Jan 23, 2025 · 26:26
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…
Jan 9, 2025 · 12:18
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…
Jan 2, 2025 · 9:53
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…
Dec 26, 2024 · 19:20
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,…
Dec 19, 2024 · 18:05
What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off…
Dec 12, 2024 · 25:00
Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments.…
Dec 5, 2024 · 10:39
So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for,…
Nov 21, 2024 · 30:13
Season 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical…
Nov 15, 2024 · 30:15
It’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for…
Nov 14, 2024 · 1:04:41
Watching our children go through pain in a medical setting, even when we know it’s what is best for them, can be difficult for parents to navigate. We want to help, but sometimes…
Nov 11, 2024 · 22:59
Summary: On this special mini episode, we’re hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The…
Nov 7, 2024 · 1:40:25
We all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way. Because if we don't use the…
Nov 1, 2024 · 13:13
Sticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins. In…
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