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PODCAST

The Rare Life

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

kids & family parenting

All Episodes

01:19:34

214: Relocation for Better Support | All the Factors...

The Rare Life ·

2026/02/19

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 the most loaded and personal questions in this life: have you ever considered moving for better support for your child? We cover why so many of us feel that pull, what can make some places better or worse for

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01:06:12

213: Deonna’s Story | A Childhood Injury & Stroke +...

The Rare Life ·

2026/02/12

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 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 changed the course of their lives in an instant.In this episode, Deonna shares what happened after her daughter suffered a stroke, from the months in the hospital, the acclimation to life at home

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01:12:41

212: Surgeries | The Feelings We Have Before, During,...

The Rare Life ·

2026/02/05

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 Madeline dig into all of the big feelings that come up before, during and after our kid’s surgeries, the heart-rending questions we ask ourselves when deciding which surgeries are necessary, and advice from the

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01:11:45

211: Trachs & Vents | Fear, Hypervigilance, & Finding...

The Rare Life ·

2026/01/29

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 Ashley Caywood to talk honestly about life with a trach and ventilator. We hear from parents who knew this decision was coming and from others who were blindsided by it, from families who hoped it would be

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01:09:20

210: Receiving Judgement for Disability Parent...

The Rare Life ·

2026/01/22

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 about judgment: where it comes from, how it shows up, and why it cuts so deeply for parents of disabled and medically complex kids. From medical teams and family members to disability spaces and even other

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00:46:39

209: Kenya’s Story | When Lightning Strikes Twice +...

The Rare Life ·

2026/01/15

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 daughter was experiencing precocious puberty.In this episode, Kenya shares what it was like to fight for answers, navigate bias in pediatric care, and hold space for a child whose body and emotions were

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00:16:17

208: Season 13 Kickoff | A New Theme + Sneak Peeks

The Rare Life ·

2026/01/09

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, there will be story episodes woven throughout the season, featuring parents sharing their experiences in their own words.We’re also sharing a few updates in this episode, including how hosting will look this

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00:34:47

207: Season 12 Finale | Switching Hosts, Behind the...

The Rare Life ·

2025/12/11

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 community topics, from family planning to marriage to familial rejection, which shaped the tone of the season in a really meaningful way.In this finale episode, we’re sharing a quick look behind the scenes of

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01:08:26

206: When Family Rejects Your Disabled Child + the...

The Rare Life ·

2025/12/04

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 child’s needs, ignoring their diagnosis, designing gatherings your family can’t access, ghosting you because emotionally engaging is too hard, or outright excluding or belittling your child.Drawing from

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00:24:54

TRL + The Power of Feeling Less Alone

The Rare Life ·

2025/11/27

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 Club is also open for a few more days, and it’s one of the reasons we can keep making episodes like this. If you want to support the work and grab this year’s sticker designs, now’s the time. It truly helps

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01:37:06

The Holidays + Why They Kinda Suck for...

The Rare Life ·

2025/11/25

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 diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked

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01:11:42

205: Our Relationship With Our Child’s Medical Team...

The Rare Life ·

2025/11/20

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 pressure to keepeveryone “on your side.”We also talk about the moments that build trust — and theones that completely break it — plus what it feels like to train providers onrare diseases and advocate in

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00:51:36

Bonus: 2025 Check-in with Disability Parents |...

The Rare Life ·

2025/11/13

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 weight of this year,the grief and instability running through our community, and the complicated task of navigating family and friendships in a politically charged moment. From boundaries to distancing to the

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00:51:26

204: Abbey's Story | An Ultra-rare Diagnosis,...

The Rare Life ·

2025/11/06

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 stays, impossible medical decisions, and a long process of learninghow to live with uncertainty.In this episode, Abbey shares how she became her daughter’s advocate long before she felt ready, what it has

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00:36:08

203: How to Strengthen Your Marriage When You’re...

The Rare Life ·

2025/10/30

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 unpack the real challenges couples face when parenting through medical complexity: the imbalance of the mental load, the grief that seeps into communication, and the long road back to connection. Amanda offers

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01:11:49

202: All the Ways Our Marriages are Impacted by...

The Rare Life ·

2025/10/23

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 disconnection, resentment, and chronic stress that test relationships, and the deepened understanding, teamwork, and shared strength that can come from walking through it together.Whether you think your marriage

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00:50:46

201: Roya's Story | A Diagnosis Without a Map,...

The Rare Life ·

2025/10/16

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 this episode, Roya shares the disorienting early days of her daughter’s diagnosis journey, what tending to her own mental health looked like in the midst of caregiving, and how she eventually found purpose in

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00:44:12

200: Facing End of Life Choices + The Way Life...

The Rare Life ·

2025/10/09

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 for your medically complex child and to continue on after the caregiving ends. We cover the isolation that follows, the way grief changed her relationships and community, and the small ways she’s keeping

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00:39:41

199: Adopting a Medically Complex Child w/ Kristen Henry

The Rare Life ·

2025/10/02

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 navigate open adoption alongside the realities of raising a medically complex child: the intertwined joy of becoming a parent and the heartbreak of another family’s separation, the shock of adiagnosis, the fog of

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01:04:09

198: Ashley’s Story | A Year in the NICU, Impossible...

The Rare Life ·

2025/09/25

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 at 24 weeks, and more than a year in the NICU with her son. Along the way, she wrestled through overwhelming grief, advocated for her son in a complex medical world, and discovered the ways in which

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286 results

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