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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

00:56:47

178: Jessica Fein’s Story |Adoption, a Progressive...

The Rare Life ·

2025/01/30

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 uncertainty, impossible decisions, and the heartbreaking reality of watching Dalia’s abilities slowly fade.In this episode, Jessica shares her adoption story with Dalia, the ambiguous grief associated with her diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found

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00:26:26

177: Kicking Off Season 11 | Episode + Fundraiser...

The Rare Life ·

2025/01/23

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 hobbies, this season is all about how the experience of parenting a medically complex or disabled child shapes our lives too.We’re also launching our second annual Friends and Family Fundraiser this season, running from 2/14-2/28. This fundraiser allows your friends, extended family, and broader support system to show up for

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00:12:18

Holiday Mini 6: Find Your Community in TRL Discussion...

The Rare Life ·

2025/01/09

Building connections can feel impossible when life is alreadyoverwhelming. That’s where The Rare Life discussion groups come in. In this episode, I’m pulling back the curtain on our discussion groups—virtual gatherings that feel more like a book club than anything else. You’ll hear from three amazing facilitators about the friendships, resources, and support they’ve found through this space. If you’ve been searching for a place where you can connect with other disability parents who just get it,

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00:09:53

Holiday Mini 5: The New Year for Disability Parents

The Rare Life ·

2025/01/02

For disability parents, the New Year doesn’t always meanlofty resolutions or big changes. It might mean survival mode, holding boundaries, or simply getting through the day. In this episode, I’m sharing your thoughts on New Year’s resolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to tentative hope, this is a conversation about giving yourself grace. If the traditional “new year, new me” doesn’t fit your life, this one’s for

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00:19:20

Holiday Mini 4: 2024 for Medical Parents | Highs and...

The Rare Life ·

2024/12/26

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, heartache, and triumphs we’ve all experienced this year (including a few entries that count as both highs AND lows.) From the heartbreaking realities of denied services and exhausting diagnoses to the incredible wins of first smiles and newfound independence, it’s a powerful reminder that no matter how hard it gets, we’re

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00:18:05

Holiday Mini 3: The Silent Suffering | A Poem Reading...

The Rare Life ·

2024/12/19

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 and the tears flow.In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who love us to

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00:25:00

Holiday Mini 2: Gift Giving Grief for Disability...

The Rare Life ·

2024/12/12

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. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it.In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and

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00:10:39

Holiday Mini 1: Boredom, G-Tubes, + Chatterboxes |...

The Rare Life ·

2024/12/05

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, despite the hardship. So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have probably never considered before this life of disability parenting. And in this episode, we’re sharing

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00:30:13

176: Season 10 Finale | A Spicy Season, Sticker Club...

The Rare Life ·

2024/11/21

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 parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet!So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe

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00:30:15

SC Mini #3 | The Last Day of Sticker Club & What It...

The Rare Life ·

2024/11/15

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 each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!)And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you’ve ever wanted to get a glimpse of how The Rare Life works behind the

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01:04:41

175: Our Children’s Medical Trauma w/ Katie Taylor, CCLS

The Rare Life ·

2024/11/14

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 it can be hard to know what is actually easing instead of compounding the trauma. Fortunately, there’s a specialty that focuses on this exact problem: enter the Child Life specialists. They’re here to help families provide as much comfort and as little trauma as possible for children in medical settings, including helping

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00:22:59

SC Mini #2 | Behind the Heart of a Listener and...

The Rare Life ·

2024/11/11

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 Rare Life has meant to her, how she helped plan this year’s Sticker Club as part of our fundraising committee, and how she’s helping us grow and reach new communities via a Spanish translation of the podcast! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you,

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01:40:25

174: A Case Against Silencing Disability Parents on...

The Rare Life ·

2024/11/07

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 perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages. And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm

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00:13:13

SC Mini #1 | Disability Parenting Book...

The Rare Life ·

2024/11/01

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 this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!) If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you,

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00:16:19

173: Everything You Need to Know About Sticker Club

The Rare Life ·

2024/10/31

It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!) In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome

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00:45:23

172: Nikole’s Story | Diagnosis Misinformation +...

The Rare Life ·

2024/10/24

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.) But despite this traumatic start, Nikole

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01:05:32

171: The Financial Strain of Medical Parenting w/...

The Rare Life ·

2024/10/17

It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and

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01:28:04

170: Hospitalizations | Triggers, Shoddy Sleep and...

The Rare Life ·

2024/10/10

There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful.In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and

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00:59:22

169: Crunchy Medical Parenthood w/ Suzi Boubion and...

The Rare Life ·

2024/10/03

Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals.This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.⠀⠀⠀⠀⠀⠀⠀⠀⠀In Ep 169 of

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00:49:07

168: Stephanie T.’s Story | Undiagnosed Son, a...

The Rare Life ·

2024/09/26

Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them.And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver. But even though the big plans for their family had to be adjusted, Stephanie doesn’t spend her time grieving the

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274 results

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