Best Madeline Cheney Podcasts (2025)

1
Inspired By Disabled Kids? What Feels Ok + What Feels Ick 19:42

5d ago19:42

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 uncomfortable question: Do our children exist to teach or inspire others? They unpack why that idea feels off, evenwhen the intention is good. In this episode, Madeline and Alyssa unp…

1
Mixed Feelings When Your Child’s Health Stabilizes w/ Jessica Loey 28:09

12d ago28:09

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 messy reality of “after.” They explore what it’s like to go from survival mode to something that looks more stable, and how this can bring up guilt, grief, and a strange sense of …

1
Medicaid Cuts | Implications for Families Like Ours + What We Can Do About It 26:43

19d ago26:43

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 episode, Madeline and Alyssa talk about what these federal cuts really mean for families of disabled and medically complex children. They break down the impacton Medicaid HCBS wai…

1
Groundhog Days, Gradual Changes, & Deep Family Ties | Marci’s Catch-Up 23:08

26d ago23:08

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, even as the years go by. In this episode, Marci returns to share what life looks like now, two and a half years after her conversation about grieving her daughter Freya’s inte…

1
Dreams That Stir Up Grief 16:47

1M ago16:47

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 speak, run, play, or show up in ways they can’t in waking life. Sometimes they comfort us. Sometimes they wreck us for the day. We share stories from the community about the…

1
How Your Monthly Cycling Might Be Impacting Your Caregiving Experience w/ Suzi Boubion 26:51

1M ago26:51

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 kids. From feeling like a superhero during ovulation to falling apart in the luteal phase, Suzi breaks down the emotional and physical rollercoaster that is living in a cyc…

1
Everything You’ve Ever Wanted to Know About Alyssa 14:37

2M ago14:37

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 member of the community. In this special mini episode, Alyssa shares more about herself, from her life as a caregiver and mom to her love of swimming, salted caramel ice c…

1
Book Review: “How to Handle More Than You Can Handle” by Amanda Griffith-Atkins 24:30

2M ago24:30

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, your jealousy, and not pushing them down just because “good parents don’t feel that way.” In this episode, Amanda Griffith-Atkins joins Alyssa and I to talk about her new bo…

1
Mindfulness for Medical Parents w/ Chrissy McGuire 13:54

2M ago13:54

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 shares how mindfulness helped her survive the NICU, find her footing as a single mom to two disabled kids, and notice the small moments of joy that still exist in the chaos. Chri…

1
192: Season 11 Finale | Poolside Chats with Texas ECI, Production Chaos, + Summer Mini Eps w/ Alyssa Nutile 40:36

3M ago40:36

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 covered before—this season stretched us in all the right ways. In this finale episode, I’m joined again by Alyssa to reflect on what made this season both overwhelming and meani…

1
191: Abortion + Parents of Disabled Kids w/ Alyssa Nutile 51:24

3M ago51:24

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 how these decisions are shaped by love, by fear, by systemic failures, and by the weight of what it means to bring a child into the world when you know what they might face.…

1
190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking 39:04

3M ago39:04

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 episode, Colleen tells the story of her son Owen’s explosive onset epilepsy, her family's long search for answers, and the brain surgery that changed everything. She opens up …

1
189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-Atkins 55:35

3M ago55:35

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. Others of us are grieving the very real possibility of losing them too soon. In this episode, therapist and fellow disability parent Amanda Griffith-Atkins joins me to talk about the co…

1
Mini-episode: Why We Are Delaying Our Next Few Episodes w/ Alyssa Nutile 21:35

3M ago21:35

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 current events have thrown a wrench into the works. In this episode, Madeline and Alyssa talk generally about some of the recent events that have come up, how the community…

1
188: Belief Systems + Ways They’re Affected by Disability Parenting w/ Ali, Bethany, Melissa, and Rachel 1:11:18

4M ago1:11:18

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 ways. Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share h…

1
187: Do You Miss Who You Used to Be Prior To Disability Parenting? w/ Alyssa Nutile 1:05:01

4M ago1:05:01

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 parents: grieving the carefree, well-rested version of ourselves while also seeing strength, resilience, and depth we didn’t know we had. In this episode, I’m joined by Al…

1
186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes 59:12

4M ago59:12

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 the NICU. In this episode, Leah talks about the emotional whiplash of life in the NICU, the slow heartbreak of delayed diagnoses, and the grief that comes with being told yo…

1
BONUS: The Current Political Climate + How Disability Parents Feel About It w/ Alyssa Nutile 54:06

4M ago54:06

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 constantly justify your child’s worth while watching essential supports unravel in real time. They also discuss the fury that bubbles up when people call your fear “politi…

1
185: Medical Parent Trauma | Dealing with Triggers + Ongoing Trauma w/ Rosey Schaefermeyer, LCSW 49:15

5M ago49:15

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. Medical trauma doesn’t just happen to our kids. It happens to us too. In this episode, therapist Rosey Schaefermeyer joins us for a deep dive into how medical trauma shape…

1
184: Rachel’s Story | Widowed During Pregnancy, Misdiagnoses, + Sibling Dynamics 34:29

5M ago34:29

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 a cross-country move while still carrying her son, Wells. But it wasn’t until after his birth that another challenge emerged: developmental delays, medical concerns, and th…

1
183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson 1:11:21

5M ago1:11:21

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 seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax. In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parentin…

1
182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins 48:35

5M ago48:35

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 bandwidth? It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our me…

1
181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been” 44:28

6M ago44:28

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 birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them. In this raw and deeply personal episode, Kait shares the heartbrea…

1
180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile 59:30

6M ago59:30

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 Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a di…

1
179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile 1:09:23

6M ago1:09:23

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. The weight of being the only one who knows all the details. The grief. The fear. The constant pressure of doing everything right with so little support. And that’s just sc…

1
178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control 56:47

6M ago56:47

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 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 amb…

1
177: Kicking Off Season 11 | Episode + Fundraiser Sneak Peeks w/ Alyssa Nutile 26:26

6M ago26:26

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 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…

1
Holiday Mini 6: Find Your Community in TRL Discussion Groups 12:18

7M ago12:18

12:18

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 discussiongroups—virtual gatherings that feel more like a book club than anything else. You’ll hear from three amazing facilitators about the friendships, resources, an…

1
Holiday Mini 5: The New Year for Disability Parents 9:53

7M ago9:53

9:53

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’sresolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to …

1
Holiday Mini 4: 2024 for Medical Parents | Highs and Lows 19:20

7M ago19:20

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, heartache, and triumphs we’ve all experienced this year (includinga few entries that count as both highs AND lows.) From the heartbreaking realities of denied services and …

1
Holiday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara Berasi 18:05

8M ago18:05

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 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, th…

1
Holiday Mini 2: Gift Giving Grief for Disability Parents w/ Amanda Griffith-Atkins 25:00

8M ago25:00

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. 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 i…

1
Holiday Mini 1: Boredom, G-Tubes, + Chatterboxes | What We’re Deeply Grateful For Because of Disability Parenting 10:39

8M ago10:39

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, 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…

1
176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa Nutile 30:13

9M ago30:13

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 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 y…

1
SC Mini #3 | The Last Day of Sticker Club & What It Takes to Make One Episode of The Rare Life with Alyssa Nutile 30:15

9M ago30:15

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 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 Th…

1
175: Our Children’s Medical Trauma w/ Katie Taylor, CCLS 1:04:41

9M ago1:04:41

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 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…

1
SC Mini #2 | Behind the Heart of a Listener and Supporter 22:59

9M ago22:59

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 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 S…

1
174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa Nutile 1:40:25

9M ago1:40:25

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 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 som…

1
SC Mini #1 | Disability Parenting Book Recommendations w/ Amanda Griffith-Atkins 13:13

9M ago13:13

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 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: jo…

1
173: Everything You Need to Know About Sticker Club 16:19

9M ago16:19

16:19

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 des…

1
172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up 45:23

9M ago45:23

45:23

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 Hi…

1
171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa Nutile 1:05:32

10M ago1:05:32

1:05:32

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…

1
170: Hospitalizations | Triggers, Shoddy Sleep and Food, + Discharge Hangover w/ Alyssa Nutile and Larisa Bothma 1:28:04

10M ago1:28:04

1:28:04

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 …

1
169: Crunchy Medical Parenthood w/ Suzi Boubion and Julianna Morasse 59:22

10M ago59:22

59:22

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…

1
168: Stephanie T.’s Story | Undiagnosed Son, a Ballroom + Fully Accepting the Now 49:07

10M ago49:07

49:07

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 Ste…

1
167: What We Want New Medical Parents to Know w/ Chandra Bloomfield 1:24:34

11M ago1:24:34

1:24:34

When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward. So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a bra…

1
166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion 57:01

11M ago57:01

57:01

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, an…

1
165: What We Want Our Child’s Therapists to Know, But Don’t Tell Them w/ Alex Farha 1:09:34

11M ago1:09:34

1:09:34

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework? Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability paren…

1
164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse” 51:45

11M ago51:45

51:45

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold foundherself in after the birth …

1
Season 10 Kickoff | Episode Sneak Peaks, Newsletters + ISO a Final Board Member w/ Alyssa Nutile 25:35

12M ago25:35

25:35

It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the …

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Madeline Cheney Podcasts

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