Shows / The Rare Life
The Rare Life
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…
Episodes
- The Rare Life
Mixed Feelings When Your Child’s Health Stabilizes w/ Jessica Loey
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…
- The Rare Life
Medicaid Cuts | Implications for Families Like Ours + What We Can Do About It
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…
- The Rare Life
Groundhog Days, Gradual Changes, & Deep Family Ties | Marci’s Catch-Up
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…
- The Rare Life
Dreams That Stir Up Grief
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…
- The Rare Life
How Your Monthly Cycling Might Be Impacting Your Caregiving Experience w/ Suzi Boubion
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…
- The Rare Life
Everything You’ve Ever Wanted to Know About Alyssa
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…
- The Rare Life
Book Review: “How to Handle More Than You Can Handle” by Amanda Griffith-Atkins
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…
- The Rare Life
Mindfulness for Medical Parents w/ Chrissy McGuire
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…
- The Rare Life
192: Season 11 Finale | Poolside Chats with Texas ECI, Production Chaos, + Summer Mini Eps w/ Alyssa Nutile
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…
- The Rare Life
191: Abortion + Parents of Disabled Kids w/ Alyssa Nutile
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…
- The Rare Life
190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking
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…
- The Rare Life
189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-Atkins
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…
- The Rare Life
Mini-episode: Why We Are Delaying Our Next Few Episodes w/ Alyssa Nutile
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…
- The Rare Life
188: Belief Systems + Ways They’re Affected by Disability Parenting w/ Ali, Bethany, Melissa, and Rachel
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…
- The Rare Life
187: Do You Miss Who You Used to Be Prior To Disability Parenting? w/ Alyssa Nutile
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…
- The Rare Life
186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes
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…
- The Rare Life
BONUS: The Current Political Climate + How Disability Parents Feel About It w/ Alyssa Nutile
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…
- The Rare Life
185: Medical Parent Trauma | Dealing with Triggers + Ongoing Trauma w/ Rosey Schaefermeyer, LCSW
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…
- The Rare Life
184: Rachel’s Story | Widowed During Pregnancy, Misdiagnoses, + Sibling Dynamics
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…
- The Rare Life
183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson
Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always…
- The Rare Life
182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins
When your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The…
- The Rare Life
181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been”
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…
- The Rare Life
180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile
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…
- The Rare Life
179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile
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…
- The Rare Life
178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control
When Jessica Fein’s daughter, Dalia, was diagnosed with a rare degenerative disease (MIRF syndrome) after a long diagnostic process, she was thrown into…
- The Rare Life
177: Kicking Off Season 11 | Episode + Fundraiser Sneak Peeks w/ Alyssa Nutile
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…
- The Rare Life
Holiday Mini 6: Find Your Community in TRL Discussion Groups
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…
- The Rare Life
Holiday Mini 5: The New Year for Disability Parents
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…
- The Rare Life
Holiday Mini 4: 2024 for Medical Parents | Highs and Lows
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…
- The Rare Life
Holiday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara Berasi
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 Rare Life
Holiday Mini 2: Gift Giving Grief for Disability Parents w/ Amanda Griffith-Atkins
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…
- The Rare Life
Holiday Mini 1: Boredom, G-Tubes, + Chatterboxes | What We’re Deeply Grateful For Because of Disability Parenting
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…
- The Rare Life
176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa Nutile
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…
- The Rare Life
SC Mini #3 | The Last Day of Sticker Club & What It Takes to Make One Episode of The Rare Life with Alyssa Nutile
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…
- The Rare Life
175: Our Children’s Medical Trauma w/ Katie Taylor, CCLS
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…
- The Rare Life
SC Mini #2 | Behind the Heart of a Listener and Supporter
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…
- The Rare Life
174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa Nutile
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…
- The Rare Life
SC Mini #1 | Disability Parenting Book Recommendations w/ Amanda Griffith-Atkins
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…
- The Rare Life
173: Everything You Need to Know About Sticker Club
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…
- The Rare Life
172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up
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…
- The Rare Life
171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa Nutile
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…
- The Rare Life
170: Hospitalizations | Triggers, Shoddy Sleep and Food, + Discharge Hangover w/ Alyssa Nutile and Larisa Bothma
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…
- The Rare Life
169: Crunchy Medical Parenthood w/ Suzi Boubion and Julianna Morasse
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…
- The Rare Life
168: Stephanie T.’s Story | Undiagnosed Son, a Ballroom + Fully Accepting the Now
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…
- The Rare Life
167: What We Want New Medical Parents to Know w/ Chandra Bloomfield
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…
- The Rare Life
166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion
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…
- The Rare Life
165: What We Want Our Child’s Therapists to Know, But Don’t Tell Them w/ Alex Farha
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…
- The Rare Life
164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”
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…
- The Rare Life
Season 10 Kickoff | Episode Sneak Peaks, Newsletters + ISO a Final Board Member w/ Alyssa Nutile
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…
- The Rare Life
Summer Mini #12: Adjusting to Disability Parenting as a Single Mom | Maddison’s Catch-Up
It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she…
- The Rare Life
Summer Mini #11: Family Planning Decisions + Changing Sibling Relationships | Madeline’s Catch-Up
Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son’s condition, and another…
- The Rare Life
Summer Mini #10: Finding a New Home + Starting Over | Tiffany’s Catch-Up
When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her…
- The Rare Life
Summer Mini #9: Our Complicated Relationship with Medically Complex Facebook Groups
You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us…
- The Rare Life
Summer Mini #8: Rebuilding After Life-Changing Loss | Kari’s Catch-Up
Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the…
- The Rare Life
Summer Mini #7: Everything You’ve Ever Wanted to Know About Madeline
Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling…
- The Rare Life
Summer Mini #6: The Oddly Specific Things We Grieve as Parents of Medically Complex Kids
There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini…
- The Rare Life
Summer Mini #5: Childhood Cancer + Changing Perspectives | Vanessa’s Catch-Up
After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a…
- The Rare Life
Summer Mini #4: Birthdays for Our Medically Complex Kids and the Many Emotions They Can Bring Up
Birthdays, as we understand them societally, are a time for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays…
- The Rare Life
Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your…
- The Rare Life
Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your…