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 family living with disabilities.
Episodes
New Launch: The NICU Survival Guide w/ Cindy Reinhard and Ashley Caywood (Summer Mini #10)
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 our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most.If you’d like to help, send us a message on Instagram, ontherarelife.org/cont
When You and Your Child are Both Medically Complex with Sarah (Summer Mini #9)
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 continue to uncover your own medical complexities. That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and w
Single Medical Parenting w/ Danielle (Summer Mini #8)
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 emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered p
Why Asking for Help Feels So Hard (Summer Mini #7)
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 ask for it.From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for. A huge thank you to our sponsor for this summer season, Real Food Blen
Sexual Health for Disabled Youth w/ Jill Arneson & Amanda Griffith-Atkins (Summer Mini #6)
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 activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode.A huge tha
Clinical Trials | Should I Enroll my Disabled Child in One? (Summer Mini #5)
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 aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences.A huge thank you to our sponsor for this summer sea
How Time in Nature Impacts Disability Parents (Summer Mini #4)
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, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside.A huge thank you to our sponsor for this summer season, Real Food Blends! Re
Traveling with Disabled Kids Tips and Tricks (Summer Mini #3)
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 a priority for your family, it is possible with the right planning and preparation.In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane s
The Forgotten Fathers | To The Dads Who Hold It All Together w/ Lizzie (Summer Mini #2)
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 ways dads are often expected to carry everything without being seen.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people
Summertime Feels, Disability Ed. (Summer Mini #1)
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 about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real
228: Season 13 Finale | Biggest Impacts, Hardest Listens, + A Special Guest
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 mom to Miles, to look back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also sharing listener reflections, talking through the clips from all 14 episodes, and discussing why this s
227: Abuse and Neglect Safeguards | Who We Can Trust + How to Protect Our Disabled Children
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 care for our disabled and medically complex kids. And honestly? That can feel terrifying.In this episode, we're exploring one of the hardest topics parents in this community navigate: preventing abuse and neglect for chi
226: Should I Be Raising Awareness About My Child’s Diagnosis?
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 already overwhelming life. Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process?In this episode, Alyssa and
225: Schooling Options for Disabled Kids | Advocacy, Access + Emotional Toll of Navigating Tough Choices w/ Rachel Redmond
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, therapies, staffing, inclusion, and what your child can realistically access.In this episode, Alyssa is joined by Rachel, a special education professional and fellow disability parent, to talk about the realities of navigatin
224: Emergencies & ER Visits | Making the Call, Coping with “What Ifs” + Survival Tips
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 and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the b
223: Noelle’s Story | A Terminal Diagnosis, Making Decisions Without a Roadmap, + Longterm Advocacy
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 progressive, terminal disease that no one, including their doctors, knew much about.In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the o
222: Intellectual Disabilities | Complicated Grief, Stigma, and Shifting Perspectives w/ Amanda Griffith-Atkins, Madeline and Alyssa
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 raising a child with an intellectual disability in that world? In this episode, Alyssa, Amanda, and Madeline get honest about all of it: the grief that's hard to express, the fear that you won't be able to conn
221: Equipment for Our Medically Complex Children | Grief, Gratitude, and Everything In Between
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 (and homes), complicated feelings can come up.In this episode, Madeline and Alyssa talk about the emotional, logistical, and financial reality of living with medical and mobility equipment. From the grief that can show up w
220: Robin’s Story | Preparing for the Worst, Staying Present, + Embracing a Different Type of Fatherhood
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 this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility that his daughter might not live long and might require a completely different kind of parenting than he ha
219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
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 questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the imp
218: Moms vs. Dads in the Medical System | Dismissal, Assumptions + the Cost of Not Being Trusted w/ Kyrie Herman
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 being dad. Sometimes that means being dismissed while your husband gets taken seriously. Sometimes it means the opposite — dad gets treated like wallpaper while mom is assumed to be the only one who knows anything. Either way
217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline
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 watching doctors care for your tiny baby while you stand nearby unable to help.In this episode, Alyssa and Madeline unpack the NICU experience through stories from the Rare Life community, covering the shock of having your baby
216: Cindy's Story | Survival Mode, Unexpected Grief + Navigating Inclusion and Accessibility
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 uncertainty loom large over everything.For Cindy, that uncertainty started before her son Thoren was even born. After a routine ultrasound raised concerns, her family began a medical journey that would eventually reveal not just
215: Behaviors | Isolation, Guilt + Why It’s Not About “Control” w/ Annie and Katie
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 feel like we’re failing, because it’s so hard to “control.”In this episode, Alyssa talks with Annie and Katie about behavioral disability and nervous system dysregulation in rare disease parenting. We cover what it looks li
214: Relocation for Better Support | All the Factors to Consider + Complicated Decision-Making w/ Madeline
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 f
213: Deonna’s Story | A Childhood Injury & Stroke + Healing After Sudden Life Changes
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
212: Surgeries | The Feelings We Have Before, During, and After + How Families Cope w/ Madeline
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 he
211: Trachs & Vents | Fear, Hypervigilance, & Finding a New Normal w/ Ashley Caywood
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
210: Receiving Judgement for Disability Parent Decisions w/ Madeline
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 a
209: Kenya’s Story | When Lightning Strikes Twice + Trusting Your Instincts
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 f
208: Season 13 Kickoff | A New Theme + Sneak Peeks
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 i
207: Season 12 Finale | Switching Hosts, Behind the Scenes + A Unanimous Favorite
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 seas
206: When Family Rejects Your Disabled Child + the Hurt it Causes w/ Madeline
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 b
TRL + The Power of Feeling Less Alone
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
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins
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 physic
205: Our Relationship With Our Child’s Medical Team w/ Madeline
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 t
Bonus: 2025 Check-in with Disability Parents | Anxiety, Heaviness, + Navigating Relationships in a Polarizing Climate w/ Madeline
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
204: Abbey's Story | An Ultra-rare Diagnosis, Shifting perspectives + Holding onto Faith
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
203: How to Strengthen Your Marriage When You’re Always in Survival Mode w/ Amanda Griffith-Atkins
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 m
202: All the Ways Our Marriages are Impacted by Disability Parenting
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, teamw
201: Roya's Story | A Diagnosis Without a Map, Learning to Advocate + the Journey Back to Herself
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
200: Facing End of Life Choices + The Way Life Changes After Child Loss w/ Stephanie Stanley
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 th
199: Adopting a Medically Complex Child w/ Kristen Henry
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
198: Ashley’s Story | A Year in the NICU, Impossible Choices + Complex Joy
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 overwhelm
197: When Meaningful Friendship with Other Disability Parents Feels Elusive w/ Madeline Cheney
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 share community stories about what makes these friendships so hard to build and sustain: the comparisons that creep in, the exhaustion that leaves little room for connection, the grief of losingfriends along the way, and the
196: One & Done | Deciding Not to Have More Children After Disability
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 even feel like a decision at all.In this episode, Alyssa shares responses from hundreds of parents who live in this reality: the sadness of not giving their child a sibling, the guilt of choices that never felt like choices, t
195: Ali’s Story | An Invisible Disability, Living in Survival Mode + Giving Up Her Dream Career
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) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.In this episode, Ali shares it all: how care
194: Kicking Off Season 12 | Episode Sneak Peeks + a BIG Announcement
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 each other.We’ll be sharing episodes featuring incredibly tender stories, exploring the difficulty around making friends with other disability parents, and discussing the many ways this life can change our romantic re
When Therapists Leave | Feelings That Come Up + Knowing When It’s Time to Cut Ties
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 arelief, but it’s still exhausting to start over.In this mini episode, Alyssa reads your experiences ofloving and losing great therapists, finding the courage to end relationships that weren’t the right fit, and navigating the me
How To Talk To Kids About Disabilities
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 we each approach these conversations with our own kids, from siblings and cousins to the curious child at the park. We talk about usingneutral language, why we skip the sugarcoating, and the importance of following your k
Inspired By Disabled Kids? What Feels Ok + What Feels Ick
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 unpack the tension between learning from your child and
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 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 disconnection from your pas
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.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 waivers, what states can (and might) do next, and why
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 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 intellectual disability. Sheopens up about the slow pac
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 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 longing, guilt, tenderness, and pain these dr
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 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 cycling body.They talk about the specific ways each ph
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 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 cream, and why getting dressed up feels like the ul
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 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 book How to Handle More Than You Can Handle: Caring f
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 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.Chrissy also leads us through a guided meditation,
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 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 meaningful, from grief and seizures to politics and pren
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 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.We also explore what it means to carry both love an
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 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 about the loneliness of being undiagnosed, the
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 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 complicated grief that comes with raising
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 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 has been feeling about it, what it says about the
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 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 how their faith has changed since
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 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 Alyssa Nutile to unpack the big, messy feelings that c
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 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 your child may not live to adulthood.We also talk abo
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 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 “political,” the heartbreak of realizing who around you do
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 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 shapes parents, how it lingers in our bodies and minds,
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, 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 the beginning of a diagnostic odyssey.In this episod
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 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 parenting a child with severe, refractory epilepsy. She tal
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 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 medicalized life can be game-changing.In Ep 182 of Th
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 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 heartbreak of losing Avery, the terrifying rollercoaster of
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 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 disability parent, even if life doesn’t always feel l
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 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 scratching the surface.In this episode of The Rare Li
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 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 diagn
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 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-
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 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
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 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 giv
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 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 f
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