The Rare Life

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 when a new piece of equipment arrives, to the frustration of a system that makes you fight so hard to get something your child may not even like, there's so much more to this topic than it seems on the surface.We get into the design problems that make managing equipment harder, the disagreements that come up when one partner is ready to try everything and the other isn't, the comments from other people that land all wrong, and what it actually looks like to embrace your child’s equipment in whatever way you can.Whatever your relationship with your child's equipment right now, this episode has something for you.And a huge thank you to our sponsor, MOOG Medical for making some parts of managing our children’s equipment a little easier with their 24/7 helpline and for making this episode possible!Links:Visit MOOG’s website to see themany ways they support families like ours!Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups! Listen to Ep 125: Traveling with Medically ComplexKids.Listen to Ep 153: Hurtful Things Loved Ones Say.Listen to Ep 214: Relocating for Our MedicallyComplex Kids.Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode.

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 had imagined. He shares how that uncertainty led him to emotionally distance himself early on, the role grief and fear played in that response, and how his connection to his daughter has grown and changed over time.This conversation also touches on learning to be present, understanding your role and strengths as a parent, and how isolating this life can feel, even as you look for connection with others who get it.This is one you can’t miss.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 146: The Dad Perspective.Listen to Ep 151: Finding Other Disability ParentFriends.Listen to Ep 197: Difficulty with Making DisabilityParent Friends.Follow Robin on Instagram @thedadadays!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode 

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 impression that it’s rude NOT to answer a question.But if you’ve ever wanted permission to just not answer invasive questions from strangers, this episode is here to validate you. I’m talking with James Catchpole, author and publisher, about his experience as a disabled adult and how he deflects or simply (but politely) refuses to answers questions from strangers about his disability. He also shares about his experience as a disabled child and how his parents were able to set a helpful example for how on how to navigate questions about his disability as he grew older. Whether your child will eventually be able to advocate for themselves or if you as the parent will be their advocate indefinitely, this episode will give you lots to think about when it comes to dealing with uncomfortable and invasive questions about your child’s disability or medical status.2026 Update: We’re resharing this always relevant episode that was originally published in 2023 with our updated thoughts at the end. We hope you enjoy!Links:Listening to Ep 100 on Raising Awareness.Get a copy of James’ book “What Happened to You?”Read a collection of parenting essays written bydisabled parents (including a chapter by James and his wife Lucy.)See more of James’ work and writing on hiswebsite!Follow James on Instagram!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Donate to the podcast or Contactme about sponsoring an episode

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, those dynamics have a way of wearing on a family over time.In this episode, Kyrie joins The Rare Life to talk about the gap between how mothers and fathers can be received by medical providers, and what it costs families when those assumptions go unchecked. We get into the emotional toll of having to manage how you come across just to be believed, the medical trauma that quietly changes how we show up over the years, and the way this can play out differently depending on your family — including the families where it's dad who feels dismissed and overlooked.If you've ever felt like you had to work harder than your partner just to be heard, or wondered why the same concern lands so differently depending on who's saying it, this one will resonate.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups! Follow us on Instagram @the_rare_life!Follow Kyrie on Instagram @kyrieherman!Donate to the podcast or Contact me about sponsoring an episode.

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 one rare condition, but a genetic mutation so uncommon that Thor was one of the first documented cases in the world. In this episode, Cindy shares the story of Thor’s early years: surgeries shortly after birth, years of hospitalizations, and learning how to advocate for his medical needs again and again. She also talks about the emotional side of caregiving: the grief that shows up in unexpected moments, the challenges of navigating medical systems, and the complicated transition that happens when survival mode finally begins to ease. Plus, she shares her thoughtful perspectives on the importance (and difficulty) of including Thoren in as many places as possible and why that can prove to be so difficult sometimes.Finally, a big thank you to our sponsor for today’s episode, Huckleberry Hiking! Learn more about how they can help make hiking more accessible for your disabled kiddo here!Links:Visit Huckleberry Hiking’s website.Listen to Ep 180: Does Disability Parenting EverGet Easier?Connect with Cindy on Instagram @montanareinhard!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode. 

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 like when behaviors don’t fade with age, how it changes when kids get older and stronger, and what it’s like to live in constant hypervigilance especially when there are siblings in the mix.We also dig into isolation, exclusion (even in disability spaces), and why access to services can depend on having the “right” labels beyond a rare disease diagnosis. If you’ve ever felt like this part of your child’s disability is the hardest to explain and the heaviest to carry, this episode is for you.And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.Links:Share our FUEL The Rare Life fundraiser!Listen to Ep 148: Katie’s Story.Listen to Ep 197: Difficulty with Disability ParentFriendships.Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.Listen to Ep 151: Fostering Friendships with OtherDisability Parents.Follow Annie on Instagram @dranniekuo!Follow Katie on Instagram @averyrareadventure!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.   

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 our specific kids, and the brutal catch-22 of needing more financial support but not being able to afford to move somewhere that offers it. We also get into the Medicaid waiver maze, the politics and safety fears driving families out of certain areas, and the complicated grief on both sides — whether you want to move and can't, or moved and left everything you'd built behind.There's no single right answer, and no one place to point you toward. But if you've ever looked around and wondered whether somewhere else could be better, this episode is for you.And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.Links:Share our FUEL The Rare Life fundraiser!Learn about Medicaid and waiver programs in your state at Kid’s Waivers.Listen to Ep 171: Financial Strain.Listen to Ep 135: Career Impact.Listen to Ep 139: In-Home Nursing.Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode. 

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 with a medically complex child and in-home nursing, and the long road to reclaim her mental and emotional health in the aftermath.From all the ways her community changed to the impact on siblings of disabled children, Deonna covers so much ground in this episode. If you’ve ever felt like your life has been turned upside down and you’re worried that you’ll never feel grounded again, this episode will offer you a warm embrace and so much hope.And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.Links:Share our FUEL The Rare Life fundraiser!Listen to Ep 211: Trachs & Vents.Listen to the Raising Disabled podcast.Follow Deonna on Instagram @deonnawadeart!Follow Raising Disabled on Instagram @raisingdisabledpodcast!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.

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 community for getting through these tough moments. Whether you’re planning for an upcoming surgery for your child or you’ve been through one in the past and feel like you’re still processing, there’s something for you in this episode. And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.Links: Share our FUEL The Rare Life fundraiser! Listen to Ep 170: Hospitalizations. Listen to Ep 180: Does It Get Easier? Listen to Ep 140: A Mistaken Brain Surgery (Alyssa’s Story). Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode.

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 temporary and those who’ve had to come to terms with permanence. We talk about hypervigilance, sleep deprivation, the impossible responsibility of keeping your child breathing at home, and the strange duality of fear and gratitude that so many trach parents carry at the same time.If you’re facing trach conversations now, living with one already, or trying to understand what this life actually looks like beyond the hospital walls, this episode offers realism, validation, and the reminder that you’re not alone in holding all of this.Thank you to the generous sponsors for today’s episode, Imagine Pediatrics.⁠And don’t forget to join us on Feb 1st to kick off our FUEL The Rare Life fundraiser!Links: Learn more about Imagine Pediatrics.Listen to Ep 139: In-Home Nursing.Listen to Ep 90: Living with Sleep Deprivation.Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave usa rating or review in your favorite podcast app

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 caregivers, judgment has a way of creeping into places we hoped would feel safe.This conversation also explores what it takes to rebuild trust in yourself after years of being second-guessed, and how many parents eventually reach a place of saying, “I am the expert here,” even when that comes with loss, boundary-setting, or strained relationships.If you’ve ever felt like no choice is the “right” one, or like you’re parenting under a microscope, this episode will resonate.

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 changing before she was ready. She also talks about the shock of facing the same diagnosis again with her second daughter, and how experience can simultaneously make you feel more prepared while still reopening old grief.If you’ve ever had to trust your instincts and fight for a diagnosis your child needed, this conversation will hit close to home. Links: Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave usa rating or review in your favorite podcast app

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 season, details about our February Friends & Family Fundraiser during Rare Disease Month, and discussion groups, including the launch of our first international group.Finally, we’re wrapping up this season opener with clips from the first few episodes. Don't miss it!Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app!

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 season, details about our February Friends & Family Fundraiser during Rare Disease Month, and discussion groups, including the launch of our first international group.Finally, we’re wrapping up this season opener with clips from the first few episodes. Don't miss it!Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app! 

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 hundreds of community responses, we explore the emotional impact of these experiences—the isolation, the grief, the disappointment, and the shift in how we see these family bonds once these hurtful patterns emerge. We also touch on the clarity that can come from moments like this: boundaries that become necessary, expectations that change, and the people who rise to the occasion when others don’t.If you’ve ever felt this kind of hurt from the people closest to you, we hope you feel seen and understood after this episode.And a big thanks to our sponsor for this episode, the makers of the incredible documentary, The Zebra & The Bear!Links:Watch The Zebra & The Bear (coming to streaming platforms the day after Thanksgiving!)Fill out our contact form to join upcoming discussion groups!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app.

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 keep this community running.Links:Join Sticker Club! Support The Rare Life and get a thankyou sticker (or four!)Follow Amanda onInstagram.Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents ofChildren with Rare Conditions. And if you love this podcast, please leave us a rating or review in yourfavorite podcast app!

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 systems that weren’t built for kids like ours.If you’ve ever struggled with the emotional complexity ofthese relationships, this conversation will help you feel understood and lessalone. Links:JoinSticker Club!Support The Rare Life and get a thank you sticker (or four!)Listento Ep 140: Alyssa’s Story.Listento Ep. 67: What Your Child’s Doctors WantYou to Know, But Don’t Tell You.Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app 

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 meant to reimagine milestones through a different lens, and howshe’s built community when support is scarce. She also talks about the emotional weight siblings carry, and the ongoing, complicated role of faith in Avery’s care.If you’re learning to acknowledge the hard while still making room for joy, this episode is one you can’t miss. Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Abbey on Instagram @abbeybenj!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app 

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 practical, compassionate guidance for finding your way back to each other, even if right now, your marriage feels like it’s in survival mode.If you’ve ever wondered what “making it work” really looks like when life is this hard, this conversation offers validation, compassion, and a path back to understanding.Links:Get a copy of How to Handle More Than You Can Handle by Amanda Griffith-Atkins.Listen to Ep 156: Should I Get a Divorce?Listen to Ep 180: Does It Get Easier?Listen to Ep 159: Sharing the Mental Load.Listen to Ep 147: Sexual Intimacy.Listen to Ep 146: The Dad Episode.Listen to Ep 182: Hobbies.Get a copy of Fair Play by Eve Rodsky.Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Amanda on Instagram @amanda.griffith.atkins!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 has struggled, beenstrengthened, or maybe experienced a little bit of both, this episode has something you can relate to.Links:Listen to Ep156: Should I Get a Divorce?Listento Ep 187: Do you Miss Who You Used to Be?Listento Ep 159: Sharing the Mental Load.Listento Ep 147: Sexual Intimacy.Listento Ep 171: Financial Strain.Listento Ep 99: Family Planning.Listento Ep 146: The Dad Episode.Listento Ep 139: In-Home Nursing.Listento Ep 135: Careers.Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app