217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline

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.

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 taken away after birth, the grief over early parenting moments you miss, and the emotional toll of leaving the hospital without your child. We also explore why the NICU can feel so uniquely overwhelming: when the future is unclear, it becomes incredibly hard to imagine that anything good could be waiting on the other side. And a big thank you to one of our long-time sponsors MOOG Medical.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:Visit MOOG’s website to see the many ways they support families like ours!Listen to Ep 161: Having a Non-disabled child after their disabled child.Listen to Ep 140: Alyssa’s Story.Listen to Ep 26: The NICU Experience with Madeline.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.

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.