The Rare Life

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

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 her own mental health looked like in the midst of caregiving, and how she eventually found purpose in advocacy and community. From becoming her daughter’s “historian” to learning that even the strongest caregivers break down, Roya’s story captures so many of the aspects that shape the lives of disability parents.If you’ve ever had to rebuild yourself in the middle of medical chaos, this conversation will hit home. Links: Listen to Ep. 180: Does Disability Parenting Ever GetEasier?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!Connect with Roya on Instagram @roya.malaekehDonate to 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 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 that follows, the way grief changed her relationships and community, and the small ways she’s keeping Payton close.She also opens up about the support that helped her most, her advice for those walking alongside grieving parents, and what she wishes others understood about the grievingprocess after child loss.Just a note: this episode covers themes of grief,child loss, end of life decisions, and more. Please listen with care.If you have lost a child, may face child loss in the future, or simply care for someone who has been in a similar position, this is an episode you can’t miss.Links: Listen to Ep 152: Stephanie’s Story.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!Connect with Stephanie on Instagram @steph_stanley12Donateto 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!  

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 becoming a parent and the heartbreak of another family’s separation, the shock of adiagnosis, the fog of early grief, the gaps in family medical history, and the delicate balance of honoring her daughter’s birth family while advocating for her care.If you’ve ever wondered what it’s really like to navigate disability and adoption at the same time, this conversation pulls back the curtain. 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!Connect with Kristen on Instagram @deep_delightful_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.Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app! 

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 overwhelming grief, advocated for her son in a complex medical world, and discovered the ways in which love,light, and loss can coexist.If you’ve ever lived through what felt like a never-ending medical crisis, or wondered if joy could return after devastation, Ashley’s story is for you.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!Connect with Ashley on Instagram @ash.bouch!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.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app! 

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 longing for people who “just get it.” Plus, they share a few pieces of advice on how to overcome some of these potential roadblocks.If you’ve ever wondered why making and keeping friends feels so complicated in this world, this conversation will remind you that you’re not alone.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.Listen to Ep 151: Fostering Friendships with OtherDisability Parents. Listen to Ep 154: Deaths in the Community.Listen to Ep 194: Season 12 Kickoff forMadeline’s big announcement!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 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, the relief of knowing their family is complete, and the complicated emotions that sit in between.If you’ve felt sadness, certainty—or both at the same time—about stopping at one, we hope this episode will feel deeplyfamiliar.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 99: Family Planning.Listen to 194: Season 12 Kickoff forMadeline’s big announcement!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 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 relationships, just to name a few.Plus, we have a big announcement! This season is going to be a little different than the last 11, but don’t worry. It’s all good things, and The Rare Life isn’t going anywhere anytime soon.Finally, we’re wrapping up this season opener with clips from the first four episodes. This is one episode you’re not going to want to miss!Links:Join The Rare Life newsletter and never miss an update!Listen to the Getting to Know Alyssa episode.Listen to 140: Alyssa’s Story.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.

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 prenatal diagnoses. We’re also sharing a powerful listener testimonial from Michelle, who describes how her favorite episode from the season helped her feel validated and seen.And of course, we’re giving you a little peek at what’s ahead, including our summer mini episodes (with some solo episodes from Alyssa!), our upcoming merch fundraiser, and a big announcement coming with the Season 12 kickoff.Thanks for listening, for sharing, and for being part of this community. Whether this was your first season or your eleventh, we’re so glad you’re here ❤️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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 and grief into that decision-making space and why so many parents are left feeling like there was never really a choice at all.It’s a heavy conversation. And it’s also a deeply human one. If you’ve been there, are there, or just want to understand this conversation better, this episode is for you. Links:Hear Alyssa’s other episodes: 187: Do You Miss Who You Were? BONUS: The Political Climate, 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 140: Alyssa’s Story, 125: Travel w/ Disabled KidsJoin The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Alyssa at @caffeinated_caregivers!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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 a disabled or medically complex child.We explore how this grief can morph and change, how it shows up in the quiet, ordinary moments, and how deeply human it is to wish things were easier —not because our children aren’t loved, but because they so deeply are. We also talk about why shame so often gets tangled up in these emotions, and what it looks like to let yourself feel without guilt.Also, a big thanks to Kate Farms for sponsoring this important episode!LinksLearn more about the many products Kate Farms offers for our formula and tube-fed kids!Follow Amanda on Instagram @amanda.griffith.atkins!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.Follow the Facebook page.Listen to previous episodes with Amanda:Ep 182 on HobbiesEp 171 on Financial StrainEp 159 on Sharing the Mental LoadEp 156 on Getting a DivorceEp 153 on Hurtful Things Loved Ones SayEp 147 on Sex and Disability ParentingEp 142 on If My Disabled Child Outlives MeEp 135 on Career and Family RolesEp 132 on Self-CareEp 131 on Chronic StressEp 130 on Anticipatory GriefEp 99 on Family PlanningEp 85 on Parental IdentityEp 81 on Health Anxiety& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.

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 having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never really existed at all.This episode has something for absolutely everyone, no matter your religious or spiritual background, and I’m so proud of how open and respectful each of these women were as they shared their stories. This is one episode you can’t miss!Also, a big thanks to Kate Farms for sponsoring this important episode! LinksLearn more about the many products Kate Farms offers for our formula and tube-fed kids!Listen to Episode 83 Part 1 & Episode 83 Part 2 to hear An Evolution in Faith with Kimberly Arnold.Follow Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis on Instagram!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.Follow the Facebook page.

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 come with identity loss, personality shifts, and how we change when our child’s life is on the line, plus the unexpected ways we’ve grown and adapted.Links:Hear Alyssa’s other episodes: 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 140: Alyssa’s Story, 125: Travel w/ Disabled KidsFill out our contact form to join upcoming discussion groups!Follow Alyssa at @caffeinated_caregivers!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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 about what it means to create an inclusive family, not just for Camilla, but for her neurotypical little sister, Paisley. From rude comments at the grocery store to intentionally planning joy-filled days, Leah opens up about what’s changed in her parenting, her worldview, and her faith.This episode is about curveballs, sibling dynamics, and sometimes, saying “ew” to rude strangers. It’s a funny, real, and tender one.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical  Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.Fill out our contact form to join upcoming discussion groups!Follow Leah at @leahcrum_!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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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, and why it’s so easy to feel stuck in survival mode. Rosey shares how trauma builds on itself, why some moments become impossible to shake, and what parents can do to move forward while still being present for their children.If you’ve ever wondered why a single smell or sound can send you spiraling and how you can break this harrowing cycle, this episode is for you. Links:Get a copy of Anchored by Deb Dana.Find a trauma-informed therapist with Amanda Griffith-Atkins' therapist directory.Listen to Ep 25 on EMDR Therapy with Rosey.Listen to Ep 138 on how to find a trauma-informed therapist.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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 episode, Rachel shares her family’s long road to a rare diagnosis, the complicated emotions of realizing your child’s future won’t look like you imagined, and the unique challenges of raising a disabled child as a solo parent. She shares the unique challenges of raising a hyper-social child who struggles with deep friendships and the sibling dynamics that come with disability.If you’ve ever found yourself grieving what could have been while still trying to embrace what is, Rachel’s story will resonate.Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!Links:Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!Fill out our contact form to join upcoming discussion groups!Follow Rachel on Instagram @rachel_horne!Follow the JdVS Foundation on Instagram @jdvs_foundation!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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they’ve tried has truly worked.She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical  Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries.Listen to Hailey’s husband Derek on 146: The Dad episode.Get Hailey’s book, What is Epilepsy?Fill out our contact form to join upcoming discussion groups!Follow Hailey at @growing_juniper!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.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!