The Rare Life

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!

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 emotional whiplash of unexpected good news, and the identity shift that comes with raising a child with complex needs.We also talk about how Electric Love retreats came to be and why sometimes the most healing thing you can do is a tough hike with people who get it.Also, a big thanks to Kate Farms for sponsoring this important episode! Links:Learn more about the many products Kate Farms offers forour formula and tube-fed kids!Learn more about Electric Love Retreats!Listen to Ep 183on Epilepsy with Hailey Adkisson.Follow Electric Love on Instagram @electric_love_retreats!  Follow Colleen on Instagram @raising_owen!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Access the transcript on the website here. And if you love this podcast, pleaseleave 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.

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 world we’re living in right now, and why some of the upcoming topics needed just a little more time and context before they go out into the world.Join us for this quick mini-episode and check back next week for your regularly scheduled content! LinksJoin 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.

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!

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 doesn't care, and the exhaustion of never being allowed to rest.This isn't about debates or party lines—it's about fear, frustration, and the deep grief of feeling unsupported by those in your community.If you're feeling angry, bitter, or broken-hearted, this episode is for you.Links:Follow @margot_thebrave for more information on the situation at NIH.Listen to Ep 81: Health Anxiety.Listen to Ep 185: Medical Parent Trauma.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!

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!

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 The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that can come with doing something “just for you,” and how even the smallest hobbies can become a lifeline.Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!Links:Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!Fill out our contact form to join upcoming discussion groups!Follow Amanda at @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.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 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 Addie's early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a non-disabled sibling, and the emotions that come with it all.From NICU trauma to navigating life after loss, Kait's story is one of resilience, heartbreak, and unexpected love. If you've ever felt like your parenting journey didn't go as planned, you'll find so much to relate to here.Plus, our 2nd Annual Friends and Family Fundraiser is live! We're not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn't do this without you!And a big thank you to MOOG, our sponsor for this episode! Links:Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!Visit MOOG's website to see the many ways they support families like ours!Fill out our contact form to join upcoming discussion groups!Follow Alyssa and Erica 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!

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 like it's getting easier.If you've been feeling lost and overwhelmed in this parenting journey, this episode is here to give you an anchor point.And on February 14, we're launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we're not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn't do this without you! Links:Ask your community todonate to our Friends and Family Fundraiser between Feb 14-Feb 28!Or ask them to donate via Venmo @the_rare_life!Listen toEp 170 all about hospitalizations.Listen toEp 54 on Erica's perspective as a disabled adult.Hear Alyssa's other episodes:179: Exhaustion, 171: Financial Strain, 140: Alyssa's Story,125: Travel w/ Disabled KidsRead more aboutthe Caregiver Continuum.Fill out our contact form to join upcoming discussion groups!Follow Alyssa and Erica at@caffeinated_caregivers!Follow us on Instagram@the_rare_life!Donate to the podcast orContact me about sponsoring an episode.Followthe Facebook page.Join the Facebook groupParents of Children with Rare Conditions.Access the transcript on the websitehere.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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 Life, I’m joined by our producer, Alyssa Nutile, to share responses from the community about all the things contributing to our collective exhaustion and why, some days, it does feel like too much for one person to carry. If you’ve ever wondered how you’ll keep going when you’re just so drained, you are not alone. This episode is for you. 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 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 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 diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found beauty in the hardest moments. If you’ve ever fought to get answers, struggled to balance hope with heartbreak, or felt like you were carrying the weight of it all, this episode will feel deeply familiar. 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! Listen to Jessica’s podcast: I Don’t Know How You Do It. Read Breath Taking: A Memoir of Family, Dreams, and Broken Genes by Jessica Fein. Fill out our contact form to join upcoming discussion groups! Follow Jessica on Instagram @feinjessica! 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!

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 2/14-2/28. This fundraiser allows your friends, extended family, and broader support system to show up for you in a tangible way by supporting The Rare Life. And we are not asking this community of parents to financially support us directly. All you have to do is share! (And we've got some exciting incentives for you to get the word out!) As always, we're closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can't wait to share them with you. This season is packed with tender, honest, and relatable conversations. We're so grateful to share these moments with you. Let's dive in! ⠀ Links: Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @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!  

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 you've been searching for a place where you can connect with other disability parents who just get it, this is your invitation. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare! 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!  

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 giving yourself grace. If the traditional “new year, new me” doesn't fit your life, this one's for you. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare! 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!  

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 first smiles and newfound independence, it's a powerful reminder that no matter how hard it gets, we're never alone. Tune in for a dose of solidarity, and let's close out 2024 together. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith-Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare! 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!

What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow. In this mini-episode, I'm joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who love us to get a glimpse into these often unseen parts of our lives. If you've ever felt like you're carrying the weight of it all, alone, this one's for you. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare! 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!  

Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we're juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don't get it. In this episode, I'm replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the mark and the joy of gifts that actually make your kid light up (think Elmo toys and shiny balloons). If the holidays bring up all the complicated feels, this one's for you. ⠀⠀⠀⠀⠀⠀ Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. 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!

So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship.   So to prepare for this episode, we asked you about those things you're most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we'd have probably never considered before this life of disability parenting. And in this episode, we're sharing them all, from the way moments with our disabled children feel so much more precious to just having the best parking. If you need a little feel-good episode to brighten your day, don't miss this one!⠀⠀⠀⠀⠀⠀⠀⠀⠀ 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!

Season 10 is coming to a close, and it's been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet! So to celebrate the end of this season, per tradition, we're sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 10. And we're sharing our most listened to episodes from this season as well. Finally, we're giving you a look into what Season 11 has in store, and the mini episodes that we're sharing in between seasons again. Thank you so much for being here and supporting The Rare Life for 10 seasons now! We would not be here without you ❤️ ⠀⠀⠀⠀⠀ Links: Join The Rare Life newsletter and never miss an update! Listen to The Rare Life Holiday episodes: Inpatient During the Holidays, Isolating at Home, & Why the Holidays Suck Sometimes. Get Jillian Arnold's children's book, Soaring Together. Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @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!

It's our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It's probably a lot more than you would think!) And for the sake of transparency, we're also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you've ever wanted to get a glimpse of how The Rare Life works behind the scenes, this episode is for you! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win a book bundle, sign up for Sticker Club! Today is the last day!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season! 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!

Watching our children go through pain in a medical setting, even when we know it's what is best for them, can be difficult for parents to navigate. We want to help, but sometimes it can be hard to know what is actually easing instead of compounding the trauma. Fortunately, there's a specialty that focuses on this exact problem: enter the Child Life specialists. They're here to help families provide as much comfort and as little trauma as possible for children in medical settings, including helping families advocate for comfort accommodations. In this episode, Katie Taylor of Child Life on Call is here to explain what exactly a child life specialist is, how they can assist families, and most importantly, the variety of ways that parents can help minimize the medical trauma that their children experience. If your child regularly interacts with the medical system, this is one episode you can't miss. Links: Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!) Visit the ABLEnow website to learn how to open an account for your child! Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!) Fill out our contact form to join upcoming discussion groups! Get the SupportSpot App,where you can find the comfort positions mentioned in this app (plus a ton of other resources!) Download the Six Comfort Positions guide. Listen to Katie's podcast Child Life on Call! Listen to Katie's previous episode: Ep 47 on Siblings Follow Katie on Instagram @childlifeoncall! 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!

Summary: On this special mini episode, we're hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The Rare Life has meant to her, how she helped plan this year's Sticker Club as part of our fundraising committee, and how she's helping us grow and reach new communities via a Spanish translation of the podcast! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, sign up for Sticker Club!⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season! 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!  

We all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way. Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages. And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm for both parents and their medically complex and disabled children. In this episode, I'm joined by Alyssa Nutile share thoughts from Erica Stearns, Hailey Adkisson, and Suzi Boubion, as well as our own commentary, on why you're allowed to share your story on your terms, the benefits of sharing, and the harm that comes with being silenced and isolated. We hope this empowering and nuanced episode will give you the confidence to share your experiences (if you so choose) and maybe make you think twice about the way you engage with your community on social media.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!) Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!) Fill out our contact form to join upcoming discussion groups! Listen to Ep 155 with Aneesa. Follow Alyssa & Erica on Instagram at @caffeinated_caregivers! Follow Hailey on Instagram @growing_juniper! Follow Suzi on Instagram @oliversodyssey1! Follow us on Instagram @the_rare_life! Erica's Episodes: 54: Disabled Adult Perspective Hailey's Episodes: 117: Traumaversaries

Sticker Club 2024 is live!! And to celebrate, we'll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins. In this episode, we're sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!) If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, don't miss this episode!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club to support the podcast for the coming season! 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!

It's the moment you've all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!) In this episode, we're telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for Sticker Club members sponsored by Amanda Griffith-Atkins. If you want to learn more about how to support The Rare Life AND get some awesome stickers as a thank you, don't miss this episode!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!) 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!

Nikole's delivery for her daughter Chloe was... less than ideal for quite a few reasons.  Nikole's health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.” This difficult experience reached a crescendo when Nikole was given the news of Chloe's rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.) But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter. This episode is equal parts relatable and uplifting. You can't miss it!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Nikole @martinfamilyshenanigans! 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!

It's no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that's often on top of career and work changes that have made our finances tighter to begin with. In this episode, I'm bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can't provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress. This episode touches on some deeply personal territory for many of us, but I think it'll leave us all feeling less shame and loneliness. Let's dive in! Links: Visit the ABLEnow website to learn how to open an account for your child! Visit SupportNow to start a registry and share with your community. Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @caffeinated_caregivers! Follow Amanda on Instagram @amanda.griffith.atkins! Follow us on Instagram @the_rare_life! Listen to previous episodes with Alyssa: Ep 170 on Hospitalizations Ep 140 on Alyssa's Story Ep 125 on Traveling with Disabled Children & on our recent season opener and finale episodes! Listen to previous episodes with Amanda: Ep 159 on Sharing the Mental Load Ep 156 on Getting a Divorce Ep 153 on Hurtful Things Loved Ones Say Ep 147 on Sex and Disability Parenting Ep 142 on If My Disabled Child Outlives Me Ep 135 on Career and Family Roles Ep 132 on Self-Care Ep 131 on Chronic Stress Ep 130 on Anticipatory Grief Ep 99 on Family Planning Ep 85 on Parental Identity Ep 81 on Health Anxiety & our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck. 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 few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn't even matter if it's a planned observation or an emergency situation, it's still so stressful. In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and sleep, the triggers that are all over the hospital, the difficulties that continue as we come home, and so much more. Plus, we cover those existential questions that come up during hospital stays... like if this might be the one we don't all come home from, and how those around us can help out during a hospital stay. If your child has ever had a hospital stay, this episode is going to be so relatable.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Get our packing list here! Listen to our episode about when your child is inpatient during events and holidays. Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @caffeinated_caregivers! Follow Larisa on Instagram @sarmabothma! 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 with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals. This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.⠀⠀⠀⠀⠀⠀⠀⠀⠀In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves abruptly living a life of pharmacies, hospital visits, and medical procedures, while navigating the harsh divide between those two worlds and reevaluating some of their long-held beliefs around medicine.⠀⠀⠀⠀⠀⠀⠀⠀⠀We also cover what finding community looks like for them now, how they are each working through their trust issues with the medical system, and how they've found strength as advocates for their children.⠀⠀⠀⠀⠀⠀⠀⠀⠀This is one episode you cannot miss! Links: Visit the Functional Formularies website to learn how you can get real food blends for your tube fed child! Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Suzi on Instagram @oliversodyssey1! Follow Julianna on Instagram @howlinghive! 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!

Stephanie's family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them. And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver. But even though the big plans for their family had to be adjusted, Stephanie doesn't spend her time grieving the “what ifs.” In this episode, she shares how she's accepted the reality that she's been given, how her family has navigated medical complexity, and how at the end of the day, she was able to embrace her ballroom dreams after all. This episode is equal parts raw, honest, and uplifting. Don't miss it!   Links: Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Stephanie on Instagram @truthandbeautyremain! 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 we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward. So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning? And in today's episode, I'm sitting down with Chandra Bloomfield to share those answers. We sift through all the wisdom, encouragement, and validation from seasoned parents as they share their heart with anyone coming after. And to be honest, there's lot of tidbits in here that are relevant for more experienced parents too. This episode is so tender and meaningful, and there is something here for everyone. Links: Set up an AbleNow account for your child today! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Episodes Mentioned: Ep 131: Chronic Stress Ep 132: When Self-Care Gives Us the Swears Ep 138: Therapy for us Ep 106: Nonspeaking Episode with Brianna Nonspeaking Episode with Suzi Ep 134: Child Loss 101 Ep 137: Life After Child Loss Ep 126: When to scale back on therapies Ep 22: "It's All My Fault” Ep 157: Friendships with people without disabled kids Ep 153: Hurtful Things Loved Ones Say Ep 150: Sibling Voices Ep 50: The Sibling Perspective Ep 118: Organization Ep 81: Health Anxiety Books/poems: The Life We Never Expected by Andrew and Rachel Wilson (faith-based) Special by Melanie Dimmitt Demystifying Disability by Emily Ladau Welcome to Holland by Emily Perl Kinglsey Visit Supportnow to set up your support registry! Manage your child's medical recordswith Hibi! Get a medical ID bracelet through MyID! Get our favorite organizational cart from Ikea. Follow Accessible Adventures on Instagram! Follow Chandra on Instagram @miraculouslycomplexmaddie! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode.

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities. In this episode of The Rare Life, we’re digging into how we long to know our nonspeaking kid’s inner thoughts, how their challenges to communicate affect their medical autonomy, and why, at the end of the day, so many of us would give anything for them to be able to tell us exactly what they do –and don’t– want. 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! Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Listen to Ep 124: Suzi’s Story. Follow Suzi on Instagram @oliversodyssey1! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework? Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We cover all kinds of topics, but at the end of the day, I think we mostly just want to remind therapists that our disabled and medically complex kids are children too, and whatever therapy activities they are expected to do should account for that. This episode was so cathartic to record with Alex, and I think every parent who has ever had a child in therapy is going be nodding their head the whole time. Also, huge thank you to our sponsor Permobil for their wide array of mobility devices and their support of this community! Links: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Visit the Permobil website to learn more about their mobility products! Listen to Ep 126 on when to scale back therapies. Listen to Ep 4 on how we are NOT our child’s therapist. Connect with Alex on Instagram @al.farha_! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella. In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman's diagnosis, the gut-wrenching news that her daughter had the same disease, and how the disease has impacted each child in unique ways. Jillian also shares the way her own mindset has changed, including the way she cherishes every moment she does get to spend with her children. 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: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Listen to Ep 157: Friendships with People Who Don't Have Disabled Children with Jillian Arnold. Listen to Madeline's episode on Confessions of a Rare Disease Mama. Follow Jillian on Instagram @confessionsofararediseasemama! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

It's time for Season 10! And once again, we're coming back to the topic of our children's disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that'll come out toward the end of the season. But, before we dive into our sneak peeks at the end of the episode, we've got some exciting updates for you! We're launching a newsletter that you should join so you never miss an episode, update, or Sticker Club news! (Yes, Sticker Club is coming back this fall!) We're also in search of one last board member for The Rare Life! Check out the application and fill it out if you think you'd be a good fit! Thank you so much for being here and supporting The Rare Life for 10 seasons! We are so excited for this upcoming set of episodes, and we can't wait to share them with you.   Links: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Follow Alyssa on Instagram @caffeinated_caregivers! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

It's only been a year since we've heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison's story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn't look the same anymore. In this mini-episode, Maddison shares how she's coped with the abrupt adjustment to single medical parenthood. She shares the parts that she's found to be most difficult, what she still grieves, and the surprising bright spots she's found despite the painful changes. 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! Listen to Ep 129: Maddison's Story. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son's condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we've navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled. In this episode, I'm sharing those decisions, how we made them, and how they'll impact our future. Plus, I'm sharing a positive and heart-warming update on how my children have grown their sibling relationship. This episode is so tender, and I'm so honored to share it with you. 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! Listen to Ep 22: It's All My Fault. Listen to Ep 40: Wendy + The Sibling Experience. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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 we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now? In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her daughters. Seeing how far Tiffany's family has come in two years is so heart-warming. 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! Listen to Ep 101: Tiffany's Story and Ep 102: Becoming a Single Medical Mama Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

You know that thing that you can't seem to live without, but also don't want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community. In this episode, we're sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet. 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! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn't happened yet. And now? Well, her entire world has changed in big and small ways. In this catch-up episode, Kari shares with us what it's been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in some of her darkest moments. She also shares how full her life is now, despite the despair she's waded through. This episode is so real and raw, and I'm so honored to share it with you. 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! Listen to Ep 10: The Story of Sloan and Ep 11: Embracing Your Medical Community with Kari. Listen to Ep 123: “Special Needs” with Kari Harbath and Hannah Setzer. Listen to Ep 151: Fostering Friendships with Other Disability Parents with Kari and Kate. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Each week, I share a new episode and guest, but I realized that it's been a long time since I've shared much of me, Madeline, with you. So today, I'm peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I'm sharing what motherhood looks like these days, traits that I do and don't love about myself, and lots of other lower stakes facts. I'm so grateful for this opportunity to be vulnerable with all of you, and I am so excited to share this episode. 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! Listen to Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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's plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini episode, we're sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN. 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! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

After learning to accept and manage her younger daughter's disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down. In this short catch up with Vanessa, she's sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on their family, and how they've all been trying to recover in the past year. 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! Listen to Ep 69: Vanessa's Story and Ep 70: Accessibility and Ableism. Follow Vanessa on Instagram @vanessamcleod_! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Birthdays, as we understand them societally, are a time for celebrating, but it's not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation to reminders of difficult hospital stays to a resurgence of anticipatory grief. In this episode, we're sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between. 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! Listen to our episode on being inpatient during the holidays. Listen to our episode on isolating during holiday events. Listen to our episode on navigating the holidays with medically complex kids. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

If you're thinking about traveling with your disabled or medically complex child this summer but you don't know what you'll need or how to plan, we've got your back! In this episode, we're sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren't feeling the summer travel vibes, we have some affirmations for you too. 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! Listen to Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

If you're thinking about traveling with your disabled or medically complex child this summer but you don't know what you'll need or how to plan, we've got your back! In this episode, we're sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren't feeling the summer travel vibes, we have some affirmations for you too. 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! Listen to Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!