186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes

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!