195: An Invisible Disability, Living in Survival Mode + Giving Up Her Dream Career | Ali’s Story

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!

What happens when your child’s rare disease doesn’t look “serious enough” to the outside world? For Ali Platt, the invisibility of her daughter’s Eosinophilic Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.In this episode, Ali shares it all: how caregiving collided with her career in law enforcement, the isolation she’s felt without a local support network, the constant state of survival mode, the grief of not being able to stop her daughter’s pain, and what it’s like to advocate for your child when their disabilities aren’t as visible to the general public.If you’ve ever felt unseen, doubted, or forced to do the impossible just to keep your child safe, this episode will hit home.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!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.

Therapists come and go, but that doesn’t make it easy. When a beloved therapist leaves, it can feel like losing a member of the family. And when it’s a bad fit, it can be arelief, but it’s still exhausting to start over.In this mini episode, Alyssa reads your experiences ofloving and losing great therapists, finding the courage to end relationships that weren’t the right fit, and navigating the messy emotions in between.If you’ve ever dreaded the change or welcomed it with open arms, you’re not alone in thisrollercoaster.Links:Join The Rare Life newsletter and never miss an update!Listen to Ep. 165: What We Want Our Child’s Therapiststo Know, But Don’t Tell Them w/ Alex Farha.Listen to Ep. 126: Therapies | When to Scale Back andHow to Do So w/ Andrea Loveday-Brown and Larkin O’Leary.Listen to Ep. 9: 3 Ways to Take Charge of Your Therapyand Medical Team.Fill out our contact form to joinupcoming 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. 

Talking about disability with kids can feel like walking a tightrope. What do you say? How much do you explain?  And when do you just… not?In this episode, Alyssa and I share how we each approach these conversations with our own kids, from siblings and cousins to the curious child at the park. We talk about usingneutral language, why we skip the sugarcoating, and the importance of following your kid’s lead.We also explore why it’s okay to keep things simple and ouch on how to talk to our disabled kids in ways that empower them as they grow.Whether you're raising a disabled child, a sibling, or a curious kid with questions, this episode offers real-life examples and encouragement for these tender, tricky conversations.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @alyssanewt!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. 

When strangers call our kids “so inspiring,” it’s often meant as a compliment. But it doesn’t always feel like one.In this episode, Madeline and Alyssa dive into the uncomfortable question: Do our children exist to teach or inspire others? They unpack why that idea feels off, evenwhen the intention is good.In this episode, Madeline and Alyssa unpack the tension between learning from your child and making them a life lesson. They break down the roots of “inspiration porn,” whysome praise feels more about the speaker than the child, and how it can reduce complex lives to feel-good stories.They also talk about what true respect looks like, and why your child doesn’t need to teach or inspire anyone to be worthy of love and support.If you’ve ever flinched at a compliment or struggled to explain why some praise feels wrong, this one’s for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @alyssanewt!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. 

When your child’s health stabilizes, it should feel like a win. But about when it just feels...complicated?In this episode, Jessica Loey joins Madeline to talk about the messy reality of “after.” They explore what it’s like to go from survival mode to something that looks more stable, and how this can bring up guilt, grief, and a strange sense of disconnection from your past and your community.If you’ve ever wondered where you belong now that your child is more medically stable, this one’s for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Jessica at @loeyjessica!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.

When the federal government slashes Medicaid funding, states are left to decide what happens next... and families like ours are left bracing for the fallout.In this mini episode, Madeline and Alyssa talk about what these federal cuts really mean for families of disabled and medically complex children. They break down the impacton Medicaid HCBS waivers, what states can (and might) do next, and why the math just doesn’t add up for our kids.They also get real about the mental health toll of uncertainty, the pain of being ignored, and what it means to build community resilience when the systems built tosupport you start to crumble.If you’re feeling confused, furious, or just deeply tired, this conversation is for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming 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. 

When you’re deep in the world of disability parenting, it’s easy to feel like every day is the same. The meds. The appointments. The routine that doesn’t seem to change much, even as the years go by.In this episode, Marci returns to share what life looks like now, two and a half years after her conversation about grieving her daughter Freya’s intellectual disability. Sheopens up about the slow pace of progress, the grief that still sneaks up on her, and how, while parts of Freya’s disabilities are difficult, her family cherishes and celebrates Freya’s joy in the day to day.We also talk about the messy emotions of school decisions, the heartbreak of communication barriers, and why disability has pulled Marci into the world of politics—whether she likes it or not.If you’ve ever felt caught between acceptance and grief, you’ll feel right at home in this one.Links:Listen to Ep 114: Grieving Our Children’s IntellectualDisabilities + Facing Our Internalized Ableism with Marci Dunning.Follow Marci on Instagram @ freyasluckyarm!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. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.

What does it mean when a dream brings you to tears before breakfast?In this mini episode, Alyssa and I dive into grief dreams: those vivid, emotional dreams where our children speak, run, play, or show up in ways they can’t in waking life. Sometimes they comfort us. Sometimes they wreck us for the day.We share stories from the community about the longing, guilt, tenderness, and pain these dreams bring up, and how they reveal just how deep our grief can go. If you’ve ever woken up from a grief dream that colors your whole day, this episode is for you!Links:Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!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.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.