The Rare Life

For a lot of disability parents, the behavioral side of our child’s diagnosis often gets judged the fastest and is understood the least. It’s also another part that can make us feel like we’re failing, because it’s so hard to “control.”
In this episode, Alyssa talks with Annie and Katie about behavioral disability and nervous system dysregulation in rare disease parenting. We cover what it looks like when behaviors don’t fade with age, how it changes when kids get older and stronger, and what it’s like to live in constant hypervigilance especially when there are siblings in the mix.
We also dig into isolation, exclusion (even in disability spaces), and why access to services can depend on having the “right” labels beyond a rare disease diagnosis. If you’ve ever felt like this part of your child’s disability is the hardest to explain and the heaviest to carry, this episode is for you.
And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.
Links:

Share our FUEL The Rare Life fundraiser!
Listen to Ep 148: Katie’s Story.
Listen to Ep 197: Difficulty with Disability ParentFriendships.
Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.
Listen to Ep 151: Fostering Friendships with OtherDisability Parents.
Follow Annie on Instagram @dranniekuo!
Follow Katie on Instagram @averyrareadventure!
Follow us on Instagram @the_rare_life!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Donate to the podcast or Contact me about sponsoring an episode.

For families of medically complex kids, where you live can determine what services your child gets, whether you can be paid to care for them, how long you sit on a waitlist, and whether the world around you is even built for a kid like yours.
In this episode, Madeline and Alyssa dig into one of the most loaded and personal questions in this life: have you ever considered moving for better support for your child?
We cover why so many of us feel that pull, what can make some places better or worse for our specific kids, and the brutal catch-22 of needing more financial support but not being able to afford to move somewhere that offers it. We also get into the Medicaid waiver maze, the politics and safety fears driving families out of certain areas, and the complicated grief on both sides — whether you want to move and can't, or moved and left everything you'd built behind.
There's no single right answer, and no one place to point you toward. But if you've ever looked around and wondered whether somewhere else could be better, this episode is for you.
And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.

Links:
Share our FUEL The Rare Life fundraiser!
Learn about Medicaid and waiver programs in your state at Kid’s Waivers.
Listen to Ep 171: Financial Strain.
Listen to Ep 135: Career Impact.
Listen to Ep 139: In-Home Nursing.
Follow us on Instagram @the_rare_life!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Donate to the podcast or Contact me about sponsoring an episode.

Many of us start our disability parent journey early in our child’s life, with signs that something is medically awry sometimes as early as birth or in utero. But that’s not the story for Deonna. Instead, a seemingly minor injury for her four year old daughter Allie led to a medical event that changed the course of their lives in an instant.
In this episode, Deonna shares what happened after her daughter suffered a stroke, from the months in the hospital, the acclimation to life at home with a medically complex child and in-home nursing, and the long road to reclaim her mental and emotional health in the aftermath.
From all the ways her community changed to the impact on siblings of disabled children, Deonna covers so much ground in this episode. If you’ve ever felt like your life has been turned upside down and you’re worried that you’ll never feel grounded again, this episode will offer you a warm embrace and so much hope.
And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.
Links:
Share our FUEL The Rare Life fundraiser!
Listen to Ep 211: Trachs & Vents.
Listen to the Raising Disabled podcast.
Follow Deonna on Instagram @deonnawadeart!
Follow Raising Disabled on Instagram @raisingdisabledpodcast!
Follow us on Instagram @the_rare_life!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Donate to the podcast or Contact me about sponsoring an episode.

Surgery of some kind or another is a near universal experience for medically complex kids.
(And yes, procedures that involve anesthesia or something similar count too!) And these experiences don’t just affect our children, but our entire families.

In this episode of The Rare Life, Alyssa and Madeline dig into all of the big feelings that come up before, during and after our kid’s surgeries, the heart-rending questions we ask ourselves when deciding which surgeries are necessary, and advice from the community for getting through these tough moments.
Whether you’re planning for an upcoming surgery for your child or you’ve been through one in the past and feel like you’re still processing, there’s something for you in this episode.

And our FUEL The Rare Life fundraiser is live! Help us fund the podcast for another year by sharing our fundraiser with your loved ones and community so we can keep supporting you! Learn more here.

Links:
Share our FUEL The Rare Life fundraiser!
Listen to Ep 170: Hospitalizations.
Listen to Ep 180: Does It Get Easier?
Listen to Ep 140: A Mistaken Brain Surgery (Alyssa’s Story).
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.

What does it mean to bring home a child whose breathing depends on a piece of medical equipment? For many families, the idea of a trach is terrifying long before it ever becomes reality. And even after, the fear doesn’t magically disappear.
In this episode of The Rare Life, Alyssa is joined by Ashley Caywood to talk honestly about life with a trach and ventilator. We hear from parents who knew this decision was coming and from others who were blindsided by it, from families who hoped it would be temporary and those who’ve had to come to terms with permanence. We talk about hypervigilance, sleep deprivation, the impossible responsibility of keeping your child breathing at home, and the strange duality of fear and gratitude that so many trach parents carry at the same time.
If you’re facing trach conversations now, living with one already, or trying to understand what this life actually looks like beyond the hospital walls, this episode offers realism, validation, and the reminder that you’re not alone in holding all of this.
Thank you to the generous sponsors for today’s episode, Imagine Pediatrics.⁠
And don’t forget to join us on Feb 1st to kick off our FUEL The Rare Life fundraiser!
Links:
Learn more about Imagine Pediatrics.
Listen to Ep 139: In-Home Nursing.
Listen to Ep 90: Living with Sleep Deprivation.
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donateto the podcast or Contactme about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
And if you love this podcast, please leave usa rating or review in your favorite podcast app