The Rare Life

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

Living a medically complex life means making constant decisions under a microscope. About treatments. About schools. About rest. About what’s “enough.” And no matter what you choose, it often feels like someone is ready to tell you that you chose wrong.
In this episode, Madeline and Alyssa talk about judgment: where it comes from, how it shows up, and why it cuts so deeply for parents of disabled and medically complex kids. From medical teams and family members to disability spaces and even other caregivers, judgment has a way of creeping into places we hoped would feel safe.
This conversation also explores what it takes to rebuild trust in yourself after years of being second-guessed, and how many parents eventually reach a place of saying, “I am the expert here,” even when that comes with loss, boundary-setting, or strained relationships.
If you’ve ever felt like no choice is the “right” one, or like you’re parenting under a microscope, this episode will resonate.

When Kenya’s daughter was six, her body began changing in ways that felt impossible to ignore, even as doctors insisted it was normal. What followed was a long stretch of doubt, dismissal, and self-questioning, until Kenya finally found a specialist who confirmed what she had known all along: her daughter was experiencing precocious puberty.
In this episode, Kenya shares what it was like to fight for answers, navigate bias in pediatric care, and hold space for a child whose body and emotions were changing before she was ready. She also talks about the shock of facing the same diagnosis again with her second daughter, and how experience can simultaneously make you feel more prepared while still reopening old grief.
If you’ve ever had to trust your instincts and fight for a diagnosis your child needed, this conversation will hit close to home.
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.
And if you love this podcast, please leave usa rating or review in your favorite podcast app

Season 13 is here, and this time the focus is on our children’s disabilities themselves.
This season, we’ll be talking about things like navigating surgeries and procedures, trachs and vents, behavioral diagnoses, schooling options, sexual health and safety, feeling judgment, and more. As always, there will be story episodes woven throughout the season, featuring parents sharing their experiences in their own words.
We’re also sharing a few updates in this episode, including how hosting will look this season, details about our February Friends & Family Fundraiser during Rare Disease Month, and discussion groups, including the launch of our first international group.
Finally, we’re wrapping up this season opener with clips from the first few episodes. Don't miss it!
Links:
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donateto the podcast or Contactme about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave usa rating or review in your favorite podcast app!

Season 12 is coming to a close, and it’s been a season of big shifts. With Alyssa stepping in to host every episode and Madeline handling more behind-the-scenes projects, the podcast sounded a little different, but still hit all the same emotional notes. We also covered some especially heavy community topics, from family planning to marriage to familial rejection, which shaped the tone of the season in a really meaningful way.
In this finale episode, we’re sharing a quick look behind the scenes of what Season 12 was actually like for us, plus a full recap of the season through all the intro clips. We’re also playing three listener takeaways, where Cary, Meghan, and Michelle share the episodes that resonated with them most this season.
And finally, we’re giving you a little peek at Season 13 on the topic of our children’s disabilities, including long-requested topics like the NICU experience and how moms and dads are taken seriously (or not) in medical settings.
Thank you for listening, supporting Sticker Club, and being part of this community. We can’t wait to be back with you in January.
Links:
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!