The Rare Life

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).
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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

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!