The Rare Life

At face value, our kid’s equipment is just stuff. It helps our kids move, eat, hear, breathe, communicate, and more. But when that “stuff” feels like it’s taking over our lives (and homes), complicated feelings can come up.
In this episode, Madeline and Alyssa talk about the emotional, logistical, and financial reality of living with medical and mobility equipment. From the grief that can show up when a new piece of equipment arrives, to the frustration of a system that makes you fight so hard to get something your child may not even like, there's so much more to this topic than it seems on the surface.
We get into the design problems that make managing equipment harder, the disagreements that come up when one partner is ready to try everything and the other isn't, the comments from other people that land all wrong, and what it actually looks like to embrace your child’s equipment in whatever way you can.
Whatever your relationship with your child's equipment right now, this episode has something for you.
And a huge thank you to our sponsor, MOOG Medical for making some parts of managing our children’s equipment a little easier with their 24/7 helpline and for making this episode possible!
Links:
Visit MOOG’s website to see themany ways they support families like ours!
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Listen to Ep 125: Traveling with Medically ComplexKids.
Listen to Ep 153: Hurtful Things Loved Ones Say.
Listen to Ep 214: Relocating for Our MedicallyComplex Kids.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contactme about sponsoring an episode.

Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding started to unravel.

In this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility that his daughter might not live long and might require a completely different kind of parenting than he had imagined. He shares how that uncertainty led him to emotionally distance himself early on, the role grief and fear played in that response, and how his connection to his daughter has grown and changed over time.

This conversation also touches on learning to be present, understanding your role and strengths as a parent, and how isolating this life can feel, even as you look for connection with others who get it.

This is one you can’t miss.
Links:
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Listen to Ep 146: The Dad Perspective.
Listen to Ep 151: Finding Other Disability ParentFriends.
Listen to Ep 197: Difficulty with Making DisabilityParent Friends.
Follow Robin on Instagram @thedadadays!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contactme about sponsoring an episode

As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question.
But if you’ve ever wanted permission to just not answer invasive questions from strangers, this episode is here to validate you. I’m talking with James Catchpole, author and publisher, about his experience as a disabled adult and how he deflects or simply (but politely) refuses to answers questions from strangers about his disability.
He also shares about his experience as a disabled child and how his parents were able to set a helpful example for how on how to navigate questions about his disability as he grew older. Whether your child will eventually be able to advocate for themselves or if you as the parent will be their advocate indefinitely, this episode will give you lots to think about when it comes to dealing with uncomfortable and invasive questions about your child’s disability or medical status.
2026 Update: We’re resharing this always relevant episode that was originally published in 2023 with our updated thoughts at the end. We hope you enjoy!

Links:
Listening to Ep 100 on Raising Awareness.
Get a copy of James’ book “What Happened to You?”
Read a collection of parenting essays written bydisabled parents (including a chapter by James and his wife Lucy.)
See more of James’ work and writing on hiswebsite!
Follow James on Instagram!
Follow us on Instagram @the_rare_life!
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Donate to the podcast or Contactme about sponsoring an episode

For most of us who have spent years inside the medical system with a complex child, the experience of being mom in an exam room can feel very different from the experience of being dad.
Sometimes that means being dismissed while your husband gets taken seriously. Sometimes it means the opposite — dad gets treated like wallpaper while mom is assumed to be the only one who knows anything. Either way, those dynamics have a way of wearing on a family over time.
In this episode, Kyrie joins The Rare Life to talk about the gap between how mothers and fathers can be received by medical providers, and what it costs families when those assumptions go unchecked. We get into the emotional toll of having to manage how you come across just to be believed, the medical trauma that quietly changes how we show up over the years, and the way this can play out differently depending on your family — including the families where it's dad who feels dismissed and overlooked.
If you've ever felt like you had to work harder than your partner just to be heard, or wondered why the same concern lands so differently depending on who's saying it, this one will resonate.
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!
Follow Kyrie on Instagram @kyrieherman!
Donate to the podcast or Contact me about sponsoring an episode.

For many disability parents, medically complex life begins in the NICU. In those early days, everything feels heightened: the machines, the uncertainty, the helplessness of watching doctors care for your tiny baby while you stand nearby unable to help.
In this episode, Alyssa and Madeline unpack the NICU experience through stories from the Rare Life community, covering the shock of having your baby taken away after birth, the grief over early parenting moments you miss, and the emotional toll of leaving the hospital without your child.
We also explore why the NICU can feel so uniquely overwhelming: when the future is unclear, it becomes incredibly hard to imagine that anything good could be waiting on the other side.
And a big thank you to one of our long-time sponsors MOOG Medical.

And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!
Links:
Visit MOOG’s website to see the many ways they support families like ours!
Listen to Ep 161: Having a Non-disabled child after their disabled child.
Listen to Ep 140: Alyssa’s Story.
Listen to Ep 26: The NICU Experience with Madeline.
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.