The Rare Life

For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life.
Every time something seems off and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?
In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the background of every illness, to the reality of navigating ER teams who don’t know your child, to the emotional whiplash of being hyper-focused in the moment and unraveling later.
We talk about how these decisions evolve over time, what experience teaches you (and what it doesn’t), and why “better safe than sorry” doesn’t even begin to capture the full picture.
And a big thank you to Functional Formularies, our sponsor for this episode.
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Listen to Ep. 185: Medical Parent Trauma!
Listen to Ep 170: Hospitalizations!
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Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be facing a progressive, terminal disease that no one, including their doctors, knew much about.
In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the only option, and what it’s been like to live with that choice as the disease continued to progress.
We also talk about what advocacy actually looks like long-term: fighting the same systems over and over again, pushing back when care is taken away, and the strange mix of exhaustion and purpose that comes with it.
This is one episode you won’t want to miss!
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Listen to Ep 180: Does It Get Easier?
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From an early age, most of us are taught that being “smart” matters. It’s tied to the way society measures and views success, independence, and worth.
So what happens when you're raising a child with an intellectual disability in that world?
In this episode, Alyssa, Amanda, and Madeline get honest about all of it: the grief that's hard to express, the fear that you won't be able to connect with your child, and the ways people with intellectual disabilities get left out, even within disability spaces.
Plus, they dig into the nuance behind "presume competence," the disability hierarchy often felt in the backdrop of these conversations, and what radical acceptance actually looks like in lives like ours.
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Listen to Ep 19: Katie's Story!
Listen to Ep 166: Nonspeaking Child!
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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!
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Visit MOOG’s website to see themany ways they support families like ours!
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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.
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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.
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Listen to Ep 146: The Dad Perspective.
Listen to Ep 151: Finding Other Disability ParentFriends.
Listen to Ep 197: Difficulty with Making DisabilityParent Friends.
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