Forest

There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing.

NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it.

It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston.

Most parents, myself included, fall into this trap when we first bring our medically complex kids home: We want what’s best for them, and that usually feels every type of therapy we can get (OT, PT, Speech, and more!) And if some therapy is good, then more is great, right?!

For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation.

Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care...

Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)?

Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period.

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.

If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant.