Raising a Medically Complex Child While Traveling Full-Time: The Chaos, the Courage, the Magic
If you had told me a few years ago that one day we’d be living full-time in a 44-foot fifth wheel, traveling the country with three kids—one of whom has two rare lung diseases—I probably would’ve laughed and then cried a little.
But here we are. And we’re almost two years into it.
It’s chaotic. It’s courageous. And honestly? It’s kind of magical.
Jentri, my oldest, was diagnosed with Primary Ciliary Dyskinesia and Atypical Cystic Fibrosis after a long, exhausting road of questions and hospital visits. She’s what doctors call a “medical unicorn.” What that means for us is that we don’t just travel with a suitcase and snacks—we travel with nebulizers, her monarch CPT vest, medications, pulse oximeters, and back-up everything… always. Our rig is our home, it’s got two bathrooms, the girls have their own beds, we have a full kitchen but everything is just smaller. We love that no matter where we go our home is with us.
However, our days aren’t always pretty. Some mornings start with breathing treatments, frustrations from us all and end with tears because we had to cancel plans for the third time in a week. And in between all of that? I’m homeschooling, juggling my own school assignments, trying to be a good mom and wife and trying to soak in the moments that truly matter.
But here’s the thing no one tells you when you live this kind of life—there’s a freedom in it too. A whole lot of freedom that we love!
We’ve watched the sunrise over the ocean in Florida after a night full of coughs and zero sleep. We’ve hiked nature trails in New Mexico where the air felt easier to breathe. We’ve spent a full winter in Connecticut that was freezing but beautiful! The girls have been to 4 different countries, and they have learned to ski, snorkel and ice skate. And we’ve built a rhythm that works for us, not just what’s expected.
There’s guilt sometimes—don’t get me wrong. Guilt for missing therapies or not doing things the “traditional” way. Guilt for chasing adventure when some days it feels like we’re barely getting by. Guilt that my kids may not have as many friends as they should have or that they aren’t as social. Guilt that we took them away from their family in Texas but we make that work with frequent trips home to visit plus we have to be back every 3 months for Jentri’s appointments. Sometimes the guilt gets to us. We think about selling it all and moving back home, we think about buying here in Florida and settling down. But truthfully we love this little unconventional lifestyle and I’m not sure what we will do as we live one day at a time usually.
Let me say this, there’s also pride. So much pride.
In my kids, who are learning flexibility, resilience, freedom, seeing the different parts of the country, doing so many different things daily and how to advocate for themselves.
In myself, for not giving up even on the days I really, really wanted to.
In my husband for guiding us along the way, never giving up and making sure we always have what we need! (He’s truly a saint!)
And in this life we’re building—imperfect, but ours.
I will share one thought that I don’t know that I have ever shared with anyone before but, I also want to travel and show the girls as much as possible especially Jentri because truthfully we don’t know what life entails with both of these diseases combined. So while she’s healthy for the most part, and we can do these adventures I’m always prepared to jump right into it, whatever crazy idea my husband has or wherever his next assignment takes us. We go because why not?!?
So if you’re another mama out there doing hard things in an unconventional way, just know: I see you. And even in the chaos, you’re doing something pretty incredible.
With love,
Kursti Young, Founder of Breath in Bloom Collective
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