When I tell my story, juvenile dermatomyositis is a pretty big part of it.
But my medical story actually started long before JDM.
I was born on April 18, 1990, weighing just 4 pounds, 12 ounces. I wasn’t supposed to arrive until June.
Apparently, I decided waiting was overrated. 😂
My beginning wasn’t the one my family expected. Instead of simply bringing home a new baby, there were hospitals, doctors, machines, fear, and a life flight to get me the care I needed.
One of my earliest photographs is this tiny version of me lying in a hospital bed with my hand wrapped around my dad’s finger.
I obviously don’t remember that moment.
But my parents do.
There’s something different about looking at these pictures as an adult. I know what came afterward. I know about the little girl I became and all the medical words that eventually became part of our family’s vocabulary.
But nobody looking at that tiny baby could have known any of that yet.
They couldn’t have known that years later my mom would begin noticing changes in my cheeks and a rash.
They couldn’t have known there would eventually be muscle weakness, tests, biopsies, wheelchairs, medications, IVIG, surgeries, and a diagnosis called juvenile dermatomyositis.
They certainly couldn’t have known that the little girl in these pictures would grow up and write books about some of it. ❤️
Sometimes I look at old photographs and wish I could reach backward through time.
I’d tell my parents that there would be hard days ahead—but there would also be so much life beyond the hospital rooms.
And I think I’d tell that tiny baby something, too.
You’re going to grow up with a story you never asked for.
There will be moments when your body doesn’t cooperate with any of the plans you have for it.
You’re going to learn some really big words way too young.
You’re going to spend more time in hospitals and doctors’ offices than you ever wanted.
But you’re also going to ride horses.
You’re going to swim.
You’re going to speak in front of people.
You’re going to advocate for yourself and eventually for other people.
You’re going to find people who become family.
You’re going to have one very large, very opinionated service dog beside you. 😂
And one day, you’re going to take all those pieces—the beautiful ones, the painful ones, the ridiculous ones, and the ones you still don’t completely understand—and start writing them down.
Because it turns out this wasn’t just the beginning of a medical history.
It was the beginning of a story.
And little girl, you’re going to have one heck of a story to tell someday. ❤️
Next time: the childhood pictures that looked ordinary then—but years later helped tell the beginning of my JDM story.
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