My Six Year Old Didn’t Sign Up for Type 1 Diabetes

In July my kids and I stood along our town’s village green and cheered on the triathletes competing in the Ironman race that happens each summer in the Adirondacks in northern New York. All around us were folks doing the same thing, waving signs, yelling, “Go for it!” or “Looking good!” Most athletes, about to take on a grueling climb through the mountains during the bike leg of the race, gave a grateful thumbs-up, said thanks or nodded their heads in appreciation.

Between cheers I turned around to check on my six-year-old son. He was sitting in the shade of a lilac bush, dog-earing the sign he’d made, the word GO written with a backward “G,” punctuated with several exclamation points. He’s usually hopping around, walking circles, pacing—perpetually moving. He looked exhausted, but that made sense. He has type 1 diabetes and the day before he’d been incredibly sick with ketosis—what can happen when the body doesn’t get enough insulin, so it breaks down stored fat for energy, resulting in ketones in the bloodstream. Ketones are dangerous because they change the pH of the body.

My husband and I work hard to manage our son’s condition so he feels good, learns the ropes and has a long, healthy, happy life. But also so diabetes isn’t the focus of his world—there’s plenty more for a first-grader to think about. Still, that weekend a nasty cold, a clog in his insulin pump, and other factors led to a series of high blood sugars and, consequently, vomiting and dehydration. We were shades away from hospitalization.

Type 1 diabetes often feels like a never-ending marathon of balancing blood sugars and emotion, exercise, nutrition, you name it. As a caregiver to a child who’s just beginning to understand his symptoms and how to manage his needs, it’s bottomless worry, sleepless nights, nonstop carb counting, insulin ratio tweaking and injections, doctor appointments, ordering of medications and devices and other apparatus. Though we’ve been doing this for a couple of years (my son was diagnosed at the age of four), some days the responsibilities—on top of life’s ordinary demands—seem daunting. But this is all just part of our life, like doing laundry or walking the dog.

Back at the Ironman race, as I watched and worried over my sweet little boy (who had insisted on getting out and seeing the race), I heard someone yell, “You got this!” at one of the bikers whooshing by. For a selfish second I wished there had been someone shouting that in my house the day before as my son struggled his way up his own mountain. Would those words have empowered him when he was so sick? Or empowered me when I was frantic, on the phone with our endocrinology team while soothing my four-year-old daughter, catching my son’s vomit, checking blood sugars and ketones and feeling helpless?

Ironman competitors get support that’s fabulously ostentatious: brightly-colored signs with silly, often personal messages staked mile after mile along roadsides—even slogans spray-painted right on the pavement or shaving-creamed on SUVs. You’ll see congratulatory banners strung across hotels, restaurants, fences. Or Facebook posts from the athletes themselves—most of whom don’t do this professionally—showing them in their spandex, with details of their workouts, plus mass shout-outs to those who made this feat possible, who offered support and accepted the sacrifice.

It is a remarkable thing to sign up and then train for something like Ironman. Imagine taking on a one-day race that includes a 2.4-mile swim, 112-mile bike ride and a 26.2-mile run through rugged terrain, at the mercy of precarious weather. It makes sense why encouragement is essential, that it’s a big part of the journey.

I can’t help think about those of us who don’t sign up for this sort of thing, but also face a test of will, both physically and mentally, every single day.

My son is a hopeful, indefatigable little boy. He doesn’t remember what life was like before diabetes. What he knows is that he’s capable of anything—his plan someday, he says, is to be both a professional soccer player and a scientist who’ll cure diabetes. But he also knows the routine of needles; what it’s like to have to wait to eat so his food can be carb counted; that each day can be a roller coaster of feeling great one minute and not being able to get up off the floor the next.

What would my son—or my husband and I—do if, during those harder moments, a stranger stood by, pumping a fist, whistling and waving a neon sign with an encouraging slogan in loopty-loop letters? But there’s some unspoken code that hard health stuff should be dealt with differently: it’s private, right? You’ll often hear the words “grace” and “dignity.” Since my son was diagnosed with diabetes I’ve found that outsiders are most impressed if you carry on like everything’s fine, when it seems you have everything under control. There’s supposed to be pride in that.

Regardless, my kids and I will be back at the village green for next year’s Ironman, and probably every one after that, cheering on the athletes who pass by.

But to all those who didn’t sign up, who quietly push themselves every day: I’m clapping, smiling hopefully, shouting—with all due respect—“You got this!”