“Are you back?” I asked my son, as I always do when he’s had a low blood sugar and then juice.
“No,” he answered.
I checked him again: 47. Just two digits above where he’d been 15 minutes earlier.
My son—an eight-year-old with Type 1 diabetes—had been sick with bronchitis for more than two weeks. My husband and I had struggled with managing his diabetes, particularly his relentless highs despite constant corrections through his insulin pump. Between his illness and the holidays—all the carby food that comes with celebrating far from home and our routine—it felt like we’d had a Christmas dominated by diabetes.
And now, a week later, back in our house, in my son’s bed, as I waited for him to “come back,” I felt like crying—something I rarely do in front of him, in front of anyone. But I’d almost missed this low. It was 9 p.m. I’d checked my son an hour earlier. At that time his blood sugar was slightly high, but relatively stable; I’d given him a correction and made a mental note to check him at 9:30. We had just changed his Dexcom sensor so it needed to calibrate; I knew I wouldn’t have that to rely on for another hour or so.
I was only there, holding my son, because just before he’d fallen asleep he’d called out, “I feel low!” It was unusual—and lucky—that he was still awake and aware at 9 at night. Once asleep, he never wakes up, regardless of highs or lows. I was terrified by what could have happened in that 30 minutes before I planned to check him.
We’re almost five years into life with this disease. I can change out my son’s insulin pump set in under a minute (he times me). I can carb count like a master. I’m a nighttime ninja when I go in at all hours to check his blood sugar—just one eye open, in the dark. I can stay relatively—relatively—pleasant when the insurance company wrongfully rejects a diabetes-related claim and puts me on hold for an hour. And at this point I’m the face of acceptance and calm when there’s a diabetes-related crisis. Or when there’s just diabetes. Which is all the time.
As I held my son and waited for him to “come back”—and yes, through the years I envision that during hypoglycemic episodes he does go someplace else, where his arms and legs are tied to bricks, where he seems to slip away from me—I realized that I’ve gone somewhere, too.
Lows aren’t that common for us. Extreme ones, anyway. But they happen, particularly with sickness or some anomaly—be it physical, emotional or food—in our routine. We always get through them. My son comes back. Later, I might have a quick cry in the closet or when I’m alone in the car. Or not. But in some ways these episodes remind me—never mind all the other maintenance stuff—that Type 1 diabetes is a serious condition with potentially scary outcomes.
Over the holidays, while we were at a family member’s house, my son had a low. I was more wound than usual, worrying, probably too vocally, over what was out of my control. Someone suggested that I “relax.” I knew it came from a place of compassion and love. And I know that unless you live with Type 1 diabetes or someone who has it, you might not get it.
But at the time, the “relax” comment left me devastated. Just an off-handed word, thrown around like the phrases “get over it” or “lighten up.” But as I thought about it, as I considered the consequences of stepping off the tightrope that is diabetes—rather, managing diabetes for someone I love—I accepted that I’ll probably never relax.
Back in my son’s bedroom, after he “came back”—when his blood sugar hovered around 100—I reassured him, squeezed him too tightly and tucked him in. And, in that moment, it was clear that I was the one who was never coming back.
Children change you. Bottomless love takes up a lot of space. But having a kid with a chronic condition adds another layer. In my life now there’s no sleeping through the night, or ignoring those Dexcom alarms, or forgetting to fill prescriptions, or dropping my son off at the pool or cross-country-ski center or play date without a second thought. Some of that will change as he grows up and takes over these responsibilities. Still…
I don’t remember anymore what I was like before this autoimmune disease disrupted our lives. Maybe I was easier, calmer, better, though none of that matters anymore. Right now what matters most is that my son always comes back.