The Never-Relaxed Parent of A Child With Diabetes

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“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. 

Author image
Annie Stoltie

Annie Stoltie is a mom to two children—one of whom was diagnosed with type 1 diabetes at age 4—editor of Adirondack Life magazine and a contributing writer to publications that include Slate.com, the New York Times, Newsweek, Modern Farmer and Good Housekeeping Magazines. She’s the author of the guidebook The Adirondacks (W.W. Norton, 2012) and is currently the Writer-in-Residence at the State University of New York at Potsdam. She lives in Jay, New York.

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19 Comments on "The Never-Relaxed Parent of A Child With Diabetes"

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Susan

Thank you for this Annie. When I read the title I thought, boy is that the truth! My 45 yo son was diagnosed at age 4, and then I was diagnosed 13 years later, so we empathize with each other. It does get a little easier for the parent in some ways when the child becomes an adult, but I can honestly say that the worrying never goes away. Thankfully with our pumps and Dexcom’s we are both a great deal safer now, and I look forward to new innovations, including the artificial pancreas.

Laurie Schleeter

Thank you for sharing your story! I can totally relate on all accounts. My daughter was diagnosed at 3 1/2, now just a couple weeks away from the 9 year anniversary of this stupid, horrible day. I hate this disease, she hates this, disease, and we need it to leave! In the meantime we will continue to fight the monster and live our lives as normal as possible ? Sincerely, Sleepless in Minnesota. Laurie and Maggie Schleeter

Pamela Heyward
Great article. As a mother of two daughters with T1D, I rarely felt compassion from other parents not living with the disease. This intensified feelings of loneliness, lack of understanding and support as to what everyone living with Diabetes goes thru 24/7/365. I remember one time my daughter had a life threatening seizure, as she had many times. The whole family in a crisis and sheer panic trying to save her life, yet again. I will never forget the adrenaline it took and afterwards I just felt numb, weak and sad. I felt sad because I was helpless to prevent… Read more »
Jeanne

My son was diagnosed at 5 years and is now 22. It is all very familiar… and yes, I still worry if he’s managing well, buy him glucose tablets “just in case” and think about what the future holds for him in terms of his health. It’s a testimony to perseverance for the parents and most definitely so for our kids.

Terri
Oh this one got me, I am right there with you. Thank you for writing this, you put into words exactly what I have been feeling for the past 10+ years since my youngest son was dxd at the age of 3. My life is not my own, but his life is forever a battleground of high bs and now the teen stuff where his fast growth and raging hormones are constantly messing with his levels. I do appreciate the dexcom when it is working properly, it has saved him more than a few times from the rare extreme overnight… Read more »
Linda Hecht

I can’t imagine how you mothers of young children with diabetes get though each day and night. My adult daughter has diabetes and I worry about her all the time. She has a pump but it has malfunctioned causing problems. I pray for all of you who handle these delicate issues!

Sue

I have a good friend who was unusually diagnosed with T1D at age 32. One day I asked her to educate me about her condition. I was shocked and alarmed, realizing that for a T1D every single day you are in a fight to live. I apologized to my friend for being an ignorant prat. Cannot possibly imagine having to care for a child with the condition.

Casey stovall

My child is 20 and lives at home still I am still this parent and always will be

mike

“in that moment, it was clear that I was the one who was never coming back.” so true. I have a 10 yr old son with T1 and celiac. I love him so much, but it is so hard every day to just keep him healthy.

Kerry Myshrall

Teared up reading this. My daughter is 10, diagnosed three years ago, pumping for one year and I can honestly say I got lost three years ago on January 14th and I haven’t found my way back yet. Its so comforting reading these stories as it is a reminder that some other mom or dad out there is lost too, and hopefully some day we can find our way back but for now as long as my daughter always comes back that’s all that matters.

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