I left the hospital immediately after James’ type 1 diabetes diagnosis with a large stack of literature and a couple of very important phone numbers. The literature contained the instructions for how to care for my boy. The phone numbers were lifelines connecting me immediately to busy doctors who would graciously take my call no matter the hour. We did our best to follow every instruction given and to seek advice when we weren’t clear. But there were many moments in the early days where we just didn’t have enough training yet to know what to do.
One such day came very early on after James’ diagnosis. We followed a pretty strict set of guidelines for testing times. What we didn’t know then, though we know well now, is that James’ blood sugar drops precipitously during physical exercise. On this particular day, we had the opportunity to spend many hours at a local park. It was a lovely day, surrounded by friends and perfect weather. We ate dinner at the park and came home to put James to bed.
Carefully following my hospital instructions, we tested him two hours after his last meal — that dinner consumed at the park. And his blood sugar could scarcely be read, it was so low. James was lying there in bed completely asleep, with a blood sugar that my literature told me was in the range that could cause all kinds of negative and scary effects. I discovered that night that James could wake up and drink a juice box without opening his eyes (he still does this), and that was a blessing. I sat at the edge of his bed, counting the seconds to allow the juice time to bring his blood sugar back up. When I tested him again he was most definitely on the rise and out of immediate danger. It should have been a great relief, but instead it marked the beginning of a whole host of new worries about what his blood sugar was doing while he was sleeping.
I confess, I started sleeping next to him. I felt like if I could be close to him that I might be able to sense if he dropped again. I would wake up and stare at his face, trying to decide if it was worth pricking his finger or if I should let him sleep.
I now know why his sugar might drop lower on some days than others (well, I mostly know), but everything was so new back then that I really couldn’t figure it out at the time. I just knew that while I sat blissfully unaware in my living room, James’ blood sugar could be doing scary things and I’d never know.
Thankfully, this phase passed, and it really did get better. I started to get my own rhythms for knowing when to check James. He has responded very well to juice boxes. We’ve actually never had a severe hypoglycemia incident! My confidence was regained during the intervening days and months, and then years.
Then the continuous glucose monitor (CGM) happened, and it’s become a blessing for everyone I know that uses it. But in all honesty, I get a little teary-eyed thinking about how much of a benefit it would have been to us in the very early days of diagnosis, when James was still so little and I just wondered every second what was happening with his blood sugar. I don’t feel upset that I didn’t have it, I’m just grateful, so very grateful, to have it today. I love that I can be sleeping in another room and I can wake up to know what his blood sugar is doing. He can be at a school dance, or a sporting event, at a friend’s home, at school, or taking the PSAT (!), and I can know what his blood sugar is. I can’t begin to describe my gratitude to the hardworking scientists and engineers creating these technologies for my child.
Diabetes care has gotten so much better. I know the future holds so many more improvements, and I personally can’t wait!
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.