I feel like we’ve been kind of awesome lately. James is finally using (and loving) the continuous glucose monitoring system (CGMS). We’ve gotten a handle on breakfast cereal. He’s developing more of an interest in what his blood sugar is doing… I could go on! But of course, this is real life, so we have setbacks too.
It was one of those rare really bad days. James’ blood sugar was being utterly, dangerously unpredictable. There were some weird highs, which were concerning, but much more upsetting were the bizarre low numbers that seemed to come out of nowhere! I couldn’t figure it out and didn’t know what to anticipate. The only way forward for me was to keep a close eye on him and test frequently.
Except I was supposed to drop James off at his friend’s house that day. This friend has an awesome, huge, wild yard. The boys like to play with rocks and trees and sticks. It’s basically James’ heaven. Because we now have functioning CGMS technology, I feel that if I have James just check in a few times he should probably be safe — on a normal day.
As it was, not only did we have an epically unpredictable morning, but right after breakfast, James brought me his CGMS sensor IN HIS HAND. In other words, not attached to his body. It had somehow managed to come free and was clearly no longer functional. Left with no time to fix it, I had to call the friend and cancel James’ fun play date. James was, of course, devastated.
I basically told him, matter-of-factly, that he couldn’t go to his friend’s home because I was concerned about his blood sugar dropping. While there is nothing wrong in what I said, James took it really hard. In fact, I’ve rarely seen such disappointment from him. I tried to make a peace offering by allowing him extra computer time. He wasn’t interested, and that’s how I knew he was truly sad. He said to me, “Mom, I can’t play with my friend because I have diabetes.”
It made me feel heartsick to hear those words. So I started thinking about what I could have said differently, what I could have done better. It’s difficult, because I want to be honest and forthright with him. And this is a good example of a case in which, despite planning and preparing, diabetes does sometimes impede the way that we want to live our lives. If there is a way that I can prevent him from feeling disappointment, from feeling like he’s missing out “because of diabetes,” then darn it, I will do those things. But sometimes I just can’t fix it.
What I wish I had added to the discussion is the balancing piece of wisdom. James DOES have diabetes. Sometimes that will cause him to miss out on things he likes to do. Not often, but sometimes, and this disappointment was a good example of that. On the other hand, what I missed, what I needed to let him know, is that we’ve ALL struggled with SOMETHING that’s prevented us from having every little thing we want. Whether it’s a chronic illness or an aspect of our personality that we’re trying to overcome or a life situation entirely outside of our control, we may not all have diabetes, but we’ve all been there. We’ve all felt sad because we wish we could change SOMETHING about our situation.
What I wish I’d said was this: “James, I’m SO sorry you can’t go on that play date. I know how much you want to go, but I need you to stay home just for today to make sure that you’re safe. You might feel like you’re being punished for your diabetes, but it isn’t like that. This isn’t a punishment, it’s life. And sometimes it is HARD, and I know because I’ve been really disappointed before too. We all feel that way sometimes, and it’s okay to be sad. Let’s sit down and plan another day when you can go to your friend’s house. I’m sure you’ll spend LOTS of happy time there. What a lucky kid you really are!”
I’ll try that next time, hoping of course that next time doesn’t come for a long while.
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.