I haven’t been writing a lot lately. It’s hard when, for the first time in a long time, I’m not sure we’re doing this right.  Benny’s last three A1C’s have been rotten and I feel like we’re the most out of control since diagnosis. I feel guilty and sad. I don’t want to feel like that anymore. I certainly don’t want Benny to feel that way. So what’s up?

Besides the numbers, the last six months have been pretty great. This summer, Benny went back to his week-long diabetes camp. A week later, he joined his sister at a “regular” overnight camp. She goes for a month, his age goes for two weeks.  We set his target BG a little higher, to be safe, and he did run a bit higher overall while he was there. I’m so proud of him for accomplishing a major milestone for a kid with diabetes. He did every BG check, every cartridge and inset change and was away from home for two weeks. I was worried, but he had a blast.

We also traveled more than usual. I’m not working full-time for the first time in 20 years  and we took advantage of it! We made some terrific family memories, but we were also completely out of our routine (and sometimes time zones).   Benny’s A1C in August was his highest ever. We thought, ok, back to our routine, back to good numbers. It seemed that way at first; school started, we got back into a groove and his A1C went down  at our November checkup. The number, though, was still way too high.

The Grand Canyon, part of our summer travels

Feeling on top of the world at the Grand Canyon

What else is going on? As kids tend to do, Benny keeps growing.  We’ve always been pretty liberal in our attitude toward food and diabetes and I’m wondering if that’s finally caught up with us.  We don’t eat a lot of junk, but Benny is a big kid and he is a hungry kid. We’re trying to be careful about snacking and bedtime eating. But this is a kid who eats a great dinner (including lots of veggies, etc) and an hour later is hungry enough to ask for a sandwich and a glass of milk. Oy.

Our endocrinologist is terrific and very supportive. He’s optimistic that we just need to stay on top of checking and be more aggressive adjusting basal rates and carb ratios.  Benny even said he’s ready  for a CGM and I’ve started that process.  I know it’s not an instant solution, but it can only help.

I’m trying to keep in mind that I can’t teach my son to feel okay about diabetes if he feels bad or guilty about the numbers. They’re just numbers. They are tools. They are directions. But lately I feel like they’re written in red, judging us and finding me coming up short. I need to get past that.

I try to be a positive model for diabetes parents and for people who are just learning about type 1.  That doesn’t mean pretending it’s all sunshine and unicorns, right? I’m not sure if I really will publish this blog, but boy, it feels good to write it. We’ll get through this.