Last night I participated in a focus group discussion for parents of children with diabetes. I met three other moms of diabetic kids there. One had 3 kids, two of whom, both girls (14 and 10 yrs. old), had diabetes. She had been dealing with the disease for almost 10 years. Another mom had a preteen son that was diagnosed 2 years ago, and she started a nonprofit organization to raise money for the ADA. The third mom’s son was just diagnosed a couple of months ago; however, her son is not taking insulin at this point. He is on a very strict diet. That didn’t sound like type 1 to me, but the term pre-diabetic was tossed around, so it could be that he will be starting on insulin soon.
We were all from different areas around town, had different backgrounds, and had differing stories of our intro to diabetes. And you know what? We could have talked all night. Diabetes is an instant ice breaker. I’ve always been the type of person who, when going into a room full of people I didn’t know, would not be very comfortable. But put me in a room with other moms of diabetics, and it’s hard to shut me up.
We all signed a form saying that we wouldn’t discuss what we talked about in the focus group. I did tell Daniel this morning, however, that afterwards the moms talked about how hard it can be to get their teenage kids to focus in on their diabetes care. Daniel surprised me by saying that his celiac bugs him more than the diabetes. He wishes he could just eat the things that he likes. But the diabetes is just, well, there. He manages it. It doesn’t really affect him. (This after he had the nasty grumpies because he was low this morning).
I said, “It doesn’t affect you? What about the high & low swings & your mood? What about the fact that there’s no cure for this disease (yet). What about dealing with the long term effects of diabetes?”
Daniel says that he’s doing everything he has to do to keep his blood sugar under control, which will allow him to stay healthy.
Diabetes is really more annoying than anything else.
So I’m feeling a little crazy mixed up inside today.
On the one hand, I want Daniel to be deadly serious about diabetes.
Yes, he is doing everything he remembers to do so he can maintain good blood sugar levels, but honestly, if I didn’t remind him to test two hours after meals, or regularly on weekends, he would forget.
He would miss his highs, which he doesn’t feel, and eventually they would affect him.
I want him to consider D to be more than just an annoyance.
Yet I want Daniel to just be a kid. Not to be defined by diabetes. Not to have this constant timer & carb counter clicking in his head.
In the meantime, I guess he will be a little bit serious and a little bit annoyed. He is mostly in charge of his care, but I do all the meal planning & medicine ordering. I talk to the insurance company and discuss Daniel’s future with the endocrinologist. At some point Daniel will take over more and more from me, and as an adult will be fully in charge of his care.
Adult shoulders are built to carry more cares than teen shoulders. For now and the next however many years I will help Daniel as best I can with reminders, meals, carb counting, etc. etc. etc. When his shoulders are large enough and his spirit is willing, I’ll transfer what needs to be transferred. But not everything. Moms have the right to carry cares for their children no matter how old they get.
