Friday Kaelan came back from the hospital. He spent a three-day week-end at home, then, on Tuesday morning, went back to school.
The weekend was extraordinarily busy. There were many choices to be made, about the gear he needed to bring to school, but also about how he would live the school experience. We had made the strategic choice to have him live a life uncompromised by diabetes. Now we had to make the pragmatic, daily choices that made it a reality. Some of them were hard for us to make, because they resulted in what felt, at the time, to be a lack of control and a higher risk for him. But we made all of the decisions with Kaelan: we wanted him to be a part of every diabetes management decision from the beginning.
First, we discussed what he would tell his friends, and his classmates, and how he would behave in public. We jointly decided that he would always be 100% open about T1D. He would tell his friends at school. He would tell his classmates. He would openly treat in public, injections and all. We discussed the possibility that some people might be offended by his injecting in public: we concluded that he should be polite but firm, and that he should never compromise on his care. In particular, we had read about people feeling the need to go inject insulin in the bathroom of a restaurant. We discussed the issue of public embarrassment, and Kaelan felt comfortable holding his own. When push came to shove, this little 11-year-old proved true to task, and never worried.
We discussed where and when he would test and inject for lunch or corrections when he got back to school. We agreed that it would be best for him to do it wherever he was, on his own, but that, for the first few weeks, because he was new to self-treatment and injections, he should do it himself under the school nurse’s supervision when possible.
We discussed lunch: homemade lunch or school cafeteria? Kaelan felt strongly about hot lunches. He needed, to start with, meals with a constant number of carbs. We were unable to obtain the information from the cafeteria menus, and we were very uncertain of our ability to count carbs. So we convinced Kaelan to postpone hot meals for a couple of weeks until we were able to get carb information.
Finally, we discussed transportation: family car or bus? Kaelan had almost always taken the bus. I would have preferred to drive him back and forth, at least the first few weeks, to lower the amount of time when he was not under our supervision. This was, of course, a test of our resolve to have a life uncompromised by diabetes: the right decision was the bus, and, in the end, that is the one we took.
I had spent a good part of the weekend researching glucose gear for him online. By Monday night he had the gear he needed to go back to school. Early Tuesday morning, right at opening time, we went and talked to the school nurse, to let her know that Kaelan was the school’s newest T1D. We had to fill out some paperwork. An hour late, Kaelan went back to class, and we went home. He looked comfortable, but we certainly weren’t.
The school was absolutely terrific about dealing with Kaelan as a T1D. We had read, online, over the weekend, how difficult it was in many parts of the country to get a school to agree to a basic standard. We were going to a large 6-class-per-year village school, in the village of Merton, WI, and everyone at school did everything they could to make us comfortable, and to make it possible for Kalean to be as safe as possible: all his teachers were trained on how to deal with Kaelan belong low or high, 3 staff members were trained in administering glucagon, and the school made sure to have a trained staff going to every school trip so that Kaelan could go to (we often volunteered on these trips to save the school some time and worry).
We lived only a few minutes away from the school, so I was ready to jump into my car on a moment’s notice: I had to a few times. The first few weeks after diagnosis, Kaelan only tested at lunch and when he felt wrong. I was, of course, not sure if he would know how to recognize when he felt wrong—-but he did a fine job at it when he went low, which was about once per week, and there was only one time when a teacher asked him to go test because he seemed off.
The primary cause of lows was the hot lunch that we had gone back to a bit too quickly. At first, we made Kaelan a cold sandwich for lunch. Every day before lunch, he would go to the nurse, test for glucose, then inject himself under her general supervision, then grab his cold lunch and meet his friends in the cafeteria. He certainly did not like the routine, since it made him late for lunch every time, and also made him “special:” everybody else ate the regular lunch at the cafeteria. Why couldn’t he? We made an arrangement with the cafeteria that they would publish menus in advance so that we could calculate carbs ahead of time. It never quite worked, and he ran low a few times at school in the afternoon. We went back to cold lunches until the end of the school year, with the expectations that, the next year, we would figure out a way to deal with hot lunches—-and we did!
Once, feeling low, Kaelan walked back from his class to the nurse’s office on his own. We had agreed with the school that he would always be accompanied when he had a health issue (in case he lost consciousness on the way). I realized then that, even with the best plans and the best intentions on the school’s side, there would always be issues and moments of danger. The nurse was present in the mornings only, so the afternoons, after lunch, were when I would sometimes get pangs of worry. I was always relieved when I heard him run back home from the bus stop, crying joyously: “Papa, I am home!”
The last few weeks of the school year were stressful: I was uncertain about his safety at school, and about how competent we were in treating diabetes in general. I was relieved when the year ended: now I felt that we could think things through, and be more assured about Kaelan’s safety while he was with us over summer.
Growing up T1D 