Now that spring seems finally to be here, my thoughts have turned to summer. Summer camp, that is.
This is difficult time of year for us. My daughter, Noelle, was diagnosed with type 1 diabetes when she was 4 1/2, about the time parents start thinking about organized summer activities for their children. The first summer, before she entered kindergarten, wasn’t too bad. We allowed her to go to half-day camps at her nearby preschool for a couple weeks and not much else, and that worked out okay.
Last summer, the summer between kindergarten and first grade, was much more difficult. She kept hearing of all the cool camps out there for kids, plus I had begun working for the Girl Scouts, and camp is a big thing for the Girl Scouts. Luckily we were able to enroll her in two half-day camps at her karate studio and a half-day camp at her dance studio, she participated in a children’s theater production for one week and the creme de la creme: one week of full-day Girl Scout camp that she was allowed to attend because I was allowed to work there for the week. Between that and season passes to Six Flags, she kept pretty busy…
Why is this so hard, you might be wondering. Like everything else with diabetes, camp presents huge challenges. While many camps have nurses on staff, some do not. Summer camps are more likely to have looser schedules than school. And many camps rely on teenage and college-aged supervision.
Without a nurse, how is Noelle going to make sure her blood sugar is regulated, her pump site remains intact through swimming and sweating and whatnot? She’s only 7; she still needs adult assistance on all of that. With a looser schedule, how is she going to make sure that she eats when she needs to, that she has access to sugar if she needs it? With young adult supervision, how are they going to recognize the signs of a diabetes-related problem? That’s a lot of pressure to put on a young adult.
So we’ve resigned ourselves, for now, to allow Noelle only to go to part-day camps that do not involve lunch, that are close by and that are supervised by adults. (And, of course, we equip her with a cell phone, which I wrote about in this column last summer to many comments from readers!)
This does not make Noelle happy.
We rejected the pottery camp Noelle want to go to, because it is a 45-minute drive away and includes lunch and swimming – at a facility with no nurse, no less. And we had to reject Girl Scout camp, even though she loved it last summer and many of her friends are going this year, making it even harder on her. But after a lot of soul-searching, conversations with family and the camp director, my husband and decided that because this year I can’t work from camp like last year, Noelle will not be able to go. It broke my heart to tell her of the decision, and it broke my heart again to hear her tell the camp director herself last week that “I can’t go because of my diabetes.” I hate hearing her say that, but the truth of the matter is, I can’t send her away for nine hours a day to a facility an hour’s drive away where, as caring as the staff may be, they are just not equipped to handle the gravity of her medical situation. That kind of experience is going to have to wait until Noelle is older and can take care of her diabetes more independently.
It truly does stink. But I handle her care 24 hours a day, seven days a week, and even I miss the signs sometimes. Last week Noelle had a very bad sugar low that I did not recognize. I even thought she was just being difficult because I had just told her it was time to leave her grandmother’s house. She wasn’t “just being difficult”; her blood glucose was 44. (Normal blood glucose, as I may have mentioned before, is between 80 and 100; anything much lower than 40 can cause seizures and blackouts – and death.)
How can I place that burden on someone else, especially young adults or even older adults who are essentially strangers who are in charge of a large group of children? Someday I am going to have to place that burden on Noelle herself. That’s frightening enough.
But as with other times, Noelle’s spirit continues to amaze me. After telling the camp director that she can’t go to Girl Scout camp this summer, she immediately jumped into the activity she was doing, with a big smile on her face, even as I stood wanting to cry.
I have no doubt we will find fun things for her to do this summer, and we will focus on what she can do, not what she can’t do. We will get by.
ABOUT THE AUTHOR
Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.