I can’t write about what it’s like to have diabetes, but I can imagine it. More correctly, I can’t not imagine it. Usually at 3 a.m. when I climb up the stairs, turn on the light, shake him a little. “I have to check your blood sugar.” A hand, sleepily offered, often at a position awkward for the lancet device. Lately, I’m having trouble squeezing enough blood out. All the scar tissue, I think. So I pinch his finger harder than I’d like, grateful that at least he’s a teenager now, with teenager hands instead of little boy ones. If I don’t get enough blood the first time, I’ll have to start over and neither of us have the patience for that.
And then the number pops up high and I feel around for his pump, press the button to deliver the correcting dose of insulin and that’s when the despair flits through me. We’re so dependent on this technology, on the availability of insulin, of test strips, of needles and sets. I’m helpless. I think of how he might feel, having this device plugged into his body. I want him to be matter-of-fact about it, accepting and grateful that medicine has advanced so far, able to focus on all he can do — which is almost everything — and not weighed down by the burden. In the daylight hours, I hold on to the optimism. In the late night/early morning, sometimes it slips away from me.
I return to bed with the same thoughts I’ve had for the past five years.
I’m not doing enough. I should be more focused on knowing everything there is to know about Type 1 diabetes. I should be one of those moms who becomes a warrior for a cure. Maybe we’ve erred by trying to keep life as normal as possible, to treat the diabetes as just another important part of our whole big lives instead of the defining factor. What if all the mental weirdness of being a teenager overrules logical action? When does the mental weirdness of being a teenager not overrule logical action? How can we take care of him without taking too much care of him? Is there “too much” care of one’s child? Who will check his blood sugar at 3 a.m. when he’s off in the world?
And then I can’t breathe and I can’t think of anything else and I wonder that I can ever think of anything else and am sure the fact that I get through the days thinking of other things is a character flaw of the worst kind — and this is not about me. I’m not the one with diabetes. I just love someone who has it.