The boy’s blood sugar continues to run high, again. We’ve been through this a few times now: the numbers are good, then start to creep up, then stay high. We adjust, based on our most educated guesses and advice from the doctor; the new program works for a while.

We upped his Lantus, per the doctor’s orders, from 14 to 16 units last night, woke up at 2 p.m. to make sure the new amount hadn’t sent him low. (I sleep slightly panicked every night, afraid he’ll drop unexpectedly, fall into a coma or have a seizure without us knowing. Somewhat paranoid, I admit, but I’ve heard enough stories to have braced myself for such an occurrence.)

But again, he’s high, high, high. 395. 395! Bobby fixed a correction, yet another shot. Nick’s arms are pincushions, so little fat to begin with, now sporting tiny bruises from all the needles poked into the same square inches of flesh. We try to vary location, but on a skinny kid, real estate is limited.

At 4:45 a.m., I stepped back up the stairs, knelt down to where he slept on the floor. Why the floor instead of his bed? No idea, but there he was. I lifted his hand to poke a finger, another glucose check. Two of his fingers, still smaller than mine despite the recent growth spurt, already bore dried spots of blood from this long night. I always feel vampiric, despite knowing the bloodletting is for a good cause. One beep acknowledges the blood collected, and while I wait for two, I think, “Please, please, please.”

126. Respite.

But his average is over 200, an unprecedented development that scares him. The fear comes out as anger, frustration in his otherwise accepting attitude. The memory of being so sick, the worry of the damage his body is sustaining along with the elevated glucose – these undermine his efforts to live like any other kid, to not let his disease preempt the myraid activities of his friends. We already can’t keep up financially with the snowboarding and surfing vacations that raise everyone else’s skill level; he accepts that. But when the playing field is level in all other ways, the diabetes interfering – despite his very best efforts – triggers a sense of hopelessness that kills me. Times like this, all I want is too not have to work so much, to be able to spend more time reading, studying, planning, recording, figuring all this out. Life is not like that, I know. If wishes were horses, yes. I am grateful for all we have, etc., etc. But sometimes the desire to be able to help my kid more than I can – I already can’t fix this problem – ah, it’s just so hard to see him suffer and only have “We’ll figure it out! Everything will be okay” to offer.