Sunday, June 08, 2014

I am going to complain

I'm not going to say that this is a new or different thing, but that I do generally try not to wholesale whine about life with Nathaniel's diabetes, because it feels disrespectful and dehumanizing to him, and like I'm complaining about him, which this time I'm not. Not that I refrain from complaining about my weird, smart, funny, completely berserk eldest child, but that complaining about diabetes is a separate thing.

I'm hoping to complain in an educational and illuminating way. That's my excuse. So, we give Nat insulin, which we inject with insulin pens. We used to use syringes, but we've switched.

There's a picture, with, glory be, the two types of insulin we use! Neat.

Insulin is a hormone, and it's the stuff that takes glucose (the stuff all your cells run on, necessary to life, and if anyone ever tells me that NO ONE should eat SUGAR because sugar is TOXIC I usually want to strangle them) out of your blood, and takes it in to your cells. Without it you die, pretty slowly, of starvation at the cellular level. Okay.

So we give Nat insulin, and we try to give him exactly the right amount to take exactly the right amount of sugar from blood to cells. That is simple in theory, right? We have this formula, which we tweak a lot- okay, today we're going to try one unit of insulin for every seventeen grams of carbohydrate, because yesterday he was running high blood sugar when we were giving him one unit for every twenty grams...

First, trying to calculate how many grams of carb there are in a bowl of ramen with FOUR CHILDREN ALL ARGUING plus trying to divide 43g per serving but Nat's is probably only one third of a serving plus how much is he actually going to frigging EAT? That can be like dying. I am not that good at complicated math on the fly.

So, I've given him an injection for twenty-four grams, roughly, and at the end of lunch I squint into his bowl and determine that he was rearranging his noodles into fractal patterns instead of eating, but he might have eaten a little. How much did he actually eat? Shall we guess? Was it eight grams? Six? What are we going to compensate with so so the insulin doesn't pull too much sugar from his blood and send him low, and into passing-out-goofy-possible-coma territory? Juice? Pretzels? Oh, maybe it'll be okay, because I can hear him climbing the wall in the pantry to get to the Goldfish crackers.. Don't know how many he's actually eaten.

It's usually at this point that I give up on the complex calculations bit and just try to feed him until he's not hungry, and resolve to just give him more insulin if I think he's eaten a whole lot.

And then I feel angry and resentful because I cooked lunch, but he didn't eat, but he told me he would eat, and now he has  to have whatever snack he likes because annoyed though I am I don't want him to pass out, and have to call an ambulance and get an EMT to force feed him sugar paste. It would be scary and also a hassle. But I hate the food wars, the worry about exact amounts, and the feeling of losing the battle about food if we give him more insulin than will cover what he put in his mouth.

I guess I've been feeling rebellious about it for a while, and so has Nat. We're fighting less about it than we used to, but I still feel like it's formed a huge amount of the underlying structure of our relationship- me doing uncomfortable or painful things to him and watching his eating and arguing with him, him understandably fighting back or resisting or protesting it's not fair. It isn't fair, and it would be good to have a break, but we just need to have a few weeks of lots of watermelon whenever he doesn't eat the proscribed meal, and me being concious of, and letting go of, my real and rational sadness that this is part of our lives and is permanent and necessary.


Melanie Bettinelli said...

Wow. I sort of knew but reading the details is illuminating for sure.

Food wars with kids are so hard anyway. It makes me want to scream and I'm not dealing with any of that. I think it's totally reasonable to get pissed off about all the excess baggage of diabetes-driven conflict. And it must be so frustrating to have him see you as the enemy instead of realizing you are on his side. It will get easier as he becomes more rational and is able to partner with you to make decisions, right?

lissla lissar said...

That's the hope. :) We have gradually increased his areas of responsibility, and we intend to have him doing his own injections with supervision pretty soon. It's a very good idea to start him doing the weighing and measuring, and to start quantifying for him- one slice of bread means thirty grams of carb, two cups of strawberries are fifteen.

What really weighs on me is wondering how much of our general level of conflict is the result of four years of us having to do painful things to him and scrutinize everything he puts in his mouth. He's a naturally VERY strong-willed kid, and I worry that the whole diabetes thing is storing up years and years of inchoate resentment and rebellion.

There are days when the girls' need for very high-calorie food plus Nat's medical stuff makes me want to feed them entirely on chips, or from McDonald's, or something.