we’ll never be friends

Some days, diabetes and I are indifferent roommates. We have our routine: Wake up, check sugar, enter into Dex, eat breakfast, dose for breakfast, watch dex all day while the small one is at school, call the school if necessary to administer doses, do afternoon stuff while constantly watching dex and treating as necessary, snack for bed consisting of some kind of protein or fat, bedtime with a blood sugar check and calibration if necessary. Night time is a little less routine in that, while, I consistently wake up every 2 hours to check dex, I also don’t have to treat unless necessary. Sometimes that includes stopping insulin for a little bit or shoving a sugar pill down my kids throat, or giving insulin as necessary.

That’s a good day.

Sometimes, he’s so high that I remember every story I’ve heard about DKA – like the four year old who recently died after having a cold, because his sugars were normal his parents didn’t think to check ketones and then before they knew it, he was gone. Or the local high school girl who’d been a diabetic for years and went into DKA for no reason other than diabetes is an asshole and died. So I’m constantly giving insulin, but being afraid to give too much because what if it’s too much and he goes to low?  And then there are the days that he is too low, and I’m having to balance between giving carbs, stopping insulin, but keeping enough insulin on board that he doesn’t go into DKA. It’s unpredictable and ugly.

And then somedays are just overwhelmed by sadness. I will drive home and just cry because… well why? My kids aren’t going to have chronic illnesses that could kill them when they are still babies. Not my kid. I think about when I suspected and still in the back of my mind, I knew that there was no way my sweet boy would have something wrong with him that was so life altering and terrifying. I think about what he has to go through, when I have to change a pod or a dex site and he just cries because it hurts. I think about how sometimes he just doesn’t want to get his fingers poked. The amount of sadness I feel for him is almost breathtaking. It’s not fair that this sweet little kid (or any of them, for that matter) has to deal with this. It’s not fair that for his foreseeable future it will be daily checks, painful site insertions, and days of up and down sugars that make him feel angry, drained, and sick. It’s not fair that his teachers give him less than his classmates, that he hast to worry about getting out of the pool every hour so I can make sure he’s not dropping, that we have to bring a bag full of stuff everywhere we go (one that he will someday have to carry himself).

But he does it all so perfectly. He is a warrior. A super hero. He doesn’t miss a beat when it’s time to check his sugar he stick out his little finger or an arm or a leg. When it’s time to change dex he’s scared and he cries, but he sits still while I do what I have to do. Pod changes are painful, but he’ll pick out a pod he wants and we hug after while he cries.

I know there are breakthroughs. I know there are some major ones happening now that could change his life as he gets older. I know that there is no telling what great stuff will be available for him as he gets older.

But that’s when he’s older. For now, I get to wonder if he’ll get to get older. For now, I will grieve. For now I will shed tears for him because I would take this disease on for myself in a heartbeat if someone gave me that option so that he didn’t have it. For now, I can be sad.

Some days are better than others, and the world isn’t ending. But while some days I might be indifferent with diabetes and go through the daily routine, diabetes and I will never be friends.