We are 3.5 years in on our journey with type 1 diabetes. And I can always tell when someone comes to our page and knows nothing about diabetes. Their first comment is something to the effect of “why is her diabetes out of control?”. “When do you expect it to get better, to be under control?”
Those words and that phrase irritate me more than just about anything else I hear, and I hear a lot. When you are out and about with dogs in tow, you tend to draw attention and questions. And with the addition of the DAD’s, the perception of “seriousness” of the disease is ramped up.
The numbers on the picture at the beginning of this story are from our nightly log book. We write down all of the overnight numbers so that when my wife or I are woken up from a dead sleep, we are able to know if the other person has done something already, so that we don’t give more insulin to treat a high or another juice to treat a low if that was already done 15 minutes before. It is a life saving tool for us. But it also gives you a glimpse into a fairly typical overnight for a family with a diabetic child.
On this particular night, our daughter started off the evening running low. Not an ideal night time situation at all. As a matter of fact, it is much more preferable to have her blood sugar a little high than anywhere under 100 at bedtime.
This is where semantics is involved. You see, diabetes is a bastard. Diabetes refuses to be “controlled”. Diabetes fights and kicks and screams and attacks both when you least expect it, and exactly when you expect it. You can’t lasso it, or sleeper hold it into submission. And right when you might think you have it under control, it rears it’s ugly head and bites down hard.
So we never use the word “control”. We use the word “manage”. We manage diabetes and our daughter’s health the best we can. We walk around in a shirt and tie, carrying a clipboard, a calculator, and a cup of coffee micro-managing the diabetics day down to the last minute. We run 24 hour shifts here at the type 1 plant, and there are no weekends off, no holidays, no vacations. Why the government isn’t pursuing us for health and human rights violations is beyond me.
Managed. It’s the best we can hope for. And some days it is managed better than others. And sometimes we manage it well for an hour or 2, and then all hell breaks loose, and riots break out.
There are so many things that can affect blood sugars that it is impossible to control. Weather, food, stress, hormones, emotions, blue socks, little brothers, exercise, walking past the Cinnabun Kiosk, illness, math tests, favorite jeans in the dirty clothes hamper, the list is tremendously long.
So, my wife and I strap on our fireman gear, putting out small fires in the hopes of preventing large ones. We clear away brush, giving our diabetic 10-20 feet of brush clearance to prevent big huge out of control forest fires, but every once in awhile, a tiny little hot ember gets picked up in the wind and lands, igniting, and erupts into a 4 alarm emergency.
So please know, we diabetic families are doing everything we possibly can, based on the knowledge and experience we have, the tools we have, the medicines we have, to take the best possible care of ourselves and our children. But we are playing against a cheater. We are playing against an athlete that has been taking performance enhancers for years. It is faster, more agile, has a longer reach, and can hit a slider better than anyone on our team. But just like in real life, we keep suiting up everyday. Because all though on paper diabetes looks like it should win, we always love the Cinderella team. I will always bet on Davey over Goliath. And just like a good coach, we “manage” our team, playing to our strengths, and trying to minimize our weaknesses. But we would never want to “control” our team.
And just as if we were referring to your parents, the word “control” is harsh on the diabetic ears. We aren’t controlling. We are managing. Yep. Managing the best we can.