People ask, not really ask, assume, by stating a question where the only socially acceptable answer is yes, "so, the diabetes, you have that handled now, right?" Jim and I generally shrug our shoulders and say, "sure." We do, philosophically, have a handle on it now. It is less front of mind. We go whole hours without actively thinking about it. An alarm in the middle of the night is a common occurrence and results in annoyance more than panic these days. Type 1 just generally occupies a smaller space in our minds than it did before, but it is still there, always running in the background. Her numbers certainly are not any better, in fact, they are probably worse. For the first year after diagnosis, we were really locked down, counting every carb, weighing every bite, saying no constantly about everything.
The first year, I basically stopped cooking. I love to cook, but the thought of it would send me into a panic. I would just assemble food that I knew reliably how to carb count. When we were out, someone would suggest a snack and my eyes would go wide with terror. Jim took over a lot of the food prep for the kids that first year; handling breakfasts most days and prepping lunches the night before. There were even some nights that he would come home after work and make dinner. I would just be paralyzed, afraid to feed her. That's better now. I cook. We experiment. Sometimes she spikes up. Sometimes she doesn't. We say yes more. We are, I think, doing a much better job of balancing her physical health with her emotional well being.
The other thing people ask is when she will start doing it herself. I usually work really hard to change the subject at this point because I don't teach Penny any self-care related to diabetes. First, the stakes are too high. Life and death shit does not belong on the plate of a six year old. Sometimes she will ask to test herself and she has given herself a shot from time to time, but she can't tell you what her insulin to carb ratio is (1:10) or about how many carbs are in an average sized apple (25g) or any of the other day to day things that make life livable for her. We do that. We do all of that, moving in the background with as little impact as possible, getting Type 1 out of her way so that she can do the important work of being a kid.
But mainly, it is my last and only shred of optimism at work. It is the only evidence of my hope that by the time we are not able to support her completely the landscape of how we treat Type 1 will have changed so dramatically that the skills we would be teaching her now would be obsolete, the equivalent of knowing how to play a record on a turntable, interesting and might come in handy in a pinch, but not something you need to exist day to day.
I don't breathlessly read scientific articles related to a cure anymore, but I am encouraged by the progress being made in tech and biomedical research. I am encouraged that there are many brilliant minds working to find feasible solutions to the day to day problems people living with type 1 face, that they have it handled and that someday, she will too.
P.S. Hi. It is nice to be back. Still not sure how today ends.