Maybe I was experiencing caregiver burnout and didn’t recognize it as such. I kept doing everything I was supposed to do: count carbs, give insulin, check for ketones. Since the election, I’ve been calling and writing my representatives in an effort to persuade lawmakers that people with pre-existing conditions need assured access to health care. I called while waiting at urgent care. I called before breakfast. I started to believe it didn’t matter how many times I called, but I called.
I tried to make peace with the fact that many of the people I love support the current administration that is creating policy that hurts my son.
I did what the insulin pump told me, and sometimes his blood sugars wouldn’t go below 200. I rage bolused.
I raised money for diabetes research. I tried to prioritize moments where he could be a kid instead of a kid with diabetes.
There were trips to the E.R. for minor diabetes related things, battles with insurance, problems with pump supplies, stubborn blood sugars, anxiety at site changes, surprise bills that arrived six months after date of service—all the “normal” things related to living with diabetes.
But there was also Friends for Life, an amazing conference in Orlando that focuses on type 1 diabetes. All the food is carb-counted, and it’s the only week of the year where diabetes feels “normal.”
While at the conference, we heard Dr. Ponder’s Sugar Surfing talk, and when we applied his principles, Henry was in range for 99% of the day. It was the best blood sugar day we’d had in the past 90 days.
Yesterday, while the Senate voted to continue the process of repealing or repealing and replacing healthcare, we had our Endo day. If you don’t speak diabetes, Endo day is when you meet with your endocrinologist, and in addition to the usual conversations of insulin to carb ratios, insulin sensitivity factor (more math than I had in Algebra I), there is a test, the A1C test, which is used as a general measure for how well you’re managing your diabetes.
It’s probably against the DOC (diabetes online community) to admit that I’m sometimes excited for this test, because I’ve always liked tests. I find them an interesting metric. So when I’ve been slaying carb-counting, micro-dosing insulin, not sleeping through the night, and setting a timer for a real pre-bolus, I’m excited for the A1C.
Not this time. The Dexcom alarm would predictably go off over 220, and my husband and I would look at each other, willing the other to act first, to slog upstairs and deliver what felt like the hundredth dose of insulin that day. His high blood sugars made me feel helpless, and because I don’t like to feel helpless, it was easier to turn that feeling into apathy. I slept through high alarms. When we went out to eat, I didn’t try to hide the option of french fries on the kids’ menus. I was certain his A1C would be much higher, reflecting our summer vacation mode and my burnout.
Instead, it was his lowest A1C yet, (and not because of lows). The A1C reflected our recent change to sugar surfing, “working the line,” as Dr. Ponder says. It reflected the fact that I’m no longer afraid to call a restaurant meal 100 carbs, to use the fancy pump settings like temp basal and combo bolus. To rage bolus, just a little.
Our endo stayed and talked with us half an hour after the office closed. Guess what we didn’t talk about? His A1C. As we were leaving, the janitors were gathering trash from the waiting room and neatly stacking the magazines. The lights over reception were dark.
On the hour and half drive home, I listened to NPR report on the Senate vote. I thought of all the things an A1C doesn’t reflect: the anxiety I feel about whether my son will be denied coverage, how he will afford his insulin when he’s older, if he will be forced into a career he doesn’t want because of private insurance—the privilege of that thought.
I didn’t know it yet, but the Endo had made two changes to his basal, and Henry’s blood sugar never dipped low nor rose above 115 all night. I only had to wake up and glance at my phone for the numbers. It was almost like sleeping through the night. Almost.