Living in the Grey
Grey — as in the color — rocks. As a lifestyle? I’ll pass. I prefer black and white. My job at the National Council of Jewish Women is to cover federal policy — literally black and white on a page, or on a screen as is the reality for most of us.
Yet my son has a chronic illness that operates in the grey: Type 1 diabetes (T1D). The irony is not lost on me. At the JDRF Capital and Maryland chapters TypeOneNation Summit last month, we heard from two of our new heroes — Adam Brown and Gary Scheiner — whose books were the first we picked up in the early hours of learning our son’s T1D diagnosis. (Note to self: must find diabetes sheroes). Per Adam, T1D has at least 42 variables causing blood sugar to spike and crash. Eggs and cheese for breakfast one day can help alleviate blood sugar highs and lows, and look the complete opposite the next day.
How well we know this already. Celebrating a family birthday with cake only led to one hyperglycemia while a day of eating high protein, high fiber, and low carb resulted in 5 hypoglycemic events. Do I like this? Not one bit. There’s no guarantee, no control, and no clear path. All grey.
We also learned that TID is on the rise in individuals age 20 and younger. In fact, between 2001 and 2009, there was a 21 percent increase in the prevalence of T1D in people under age 20. It is a fatal disease without insulin treatment, and there is no cure. Nothing grey about that. At my son’s three month appointment with his medical team, the Certified Diabetes Educator mentioned her penchant for clarity, favoring black and white over the grey that is every day with T1D. Though I respect and rely on her so much, I can’t help but think what a strange line of work she chose.
As we stumble into month 4 we feel like we simultaneously know everything and nothing. The TypeOneNation Summit was an eye opener — so many people touched by T1D in one place. The food was T1D friendly and all carbs were clearly indicated. How effortless to feed my child after the daily Sisyphean task of meal planning, calculating carbs, and dosing insulin — only to have him go out of range. Despite the joy of being with so many who intimately understand this terrible disease, bumping into old acquaintances was a reminder that it’s definitely not the kind of place you want to run into somebody you know.
Thankfully, my son is managing beautifully. We’ve been waiting for the shit to hit the fan, and he’s had exactly one meltdown. Suffice it to say I’ve had a few more. He shook it off and moved on, but it broke my heart and will forever haunt me. I would do anything to have T1D instead of him.
We take each day as it comes. Our current focus is researching insulin pumps while other kids his age are exploring college options. His differences have already dictated a more unique path, and the new T1D diagnosis confirms he’ll take a gap year followed by college (assuming he leaves our basement and the cat). Or, it may take a few more years. We know T1D will neither prevent him from fulfilling his promise nor supplant his ability to do anything he wants in life. His trajectory may just look a little different from the average 17 year old. Like I said, grey.
