Ever since Madeline was diagnosed, she’s been ultra sensitive to people knowing that she has diabetes. She has balked many a time at being tested and given insulin in the presence of others. While I’ve tried to be sensitive to her feelings and respect her request for privacy, I’ve also been discussing with her the importance of other people knowing she has diabetes. We’ve talked about why it’s so important for diabetes to not be a secret, not only for her own well-being, but for the fact that there should be no shame in having diabetes.
Toward this end, we’ve tested and treated many times in public. Sometimes, I honor Madeline’s request for privacy. But most of the time, I support her and encourage her as we push through the experience in, say, the bath towel aisle at Target, at the dinner table at Uno’s, or on the bleachers at her baseball games. I don’t want her to learn that she has to hide out in this disease, nor do I want to shield the world from the fact that children struggle with it–and live their lives in spite of it–every single day.
Since I feel so strongly about this not hiding out thing, I’m puzzled by the feelings I had this weekend while treating D in a very public venue. Our family attended a Fisher Cats baseball game–our local AA team. Great day. Beautiful weather. We had seats five rows behind home plate. Our well-stocked D kit was ready to handle anything, including Madeline’s desire for…80-carb-fried dough. I couldn’t say no to such a yummy (and rare) treat, but I held my breath while calculating her very large insulin dose as she gobbled it down. As I crunched the numbers, I quickly became aware of the crowd of eyeballs surrounding us. Adults and kids alike sitting in front of us, next to us, and behind us, began to oggle our routine. Funny, Madeline seemed oblivious to the gaping stares in her fried-dough-intoxicated state. Meanwhile, I was aware, then increasingly annoyed. I had this visceral desire to bark “WTF are you staring at?! Haven’t you ever seen a kid get insulin before?!” Alas, I did no such thing. Instead, I raised my voice as I “talked” us through the dosing routine–my way of informing the gawking masses of what was going on. We got through it just fine, and Madeline was gloriously happy with her powdered sugar smile.
Later, I thought about this experience. Why was I so annoyed? I mean, I want people to know that Madeline has diabetes. Frankly, it’s a demand of mine. The more people who know, the safer she is, and the more aware everyone becomes about this dreadful disease. So, if I want everyone to know, well, then I can’t really be annoyed when the stares commence. What do I really expect people to say or do in response to such an unusual situation? I’m certain that most people have not encountered a child with diabetes, at least not in a way that makes D perfectly transparent. When they do, should I expect them to look away quickly, as though they were not curious or did not notice? Shouldn’t I be grateful that, in witnessing D-management first hand, they have become just a little bit more aware?
Yes, now that I think about it, I am grateful for all those stares. We educated a few more people that day at the ball park. Good for everyone.