The hard part, the part that is so difficult to talk about, to ever explain—is when this disease stops him in the middle of being a kid. It just happened. Frankie is at a sleepover birthday party, and my phone rings. He has only been over there about 2 hours. I hear the ring and know it’s him. I answer- it’s Frankie. “The cap flew off my lancet and we can’t find it, we are gonna eat and I can’t take my number, Mom.”
I can hear in his voice the sound of diabetes interference. The catch in his voice- the sound of disappointment, anger, mixed with a bit of fear. It hurts me to hear it. It hurts him more to experience it—but he never admits it -except in the dark, middle of the night, BG check times-when he spills his guts over the glow of the glucose meter. I can’t rush to help this time; I just had surgery and can’t drive. I can’t jump in my car and get him a new lancet. That fact hurts too—but I swallow it, swallow the tears that want to bubble up and say as cheerful as I can “No worries buddy, I can’t drive one over, so count the carbs for what you are going to eat and dose for that minus 10. When dad gets home he will drive over a new lancet okay? That will be in an hour or so. Then you can check your BG and you can correct if you need to-Okay?” I hear him breathing, in and out, he is keeping it together, and replies “Okay, got it, it’s okay. Send Dad when he gets home.” “ Dad will come as soon as he can, you’re doing great! Love you, Have fun” I say. “I am, Love you too” he says.
You plan, prepare, plan and prepare. Everyday- for every activity and action. Pack a bag for all and everything, talk and teach diabetes to his friend’s parents, teachers, and neighbors. We write up care notes, and emergency plans. We do all and everything to make time with friends, a sleepover, going to school, going outside as seamless as possible–as normal as possible. Then a lancet breaks, supplies get wet, a pod malfunctions, insulin goes bad-diabetes rears its head and shouts “You are not like the other kids, don’t forget that.”
Dad delivered him a new lancet. Frankie checked-his BG was 190. “Thanks Dad!” Life goes on.