It’s that time of year again … out come the long sleeve shirts and jeans, slippers and favorite hoodies. For many kids and many parents, it is the season where people finally give you break. They stop asking what that thing on your kid’s arm is. They stop wondering what is attached to their leg. After all, diabetes is an invisible disease.
This is the time of year I’m most reminded that this disease is everything but invisible. A type one diabetic mom never forgets that their heart and sole is running around with a bomb attached to their little perfect body. I mean that figuratively, while a pump, itself IS a bomb in it’s own right and should always be thought of as such.
This disease is relentless. The days that seem to make the most sense on paper are actually the days when diabetics and diabetic caregivers are the most baffled. Being the mother of a child who is on a treacherous blood sugar battle to the death is like watching an old wooden coaster in New England. You know the one .. it’s the best one at the park, but if you stand at the right angle you can actually see it shift as the car races the tracks. It’s a wooden roller coaster, so it’s okay, right? Yeah, let’s go with that. I guess there is a difference, the people on the coaster knew full well that the coaster seemed sketchy, yet they chose to take a risk, have fun and maybe not die for that five minutes of their life. No child, no parent, NO ONE EVER chose to have type one diabetes, there’s no way to step off that death ride.
In my very specific case, my child will never know a life without this invisible disease. For all intents and purposes it is, just that, to her, invisible. Sure, she sometimes has a tummy ache. When an alarm goes off she knows she can drink a juice box (which she loves!). She gets poked with needles often and understands that she is part robot and that’s just who she is.
This baby has never had to manage her disease alone. One day I will obviously need to teach her. I imagine it will be slowly over time, easy and natural … But here’s what I was thinking … what if I don’t. Crazy, right? More than crazy? Oh for sure!
Right now, I’m the one with diabetes. She has devices on her body, but I’m the one that feels the most emotional and mental pain. I’m the one with the sleepless nights, carb counting, meal prep, bag full of medical supplies and tools. It’s all me. Maybe it is crazy .. but wanting for that to become a burden on her is not something I look forward to. She is a fighter and she’ll be okay. I know this. I would just give ANYTHING to make this disease as invisible to her as this favorite hoodie season makes it look to everyone else.