“Don’t forget your diabetes!”
My 4-year old son sometimes shouts this in my direction if he sees me headed out the door. I think it’s a reminder to take my glucose meter and other diabetic gear, although perhaps he means it literally, which would also be fine advice. Either way, I know he’s on my team.
Type 1 can be a subtle illness. I don’t look sick – yet my diagnosis, at age 36, rocked the entire family. I am the only one with diabetes, but we all share the consequences of my condition, and we’re all in it together to fight for my good health.
To start with the obvious: my new rituals with meters, syringes, and kitchen scales are impossible not to notice. My son, in particular, has taken an active interest in my daily management. He likes to hold my glucose meter as I insert a drop of blood, and he’s proud to share his knowledge – such as when he confidently told a stranger, “My dad has blood sugar.”
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He doesn’t quite have the terminology down yet. Just the other day he offered me a piece of cookie that had tumbled out of his open mouth onto the dusty basement floor: “Dada, you can have that if your diabetes is low.” It wasn’t the most selfless of offers, but I appreciated the sentiment.
Managing diet, dosage, and more
Food choices are a critical element of diabetes management, and my diet has changed dramatically since diagnosis. My kids are paying attention, and at times they have actually declined cupcakes and cookies in solidarity with their dad. But that’s rare; they’re still typical kids with typical sweet tooths.
Like many parents, we had long been concerned with our children’s sugar consumption. My diagnosis seemed like a natural catalyst for change, and we placed a ban on added sugars at breakfast. This was received as a grave injustice, and an affront to logic besides, as encapsulated by my 6-year old daughter’s incisive response: “But we don’t have diabetes; only you do.”
It was a cruel irony that, at the very same time that we banned sugars from the breakfast table, my children also had to cope with the appearance of forbidden candies in every part of the house. “No sharing, this is daddy’s medicine,” I would say, popping Skittles or gummy bears into my mouth, as they gaped and tried to wrap their little minds around this absurd situation.
Calling my candy “medicine” is in fact dramatically underselling it – a handful of SweeTARTS could be the difference between a pleasant afternoon and a trip to the emergency room. Legitimate danger could follow if one of my kids pilfers the candies I have stored in the car. But they understand the severity of the situation, and have developed the required restraint.
Thankfully, I haven’t needed corrections often. With a diligent approach to diet, exercise and insulin dosage, I have helped make sure that diabetes is rarely at any one moment overwhelming.
A job 24 hours a day, 7 days a week
But it still it hasn’t been easy. The sheer relentlessness of this condition is something I’ve never dealt with before. Even now, after I’ve somewhat internalized the constant vigilance it demands, type 1 diabetes is still explicitly on my mind virtually every minute of the day. The accumulation of mental energy involved with the moment-by moment management sneakily adds up to an enormous stress. In my first months with diabetes I found myself quicker to anger, and at times, I unfairly lashed out at my children or my wife. The anger felt foreign, an intrusion, and it took time before I could identify its source as the insidious mental fatigue I was experiencing.
At one point my wife said that she was anxious to get her “old husband back.” Was I acting so differently that I seemed like a new person? The randomness and finality of this disease was depressing, and the stress had certainly dulled my spirit. I had become more cautious and less spontaneous. It was never going to be as easy as simply recovering the old me; I had to accept that some of these feelings were constructive responses to my new condition.
On the day after my diagnosis my daughter wrote me a card: “Daddy, I hope you get better soon.” At the time, I found it heartbreaking, and it wasn’t easy to tell her that I would, in fact, never get “better” in the traditional sense. But she was right; with her help, I would get better. I didn’t yet know how much my wife and children would rally around me, how much they would shoulder the burden of my diabetes, and how their patience and empathy would help me come to terms with my new reality.