We recently celebrated Sugarboy’s 6th diaversary (anniversary of the day he was diagnosed with diabetes).
Why do we celebrate such a thing?
We celebrate life.
Sugarboy was in DKA at diagnosis (diabetes ketoacidosis – very serious and dangerous – life threatening actually). We spent 5 nights in the hospital getting Sugarboy better and learning how to keep him alive.
I didn’t want to leave the hospital. I felt safe in the hospital. Nurses and doctors where just steps away if something went wrong. I didn’t feel like I could do all that needed to be done to keep my boy alive. They made us leave anyway.
Those days in the hospital; learning how to fill a syringe, prick his finger, calculate insulin ratios – that was just the tip of the iceberg in the diabetes world. I didn’t realize that. To me that block of ice was huge and threatening and had sharp edges. I hadn’t yet begun to see beneath the tip or to understand the depth in which diabetes reaches.
I was focused on the physical pain I was going to have to inflict on my 2-year-old son multiple times a day. I focused on how diabetes wasn’t going to go away anytime soon. I was thinking about how I would need to restrict his diet and limit sweets. Those things are above the water – it’s what we see at first and they are scary by themselves.
The days following the hospital Sugarboy got used to the shots and the finger pokes. We learned how to count carbs and calculate insulin. We didn’t miss random cookies. My boy still played soccer, went to mothers-day-out, played with friends and begged to stay up late. I relaxed a little. That floating ice above the water seemed easier to navigate. Still I didn’t see beneath the water.
In the following weeks I started reading more about diabetes. I read an assortment of books and websites. Many focused on healthy diets and exercise. A few discussed issues that teens have with diabetes. Some focused on the complications that can be caused by diabetes. Learning about the complications in my very sleep deprived state is what pushed me over the side of the iceberg and gave me a glimpse of the dangers that hid beneath the water.
That’s when I realized that the shots and finger sticks are the smallest part of diabetes – they are the logistics of diabetes. The larger parts (the ice beneath the water) are the emotional, social, and physical toll imposed by diabetes.
Sugarboy has now spent 3/4 of his life with diabetes. He doesn’t remember a life without diabetes. I do though. He doesn’t remember – maybe that is a “good” thing? Maybe because he doesn’t remember he doesn’t resent diabetes as much as my daughter who was diagnosed at age 9. Sugarboy doesn’t get angry at diabetes often – maybe twice a year he will voice anger about diabetes. Sweetstuff gets angry often – she is angry more than she is not – she is also 13 and her hair makes her angry daily. (not trying to dismiss the emotional toll of diabetes – just saying everything makes my 13 year old angry)
Yet I fear the storm is coming. I fear that as Sugarboy grows and becomes an adolescent he too will begin to resent all that diabetes is, does, requires.
For now – we make cupcakes to celebrate life. We congratulate him for his courage. We celebrate that he is with us. Too many kids are lost to a missed diagnosis. Each year on his diaversary (and many days in between) I tell him I’m proud of him and I tell him we fight for a cure that we will see in his lifetime – then later when I’m in the shower, or on a walk, or doing dishes late at night while I wait on a high or low blood sugar to return to a safe range – I cry. I curse diabetes and other things. My chest aches because my heart breaks.
It’s not the tip of the iceberg that can sink us. It’s the hidden monster beneath that can rip us apart and tear holes in our souls if we don’t acknowledge that it’s there.
I see you diabetes. I recognize your power, your depth, your sharp edges. I see you – and I raise you the love of a mom, the strength of a community, the power of knowledge.