I was diagnosed with type 1 diabetes when I was 16 years old—16 years ago. I’d like to think that I’ve been pretty successful with my diabetes management. I don’t live in the shadow of my condition—in fact I have thrived because of it. It has taken me some amazing places that people with diabetes, according to many authorities “shouldn’t go”—steep, remote, wild places.
I think about this frequently and I know that my story could have been a lot different. I have a theory about this that may seem off the wall—but I believe that my parents are largely responsible for my independence—primarily because they were not physically with me for the first year of my diagnosis to shelter me. I had to wing it on my own, sink or swim and that harsh reality completely shaped the way I viewed myself and my responsibility to manage diabetes. By the time I returned to them for my last two years of high school, I knew my own routine and I was the one teaching them, not the other way around.
I became a parent 6 months ago and it really added some fuel to this fire. Not because I know everything now—quite the opposite—I found myself going to bed every night, fearful of how I would react if my daughter were to be diagnosed. Would I be able to give her the room to struggle that I know she would need growing up? I carried that burden of responsibility. Every wet diaper—is this too frequent? When she fusses for no obvious reason—is she having symptoms that I can’t recognize?
I’d lay awake at night, trying to play out in my mind the steps I’d take to manage her blood sugar—how long I would have to do that before she would be able to do it on her own—how I would react when she told me she wanted to be like her dad, and take off into the wilderness for weeks at a time with her diabetes.
I would have such a hard time relaxing and letting her choose to take on and manage the very same risk that has made me successful with my diabetes. The irony of the fact that all I’d want to do is shelter my child from her diabetes does not escape me. So what does that mean? I’m still working through that, but what I believe to be true is that the diabetes that a parent manages is very different from the diabetes that a child manages.
I recently chimed in on a conversation I saw on Facebook where a particularly vocal “D-mom” was expressing her disapproval that some PWD take pride in “not changing their lancet” and implied that it was sloppy and a poor example—and that she strives to make everything as “up to code” as possible in caring for her child. Nothing wrong with wanting to do things right and follow the rules as a parent.
However, as a person with diabetes who changes their lancet once every year or so, I realized that a parent needs to feel that control through structure and routine because they can’t literally feel their child’s diabetes. A person who has diabetes may have an easier time choosing their battles and bending rules to their advantage because they have other means of feedback to know that they are doing just fine, even with a well-used lancet. I also realized that just because I have diabetes, I’d still have that need as a parent to feel that same control and that’s why I’d have such a hard time giving my daughter space to learn and in some cases fail.
It’s kind of strange being on both sides of the spectrum—but it has really helped me to understand that a parent’s treatment of diabetes is always going to be separate from the method of treatment that their child will ultimately develop—and that’s okay. Whatever diabetes construct we make as parents will have to be replaced down the road by one that is not of our making, no matter how perfectly we adhere to all known procedures.
I realize that there are a whole host of variables that impact this topic—given the fact that I was a teen when I was diagnosed and not an infant or young child–but I know that there must be a lot of parents out there who feel responsible for their kids’ diabetes on some level—and that plays into their management strategy. I experienced painful twinges of that possibility and my daughter does not have diabetes. If we as parents can be aware of our own needs and motivations at work in diabetes management it allows us to have a more open perspective and by extension give kids the tools they will need to be independent and empowered.