Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes. These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between. High school angst, the issues of disclosure, the pursuit of “perfection,” and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.
“I was invited here to talk about how to raise a child with diabetes without losing your mind. But I’m not really qualified to talk about that sort of thing, to be honest. I’m not the parent of a diabetic child. I am the diabetic child.”
The parents at this group were wonderful, all actively engaged in their child’s health, just trying to make sense of what diabetes doles out every day. We were a small group – about 12 of us in total – so the conversation flowed pretty smoothly and comfortably. And we hit upon some very intimate issues.
Like menstrual cycles and their impact on blood sugars. (Remind me again why I’m talking about puberty and my female hormones with strangers?) Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.
I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower. I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts.
“I wasn’t the best kid, and definitely not the best kid with diabetes, but I made it through okay. And my parents and I? We still talk. And we still like each other.”
“What advice do you have for parents who are dealing with teenagers? What’s on the ‘don’t ever say that,’ list?”
And the only thing I could think of was the epic “We.”
“It’s just that one pronoun. The ‘we.’ We need to test our blood sugar. We need to take our injection. We have diabetes. This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren’t diabetic. They didn’t know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally.”
The group nodded, understanding.
“But it wasn’t until I was older that I realized the ‘we’ concept did apply. It wasn’t just me. It was all of us, as a family, living with this disease. And even though I was the one who had diabetes, my parents were dealing with something, too. Diabetes has a lot of different sides to it, and it doesn’t just affect the person who actually has it. So it is a ‘we’ thing. We live with diabetes, as a family. And it took me a long time to realize that.”
One of the parents piped up. “How long?”
“Like … yesterday morning? Maybe Friday, at the earliest.”
She laughed. Another parent asked, “When will my kid figure that part out?”
“I don’t know, honestly. Everyone’s experiences vary. For me, diabetes was a dragon that we, as a family, fought together. We didn’t fight one another, but it was us against IT. And now, I’m a married woman with a husband who goes to the doctor with me instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell ‘basal insulin’ is, but she still has the same protective instincts, and still works hard to take care of me.”
“Even just this past Friday, at my Joslin appointment, I saw this CDE I’d never met before. This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough. I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together.”
“And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, ‘It’s been a long, emotional day. And you are supposed to support her, not rip her apart. I think you should tone it down a bit, don’t you?’”
“I guess you don’t ever age out of being the parent of a kid with diabetes.”
Diabetes is a journey, and for some of these parents, they’ve been on it for many, many years. For others, they are just beginning to take those first steps. And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.
*This blog post was originally published at Six Until Me.*