Is it odd that I sometimes yearn for the simple days when we had no social media (to scare us even as it supports us), no Dexcom Share (to unnerve us even as it informs us) and less advanced insulin dosing tools (to overwhelm us even as they give us more concise options)? While we are dashing ahead when it comes to technological advances in the treatment of diabetes, we are woefully behind in helping people learn to thrive with diabetes in the family. Particularly for parents of a child with Type 1 diabetes, it seems life has become more challenging instead of less. In other words, sometimes the information we get from technology is TMI. It helps us manage blood glucose, but it also prevents us from ever having a single moment without thinking about diabetes.
Twenty years into being a diabetes mom, I sometimes think the best way to approach this all has been a bit like Andy Dufresne, the main character in Stephen King’s classic book and film, Shawshank Redemption.
Because like Andy’s challenge of being faced with the possibility of life in prison, we who enter the diabetes life are faced with the ultimate question:
“What are you gonna do: get busy living, or get busy dying?”
For me, as a parent, even back when my daughter with diabetes was a tiny little thing on the old insulins NPH and R, even when she was a struggling teen, even when she dashed off to college 500 miles away and even today, as she navigates this life almost on her own as a young professional, my choice has always, no questions asked, been the latter. I’ve always wanted to get busy living.
There was no magic wand for me to wave to get there. Finding a way to help my child, my family and myself live happily with diabetes on board was really hard. It occurs to me from time to time that just sinking back into fear, restricting, and feeling defeated would have been easier.
So I echo back to Andy Dufrense. That guy, quietly and without pomp, chipped away at the wall keeping him from his freedom. He had patience. He had faith. And he had a goal. So did I. Sometimes, it felt endless. Would we ever get through to a place where we were “okay?” In a way, that answer didn’t totally matter. What mattered is we were trying. What mattered is we were refusing to accept the constraints put on us. And over time it worked.
I had to take a lot of leaps of faith, and give up a lot of my “self” to allow my child to embrace herself and ironically – to rediscover my own self. When you are the mother of a child with an incurable disease, it seeps into every cell of your being. It’s easy to become someone who exists only for their child. It feels selfless but, upon reflection, might be a little selfish. And so I had to find a way to let go of some of that.
Diabetes camp was a start. Offered the choice between being updated on blood sugar and such things or trusting camp to take it on, that first year I almost had to force my hand down and check off the “let them do it” box. And I’ll be honest: I was nervous at first. Back home and away from being her medical caretaker, advocate and hero, I felt hollow. But the more times I did it, the more that “hollow” refilled with the many things that made me “me” before I was a diabetes mom, and would go on to make me “me” in the future. And hey, my ego may have taken a blow but, she could be just fine without me.
Then I had to extend this in “real life” and not just camp life. This has to be so hard for parents today. Armed with tools that show them every single up and down and in between, it has to be terrifying to send them off where – goodness – you might not have control. But I did it. My daughter went on bike rides with her friends (and without me following her in a car waving glucose tabs at her as I would have preferred!). She went to sleepovers where the parents knew only the basics. She went on overnight school trips without a nurse and without me. Every little chip in that wall came with much sweat (and maybe some secret tears) from me. But every chip got us closer to freedom
Andy Dufrense swam through a river of sh** to reach his joy; we kind of did too.
And that’s how I came to be the (almost always) confident parent of a child with diabetes. There were days I wondered if I’d ever get there. But the journey itself was worthy, and the finishing point is amazing.
My kid is grown, confident, living on her own, rocking the world, looking back on what she sees as a giddy, happy, semi-normal childhood. I’m the mom/advocate who also found time to play tennis, hang with friends, and charge toward my own career goals.
The tools we have today should make parents stronger, guide them to make better decisions, and help them let go.