Two moms talking about our families' lives with type 1 diabetes
Our son was diagnosed with type 1 diabetes at the age of 14 months. Like any other parents living with this dragon, we had to measure every ounce of milk, had to fight to get him to eat something – anything – to match our over-estimate of how much we thought he would eat. At times we stayed home from social gatherings and outings because it took too much energy to plan and to pack and to haul all the stuff. Sometimes we felt isolated, overwhelmed, resentful. I had prayed for only one thing: for our children to be healthy. I had begged: Please, God, not _______ (fill in the blank with any affliction that holds an annual fundraising run). Please protect them from illness and harm. Funny that I never thought to beg off diabetes.
After the shock of diagnosis wore off, often I would think: this is not what I had planned for our family. I had envisioned long walks, hand-in-hand-in-hand on sunny days… without looking for signs of an exercise-induced low. I had imagined waking gradually on a Saturday morning, all of us cuddling in our big bed and having a leisurely breakfast when we felt like eating… not rushing to check blood sugar because we’d slept through a middle of the night check. I had planned on sending my children off to kindergarten with a confident wave and then heading off to my reclaimed career with a go-mug in my hand and a spring in my step… not returning to the elementary school to help with snack time, not clutching my cell phone and waiting for that call and then feeling guilty when I got distracted and missed it. This is a club I never wanted to join. I didn’t want to be this family.
Sometimes we would encounter another family who was challenged by more than one dragon, sparring with type 1 diabetes on one side and autism on the other. Or cancer, Down’s Syndrome, or celiac disease. Or two family members with diabetes. And I would think, well at least we only have the one dragon. We had come close a few years ago when my young daughter had a high blood sugar scare, and it seemed inevitable that she, too, would become insulin-dependent. But after months of watching and waiting, nothing more happened. Whew! We had dodged that syringe, still had only one dragon in our family. I may not have wanted to join the Families Living with Diabetes Club, but I really didn’t want to join the Double Dippers Club!
And then my membership card arrived in the form of my own celiac disease diagnosis. I tumbled down through many of the same feelings of grief, anger and sadness that we had processed years earlier when diabetes had set up camp in our home. Anger? Oh, yes, I was mad: That’s just what we need is more food restrictions, more to think about and plan for, more of a burden at restaurants and in the homes of family and friends gullible enough to invite us. More worries about complications, future health, and the genetic burden we have passed on to our kids. This isn’t fair. We already have our share. This is not what I envisioned for our family. I don’t want us to be that family.
Have you ever had that feeling? That this – whatever “this” is – was not what you signed up for? Maybe your “this” is diabetes and/or celiac disease, too. Maybe it’s another medical issue, or poverty, or family estrangement, or a learning disability, or the death of a loved one. Maybe it’s the loss of a job, or loneliness, or feeling trapped in a routine that is less than you hoped for your life. Whatever it is, a friend reminded me lately: Everyone has something. So for your “something”, I just want to say: I’m sorry you have to deal with that. I’m sorry that it gets you down sometimes. Maybe if we come together with our different battles, in unity over the fact that we all have battles, that we’re all that family in some way… maybe then it won’t feel quite so hard.
I can’t say that I’ve gotten to a place of complete acceptance about our family’s challenges. Some days I’m still mad or overwhelmed. Some days I wish we could put it all down for a day, take a rest. On that magical day, our family would eat pizza and fluffy croissants and regular maple syrup and battered fish and chips — all without counting a gram — and I would chase it all down with a nice, dark beer. I would take Communion again; all of it. My son would go to birthday parties and sleep-overs without me worrying about that missed slice of pizza or the possibility of him sleeping through the middle of the night BG check. What a blessing that would be for a day.
But there are blessings in our regular life, too. Lots of them. Now there are more times than not when I think: It is what it is, and we’re coping just fine. Most days I don’t need fluffy croissants or beer; these days I only occasionally feel frustrated when there’s only regular cake instead of gluten-free. We have a system to deal with carb-counting and rising blood sugar.
Though it’s not the way I would have chosen, I wouldn’t trade my family for the world. Dragons and all.
Now that you’re living with diabetes, how is your family not what you envisioned?
For more about families living well with type 1 diabetes, visit WaltzingTheDragon.ca.