My husband Mark and I both have type 1 diabetes. We met as counselors at diabetes summer camp, and married many years later. We knew we wanted a family, and we also knew there was a higher-than-normal possibility that our children would one day be diagnosed with diabetes. We knew this, yet we rarely spoke about it because we firmly believed that it was never going to happen to us.
Then my daughter Ellie was diagnosed at the age of five.
I thought I was going to die.
At that point in my life, it was already all diabetes, all the time: My own diabetes, my husband’s, and my career as a certified diabetes educator (CDE). My children were the only big part of my life that was diabetes-free. It was the part of my life I never wanted to associate with diabetes.
When Ellie was diagnosed, I began to crumble under the sadness and anger. I did not want this for my daughter. I did not want her to have to deal with diabetes. I did not want this as a mom. Hearing “at least she has you for a mother” or “if anyone can do it, you can” only made it worse. The words that did help, however, came from a fellow mother of a child with diabetes. When she found out about Ellie’s diagnosis, she said, “Welcome to the club.” That was my light bulb moment, my moment of acceptance. That was all it took.
Ellie is 13 now, and an incredible young woman (though I know I am a bit biased). She makes diabetes look easy, and always has. She rarely complains. Recently Ellie was challenged at school on Vermont Writes Day (an arm of the Young Writer’s Project) to draft an impromptu writing piece based on a series of prompts; she chose “Imagine”.
“My wish isn’t like Cinderella — to escape and go to a ball and have Prince Charming fall in love with me.
It’s not for all the money in the world, or even to have anything and everything that I could ever want.
My wish is a lot simpler than these, and yet more complicated.
My wish is for a cure. A cure for what I have dealt with since I was five; a cure for what I will have to deal with the rest of my life.
My wish is to have a cure for all of the people in the world with Type 1 diabetes. There are so many people out there, so many who have – and are dealing with – this disease.
Yes, it’s livable, and yes, it’s possible. No, I won’t die from it. But every day is another day that my blood sugar could drop in the middle of a test, or I could be low at dance. If I had one wish, I would wish for a cure to be found soon for my disease. I would wish that the scientists would finally understand and come to the conclusion.
With my one wish, I would wish for this to all go away, and for kids like me to be able to be “normal” again.”
As I read Ellie’s essay, I understood with tears in my eyes that she imagines a diabetes cure. She imagines a world without type 1 diabetes. And she actively wishes for both. But… me? After living with diabetes for 33 years, Ellie’s words made me realize that I don’t imagine a cure. I have not wished for it for quite some time.
Am I pessimistic? Have I acclimated too well? Maybe my level of acceptance is too strong. Or maybe I just firmly believe that I must, as of this moment in time, deal with my diabetes, Ellie’s diabetes, Mark’s diabetes, and even the diabetes of hundreds of kids in my clinic. Maybe I feel too strongly that my focus needs to be on dealing with diabetes, not imagining our lives without it. Or, perhaps I have been told for far too long and by far too many that a cure is on the horizon, only to be let down time and time again. Most likely, the reasons are bits and pieces of all of the above.
But, reading Ellie’s essay made me realize I can’t ruin her dream of a cure. It also made me realize that I, too, desperately want a cure for her. I cannot imagine my life without diabetes, but I easily can imagine that life for her. And I’ve learned I can just as easily wish for it. And so from this point forward, I will. I will imagine and wish with as much conviction as she does.
*As it turns out, Ellie’s essay was published by the Vermont Young Writer’s Project in their monthly online publication.
Lisa Bolduc-Bissell, RN, CDE, graduated from the University of Vermont School of Nursing and has been a Certified Diabetes Educator for over 18 years. She has worked with adults with diabetes at the Joslin Diabetes Center in Boston and the Vermont Regional Diabetes Center at the University of Vermont Medical Center. Since 2006, Lisa has been at the University of Vermont Children’s Hospital with the pediatric diabetes and endocrinology team. She lives in Vermont with her husband, Mark two children, Ellie and Eric, and several furry animals.