When my eleven month old niece, Ella, was diagnosed with Type 1 diabetes, I was equal parts stunned, angry, and sad. My sister (Ella’s mother) and I both have Type 1 diabetes, but Ella’s diagnosis still came as a shocking blow. How could this have happened? Ella was so little. It just wasn’t fair. I felt grief for the carefree life she would never know. This diagnosis had robbed her of that, and she was just a baby.
I thought back on the stages of my life, and how diabetes has always been present. Most of the time it was in the background, but yet always there – nagging, preventing me from feeling truly untethered and without responsibility or worry. Until Ella’s diagnosis, I really hadn’t thought all that much about her future, but on the very day of her diagnosis I painted pictures of her in my mind’s eye as a little girl, a teen, a college kid, and felt a sense of sorrow that maybe only someone who’s lived with diabetes for decades can feel.
I remember a classmate’s birthday celebration when I was in first grade – cupcakes were were distributed, but then my teacher remembered that I wasn’t supposed to get one, and she ran across the room to my desk to grab the treat. My cheeks flushed as I felt dozens of curious eyes on me.
I also remember a gymnastics meet where I had to devour a juice box and a tube of chalky glucose tabs before my turn in the lineup for the floor exercise. I saluted the judges and began my routine, my limbs still shaky and my body working to digest the sugar before I performed leaps and back handsprings.
In high school I played field hockey games where I tried to get just a few more minutes on the field, although I knew I should get to the sideline to check my blood glucose level, which I could tell was dropping. “I’m not tired,” I wanted to tell my opponents, “I’m low!”
I didn’t want Ella to have to experience any of this, but as I said, most of the time my diabetes stays in the background. I remind myself of the fact that the majority of my days are just like anyone else’s, I just have to do a bit more planning to get through them. The times when diabetes doesn’t stay in the background, however when it rears its ugly head and disrupts life, it’s extremely frustrating. I long to eat a meal without thinking about it, to head out for a spontaneous jog without having to think about how much insulin is currently in my system and finding somewhere on my person where I can stash sugar.
What I may lack in positivity, however, I make up for in determination. On the day Ella was diagnosed, a cure for Type 1 diabetes became more important to me than ever, and I knew I wanted to do more diabetes advocacy. Over the years our family had fundraised for JDRF and participated in the annual walk, but that once-a-year effort didn’t feel like enough to me anymore. I’d recently gotten involved with JDRF Advocacy, and knew I could do more there. In 2013 I accepted the role of VP of Government Relations for the New England chapter.
I also bit the bullet and signed up to ride the 100 mile JDRF Ride to Cure. It was tough, especially with diabetes along for the ride. But Ella was my motivation, pushing me over each hill.
Today, four years after Ella’s diagnosis, she can now (with help) bolus her own insulin. She can tell us when she “feels shaky,” when she might need a snack, and I think may have even learned to say she needs a snack when she actually just wants one (hey, fellow T1Ds diagnosed as kids… I think we’ve all done this!) The fact that she can now communicate with her parents about her care is significant. Gone are the days when their screaming toddler may have high blood sugar, need glucose immediately, or simply have a wet diaper. There’s certainly a long road ahead. But the phases of life I pictured for her? I now envision her owning each of them, diabetes or not.