What does it take for the parent of a child with diabetes to go from devastated to hopeful to empowered and determined? For me, the answer was more than learning all I could to care for my daughter hour by hour. For me, the answer was becoming a voice on Capital Hill listened to – and more importantly – responded to, on issues that further the mission to cure diabetes.
When my daughter Lauren was diagnosed at her sixth birthday nine years ago, it was all I could do to breath. I spent those hospital days drinking in what seemed like an endless fountain of information. I felt like I’d be smacked down in one of those foreign language emersion classes. You’re not getting out until you speak the dialect! I headed home with our tower of medical supplies: syringes, insulin bottles, meters, strips, ketone strips, and a heavy heart, fearful not only of what the next days would bring, but what the future would bring. If one more person said “incurable,” I thought I was going to lose it.
But we survived. In what seemed like no time at all, my tiny daughter was giving her own shots and pricking her own finger. I remember the day I first knew, in my heart and mind, what the insulin dose adjustment would be. I didn’t call the endo; I made the change. Voila! I was “speaking” diabetes. I learned to color code her log book to help me see trends; she learned to feel her highs and lows coming on and react to them.
But still, I knew, this was not something I could let my daughter live with. Then I read about a group that needed some help with some funding issues in Washington. The Juvenile Diabetes Research Foundation had a grassroots troop of parents who stretched across the nation and worked in harmony to let Washington know what was needed for diabetes research to progress. I wanted in. So I signed up to be an “Advocate,” meaning, I’d get “action alerts” when a congressman or senator in my area needed to hear how I wanted them to vote. Soon, my daughter and I were meeting personally with our congressman and senators, and I was up to speed on all that was going on in Washington with diabetes research.
