When I graduated from the University of Virginia, I left with skills I knew would help me in work and in life. I never imagined how much I would need them or use them until our lives changed forever. We watched the television coverage in horror as everyone did when the towers fell, but living in Manhattan at the time, we also smelled the burning buildings and watched as people frantically tried to buy water. I was seven months pregnant with our second child and we were stranded in New York City—our car was not accessible and all the bridges and tunnels were closed. We thought we would never again encounter anything as terrifying.
When the George Washington Bridge opened after three days, we drove as fast as we could to see our families in Virginia. I scolded my 2-year-old daughter, Holland, for wetting her car seat. This seemed impossible; she was potty-trained for goodness sake! Why hadn’t we noticed how thin she had become? Growth spurt, I thought. Maybe she doesn’t feel much like eating because she senses the trauma of 9/11. But for the life of me, I couldn’t understand why she insisted on having her sippy cup of water with her at all times.
After our return to New York the following week, I started to keep track of what Holland drank in one day: 64 ounces. Is that a lot for a 3-foot-tall, 25-pound child? And why had she cried for six straight hours that night when I tried to break her of her sippy cup habit? “I need to see you in my office in five minutes or less,” the pediatrician told me the next day, having diagnosed Holland with type 1 (insulin-dependent or juvenile) diabetes over the phone. There was no history of diabetes in my family, so I had no experience to draw from. I asked if she was going to die.
I spent the next five nights in the hospital bed with Holland in an ICU wing with other sick children. We were less than five miles from Ground Zero, fearing anthrax attacks and wondering why I had not bought that gas mask and duct tape. But what I feared even more was the crash course in diabetes management that my husband and I had to perfect to care for Holland: routine finger pricks 7-10 times a day, 4-5 insulin shots a day for the rest of her life and a regimented diet including carbohydrate counting at every meal. I think back and wonder how I had the strength, but more importantly I wonder how Holland had the strength. “Mommy, what are we doing here?” she asked. “I’m not even sick.”
Maybe not sick now, my mind raced, but will she ever be able to have children? How could I ever let her go off to college? What is this doing to her organs? Can she go to a birthday party? Would she be able to play soccer or go to ballet?
When Holland was four, she asked me a question I will never forget. We were in the back of a taxi on our way home from ballet—I had discovered that she could take those ballet lessons and play soccer. “Will I have diabetes when I am big?”
“I hope not,” I said. “And I’ll do everything in my power to see that you don’t.”
“Do you promise?” Holland asked.
And I promised her, trying not too successfully to fight back tears.
Thousands of syringes, glucagon, an insulin pump, and more than 18,000 finger pricks later, my husband, Frank (Col ’91), and I are still trying to do our part to help find a cure. Our experience with Holland’s diabetes has been a family affair. Our friends and family have been incredibly supportive in helping us keep my promise to Holland, although at times I know it is hard for most to understand. Hard to understand that pasta and orange juice can be just as bad as cake, and that steak and cheese can be fine. Hard to understand why we can’t just leave her for the weekend. Hard to understand why she needs to wake up countless times a night to have her blood checked. It took my mother two years to tell me how hard she cried when she had opened the door to the linen closet in our guest bathroom and saw a Tide detergent bottle full of used syringes.
Looking after Holland in addition to two younger children has become a full-time job, but our dedication to finding a cure for diabetes continues year after year and won’t stop. As ChairMom for the Juvenile Diabetes Research Foundation’s 2007 Children’s Congress in Washington, D.C., in June, I joined 150 families from all over the nation—all affected by type 1 diabetes—who went to Capitol Hill to put a face on this disease and lobby Congress to support a much-needed increase in federal funds for type 1 diabetes research. We were joined by fellow 1991 College graduate and dear friend Chris Schutt, who joined our world when his son was diagnosed as well in 2002. That our UVA friendship would translate to helping one another at this level never crossed our minds before diabetes.
Holland’s determination to live with this incurable and insidious disease at such a young age is where I find my strength. One day, she, and millions of other children like her, will be able to walk away from insulin shots and painful finger pricks. On Capitol Hill, I took all the best of what the University of Virginia taught me and used it to help the best of what my life is about: my family and my child.