Excerpt:
Prologue
pg 1 2 3 4 5 6
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Prologue, page 2
In medical-speak, the word is polydipsia—abnormal thirst. It’s an early symptom of diabetes: your body, suffering from elevated blood sugar, pees out the excess glucose and triggers the demand for more water. As the disease progresses, the body burns its own fat for energy, leading to a similar cycle of insatiable hunger followed by rapid weight loss. These are signs of type 1 diabetes, which is usually diagnosed in juveniles and treated with insulin.
I was diagnosed with type 1 at fifteen, and like every parent with diabetes, I scrutinize my kids—we also have a six-year-old daughter, Amanda—every day for symptoms, real or imagined. Hunger. Thirst. Fatigue. Weight loss. Emergency trips to the bathroom. Cuts that heal slowly. Crankiness. Unusual cravings. Any aberrant behavior could be a sign, however tenuous, of disorder in a child’s finely tuned metabolic system. As a diabetic, I learned early on that the price of health is eternal vigilance, but as a parent, the price of devotion is chronic paranoia.
Garrett, at this stage, displays no other symptoms. He hasn’t lost weight, increased his appetite, or complained of tiredness. On the contrary, he cannot look any better or behave any more vibrantly, a high-spirited little boy with tousled sandy hair and limpid brown eyes. His preschool teachers call him “Smiley” because he’s always laughing. He loves sports—running, tackling, kicking a soccer ball—and is already hitting live pitching in our driveway. He’s strong-willed—a nice way of saying he’s stubborn. One night we heard a loud thump in his room. He had climbed out of his crib and crashed to the hardwood floor. We figured he had learned his lesson and put him back in the crib. Minutes later, thump! He had repeated his escape to the floor. At eighteen months, he was out of the crib. His pediatrician says that, pound for pound, he’s the strongest patient she has.
But all the signs of health are now misleading. A nagging cold has slowed him down, and despite my coaxing, his desire for water continues to be strong. Events take an eerie turn one day in September 2004, when I interview Jeff Hitchcock in Boston for this book. Hitchcock’s daughter, Marissa, was diagnosed with diabetes in 1989. Finding little medical information, he started a Web site about diabetic children from his home in Hamilton, Ohio. The site was so wildly successful—250,000 hits per day from 149 countries and a raft of advertisers—that Hitchcock quit his engineering job and now organizes conferences and programs as well. He is revered by parents who feel neglected by health care professionals and find his site informative and comforting. When I meet Hitchcock, I understand his appeal. A lean man with graying hair, glasses, and a soothing demeanor, he speaks optimistically about the day that improved therapies will eliminate diabetic complications. But he also directs stinging criticism at the medical field. This combination of hope and frustration resonates with any diabetic. Asked what the success of his site reveals about diabetic care in America, he says, “It stinks.” And what should parents do if their child is receiving poor care? “Fire the doctor,” he says. “That doesn’t happen nearly enough.”