OPINION: A child and her family learn to cope with diabetes
Last summer our plans for an idyllic summer vacation in Washington came to an abrupt halt. Our first day in the capital, our normally energetic 9-year-old, H.J., was dragging her feet, constantly asking for a drink and bathroom break. We attributed her lethargy to the blazing heat, but took her to a clinic to be sure.
Our child wound up in the emergency room at a local hospital. Her diagnosis - Type 1 diabetes, with a glucose level of 575 and diabetic ketoacidosis, which could lead to death - left us dumbfounded and propelled us on a journey for which we were ill prepared.
Diabetes, as it relates to obesity and poor diet, is much talked about in the media. But I had never heard of Type 1. H.J., as physically fit and healthy as her two siblings, didn't fit the profile. But unlike Type 2 diabetes - considered a "lifestyle disease" because it's linked to poor diet and lack of exercise - Type 1 diabetes is a disease in which the body's immune system destroys insulin-producing cells in the pancreas. Insulin, a hormone, helps convert food to energy. An estimated 3 million Americans have Type 1 diabetes; of those, about 125,000 are kids younger than 19.
For my daughter and others with Type 1, dealing with fluctuating blood sugar levels is nerve-wracking. Managing the disease for which there is no cure entails frequent finger-stick blood testing. My child's day begins and ends with it: before meals, before and after physical activities, at bedtime, and often at 2 a.m., when her numbers can swing high or dip low even as she sleeps. She also counts carbohydrates to calibrate her insulin dosage.
She uses a pump that releases continuous insulin through a thin tube placed under her skin, but it's not foolproof. Recently, she woke up feeling nauseous and lethargic, with her sugar spiking dangerously high after the pump failed to deliver insulin overnight.
While H.J. lives her life as fully as she can despite the challenges, her dad and I lose sleep worrying about her.
We keep our fears in check by finding support in groups such as the Juvenile Diabetes Research Foundation (JDRF), which advocates for people living with the disease and funds research to find a cure. Her diabetes care team, school staff, friends and family also are key to her lifelong journey.
On Oct. 3, friends and family will join JDRF's Walk to Cure Diabetes at Belmont Lake State Park in North Babylon. My daughter, who normally shuns attention, is thrilled. It gives her a sense of community. As she wages this daily battle, we will walk by her side until we find a cure.
