Living with diabetes is a pain. It’s 24/7, no weekends off. It has forced our family to understand the body in a way that most people never will. Ask anyone what the pancreas does–chances are he won’t have a clue. But we know. Beta cells in the pancreas produce insulin that moves sugar from food through the bloodstream and into cells, where it’s used as fuel. Basically, the pancreas helps process the energy that keeps us going.
But Emma’s pancreatic beta cells no longer work, so she has to inject herself with insulin to prompt her body to burn sugar. She must also count carbohydrates at every meal and exercise regularly to lower her blood sugar. If she is lax, the excess sugar in her system could eventually become toxic and cause complications like blindness, kidney disease, nerve damage, heart problems and even death.
My husband and I spent the first few days after the diagnosis at the hospital with Emma. The three of us were plunged into an intense course in biochemistry, physiology and nutrition. Emma fought tears as she asked the diabetes educator, “Will I die? Will I be able to have children?” The nurse answered frankly. “No, you won’t die if you take care of yourself. And yes, you can have children, but you will be a higher risk.” From there, we learned how food affects blood sugar, how mood swings can indicate sugar highs and lows, and the many kinds of insulin and how to mix them. We were scared and overwhelmed.
Emma just wanted to get on with life. Two days after she was diagnosed, she tried to give herself a shot. It hurt too much, so I did it for her, despite my churning stomach. The next day, she managed without me. On her first day back at school, she played in a lacrosse game. My husband and I watched from the sidelines, awed by her bravery and fearful that the vigorous exercise might lower her blood sugar so much she’d pass out. She didn’t, and that weekend she even went to a party–with a syringe of insulin and a sandwich in her purse.
I had a much harder time moving on. Like many mothers of newly diagnosed diabetic kids, I was in shock. Could I have prevented the disease? Why hadn’t I seen it coming? I was devastated that diabetes had stolen my daughter’s innocence. My heart ached so that I could not breathe at times. I prayed that it was all a mistake.
In the months that followed, my husband and I walked a fine line between letting our teenager live her life and watching her like a hawk. We packed her lunches so we could monitor what she ate. We posted notes on the front door reminding her not to leave home without her blood-sugar testing kit, insulin and snacks. We put bottles of soda in every car and tubes of icing in every backpack, briefcase and purse in case Emma “crashed” and needed a quick boost.
Slowly, diabetes has become part of our lives. Emma can talk about it now, if only with her closest friends. She is more assertive about what she needs–making sure the waiter brings her a diet soda, instead of a regular. I have stopped crying. And I am learning to back off.
“How’s Emma?” friends ask. Most days, she’s fine. But she can never go more than a few hours without thinking about her disease, and that gets old.
When Emma was diagnosed, one of her doctors predicted that my husband and I would be very different people in a year’s time. Amazingly, we are. We have refocused the energy we spent worrying to promoting awareness about juvenile diabetes and raising funds for research we believe will lead to better ways of managing the disease and, eventually, a cure.
This week, Emma starts using an insulin pump, a computerized delivery system that frees her from the regimen of scheduled meals and injections. Meanwhile, we still dream of the day when her doctor calls and says, “Emma, make an appointment for your cure.”
