This could be a tale of making lemonade out of lemons, or one of overcoming adversity and meeting triumph in the end. It’s neither. This is a reflection on something that happened to my daughter, to me, and to the rest of my family in 2000, which now sounds like a very long time ago. Yet those events have renewed currency due to another challenging event that happened just the weekend before I wrote this essay.
Most parents worry about their children. Some concerns are exaggerated, particularly if you’re a nervous person, and tend to be fearful. I confess to being both. My first child, my son, caused me a great deal of needless anxiety simply because I had no idea how sturdy a child really is.
My daughter, Cara, and the subject of this piece, didn’t worry me nearly as much. Cara was a pretty self-sufficient kid. She didn’t mind spending time by herself, and always found a way to keep herself occupied. Any sort of physical activity delighted her, maybe because she was small, wiry, and a fast runner.
When Cara was about three, her growth rate slowed, and she was soon at the bottom of the growth curve. We didn’t think much of it. There were petite people in her bloodline, on both sides of the family. She still had lot of energy and was the occasional terror of her daycare group.
By the time she turned four, other changes came to light. She lost ground with vocabulary, became confused about the correct use of pronouns, occasionally confusing “she” with “he.” She went on doing everything she’d always done before, except with a bit less enthusiasm.
In the late winter of 2000, disturbing behavior changes were impossible to ignore. She was pale, irritable, and had less and less energy. Her lack of appetite was troubling. Her weight loss was the worst of all.
She ran a low-grade fever. At the age of five, she wet the bed. She also needed to go the bathroom more and more often. My husband and I put two and two together and suspected the onset of diabetes. By the time we came to this awful realization, Cara was so sick that the pediatrician said getting her to the hospital in an ambulance would be faster than our driving her. We drove her anyway—I’m something of a demon behind the wheel when needs must.
She was given a bed in the emergency room, hooked up to two sets of IV’s, as the staff tried to correct her out-of-control blood sugar and the damage it was doing to her.
Later that night she went into a coma and was moved to the Intensive Care Unit. At the foot of her bed was a machine monitoring everything about her, and watching the machine was a nurse who couldn’t leave the room until another came to relieve him. Sometime between three and four in the morning, Cara came out of the coma and announced that she needed to use the bathroom.
When I saw her in the morning, she was watching cartoons on the television, and having trouble using the plastic knife and fork to eat breakfast with, because her arms were taped to Styrofoam boards to keep all the IV tubing in place. I helped her with her food, and she said she felt better. But this was a different child from the one admitted to the hospital the evening before. She was older, as if some chapter of her youth had come and gone in those few hours.
The world we entered then was one ruled by numbers: units of insulin per grams of carbohydrates; blood glucose levels, which had to be checked six to seven times a day, in a painful process of sticking one of Cara’s fingertips with an automatic needle. It was a world of mixing this many units of long-acting insulin with this many of short-acting insulin in the same syringe; calculating when the last dose had been given; how long ago she had eaten; when she had to eat next, often when she wasn’t even hungry.
It was also a world suffused with a dire blend of anxiety and terror. What if I mixed the syringe incorrectly? What if an overdose of insulin brought on a seizure? What if I didn’t catch the fact that her blood sugars were steadily rising, landing her in the hospital yet again? I had to talk myself down off of all these ledges on a daily basis, sometimes several times a day.
Cara was a good sport about the whole thing. She understood the necessity of sitting still for her “tummy pokes,” what we came to call her twice daily injections, although she despised them. She was less happy with the total invasion of her privacy in the form of her mother asking her every three hours to check her blood sugar.
It’s one thing to realize your child is different from everyone else’s, it’s another to have other parents drive that message home with their pitying looks that say so clearly, “Thank God that’s not my kid.” It’s one thing to take control of a situation that can tip sideways at any moment, it’s quite another to have a school district tell you they won’t let your child test her blood sugar at school because of the risk of contamination—a position that resulted in our filing a complaint with the U.S. Department of Education and winning.
There are times when I despaired. What would Cara’s life be like if we didn’t control her blood sugar well enough? Would she go blind by the time she was thirty? Would she lose kidney function? These nightmares kept me going, always revising her insulin and food regimen so that the numbers stayed in a healthy range.
Then we hit another road bump. Cara had a seizure when she was sixteen. I was able to bring her out of it by administering the emergency syringe full of glucose deep into her thigh muscle as I’d been trained to do. Though terrifying, the event had no lasting effects. Cara went off to college, majored in bio-chemistry, and got a job in a lab testing blood samples for a nationwide hemophilia study. She took over complete management of her condition, aided a great deal by using an insulin infusion pump which did away with the need for daily shots.
She’s twenty-three, and her control is excellent, so good that we don’t fear for any of the terrible long-term complications that so many diabetics suffer from. But she’s never really safe, not until a cure is found, and we all accept that many more years of research are needed before that becomes a reality.
Last weekend, her boyfriend Kyle called us to say Cara had had another seizure and was on her way to the hospital. She’d come out of it on her own just fine, which was a good thing, because he couldn’t find her emergency syringe. She’d had the flu the weekend before, recovered, but didn’t replace her fluids well enough, so when she woke up in the morning, feeling that her blood sugar was tanking, the glucose tabs she ate weren’t enough to get them back up before she hit the floor. We figure that being dehydrated augmented the effect of the insulin — concentrating it, if you will. In any case, she again made a full recovery.
Sometimes I return to those first days, when people would say to me, “I don’t know how you do it.” Then, as now, I’m dumbstruck by this comment, because I would do anything to save my child’s life. And I bet you would, too.