My Uninspiring Diabetes Story

Years ago, when my daughter was first diagnosed with diabetes, I thought that I would like to write a book with her about that experience, about how scary it was at first, and about the tricks that we learned to make it easier and get us through. Diabetes was a shock, to say the least. I wasn’t really aware of it, as a phenomenon, before Bella was diagnosed. I mean, of course I’d heard of it, but I wouldn’t swear with absolute certainty that I knew what it was, or what it meant. It was just another of those diseases – something vague, in the way that other, equally life-transforming diseases, are still vague to me, like muscular dystrophy, or sickle cell anemia, or cystic fibrosis. My grandmother had had diabetes, at the end of her life, but to my mind, it was more a symptom of age than a disease in its own right. She also had rheumatoid arthritis, and hearing aids. All of those things seemed equally likely to happen to my 4-year-old daughter, which is to say, not at all likely to happen.

It was just the two of us when she was little, Bella and I. My parents had never been overly cautious, and my dad’s side of the family, in fact, had been under-ly cautious, if there is such a thing. I remember limping around for weeks in sixth grade with a badly sprained ankle after my cousin and I wrecked a motorcycle that we were riding together down the quarter-mile long, cliff-bordering driveway next to the Poudre River, with no parental supervision at all. Protip: if you are the passenger on a motorcycle, and the driver’s hat blows away, just let it go. But no doctors were involved then, or through the resulting weeks that left me sidelined from gym class. 

I was not at all like that with Bella. She was up to date on all shots and doctor’s appointments, and I consulted baby books and preschool development books with all the fervor of the first time single mom, who’d wanted a daughter for approximately the last 15 years. But I took ear infections and flu and strep throat in stride, and as a single mom, the inconvenience of having to ask Grandma to sit, or stay home and make my boss cranky probably took up more of my thoughts than I would care to admit as she battled what seemed to be a severe case of strep throat. 

She woke up sick one day with what seemed like the flu – vomiting, sore throat, generally not having fun. Having had the flu myself many times as a kid, we waited it out for a few days, and then went to the doctor, who gave us some antibiotics and a diagnosis of strep throat, and sent her home. In three days, she was still sick. We went back. They switched antibiotics. Two days later, she was no better. She couldn’t keep anything down, and as I looked at her, I realized with alarm that she’d begun to look like those pictures of the sorts of children you can ‘adopt’ from foreign countries, the ones that only 10 cents a day can feed.  I packed her into the car and drove her to the emergency room. No ambulance because we’d just been to the doctor two days ago. If it was life-threatening, wasn’t this the kind of thing they would have noticed? I thought she was having a reaction to the antibiotics. I’d never had strep throat. I thought it was the worst childhood illness ever. 

At the emergency room, they dashed her right to the back. They drew her blood, and said, “How long has she had diabetes?” I thought they were confused. They packed us up and sent us to Children’s Hospital and we learned about diabetes. I get squeamish at needles. I thought a home care nurse would probably have to come every day, because obviously I didn’t do things like draw blood or give shots. I majored in English. But in a week, I was checking her sugar six times a day and giving shots with each meal and bedtime. All the nurses were nice, and they were comforting, and it was not as bad as we had thought. We made a drawing of Bella so that she could use it to pick her next injection site. We made diabetic ‘puppy chow’ (cornstarch, Rice Chex, peanut butter, powdered sugar) to avoid nighttime lows. We coped. And we knew that a cure was right around the corner.

Now she’s 13, and a cure is still right around the corner. They can transplant islet cells into your pancreas now. They have created a continuous glucose monitor-insulin pump set that is essentially a closed loop, so that all you would have to do is remember to keep it filled with insulin. Then there are all the ways to cope with diabetes. They have blood sugar sniffing dogs, they have diabetes camp to meet other kids your age who have diabetes. The list goes on. But Bella hasn’t seen any of it. Well, she’s seen camp, but only once, because here in Colorado, they only offer guaranteed financial help once. They tell you that you can lower the cost through fundraising, but I couldn’t sell enough Girl Scout cookies to get to Girl Scout camp as a kid, and nothing has changed since then on that front. One thing I never thought, when we started this journey, was that if a cure was found, if there were great coping strategies to deal, that we’d be left out. Our insurance won’t even cover the best test strips, the kind that take less blood, without a fight now. 

I thought that the hard part was learning how to deal with diabetes, and how to someday beat it, but it turns out the hard part is that it’s a fight. It’s a constant fight that never ends, and you’re always underprepared. You fight your kid, because the reality sinks in around age 11 that she’s not going to be done with finger sticks, or having to wear a cyborg implement that the substitute teacher will insist is an MP3 player, or random shooting pain in the night from a surprise injection any time soon. You fight with the insurance because of all the things they drag their feet at covering, and the school because they don’t always follow the doctor’s orders, and most of them really wish that you would just come and do all the things, and the world because if there is a cure, even a potential cure, why isn’t your kid first in line, and yourself, because you can’t make that happen, and you can’t always dash over to school if you work an hour away, and all the other diabetes parents have rearranged their lives to make that happen, at least the good ones, the ones with blogs, and diabetes dogs, the ones who send their kids to camp. It turns out that diabetes is just a way to magnify your own failure. And the sad thing is, this isn’t even the only chronic illness you’ll experience. Husbands get sick. Parents get sick. You will get sick. You thought it was a war you could win, but it was just a series of battles in a larger whole, and you’re not sure you’re on the winning side. 

So, I’m not going to write an inspiring story about diabetes. I’m really giving up hope that there is one to tell. I guess the best you can hope for is to make it through like anything, the same way you do with the 40,000 other problems of life. But I wish people would stop Walking for Diabetes and Biking for Diabetes, and pretending there’s some big happy future where we all find a cure. That makes it sound like a game you can win. But it’s not. It’s just a great big River of Suck, and it keeps running on and on and on.