It all started when Bisi drank all our profits at a Sunday afternoon lemonade stand on Block Island.
Well, it had really started a while before that (weeks, months, or even years—we're not sure), but the lemonade stand is when it became inescapably obvious that something was wrong. Bisi must have chugged four or five cups of lemonade, and then had to go pee almost as many times behind our car parked along the side of the road. “What’s happening to me??” she asked us—not in an upset way, but genuinely curious about why her body was acting so strangely. The next morning I took her to the island clinic, and she received the diagnosis that (after some night-time internet research) we were both dreading and expecting—type 1 diabetes.
For five days, she had been peeing and drinking way more than normal. At first we thought it was because she was swimming in a chlorinated pool two or three times a day at summer camp. “Have you been drinking the pool water, Bisi?” “Yes, but I’ll stop.” I’d noticed that she’d lost some weight, but again I attributed it to summer camp and all the running around she was doing there.
A few months before that, her need for sugar seemed to become more urgent. She started complaining that blueberries and strawberries, which she’d always loved, were too sour. Once she was diagnosed and on insulin, her taste for sugar went back to normal.
For at least a couple of years before that, her mood seemed heavily dependent on food. We’d always keep some dry cereal by our bed so that when she came in in the morning, growling with crankiness, we could hand her something she could eat to improve her mood. I’d always mention it to her pediatrician at her annual visits, asking why Bisi’s mood seemed so much more affected by food than her older brother’s did. The doctor always said it was just her personality—which may be true, and made some sense to me, since her father, Mark, used to be the same way.
I used to keep a granola bar in the car for when he would get hungry and cranky, and we both remember clearly an off season trip to Prince Edward’s Island, where we drove half an hour to a town expecting to find a restaurant open for a late lunch but instead found everything closed. Mark was so desperate for food that he had me pull over so he could gobble down some pickles we had in the trunk; a little bit later, we pulled over again so he could pick and eat an apple from a roadside tree.
Since Bisi’s diagnosis, all of the doctors and nurses I’ve talked to—except for one—have said there’s no connection between her food-related mood swings and the onset of diabetes. And yet in the months before her diagnosis these mood swings around meal times had seemed to grow worse. Mark and I are still recovering from Bisi’s sixth birthday party, a couple months before her diagnosis, where we forgot to give her a snack before the party started, and we and the six-year-old guests watched Bisi transform before our eyes into her own version of Natalie Portman’s Black Swan, her face paint smeared all over her face by tears and tantruming. Yet since her diagnosis, her mood seems much more even. My (totally unscientific and not backed up by doctors) hunch is that Bisi’s blood sugar was spiking and dropping long before her diagnosis, though this goes against the conventional wisdom, that type 1 diabetes tends to come on very suddenly.
At our Monday morning visit to the Block Island clinic, the diagnosis process was simple—they tested her urine and found sugar in it; and they tested her blood, and found that her glucose level was near 500—about five times what a normal reading should be. In a daze (I was in a daze; Bisi was focused on the fact that her vacation was being interrupted), she and I took the next ferry back to the mainland, leaving her brother Jamie with my mother. Mark picked us up, and we headed to Children’s Hospital in Boston. More on that later.
It’s now been about two months since her diagnosis. We have learned a ton during that time, and parts of our lives are starkly different from what they were. Many of the changes revolve around food—what Bisi eats, how we cook, how we all think about food now. My plan is for this to be a diary of Bisi’s first year with diabetes, but focused on the food aspect of this new reality of ours. It’s not a journey that any of us would have chosen, but now that we’re on it, we’re trying to get our heads around it as best we can. I hope that this diary will help that process along.