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.
