Remember last week? The post about catastrophic thinking?
Well here’s one for you.
In the darkness Monday night I sat up in bed, heart pounding. Why? Because I’d heard my twelve-year-old daughter waking to pee.
It was Will’s night-waking—two and a half years ago—that had convinced me and Bill that all wasn’t well.
Monday, I listened to my daughter padding down the hall toward the bathroom and I was sure we were about to be a family whose entire fridge was stocked with insulin, whose kitchen was one big “diabetes drawer,” whose mother spent all her “free time” downloading meter data.
None of this felt easier when she came into the kitchen Tuesday afternoon and said, “I peed like six times at school today. I am SO thirsty. I think I need to check my levels.”
This happens every couple of months.
Twelve-year-old Aidan or her younger brother Quentin feel excessive thirst and seem to be urinating more frequently—textbook symptoms of T1D.
A child in the “normal” population has a 1 in 300-400 chance of developing T1D.
My kids’ chances are 1 in 20.
Not only do we know this, but researchers and clinicians can tell with a 90% accuracy rate if a person will develop type 1.
Different people have very different ideas about whether or not to test the siblings of kids with T1D to see if they will develop the disease.
My friend Anne waved a hand on my front porch and said, “I do NOT want to know.” My friend Sarah—who has her kids enrolled in TrialNet as I do and has them tested with an annual blood draw—said, “You just really want to know.”
Both these cute goofballs have annual blood tests to be sure they aren't that 1 in 20..
People argue that there are clinical trials you can enter to forestall onset of disease. People argue that you run less risk of an incident of ketoacidosis if you are aware that the disease is developing.
People argue that sitting by, waiting for the nascent disease to become full-blown sounds unbearable.
Last Tuesday when Aidan came into the kitchen guzzling water and asking to test her levels, I found myself reacting a little more strongly than usual.
Maybe because this threat, unlike most of my catastrophic thinking, has a firm foot in reality.
Maybe because I remember a mom saying that her son’s diagnosis wasn’t the worst day of her life, her second son’s diagnosis was.
“All right,” I said, moving across the kitchen to the “Diabetes Drawer.” I like to think I managed to sound perfectly blasé when I said, “Let’s test you up.”
Aidan made a face as I put a new lancet in one of the backup blood glucose meters. “Ooooh!” she said. “Yikes.”
“It won’t hurt,” I said dismissively, even though we both knew it would, a little. I secured the little cap and cocked the spring-loaded mechanism as Will does ten times a day. “It’s no big deal,” I said as I demonstrated, pressing the tool to my third finger and pushing the button.
A burning electrical stab radiated through my hand. I tightened my stomach and yanked the finger away even as I kept my expression neutral.
Aidan, who hadn’t sensed my pain, said, “I just want to test for ketones. Can I do that instead?”
“Sure. Good idea,” I said—thinking, as I pressed my thumb hard on the fingertip to make the throbbing subside, that it was one of the best ideas I’d heard in a while.
I handed her the canister of the strips that measured ketones in urine, another way to see if her pancreas had stopped functioning the way it should.
The toilet flushed. My daughter emerged with the strip held high. “Normal!” she called.
She headed toward the TV she would turn on. Today, I wouldn’t say, “Uh-uh! No way! Turn that off until you’re done with homework!”
The afternoon suddenly felt like a vacation. Like summer. Like I had been given a much larger reprieve than I would ever want my kid to have to feel.
From across the room my daughter grinned at me and flopped back onto the couch and said, “I’m all good.”
