March 15, 2021
This day marks eight years since my daughter Audrey was diagnosed with Type 1 Diabetes. Each year, I remember that day with a blog post. It’s a bittersweet day. Bitter because Audrey has been living with a chronic illness for eight years. Sweet because Audrey has been living (with a chronic illness) for eight years.
In those first few weeks and months after her diagnosis, I couldn’t take my eyes off of her. That she could be taken from me pulsed through me like a racing heartbeat, galloping, galloping, galloping. I couldn’t catch my breath. I couldn’t eat because my throat was dry. I couldn’t cry because my eyes were dry. I was a desert, dry as bleached bone.
It took me a long time to cry. (It took Audrey longer.)
Eight years later, I still miss before.
Anne Lamott and many other smart and spiritual people have written and spoken some variation of the following:
Forgiveness is letting go of the wish that things had been different.
I believe it, but Type 1 Diabetes is tricky. There’s no one, no thing to forgive. You know how when something goes wrong, you ponder each step to figure out where you fucked up? Say you pull a bunch of light clothes from the washer and they are tie-dyed in blue ink because you didn’t check the pockets of your husband’s shorts? How first you’re so mad at him, and you mutter about how it’s not your job to check all the pockets. How you hold up your favorite pink shirt and realize there’s nothing you can do to save it. How you smear it with stain stick and berate yourself. How you go back in time and check the pocket. If only I’d checked the pocket. If only.
Well, you try to do this with a diagnosis of a chronic illness too. Except there’s no juncture where a different action on your part would have put a kink in this thing. You are reminded again and again and again there is nothing you could have done–and while it seems like this would be a relief, it only confirms your ineptitude. When there’s no one and no thing to blame, who the hell do you forgive?
And yet. Crocuses and snow drops and daffodils have pushed their way through the cold winter earth to magnanimously burst open and litter color upon the dull gray landscape. The natural world. If I train my eyes out there. If I spend a minute or two every watching the red shouldered hawks rebuild their nest, watching it grow from a storm-ravaged shell into a wide shelter. If I put my windbreaker on and take a walk, I remember what I know.
We don’t get to go back. There isn’t a portal through which I can crawl into before. And I wouldn’t if I could. Because what’s at stake is NOW.
And right now it’s been eight years. 2920 days. 70,080 hours. 4,204,800 minutes.
When you start measuring time in minutes, you put yourself in a position to be gobsmacked by the numbers. So today, I want to honor all the minutes, grief and wonder, despair and grace alike. Each one of those minutes a gift–even the ones we wasted (we waste so many). The abundance–4,204,800 of them–a shock and a reminder.
Now is the time to celebrate.
Each year, I post some version of the story. Here it is:
I smelled it.
Every time I got close to Audrey I smelled fingernail polish remover.
I smelled it for a week, on her breath and on her skin. I sniffed her for a week while she slept—and she was sleeping a lot—while she ate, while she watched TV. Every time she turned around, there I was with my nose in her hair, or trying to get a whiff of her breath.
Something was wrong.
There were other symptoms, sure. She was dropping baby fat which could be explained away by her age—14. Maybe she was hormonal. Maybe her body was changing. Maybe things were shifting as she grew taller. She ate strange things like Frosted Flakes and Snickers bars, and she started gluting soda and lots and lots and lots of water. She peed all the time.
Of course, I attributed the peeing to the water drinking and I attributed the water drinking to the weight loss—I thought it was a strategy, one I had used my entire life; drink more water in order to fill up, in order to eat less food.
It wasn’t a strategy.
The night before the diagnosis, the fingernail polish remover smell rippled around Audrey like a gas leak, and so I asked a others to smell Audrey’s breath and still no one smelled it. Normally the lack of accord would have consoled; however, it did not console because I COULD smell it; at this point, I could see it.
That night, I didn’t sleep because I was busy shuffling into Audrey’s room to smell her. Did I really smell it? Each time I leaned in for another sniff, I answered the question. Yes, I still smell it. In the morning before I woke her, I smelled her again, and knew I would have to do something. I woke her, took her to school, and then googled this: “Breath that smells like fingernail polish remover.”
And there it was–ketones. The smell of diabetes.
I called the pediatrician, related to the receptionist my Google sleuthing and that I suspected, but wasn’t sure, of course, that Audrey’s blood sugar might be high. “Could she have a glucose test,” I asked. She’d get back to me, she answered.
And then I took a walk. You see, there was a part of me that knew Audrey had diabetes and there was a part of me that refused to believe it. Disbelieving Bridgett went out for a nice walk and saw some things that seemed like omens–a couple of big crows, a sky smudged gray, and a tree full of starlings.
I walked for a bit, and soon my phone jangled and the receptionist encouraged me to retrieve Audrey from her 8th grade classroom and bring her in for a blood test.
At the clinic, a lab tech drew blood, and then Audrey and I went out for lunch before I dropped her off at school. Within ten minutes the doctor called.
“Audrey has diabetes,” he said.
“Her blood sugar is over 300,” he said.
“We will need to transfer her to Children’s hospital in St. Louis,” he said.
“Okay,” I answered.
That’s when he paused, “Bridgett,” he said, “go get Audrey right now, take her to the ER, so they can stabilize her for the ambulance ride to St. Louis.”
“Stabilize her.” he said.
I remained calm, but I repeated his words.
I said to my husband who was home for lunch. “Go get finished up at work while I pick Audrey up and take her to the hospital, so they can stabilize her.”
I called my parents, “I’m taking Audrey to the hospital. She has diabetes, and they need to stabilize her.”
I called the principal and told her, “Get Audrey out of class, I’m on my way to get her. We have to go to the hospital, so they can stabilize her.”
Stabilize her scared the shit out of me. Stabilize her is not something you want others to have to do to your daughter.
It took four hours to stabilize Audrey, and when they did, they rolled her into the back of an ambulance, and my husband and I got into our van and drove to St. Louis.
The nice people at children’s hospital told us we were lucky Audrey was diagnosed on a Friday because diabetes education was unavailable on Sundays. We’d have one extra day to learn about taking blood sugars and giving injections and dangerous lows and Diabetic Ketoacidosis. And when we left on Monday afternoon after finishing our education, we didn’t think we were lucky, we didn’t think we knew enough, and we were very worried all the time.
You know, most folks like a good illness narrative where the main characters learn big lessons about life, love, and living. I can’t say it doesn’t happen. In fact, I’m sure it does, but mostly diabetes stole Audrey’s childhood and robbed me of the handy delusion that I could keep her safe.
As delusions go—it was a hard one to lose.
Today it’s been eight years. We’ll mark it the way we always do—with story-telling. I tell Audrey’s story because stories connect us. We tell them to make sense of what we do not understand—and even when understanding remains elusive, we keep trying.
Such a beautiful and heart wrenching story. Dealing with a child’s chronic condition is exhausting. I talk from experience.
I do love Anne Lamott’s quote.
Thank you for sharing your story.
Thank you so much for reading and for commenting. That quote is one I have been returning to for years and years.
“what’s at stake is NOW.” Oh, my, don’t I know it. I love your writing, and I love you, too.
That goes both ways, of course.