No Shame, No Blame, T1D Diagnosis Game
On Tuesday, March 17, 2015, at 10:00 p.m., my husband and I walked into the emergency room with our kindergartner and announced that his blood sugar was over 600. We knew because we tested him at home.
Finn, thumb in mouth, stared with wide, glassy eyes, trying to figure out if we were scared. Yes, we were. We had been for weeks, but the power of knowing was starting to rise. I smiled, told him we figured out why he had been wetting the bed, and it was not his fault. He smiled, too, a wide, relieved grin. But I’ll back up, because this is a story about advocacy, awareness, and the rejection of blame and shame.
In January, Finn had suddenly started wetting the bed and was mortified. Odd, because he had been potty trained for years, but kindergarten was a big deal and kids adapt to new stressors in different ways. He was also insatiably hungry and thirsty. Okay, growth spurt. By February, he was thinner than usual and so tired. Not a problem; he had always been skinny, and kindergarten was a long day for a 5-year-old. But I was uneasy. Something wasn’t right, I felt it in my gut. I scheduled a well-child exam, told myself I’d feel better after that. All parents worry.
While waiting to see the nurse practitioner, I posted a funny picture of my boys not happy to be wearing hospital gowns. I mentioned discreetly that Finn had been wetting the bed. I shared our concern that he weighed less than at his last well-child exam. (I regret not saying, “I made this beautiful child from scratch and something is broken! Please help him!”) I was reassured that bedwetting was normal and shown his growth chart, which documented that he remained in the fiftieth percentile. Okay, he’s fine. What a relief. I’ll relax, resist helicoptering, and let the kid live. All clear.
Finn had a new school pick-up routine of stopping at three water fountains on the way to the front door. So silly. When spring wrestling began in March, he couldn’t get through practice without multiple bathroom and water breaks. Those little guys and their short attention spans, right? Then he asked to go home at the break. Maybe we should take him out of wrestling, the joy is gone.
The first tournament was a two-hour drive. We stopped five times so Finn could pee. He finished a water bottle, sports drink, juice, and chocolate milk. No wonder the kid was peeing all the time!
This part will break me if I linger in the memory. Finn did not want to wrestle. He was weepy and miserable. He had been up since five and was just tired, right? But we came all this way, so we pushed him to get on the mat. Okay: we made him. He had no strength and no energy. A few minutes later, I went full Mama Bear and stopped the match because he was sobbing, being flopped around the mat, and asking for a water break. I have video of that match that I will never watch. He was so weak. What was happening? I was out of excuses.
Finn slept with us (again) that night and wet the bed five times. We were all laying on towels by morning. Three days later when I picked him up from school, he was crying but still stopped at every fountain. He said his stomach hurt. It was St. Patrick’s Day and he was wearing a mustache. I would wear the same green shirt for the next three days.
We got home and he ate, drank, and fell asleep. I watched him wet himself. I woke him up. He used the bathroom, drank water, used the bathroom, and went back to sleep. He wet the bed immediately. We changed his sheets, he used the bathroom, drank water, and fell back to sleep. Repeat. Finn cried and said he was so sorry he kept peeing the bed. He stared at me like a desperate man in the desert and begged for a glass of water “even though” he just peed the bed. His lips were dry. His eyes were sunken. He looked like he was dying.
Like someone flipped the light on, I looked at Finn again with total clarity. My baby had Type 1 diabetes. I’d had gestational diabetes, and now I suddenly remembered “excessive thirst” and “frequent urination” from a symptom list. I dug out my old meter and long-expired test strips, and tested my blood sugar: 98. Then my husband’s: 96.
Then Finn’s: too high to register.
It was only at the hospital that we learned the actual number. Finn’s blood sugar was then at 811. The doctor, shocked that we diagnosed him at home, and that he was not in DKA (diabetic ketoacidosis), said I had saved my child’s life, and that if we hadn’t rushed in right then, our story would have been very different by morning. I instantly bypassed denial, anger, bargaining, and depression, and jumped straight to acceptance — because Finn was still watching to see if he should be scared. (“No, love, you don’t need to be scared, we’ll carry that part.”)
You know the rest. Thousands of needles. Grief. Fear. Chasing balance. Hyper-vigilance. Exhaustion. Losing. Winning. Resilience. Adaptation. But the absence of shame and blame. Maya Angelou said, “Do the best you can until you know better. Then when you know better, do better.” Diabetes is not my fault. Or yours. Or the nurse practitioner from that well-child exam. T1D is a freight train. There is no prevention and no cure. What we can stop is the eventual tragedy of a missed diagnosis. We can turn ordinary people into activists.
Advocacy matters. Awareness saves lives. Share symptoms, promote campaigns, tell your story. Tell someone else’s story. Shout it in all caps. Be the expert. In a moment of despair, your words will come back to a mother who just might have a dusty meter in a cluttered closet. She’ll test her child’s blood sugar instead of waiting for morning. And you, like me, will get to save a life.
Read How Clever Do You Have to Be to Raise a Child by Johanne Home.