Henry got sick in February. I mean, we all did, fevers, aches, runny noses, coughs. The kids and I ended up testing positive for strep, but that might have been a secondary infection to whatever else was going on. We were sick. We did a round of antibiotics to deal with the strep. We got better, but it started a clock in my head.

Penny got really sick about seven months before she was diagnosed.

We don’t know everything about what causes the auto immune condition type 1 diabetes, but it seems to work like this. Genetic predisposition, known or unknown (you can be predisposed and not have any type 1 in your immediate family), triggered by a virus, turns on the immune system to fight the virus. Once the immune system gets turned on and starts producing these specific antibodies, it doesn’t turn off even after the virus is gone. These antibodies mistake the the islet or insulin producing cells of the pancreas and begin to destroy them, thus rendering the person insulin dependent. It doesn’t matter if you can get islet cells to regrow, or add new islet cells somehow. The body will continue to destroy them. You seem to need both, genetic predisposition and the trigger. This is a wild over simplification from a non medical person, but I think it gives you the gist. Type 1 is relatively rare, but having sibling or a parent with it, does increase your odds.

For the past four years, every time one of the kids got really sick, I started the clock. I increased vigilance. I started poking toes and checking ketones, paying close attention to appetite, thirst and frequency of urination. I knew we had the genetic predisposition. I was just waiting for that trigger.

About a month ago, Henry started wetting the bed. He started having rages, bigger and more unreachable than expected given his generally sunny disposition. I started checking for ketones in his urine. It always came up negative. It didn’t mean he didn’t have type 1, but it meant we still had time.

About a week ago, I got up the courage to check his blood sugar. I readied the meter and the lancet and snuck into his bedroom. I poked his toe. 380. I wiped another toe with an alcohol swab. 444. I recalibrated the meter. 368. Jim was working late in our home office. I stood in the doorway and told him Henry has type 1. I immediately reached out to the text chain I have had since Penny’s diagnosis, a group of moms with kiddos living with type 1, a place I knew I could curse and cry and begin to mourn.

Jim emailed our endocrinologist, expecting to hear from him in the morning. I gave Henry a very conservative dose of long acting insulin and set an alarm to test him every ninety minutes through the night. Imagine our surprise when our endo called at 1:00am asking us to go into the emergency room. We tested. 220. We woke him up and checked for ketones. Still negative. We politely declined and asked to go to the lab and see a pediatrician first thing in the morning. Many phone calls from the hospital and our endo later, we convinced them that five more hours was a reasonable risk to avoid a covid era ER visit and subsequent hospital stay. We slept. Kind of.

We had told Henry that he had type 1 in the middle of the night when we woke him up to check ketones, and all he wanted to do was tell Penny. Henry adores Penny, always has. You can see it on his face every time he looks at her. To him, she is the coolest, smartest, most fun person in the entire world. Sometimes the feeling is even mutual. She came in our room early the next morning for snuggles and Henry proudly declared that had type 1 beetes. Penny, in the dismissive tone reserved for older sisters, told him he definitely didn’t. Her eyes drifted to uncertainly to us, and we nodded in acknowledgment. They fell into each others arms, laughing so hard tears ran down their faces. Jim and I stared at each other in shock. I started to cry. They recognized immediately something it took me a while to grasp. They knew they would never be alone in facing this.

Next came the labs, and a dismissive pediatrician who happened to be on call and a dexcom delivery and a brave box from a dear friend. Then the phone calls and the messages and words of support and the crying, but I’ll save that for another day. Hug your babies. Keep your family close.

Still not sure how today ends.