Earlier this week, Beyond Type 1 posted an article, “I Can’t Sleep,” by Sara Jensen. In the article, Jensen describes the lack of sleep, stress, and ceaseless work that create Caregiver Anxiety. I’ve had every experience that Jensen describes, from a doctor admonishing me that my health is being negatively impacted due to stress to worrying that if I sleep through an alarm my child could die.
She writes, “I lay back down and I breathe in, I breathe out, my mind tells me I won’t be able to fall back asleep, and when I do, the alarm goes off again. It feels like I never closed my eyes at all,” which perfectly describes the mixture of sleepless exhaustion and stress parents of kids with T1D often experience.
At our house, some nights blur by in a flurry of insulin, alarms, juiceboxes, and more alarms.
Recently, I traveled for work, and during that week, Henry was being cared for by his father, and my mom, a nurse. This wasn’t my first time away from him after diagnosis, nor was I afraid. I knew he was in good hands. Yet, 1,806 miles away I woke about every two hours, suddenly, as though a giant animal had jumped on my chest, forcing out all my breath. But instead of an alarm or lights blaring, there was just the night. It was quiet. I looked at Henry’s BG on my phone, it was usually in range, and I’d go back to sleep.
After about the fourth night of waking up in a state of emergency when there was no emergency, I realized how profoundly T1D care impacts the most basic aspects of life: sleep, not sleep, food, and how I think about my son. But profoundly realizing something doesn’t change it. I woke up the same way the fifth, sixth, and seventh nights because I’d been waking up this way for two years– the same animal feeling, but I wasn’t afforded quiet to think about it– there was an obligation or almost emergency to contend with, asleep down the hall, in need of insulin or juice.
When Henry was diagnosed with T1D, what I didn’t know about type 1 could fill the stratosphere. For example, I didn’t know that I wouldn’t be able to sleep through the night for the next two years. Now I wonder if I ever will sleep through the night.
Before I left for work this morning it was blustery, while a few wild snowflakes dashed down. I checked my phone before the workday began, and I laughed when this image from FB popped up from three years ago.
I laughed because when I looked up from the screen, through the kitchen window I watched it snow on daffodils, but there was a time that I didn’t know what I didn’t know. Three years ago not a snowflake was in sight: eleven more months to live without T1D, to sleep through the night, to eat food without weighing it, without weighing so many vital daily decisions that have become necessarily mundane.
The thing about winter in the midwest is that snow turns to mud, turns to flower. It’s just a waiting game, like waiting for a blood sugar to rise or fall.