There’s a quip about the cure being worse than the disease. No need to tell me that at 2 a.m., when my child is keening with stomach pain. We’re in the wilderness now – trying a relatively new drug not tested on children, for rare tumors with no proven treatment path. My kid is filling up the bingo card of side effects. And each day, I am supposed to hand her the drug that does this.
My husband and I sit up with her for the next two hours, hoping that the cramping recedes quickly. Eventually, the pain passes and she is finally able to fall into a deep, restful sleep. I am wide awake. I’ve sent a message to her doctor. This is untenable for the long term. Any ideas?
Now that she is comfortable again, I am introspective. What am I becoming? I don’t sleep well anymore, even when a night is uninterrupted. I have copious notes, dates and times of this medicine, that reaction, what works, what didn’t. I’m on constant alert, vibrating with anxiety and now, caffeine. My stress hormones have cozied up to my menopause hormones, so every five minutes, I flash into a drippy sweat.
I’ve read every article and study I could find about the drug, the tumor, the side effects. After reading about one side effect treatment regimen, I asked the doctor if we couldn’t try a particular drug. Reading the same article, the doctor said sounds like it might be an option and wrote the prescription. Criminy, they realize that I only have a liberal arts degree, right?
But this is the speed of science. As quickly as one protocol gets established, four more options pop up. That’s a good thing, but it means everyone has to be read in, constantly.
While I consider myself a relatively intelligent person, I’m no genius and the fact that our role as parents in her care is so outsized, really freaks me out. It has served me well to stay in the moment, except in the moments after a crisis has passed. Groundless again. My brain doesn’t know whether to stay on high alert or to relax. I am afraid to relax, as if my tension were a shield against calamity.
I think about the beginner’s mind from Zen Buddhism. If I looked around me, with fresh eyes, at this very moment, what do I see? My daughter is sleeping well. As is Pete, our old tomcat, with his little snores on the floor, near my feet. Snow is falling outside, muffling the city sounds. I’m tired, but healthy. The house is warm and smells of coffee and last night’s stew. My husband is able to work from home after the long night. I explore this moment, writing here, grateful that I still can. Open your eyes. Breathe.
I was thinking about advice on recharging phone batteries. With lithium-ion batteries, the lifespan of the battery doubles if you partially charge and discharge the battery. Then there’s parasitic loading – when you are using an item while it’s charging. It can induce mini-cycles, causing part of the battery to deteriorate at a faster rate. The writer in me wants to wring a metaphor from it.
Being a caregiver or a parent can be like this. You have to keep going, no matter how low your battery is. The only protection against deterioration is finding the time when you are only charging. The moments between crises have to be more than just time when bad things aren’t happening. This is tricky – the space between shaking your fist at the sky and noticing how beautiful it is. Enjoying the buoyant, cool water just before you feel like you’re drowning.
So this morning, I practice. I fold laundry at the kitchen table and watch the snow fall. I listen to Dar Williams sing “After All”. You catch your breath and winter starts again…
…and the long night falls away.