I went to a movie by myself last night. It wasn’t the first time, but it’s been well over a decade since the last time.
It felt strange being there on my own—as if I was in some alternate timeline where I’m single and don’t have kids. But I’m not and I do. While I enjoyed the film immensely and I won’t be divulging any details beyond telling you that you absolutely should see Everything Everywhere All at Once because it’s incredible, I would’ve enjoyed it more had I been able to watch it with my wife Allison. The problem is that she’s at a hospital in San Francisco with our three-year-old daughter Em.
Em has severe cerebral palsy (CP), which is a muscle movement disorder. She has been having these episodes where her body twists, similar to the ones I wrote about back in December 2020, but less intense. Her arms stiffen, her head turns left, she twitches almost like a spasm, and, oddly enough, she laughs. The laughing made us less concerned since at least the episodes didn’t seem to be hurting her. Yet we decided that we should take a video and send it to her neurologist just in case.
We thought we’d get a message back saying the dosages on some of Em’s meds would need to be changed, especially since she’s grown a lot since the original dosages. But the next day her neurologist called Allison and said she wanted to admit Em for a repeat EEG and an overnight stay in the hospital. It was the twitches that prompted it. So Allison and Em made the trek down to San Francisco while I stayed home in Sonoma to watch my stepdaughter Sara.
We’re no strangers to hospitals. Em has had more than her fair share of time in the hospital. I’ve always been there with her every time. The entire first month of her life was spent in the neonatal intensive care unit (NICU) and I didn’t go back home until she did too. I was there the first time she had a surprise overnight EEG study. And I was there, or at least much closer to her, both times she’s had surgery.
But this time I couldn’t go and now I feel disconnected from her and Allison.
I’m in a liminal state. Here, but not here. Watching myself.
How did I end up here? What led me to this nanosecond in time?
The next day, after a long wait well into the afternoon, Em’s neurologist delivered the news. The team analyzed the EEG study results and found an unexpected curveball.
When Em did one of the twists, Allison would press a button on the EEG machine, and that would place a marker so the neurology team knew where to look. Yet the team saw other data that concerned them. When Em was sleeping, her brain activity was unusual. It looked as if her brain wanted to start a seizure but one never occurred.
After hours of analyzing and deliberating, they came to the conclusion that Em has ESES (electrical status epilepticus in sleep). It’s a rare type of epilepsy, making up somewhere between 0.2-0.5% of all childhood epilepsies, and is almost certainly caused by her brain injury at birth.
The diagnosis gave them a plan. Now Em needed to stay at the hospital to receive a treatment schedule of steroids during the day and valium at night. For three nights. Then come back and do it again next month. And the month after that. For four months.
What if I took school more seriously? What if I never learned to play a chord? What if I had stayed there instead of moving? What if I had moved somewhere else? What if I didn’t open my computer that night? What if we never went on that trip?
Our house has been quieter than it normally is. We usually have sound machines on at night so Em sleeps more soundly. I’ve grown accustomed to sleeping with one on in our master bedroom too. But I didn’t turn it on and I could hear the noise of the day lingering in my ears. I lay there alone with my thoughts and worries about Em and Allison and Sara and work and everything else that’s happening all at once. It’s too much.
What if I did everything differently? Would I still be here? Would now still be now?
Does any of this matter?
Of course, it matters. They’re what matters. You’re what matters. I’m what matters. We all matter.
I don’t know what happens next. I’ve tried to stop predicting the future. All I know is that it’s late and I’m not sure if this made any sense and I need to close my eyes. Then tomorrow I’ll welcome Allison and Em back home and we’ll embrace. And I’ll be a little more grateful for them and their love than I was a few days ago.
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Very moving. "I've tried to stop predicting the future" is the best way to live mindfully in the present. I learned this by my Father's bedside during what would turn out to be the last month of his life.
“What led me to this nanosecond in time?”
That’s always a fascinating question. All the choices we make and things we do lead us here. Even accidents, mishaps, and happy surprises. I think sometimes we need that space to get tapped back in.
Thanks for sharing.