Friday, July 5, 2019

My Heart

I am sitting in the cramped hospital room watching the nurse keep her eye on Sky's vitals. His heart rate keeps falling and setting off an alarm. She tells me not to worry, that the medications they used during his procedure just worked a little too well.

Procedure. I've always hated this word in reference to something being done to a human body subdued by anesthesia. All week Sky and I debated the line between surgery and procedure. Now that he's a teen, we don't agree on much, but we both agree that if cutting and repairing are involved, it should be called a surgery.

"Besides," he says with a grin, "I want to be able to tell people I had heart surgery this summer."

This is out-patient, 2 or 3 hours under general anesthesia in order to thread a catheter up to his heart and put a roadblock in the spare electrical pathway that keeps causing it to race. It doesn't matter to me what they call it; the pre-op process and the time spent waiting for updates from the surgical theater are more than enough to trigger memories of so many surgeries past. Ren and I get out long enough to get some overpriced, ridiculously-healthy, oddly-paired food at the "Asian" salad bar, but soon we are back and waiting in the room that suddenly seems cavernous now that Sky's bed has been rolled away with him in it.

When the nurse calls to tell us all is fine but that they have to cross into the left atrium, I thank her for the update and then try to focus on the tiny tennis ball high on the tiny TV screen. It's the first round of Wimbledon, and we don't get cable at home. Ren wants to know who called and what they wanted. I find it hard to explain in Japanese as my anxiety rises in my chest and settles in my throat. I know that crossing to the left increases the risk of dangerous clots and stroke.

The room has no windows, and I have to traverse a maze of hallways in order to reach one. The prospect of tracing my way back to the sunlight seems particularly daunting, especially since the hospital lobby is a dizzying combination of cows and farm theme and old cars. I'm at a loss as to how to keep my shit together. This surprises me given the vast experience I have with hospitals and surgeries. Ren barely takes his eyes from his iPad. Apparently his coping strategy works better for him than mine does for me.

And, then, suddenly, it's over and the doctor comes in and explains what he did before we're asked to wait for ten minutes in the hallway while they get Sky settled in his room. Twenty minutes later, we are still waiting, so I knock on the door. The nurse says that most parents don't handle seeing their kinds on breathing support well, but she knows how many surgeries we've been through with Ren and tells us we can come in if we're ok with it. I'm more ok sitting with Sky than I am in the hallway with strangers, so I tell her we'll be fine. Like Ren, Sky comes around slowly after anesthesia, and it takes his body even longer to deal with the various meds on-boarded during the surgery.

The lighting in the room sucks--our options are a massive, blinding fluorescent ceiling light or  a depressingly dark headboard light. We wait for Sky to wake in near darkness while tennis continues on the television. When he finally opens his eyes, he wants to know if it's done. He wants to get out of bed. He wants to watch something else on TV. He switches to National Geographic, some show about the Sphinx and the Pyramids. He's still trying to watch it when they come in to do an echocardiogram.

I often wonder if I am doing right by my kids, by Sky, who is my oldest, my practice run, my test case. Every phase he enters, every new challenge he faces, I am doing it with him for the first time. Most of the time, it doesn't go smoothly and I am convinced I am blowing it. But as I watch them track his heart on the screen, I am transported back to the first time I ever saw that heartbeat. Back to that moment fifteen years ago--before I had a baby, before I learned to doubt myself so deeply--when I was simply awed to see that life growing inside of me. Watching Sky's heart beat so perfectly on the screen I am flooded with gratitude--gratitude that I've been able to hold and to love and to protect and to help grow this heart in this boy.

It's his heart, but as I look at it in the darkened hospital room, I realize that it is my heart, too. It always has been.

My heart four days post-op.

Sunday, June 30, 2019

On Writing...

Thanks to a kind friend, I had the chance to participate in a writing workshop and think about my fiction writing for the first time in a really long time. The workshop combined illustration and creative writing, and by the end of the day, we had the starts to several stories and a pile of illustrations we'd drawn.

Two panels from a 4-panel comic
I've never been able to stand having my writing read aloud. When I wrote one-act plays in college, I had to leave the theater when my plays were being performed, and when I was asked to do a reading of my prize-winning short story, I could only manage to read the final paragraph to the expectant audience. Yesterday was no different. I suspect most everyone else read aloud over the course of the day, but I just couldn't do it. Seems we grow as people in some ways and not so much in others.

All of our writing was based on the prompts we were given, and we were told to start each story with "I am....." (which goes against every instinct I have). In the time allotted for each prompt, we could produce just a few paragraphs at most. Below is a sampling of what I wrote during the workshop.

The prompt was a photo with this sign and the phrase "I wish you wouldn't have mentioned that." This is what I wrote:
   I am driving through a desolate stretch of eastern Nebraska in February. The man I've picked up looks down as we pass a sign that says, "Hitchhikers may be escaped inmates."
   "Shit," I think to myself, "figures."
   "So, what's waiting for you in Seattle?" I ask, pretending not to see the sign or his reaction.
   He doesn't seem to hear me at first, but then comes to life. "My daughter."
   I'm silent then. I figure the questions tumbling through my head are ones I shouldn't ask. Maybe he doesn't know the answers to them, or, worse, maybe the answers are too hard to face. I weigh my options--if he's an escaped inmate, I should keep things light.
   "I have a daughter, too," I say finally, even though I am single and hate kids.
The prompt for this one was simply "substitute:"
I am sitting at the kitchen table late at night writing and rewriting an email to Mrs. M. Though she's been my son's teacher for weeks, it only now occurs to me that I need to reach out to her directly. The house is quiet, the kids long silenced by the deep sleep that follows the meltdowns and the chaos that come with dinner, and breakfast, and playtime, and homework, and just about every waking moment in a house with autism. 
The fridge hums quietly behind me, and I'm surprised to find I miss the drip, drip, drip of the faucet that kept me company for so many late nights the first five years of our lives in this house. Sometimes fixing things leads to more loss...
The prompt for this one was "stitches":
I am staring at the wall, my back to him so I don't have to think about the 100+ staples that look like a zipper holding him together from the base of his neck to the tip of his tailbone. If it came unzipped, would his insides spill out? I know the answer to this question, and yet, it plagues me. The human body isn't meant to be split open this way. When I turn, I can hardly see him across the room since the rented hospital bed sits pressed against and lower than the queen size bed we haven't shared for weeks now. The pattern of his breathing tells me he's awake, even though he's silent, eyes closed. 
It occurs to me that I need to learn something from all of these spine surgeries and the seemingly interminable post-op recoveries. But, mostly I've learned that I hate stitches and staples and drains, and I worry that my hate for those things is morphing into a hatred for him. 
The prompt for this one was "cars":
I am sitting in my driveway waiting for Jeff to get in. He needs a ride to town but thinks he might be too tall for my tiny car. I wonder why in the hell he's in Japan, then. I also wonder why I've left work and come to meet him when I could be on my bike riding away from him, from this town, from myself. Even now, I don't know how I ended up here in this small mountain village where everyone knows my name; knows my habits; knows what I bought at the grocery last week; probably knows what I ate for breakfast and even what I'll eat for dinner, though I don't yet know that myself, yet. 
Before the car that is too small for Jeff, I biked and bussed everywhere--no train in this forgotten hamlet. But, the bus is stressful on these mountain passes. On winding one-lane roads with no shoulder, it's easy to find yourself playing chicken with a bus. Much harder is backing your way down the hill...
A portrait of myself as grapes.

Needless to say, I didn't finish any of these stories, and I am not sure I will. Still, it was good to spend a day thinking about writing (though the drawing part was much harder). It reminded me of the ways in which putting things onto paper (or the screen) helps me process, even if it has nothing to do with what's happening, even if it's total fiction. As we head into a couple of months of surgeries and travel and who knows what else, I especially appreciate these reminders.

Here's a link to a future date of the workshop.  Hopefully you can catch it somewhere!