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!

Wednesday, June 26, 2019

The Heart, It Races

"Let me start with the takeaways," the pediatric electrophysiologist began. "There are two big ones. First, this won't kill you. Second, it won't go away unless we intervene."

Supraventrical tachycardia (SVT). Thirteen months (and just 81 hours after I got home from a work trip to Japan), we finally had an answer to the inexplicable heart thing that has been plaguing Sky for just over a year. Getting to the diagnosis was a combination of frustrating waits and missed symptoms and a last-minute act of, shall we say, well-timed disobedience.

SVT reading
It started early last summer when Sky came in from basketball on the driveway reporting that his heart fluttered and he felt like he was going to pass out. Because the symptoms coincided with a significant growth spurt, we figured that it was a one-off. When he reported similar symptoms once or twice a month for the next couple of months, I reached out to our pediatrician, and she ordered an EKG. The normal report was both reassuring and frustrating, especially for Sky, who wanted to know why his heart felt so funny. Two different pediatricians told us that his symptoms most likely resulted from his rapid growth and dehydration.

In the spring, when we were in to see Ren's cardiologist (that's a whole other story, btw), I described Sky's symptoms and asked what he would advise. He suggested an echocardiogram and a 24-hour Holter monitor. We followed through with both, and both came back essentially normal. By now, Sky was getting anxious. He worries about a lot of stuff a lot of the time, and the unilluminating test results made him feel bad.

You've probably noticed that life tends to be chaotic around here, so three "normal" test results sent Sky's heart issues to the bottom of my concern list. He continued to get light-headed easily and to have heart "spasms" from time to time, but since we'd been multiply assured that there was nothing wrong, I wasn't sure what else to do. Then, the week before I left for a 12-day work trip to Japan, Sky started tennis camp. On each of the four days, he had increasingly concerning issues with his heart, ending on the fourth day (a Thursday) with him going temporarily blind. I contacted our pediatrician and Ren's cardiologist early Friday morning. By the end of the day, Sky had a do-not-exercise restriction.

Some problems seem unsolvable, especially when it's Friday at 4 pm and you're leaving before dawn the following Monday and you're not established with a pediatric cardiologist and the local pediatrician has just left the practice. Fortunately, we have a pediatrician back in Indiana who sees the kids once a year and who is amazing in all sorts of ways, not the least of which is that she doggedly pursued Ren's cardiologist until we had a plan and means to get Sky hooked up to a 30-day monitor. It took a few middle-of-the-night phone calls from Japan (sorry, travel mates, I know I was being a bit loud), but we got Sky set up with both the monitor and someone specializing in pediatrics to keep an eye on its readings.

Summer in Tohoku--my job's pretty awesome (#breathedeep)
By the time I got home in the early morning hours of Saturday, Sky had been wearing the monitor for four days and off of sports and exercise for two weeks. He was frustrated because he hadn't been cleared to go back to tennis (we were told the doc wanted a baseline before he did), and he was worried we were wasting time and money on the monitor (this is a huge thing for him, despite our constant reassurances). Given the haphazard way I'd strung together the medical coverage for this, I imagined that the lack of response from the doctor had much to do with the fact that Sky wasn't actually anyone's cardiology patient.

So, I made a decision that would turn out to be either brilliant or catastrophic (did I mention how HARD parenting is?)--I sent him to tennis on Monday morning with strict instructions to stop and record anything amiss. I also sent messages to both the pediatrician and Ren's cardiologist letting them know I'd done this. Sky and I both knew the weird heart thing wasn't going to happen as long as he was sitting around chatting with friends on Discord.

I dropped Sky off at 9, and by 11 am, I had a call from Ren's cardiologist's office telling me that he needed to stop whatever he was doing immediately. Within an hour, we had an appointment scheduled with the pediatric cardiology specialist for the next morning (an appointment I'd been told wouldn't be able to happen until August at the earliest when I called from Japan).

Summer Midwestern Sky (#breathedeep)
So 13 months and 81 hours later, we finally know why Sky's heart "spasms." We are trying to wrap our heads around how we got here and exploring the various available interventions; fortunately, the condition seems highly manageable. Sky is back at tennis this morning, and I am reminded of my mantras: "Breathe deep," and, perhaps less inspiring but still extremely helpful, "Everything will be ok."

After the appointment, I took Sky for pizza and a little shopping. Not sure Taro approves of Sky's purchases, but I think if you can match the ties to the eyes, you're doing something right!

Taro is not amused.