Surprisingly Okay: Coronavirus Chronicles, Part 23

Medical Tidbits

Beth’s colleagues often ask how North’s doing at the beginning of phone calls and the other day I heard her answer, “Surprisingly okay” and for the most part, that’s true. Not much changed for a long while and we all adjusted to the new normal, as much as we still want the seizures and other symptoms to end.

The long-awaited urology appointment was the last Monday of September and it was kind of a bust. The doctor went over the results of the spinal MRI, noted there was no compression on the urethra contributing to North’s difficulty urinating and said she’d see North again in three months if nothing changed. We were all disappointed by the lack of a treatment plan. In the interim, though, Beth got a new diagnostic MRI scheduled, this time a brain MRI with a spinal tap. It’s happening later this week.

Then two days later, in dual setbacks, North was diagnosed with a second UTI and dropped a pasta sauce jar on their bare foot and bruised it badly. They were back to using the wheelchair to get around the house for a day or two. We got their foot x-rayed, but it was not broken, so their physical therapist gave them some exercises for it. It’s still bothering them, but it seems to be getting better.

Scholastic Snippets

On the upside, North’s interim grades (for the midpoint of the first quarter) were good, all As and Bs. This was a relief as the quarter got off to a rough start because they missed a lot of class, due to being in the hospital, and had trouble keeping up.

Noah’s doing well, too. His classes seem more challenging than last semester but he’s not overloaded with homework. His philosophy professor was so impressed with his work he suggested he consider majoring or minoring in the field, and Noah likes the class well enough to consider doing it. It would be a second minor, as he’s already declared one in computer science. He also attended an online informational session about study abroad programs and is seriously thinking of going to Australia next fall. He’s working as a video editor for several shows on ICTV and he’s also going to help a local filmmaker shoot and edit a play his neighbors are putting on, based on The Invention of Hugo Cabret. (It’s being filmed because there will be no live audience.) A friend of mine said he seems to be “flourishing” and he is, though of course I wish he could be back at school with his friends (and using the film studios that drew him to Ithaca in the first place).

An Outing

The first weekend in October we visited Benjamin Banneker Historical Park and Museum, mainly because it’s adjacent to a trail we intended to hike and we thought it might offer a wheelchair accessible entrance to the trail, but we detoured into the park and it ended up being an interesting side trip. An educational one, too, as it turned out neither of the kids had heard of Banneker, a very famous Marylander. We walked up to the reconstructed Banneker family cabin as a Brownie troop was taking a tour and as Beth, Noah, and North waited at a distance outside, I explored the vegetable and herb gardens.  When the Brownies had left, the park ranger offered to let us in the cabin and give us her talk about it. We took her up on it and then we browsed through the little museum nearby before tackling the trail.

Trolley Trail #9 trail, as you might guess from the name, is built on the track bed of an old trolley line. It’s part boardwalk, part asphalt, and goes through a wooded area along a creek. Noah flew his drone to a little waterfall and over the tree canopy. The trail is sloped, so the whole mile and a half down, knowing we’d have to push the wheelchair back up, I was fretting a little, wondering if we were biting off more than we could chew. But with three of us to take turns, it wasn’t as bad as I feared and it was a pretty walk.

Home Decorating

The following week we got our porch painted a new color. When we moved into this house in 2002, the house was tan with gray trim, or at least I thought it was gray. I learned just this week that everyone else in my family perceived it as a sort of olive green. It’s amazing the things you don’t know about the people you live with, I swear.  Nine years later we painted most of the trim dark green but left the porch floor, columns, and steps gray/green. My first idea this time around was to match the porch to the trim again by having it painted dark green, but on consideration, we decided if it wasn’t quite matched it would look funny so we went with a very pale green we thought would complement the darker green. I think I like it. It reflects more light into the living room, which is nice, but it also shows dirt more. I am trying not to let the fact that we painted at this exact moment because we were cited by the city for peeling paint take the pleasure out of this little makeover.

Once the porch was painted we started decorating it and the lawn for Halloween, and if you know my family in person or through this blog, you know that’s cheering. We don’t have everything out yet, but we’ve made a good start. We all bought one new item this year and mine was the charming fellow in the third picture. I picked him because he looks like he’s wearing a plague mask and that seemed just perfect for 2020. I even violated my own no-more-Halloween-decorations-that-require-batteries to buy him.

In other seasonal news, this weekend we made pumpkin ravioli from scratch. I roasted two little pumpkins and made the filling and a pumpkin-walnut-sage sauce to go on top. Beth rolled out the dough in Noah’s pasta machine and he used the hand tools to fashion the ravioli out of the sheets. It was quite a project, but the results were delicious.

Visitation Day

Today was Columbus Day, or Dia de la Raza, or Indigenous People’s Day—take your pick. In normal times in our school district, parents are invited to observe their kids’ classes on this day (because a lot of parents have it off but the schools are still open). At some schools it’s called Visitation Day. I’ve always enjoyed watching the kids’ classes and the name is pretty amusing, too. It’s as if we’ve been invited to watch a séance.

This year there was no notification from the school about being invited to watch your kids’ classes on Zoom, but I know a lot of parents of younger kids are doing it every day and nothing was stopping us, so we decided to observe two of North’s classes—English and yoga. We chose English because it was kind of unorganized for a while when the teacher quit and we wanted to see if the sub had got her footing yet. I’ve been curious about yoga because North usually does it in their room and we’ve never seen or heard little bits of it, the way I have with most of their other classes.

On the morning of Visitation Day, North woke up with a new symptom. Their right hand was clenched in a loose fist and they were unable to open it. My first thought went to the two complex migraines North’s had that left their hands and feet paralyzed but this was just one hand and the affected hand was not cold to the touch the way their paralyzed extremities in past episodes.

This was discouraging, but we carried on with the day. English started at nine and at the beginning of class, the teacher instructed the class to read “The Lottery,” annotate it, and write a paragraph about it. She gave them thirty-five minutes to complete this task and said she’d take questions at that point. I was a little disappointed in this lesson plan because it seemed like discussion would be a better use of  scarce and precious class time (each class has two one-hour slots a week, if the teachers use all their allotted time). The reading and writing could have been done before or after class, as homework.

Anyway, there wasn’t much to watch, so while North worked I read the paper, checked my email and some blogs I read regularly, and eventually since it was an English class, picked up Beloved, which my book club will be discussing on Zoom later this week.  At 9:40, the class reconvened. There were no student questions so the teacher asked a few, mostly about setting, and then just as things could have gotten interesting, she dismissed them to finish other work. North took an online grammar quiz and aced it. And then class was over. The discussion of “The Lottery” took a little over five minutes of class time. The whole experience made me glad North had already read this excellent story in middle school and this wasn’t their whole exposure to it.

Since we watched so little of English, I asked North if we could watch sculpture but they were insistent the agreement was two classes, so I didn’t push it. I did come over to hold their head up during at least two seizures, and I saw the teacher holding up a polyhedron that seemed to be made of folded paper, but North was wearing their headset so I don’t know what she was saying about it. I’m guessing North might be making something similar some time. Sculpture wrapped up after twenty-five minutes.

Yoga started at twelve-thirty. The teacher showed the class a yoga video and had them follow along. The sequence started with tabletop and included (not in this order and with most poses repeated) cobra, extended side angle, lunge, plank, warrior one, and warrior two, ending with corpse pose. North said it was physically harder than usual. Often the class meditates instead of or in addition to doing yoga poses. The class lasted about a half hour. Usually North attends this class in their room, on their bed, but after watching them do it on our bed, noticing how it was hard to balance in the standing positions on a bed, we are reconsidering this set up. During yoga class, North’s hand unfurled. After class I told them, “See. Yoga is good for you,” and they laughed, but I meant it. I think it could be good for them, physically and mentally.

After yoga, Beth and I went on a little date, our first since before covid, probably since our anniversary in January. We were nudged into the realization that we should do this by the fact that we always have a lunch date on Visitation Day in between spying on the kid(s)’ classes. It was rainy and in the high fifties, so not the most inviting weather for a picnic, but not forbidding either if we had shelter.

We left before North’s last class of the day, algebra, which met during a gap between Noah’s ethnomathematics and philosophy classes so we left him in charge of sitting in the living room and making sure North was in a comfortable position if they had a seizure.

We got arepas, plantains, and teqeños from Arepas Pues in Silver Spring (highly recommended if you’re local) and ate them in a pavilion in Wheaton Regional Park. Afterward we took a little walk through the woods and down to a pond. The path was scattered with the first of the season’s fallen leaves and pine needles. We picked up coffee and hot chocolate on the way home. It was nice. It was better than okay.

Plateau: Coronavirus Chronicles, Part 22

After North’s last ER visit almost three weeks ago, things have plateaued. This is both good and bad. The good part is that no new symptoms cropped up, North didn’t need any emergency medical care, they were able to start attending class regularly, and life calmed down. We got to have two more low-key weekends than we’d had in a while.  During the first one I wrote postcards to voters in Colorado and Noah and I started watching The Handmaid’s Tale, which I’ve been wanting to do for a long time.

That weekend we all went for a walk at Font Hill Wetland Park in Howard County, which is apparently famous for its dragonflies. We did see some, but not a remarkable number. We also saw a heron, a deer, a bunch of turtles, and some ducks. Noah took some drone footage and when North wanted to throw sticks into an algae-covered pond, he filmed them splashing into the water from overhead. I thought of all the time I spent when the kids were younger watching both of them throw sticks and rocks into water or through ice. Minus the drone (and the masks and the wheelchair), the scene could have taken place a decade ago. It felt sweetly nostalgic to me.

 

The bad part of the plateau is that North’s two main problems, the seizures and the bladder issues, remain unchanged. The seizures are more dangerous now that North’s walking is almost back to normal.* Now that they can walk, they want to and we want them to, but this means they sometimes they fall if they seize while standing. They know it’s going to happen just a fraction of a second before it does and luckily they’ve been trained in stage falls, so they can usually manage not to hit their head, but some days they fall several times. If they are going to stand for an extended period (while cooking for example) they put the walker behind them in the locked position so they can fall into it. Outside they usually use the wheelchair, for safety.

Tuesday of last week was a good day, or what passes for one these days. We finally got the sedated MRI scheduled. Beth had been calling and calling about this for almost a week and a half. It wasn’t clear why it was so difficult, but Urology didn’t want to see us until spinal compression causing the bladder difficulties was ruled out, so having it on the calendar was a breakthrough. The same day, we had our second telemedicine appointment with the psychologist who’s doing Cognitive Behavioral Therapy with North. She spoke to us together, then alone with North, then alone with me and Beth. She seemed to be hearing what we were saying, which has not always been this case on this journey, so that was nice. North, who’s been having trouble concentrating in class some days, due to their chronic pain and fatigue from the seizures, had a focused and efficient school day. Finally, we’ve been having some home repairs done—because in the midst of all this, we got cited by the city during the summer for peeling paint on our porch and some other issues—and the stucco people finished on Tuesday, two days earlier than planned, which means I could schedule the painters.

Of course, things couldn’t go well forever so the very next day when Beth, having secured the MRI, got an appointment with Urology, it was for early November. That’s a really long time from now, so we were discouraged all over again.

We had another relatively calm weekend, though we were of course saddened by Ruth Bader Ginsburg’s death and more than a little alarmed by the political implications. Honestly, I get more terrified about the election every day and this doesn’t help. I wrote postcards to voters in North Carolina and Pennsylvania and that helped a little. On Sunday, Noah painted part of the section of fence we had replaced after the car accident last spring (helping to continue to chip away at our home repair to-do list) and then we watched a couple episodes of The Handmaid’s Tale. We’re trying to finish it before our three-month Hulu subscription expires—we’re two-thirds of the way through the first season.  I’m enjoying it, but as I watch I do find my mind wandering to worst-case political scenarios, especially when we were at the part that covers the backstory of the Waterfords’ role in the coup that installs the theocracy.

On the positive side, that night Beth made a very satisfying late summer/early fall dinner of matzoh ball soup with fried green tomatoes and apple slices and then I watched the first half of the Emmys with Noah, while eating popcorn and writing more postcards, which was fun. Another nice thing about the weekend was that I slept in my own bed for the first time in about a month. North had been sleeping there with Beth, but we had them experiment with sleeping in their own bed Friday and Saturday night. They agreed, but wanted to return to sleeping with Beth for several nights after that. (On Thursday, with some encouragement from the psychologist, we all switched back to our own beds again, for good, I hope.)

Monday morning North went to Children’s for a covid test (#5 for them) which was required for their MRI on Wednesday. They continue not to have it. We all had to quarantine for two days after the test, which wasn’t a big change, though we did have to postpone some errands and Beth and I skipped our morning walks. The MRI itself went smoothly, though we don’t have the results yet. I was sad, but not surprised of course, to see the total of covid deaths in the U.S. hit 200,000 that day.

Wednesday was also North’s half-birthday, so we had cupcakes after dinner. This is a family tradition. There was a virtual Back to School Night for their school that night. The beginning of the evening was extremely glitchy, but eventually we got to hear from all of North’s teachers, except for their English teacher because she’d resigned earlier in the week. She’d found trying to teach and keep her own two elementary school-age kids on task unworkable. And really, who can blame her? Instead of the teacher, the chair of the English department explained the course objectives but it seemed she would not have mentioned the missing teacher except a mother brought it up during the Q&A. (Class the next day consisted of a screen saying to keep working on a personal essay the students are writing.) It was good to see the rest of the teachers and get a feel for their classes, though. I always enjoy Back to School Night. It turns out North’s history teacher is six months pregnant, so there will be a lot of subs in North’s near future.

Thursday was “a great day” in North’s words. They got an A on an algebra quiz and got completely caught up on homework. (Noah has been helping them with algebra when they get stuck and it seems to be paying off.) North’s friend Charlotte unexpectedly dropped off twenty-three homemade cupcakes, with a note that said they were for their half-birthday. Charlotte bakes for Bakers Against Racism and we’d ordered a dozen, so I wondered if the exact number of the extra ones were because the half-birthday was on the twenty-third. I’m still not sure. In addition to all that, North’s case manager at Children’s—we have one now—secured an earlier urology appointment for North in mid-October, out in Howard County, which is a schlep but it was an improvement over November, so we took it. Finally, we got takeout from Italian Kitchen for dinner, at North’s instigation.

Friday Noah and I spent over an hour moving furniture off the porch and stripping ivy from it so the painter could come power wash it in preparation for painting and North had a little backyard party. (Well it started in the yard and then rain moved it to the porch.) Back in March, when the lockdowns were startling and new and half of humanity hadn’t already had a scaled-back birthday, North turned fourteen and we let them see several friends one at a time on the porch to eat cake and promised them a proper birthday party when it was feasible. Three months later, I asked if they’d rather have a small, outdoor party instead of holding out for a sleepover and they said no. When I made the same offer recently, to my surprise, they said yes.  I guess sleepovers are seeming impossibly far away. So they invited four friends over, all at the same time, to drink root beer and eat Cheetos, pizza, and cupcakes. Three of the guests had celebrated with North six months ago, but one was a friend whose mom has been very strict about seeing friends so North hadn’t seen her since March. Norma even brought a present, which North wasn’t expecting.

And in another bit of good mojo, on that day the urology appointment got moved to next week.

 

*Bolded after the fact. As Nicole picked up in the comments, I seem to have buried the lede.

Back at the Hospital: Coronavirus Chronicles, Part 21

In the past nine days, North’s been to an urgent care once, the ER twice, and admitted to the hospital for two days and three nights. It’s gotten to the point where when discussing some mundane family plans, like when Beth, Noah, and I will finish our currently-in-progress game of Settlers of Catan, we’ll append things like “assuming North’s not in the hospital.” 

Before the Hospital: Wednesday

North’s online classes meet Monday, Tuesdays, Thursdays, and Fridays. Wednesday is supposed to be a day to do homework and go to teachers’ office hours. The first week of school, North didn’t have much work, so they used Wednesday to finish the last of their summer homework assignments. We also had a 504 meeting for seizure-related accommodations, with the ninth grade counselor and several of  North’s teachers. It went surprisingly well. We tried to get a 504 plan for Noah’s ADHD twice, once in elementary school and once in high school, but were denied both times. We thought this accommodation would be easier to get, but not to have it granted in the meeting. I didn’t even know that could happen.

ER Visit: Wednesday Night to Thursday Morning

I was feeling happy both about that and the summer homework finally being done, so of course on Wednesday evening, things went sideways. Beth was at the grocery store when North told me they needed to pee, but they couldn’t. They’d already tried running the faucet in the bathroom, so I suggested a warm bath. By the time Beth got home, North was very distressed, so we decided they’d go to Children’s. I stayed home because there’s still a one-parent rule in the ER, but Beth and I were texting through the evening.  Apparently it was a strange night at Children’s, very crowded in the ER and there was a group of twenty-somethings who seemed to be having a tailgate party, playing music and smoking pot in the garage.

It took a while to get seen because of the crowd, and when they finally were, the doctors wanted to do a bladder ultrasound. If you’ve ever been pregnant, you know that means your bladder needs to be full, so it was 1:30 in the morning before North finally got a catheter to empty their bladder. They didn’t feel as if was completely empty, though, so they went to the bathroom and were able to go on their own. Because of that and because the urine sample and ultrasound didn’t show anything unusual, North wasn’t admitted and they came home.

Back to the Hospital: Thursday Night to Sunday Afternoon

However, the next morning when North woke up they were unable to go again. Beth called our pediatrician for advice. We tried another bath, this one with candles and rose petals (from our rosebush) floating in the water. I was trying to make it as relaxing as possible, but no go. It was dinner time before we got a call back from the pediatrician, who sent us back to the hospital, calling ahead to let them know we were coming and recommending admission.

This time Beth drove us there and dropped me and North off at the ER. One of the intake people recognized North from the night before. (This reminded me of the paramedic who came both times we called 911 this summer. And then sometime during the hospitalization I’m writing about now, one of the neurologists actually remembered North from the complex migraine that paralyzed their hands and feet in fifth grade). What can I say? North is well-known in greater metropolitan Washington area medical circles.

While we were talking to the triage nurse, North seized and all of a sudden all kinds of people rushed in offering oxygen and asking if we had rescue medicine on us, so I had to explain it wasn’t epilepsy so there is no rescue medicine and this wasn’t the problem that brought us here. It wasn’t even a very long seizure, something we’d pretty much shrug off at this point.

Once we got in an exam room, they wanted to do another ultrasound, so again, there was a long wait for the catheter. By this point it had been something like twenty-one hours since North had peed.

Now something I haven’t mentioned yet is that North had been feeling sick to their stomach since Sunday morning after breakfast and it was now Thursday evening. During this whole time they hadn’t eaten except to suck on some candy Sunday afternoon. They were drinking but probably not as much as usual. Still, they were very uncomfortable and as the doctors and nurses discussed whether or not they were dehydrated and needed iv fluids—opinions on this issue were divided—I kept asking everyone who came in the room, over and over, if they could get a catheter. Finally, they did. They also got some anti-nausea medicine and then they were hungry for the first time in days, so I asked a nurse if we could get something to eat. She came back with apple juice and an assortment of crackers. North ate a bag of goldfish and some saltines.

After the ultrasound, two different medical personnel told me North did not have a tumor blocking their urethra—that was something I hadn’t even thought to worry about yet. North got their fourth covid test of the summer, and we got a room. It was one a.m. before we got to bed. Then North was being examined and catheterized again with the lights on from four to five a.m. and a med student came in and woke us up at seven-thirty, so neither of us got much sleep.

Friday was kind of blur, honestly, as I was really tired, but there was a parade of medical personnel who came by, nurses, a physical therapist, an occupational therapist, neurologist(s), urologist(s), etc. Beth came by in the late morning and we overlapped for a couple hours and listened to doctors and played Clue with North. I left for home in the early afternoon. Once home, I put in a load of laundry, slept, and updated my mom on the situation. I’d hoped to work but I was just too wiped out, even with the nap, so Noah and I ordered pizza and watched The Witch.

Back at the hospital, North had an MRI but seized during it, so they didn’t get the images they wanted. The doctors wanted to do a test to see if going an extended period of time without using the catheter would cause North to be able to pee, but it only caused them a lot of pain, so we never repeated the experiment.

I slept nine hours Friday night and stayed at home long enough Saturday to keep doing laundry, menu plan for the next week, make Beth a grocery list, and to work some—with a nifty new two-monitor setup Noah made for me—and I went back to the hospital in the late afternoon. While I was gone, they tried another MRI, with Valium, but it didn’t keep North from seizing. Apparently it’s harder to get slots for the MRIs with an intravenous sedative scheduled because you need a different kind of tech to do it. In their down moments, North tried to watch some of the classes they’d missed Thursday and Friday and do homework.

Beth and I overlapped again for several hours that evening during which we watched an episode of Gilmore Girls with North. Beth needed to stay at the hospital because a nurse was going to show her how to use the catheter. If she could do it successfully that night and the next morning, North could be discharged. She got it on the first try and went home. I spent another night at the hospital with North and then Beth came back in the morning, used the catheter successfully again and North was discharged. We had lunch in the hospital cafeteria– which, strangely, is a treat for North– and went home.

Back Home (Mostly): Sunday Afternoon to Thursday

We were all very glad to be at home together, but frustrated that the new problem had not actually been resolved. North still needs to have the MRI, which is supposed to rule out any spinal compression from their herniated disk, and we need to secure appointments with neurology and urology.

We had most of Sunday and nearly all of Monday at home. North got caught up on schoolwork, Beth grocery shopped, I wrote a batch of postcards to Florida voters and Noah and I made dinner (pasta with basil-mint pesto and fresh mozzarella) on Sunday. Then we went out for frozen yogurt, which we’d meant to do the Sunday prior. Ice cream or frozen yogurt the night before the first day of school is a family tradition, but North had been either sick or in the hospital for a week and we are not people to skip something like that just because it’s a week late.

Monday, Beth made homemade waffles for breakfast because she always does that on three-day weekends and I made a peach-berry cobbler to celebrate the end of the first week of school. Noah and I watched the series finale of The Magicians. Zoë came over for a three-hour porch visit with North and had some of the cobbler with us. We had a backyard picnic for dinner and then went out for Noah’s last-night-of-summer vacation ice cream at Ben and Jerry’s.

On the way home I said something about everyone getting to sleep at home two nights in a row. I should not have said that. North suddenly developed symptoms of a painful UTI shortly after we got home. She and Beth tried an urgent care but they couldn’t handle a catheter, so they had to go back to the ER. It was “uneventful” in North’s words because they were diagnosed with a clear-cut ailment and treated for it. It did keep both Beth and North up late, though. It was two-thirty before they got home.

Meanwhile, in news of the other kid, Tuesday was Noah’s first day of the semester. He only had one class, Audio Production II. On Wednesday he had the remaining three: a computer science class, Ethnomathematics, and Intro to Philosophy. We weren’t able to get much information about his classes out of him. They are all “fine.” They’re all small, roughly twenty-five students each, except for Audio Production, which is about ten. He thinks this audio class might be more hands-on than the one he took last spring, which he would like. He declined to take Cinema Production II this semester because he’d rather have it in person. This makes sense, as the excellent film studios are a big part of what drew him to Ithaca.

North says their favorite class is Japanese because it’s interesting learning such a different language. But they also appreciate that yoga is the only class they are allowed to attend in bed. One day in sculpture class they were assigned to make an assemblage of items that represented their morning. North chose Sunday morning, the day they were discharged, and arranged their mask and some medical debris around their stuffed monkey Muffin, who always goes to the hospital when they do.

Tuesday we also had our first appointment with North’s new psychologist. She seems nice and she does Cognitive Behavioral Therapy, which has been recommended to us for Functional Neurological Disorder by more than one person, so for now, we’re hanging our hopes on it.

Wednesday morning we couldn’t wake North for their first or second class, despite repeated efforts. They slept fourteen hours, from ten p.m. until noon. This was worrying, but when Beth called the pediatrician she thought it could just be fatigue from fighting off the UTI. This would be less of a problem if all of North’s teachers posted video of their classes for students who’ve missed them, as they are supposed to do. But not all of the teachers are doing it and North has been missing a lot of class.

Wednesday at dinner North said high school is hard, but I told them not to judge it based on two weeks full of medical drama. We trust it will get better—we just don’t know when. And in small sign of normalcy, North was able to attend all their classes on Thursday. (Only three out of the four met because their algebra teacher’s house flooded in the torrential rain and he had to cancel class.) It was the first time they’d been to all their classes since Tuesday of the previous week. I’m taking it as a win.

Spells: Coronavirus Chronicles, Part 20

North’s in high school now. In a sign that this was coming, Tuesday of last week instead of attending the virtual trans kids support group for middle school students, they went to the high school one. They said they only knew one other kid, a ninth grader who’d moved up with them, and the rest were seniors. Apparently college was a big topic of discussion and North felt a little out of place. There have always been a lot of kids moving in and out of group, so I imagine they’ll get used to it, especially if some more ninth and tenth graders they know from their two years in the middle school group come to future meetings.

Two days later North had a two-hour virtual high school orientation. There were speeches from administrators and older students and even a performance from the marching band. Beth guessed it was filmed in the Before Times and repurposed, because of the lack of masks and distancing. Then all the kids broke out into ten-minute sessions with each of their teachers. The teachers had been given a speech to read a different one for each period so everyone would hear all of them, but only some of the teachers read them, and one of them got the periods wrong so North heard it twice. Anyway, it was nice to see the teachers and hear the non-scripted parts of their presentations and learn a bit more about each class. It wasn’t how I imagined North’s high school orientation would be, not until recently anyway, but it still felt like a milestone.

Around 3:40 that afternoon, North started having more and more frequent seizures. There was about twenty-five minutes between the first and second one and about ten between the second and third and after that they were coming every few minutes for the rest of the afternoon and all evening. North was afraid they wouldn’t be able to get to sleep, but they did and they slept normally. However, in the morning, the seizures picked up right where they’d left off, so around ten o’clock, after consulting with a neurologist at Georgetown who’d seen North recently, Beth took North to the ER at Children’s. It’s our preferred hospital, but we’d basically been told not to come back to the Holy Cross ER, so that wasn’t an option.

Around eleven-thirty, Beth texted to say they were in an exam room (the same one North was in the night they had breathing trouble) and the seizures were somewhat less frequent. By one o’ clock, a neurologist had examined North and ordered an EEG. Remember how we had one scheduled for the first week of September at Children’s and we were trying to see if we could get one earlier that than through Georgetown? Well, when that one was scheduled it was two days after the Children’s one, but it was an at-home EEG that North would be hooked up to for twenty-four hours. We’d been trying to decide which one to cancel and which to keep, as there were pros and cons to each, but now that decision was out of our hands. We were all glad because the sooner we got the EEG data, the sooner we’d have a diagnosis for North’s 504 meeting.

By this time, North was seizing about six times an hour, which was a notable reduction, but often enough for all the relevant medical personnel to see it. North had yet another covid test (the third in a little over six weeks) and it was negative so they could be admitted into a non-covid room. Their room was smaller than the last one because it was designed as a single and the view was not as full of iconic Washington architecture, but you could see the Basilica at Catholic University and the McMillan reservoir, so it wasn’t too shabby either. Better yet, there was a couch that expanded into a bed in the room, so Beth didn’t have to sleep in a chair. She even got sheets.

One thing Beth noticed about the neurologists was that they didn’t want to use the word “seizure” for what was happening to North, preferring words like “episodes,” or “spells.” I said if someone had cast a spell on them, it was probably outside the doctors’ purview. Beth said we might need to go to Hogwarts Hospital. That evening Beth also learned that Children’s is now allowing more than one parent to visit at a time, so we made plans for me to come the next morning.

It was 8:45 by the time North got hooked up to the EEG, which was going to run continuously overnight and most of the next morning. The EEG specialist did some tests, inducing seizures with a strobe light and by having North hyperventilate. Beth later said she really hated that part.

Back at home, Noah and I ordered a pizza and mozzarella sticks and two slices of cheesecake and we watched The Lighthouse, which was even stranger than what I expected, but also very good and thought-provoking. Noah told me later he liked the way the film used sound and explained the difference between diegetic and non-diegetic sound to me. I felt kind of guilty about having a fun evening with him while Beth and North were at the hospital, but Beth said, “It’s good to get a break. And it’s good for him to have quality time with you.”

Saturday morning, Beth texted that North would be discharged later in the day, but she wasn’t sure when, so I took a bus and a train and another bus to the hospital. It took two hours, because I spent an hour waiting for a hospital shuttle that doesn’t run on the weekends. I really should have researched that ahead of time, but I thought I had the route to Children’s down pat from all the times we went for trans kids’ group.

While I was trying to get to the hospital, a neurologist came and said the EEG looked normal. There was no unusual brain activity during the seizures. This was more or less what we expected—that they weren’t epileptic—but it was good to get that data point so we can move forward. And now North has a new diagnosis that goes under the Functional Neurological Disorder umbrella—they are psychogenic nonepileptic seizures, which means they have a psychological rather than physical cause. And speaking of the seizures, they were coming much less frequently by now.

I finally arrived around eleven, and sat with North while Beth took a shower and watched as the nurse unhooked them from the EEG. Then she came back with the discharge papers and we signed them and then went to the hospital cafeteria for lunch, to Starbucks, and home, where North rested for most of the rest of the day.

Sunday Beth and Noah went on a drone-flying expedition at a park with a creek and the ruins of an old mill. I would have liked to go, but North was feeling sick to their stomach, so I stayed home with them. North also didn’t feel up to finishing their summer homework—they still had three pages of their math packet and an essay that needed expanding—and we skipped our traditional last-night-of-summer-vacation ice cream, so it didn’t really feel like the last day of summer break. Or maybe it was because we knew the first day wouldn’t feel exactly like the first day either.

But the first day came anyway. North had four of their seven classes: English, Ceramics and Sculpture, Yoga, and Algebra II, each an hour long in theory, though some let out early. There was a little technical difficulty getting into the Zoom room at the beginning of first period, but in general it all went pretty smoothly. We were all curious about how a ceramics class would work online, given the lack of pottery wheels and kilns in most people’s homes. The answer is it’s going to be sculpture class, “with found materials.” Fair enough.

North had a short seizure during second period and then none until fourth period when they had another small one and then one that was so violent they fell out of their chair and hurt their arm and side. Beth turned the lecture off and North went to rest in our bed, where they ended up sleeping for an hour. They are often tired after a long seizure. When they got up they checked to see if the recorded class was available online yet (they are all kept for three days so students can watch one they’ve missed) but it wasn’t, so they did the homework the teacher had assigned and a half page of the summer math packet.

Next they wanted to make brownies, even though they were still feeling sick and wouldn’t eat any of them. I found this odd, but I helped supervise so they wouldn’t end up injuring themselves.

Today North had the rest of their classes: Japanese I, U.S. History, and Biology. It would be nice to see the next steps of this medical journey as clearly as a class schedule, but we can’t, so we’ll have to take it one day at a time.

A Plane to China: Coronavirus Chronicle, Part 18

If we’re friends on Facebook you may remember that a little over a week ago, I had a dream about being on a plane with North that was mostly about the logistics of getting them settled into their seat until I went to the restroom and returned to find North missing and searched the plane frantically until receiving a text from North saying they’d slipped into another dimension and were now on a plane to China.

Beth said that’s exactly what the past few weeks had felt like. And we’ve had a lot of ups and downs medically speaking, since the dream.

But before I go into any of that, though, I want to mention a few nice things that happened that have nothing to do with North’s medical condition. First, about a week and a half ago, we had a family friend over for iced mint tea, which I made with mint from the garden. Becky was North’s preschool music teacher and her daughter used to babysit for us so we stayed in touch and she and I became friends. Although North’s been seeing friends occasionally, I haven’t since March, and just sitting in the backyard with Becky for an hour was really nice, so I resolved to have another friend over soon.

The second thing was an outing we took to Centennial Park in Howard County last weekend. Noah flew his drone, we hiked on an asphalt path that goes around the reservoir taking turns pushing the wheelchair, and we saw a blue heron, which was North’s symbol in preschool, so it always makes me happy to see one (or a painted turtle, which was Noah’s symbol). It also made me happy to see Noah running downhill holding onto North’s chair and making them laugh. If Maryland’s statistics improve and he does go back to school sometime this fall, we will all miss him. As I told Beth, “I want him to go and I want him to stay.”

The third thing is that my resurrection lilies bloomed. They bloom so consistently during the last week of July or the first week of August that when it took until the second week of August I was convinced they’d died, but then they popped out the ground and shot up, as they always do, their cheerful pink blooms atop their tall, fragile stems. It could be a lesson in patience, I suppose, if one was inclined to look at it that way.

Now back to the medical report… Two Fridays ago, in physical therapy North was able to stand about a minute holding onto a bar, and to kick a ball. Both were big breakthroughs. North’s progress has been of the two-steps-forward-one-step-back variety. Just a day after that PT session was the last day they were able to stand for almost a week, but when they were able to do it again, they could do it for around the same amount of time with no support at all and they were able to lift their feet one at a time. So they are inching forward and getting stronger. That’s the plus side.

Meanwhile, this week was bookended by an ER visit and a much longer, more complicated seizure than North had ever had. The ER visit was last Monday evening. At dinner that night, North complained of throat irritation, and a little bit later while Beth and North were sitting out on the porch, watching the rain, North started to experience difficulty breathing and was unable to speak.

We waited a few minutes to see if it got better or worse and when it got worse, Beth called 9-11 and soon there were five or six paramedics on our porch. They took North’s temperature and attached a pulse oximeter to North’s finger and found both their temperature and their oxygen saturation were normal. Listening to their breath, the paramedic didn’t hear any wheezing. He said it was up to us whether to go to the hospital or stay home. We asked North what they wanted, and they indicated they wanted to go, so we did.

North and I rode in the ambulance and Beth drove behind. Because only one parent is allowed in Children’s at a time, Beth had to wait outside the ER the whole time we were in there. Meanwhile, I had gotten motion sick in the ambulance because the passenger seat faces backward and that always makes me sick. I managed to get to a bathroom to throw up once we were inside, but a few times in the ambulance, it was a close thing.  I think the paramedic who was riding with us knew because in between asking me and North questions for the forms she was filling out she kept apologizing for bumps in the road and saying she sometimes got sick, too.

Once I’d finished filling out intake forms, we went to a room where North was hooked up to another pulse oximeter and a heart monitor and various medical professionals came and went. On the other side of the curtain, there was a Latino boy, maybe preschool age, who was there for gastrointestinal bleeding. There was an interpreter, so I heard all about his upcoming colonoscopy in English and Spanish and then he piped up that he’d had one before. When you’re in a children’s hospital, there are always reminders that things could be worse.

Eventually North had a chest and neck x-ray so the doctors could look for any obstructions, but they didn’t find any. About ten p.m., two hours after we’d arrived, a respiratory therapist came by and North got a nebulizer with a saline mist in it. The treatment lasted about ten minutes. Communicating with thumbs up or down in response to my questions, they indicated that initially it felt cool on their throat and eased the irritation but didn’t help their breathing. When it was finished, I asked again and they said they were breathing a little better.  And then a few minutes after that, they started to speak again and said they were “a lot better.”

We discussed possible causes with a doctor. I mentioned North had felt a stinging in their eyes while they were taking thyme leaves off the stem for me as I was making dinner and then had a scratchy throat after eating. I added I’d never heard of thyme being an allergen and also mentioned it’s a herb I frequently use—I grow it in the garden– but the doctor said it was a possibility. Shortly before midnight, we were discharged with a prescription for an epi pen.

Having done some reading since that night, though, we’re not really sure it was an allergy. Thyme is a very rare allergy, and the symptoms aren’t typically respiratory. It seems like it could be part of the Functional Neurological Disorder, another thing their body just stopped doing well. Still, with everything we have going on, it seems simpler to treat it like an allergy just in case, rather than getting dragging North into another doctor’s office to get tested. (It’s something we might like to do eventually, though.)

Two days later, North had an appointment with the Physical Medicine department at Children’s. This was the next stop after Neurology decided they couldn’t help. It was a disappointing meeting. Both Beth and North came out of it feeling like there was no solid plan going forward, other than continuing physical therapy and waiting weeks to see a psychologist. PT is helping with their leg strength and function, but it doesn’t address the seizures and it doesn’t get at the root cause of whatever is causing the whole disorder. North is supposed to see a psychology fellow at Children’s sometime in September (it’s not scheduled yet) and we also have a late September appointment for psychology intake at a clinic associated with Johns Hopkins. We are trying to get into the system at both institutions at once to see how each one goes because it takes so long to get an appointment.

North had their first aqua therapy appointment later that day. We’d been hoping this would be as helpful as it was with their chronic pain last year, but North had a seizure in the water and the therapist wasn’t sure we should continue with more appointments, for safety reasons. So that’s up in the air.

Speaking of seizures, North had a big one on Friday night. They were in the living room, reading pages off our mystery calendar. This is a bedtime tradition. It’s one of those page-a-day calendars, each one describing an unsolved mystery. We’d gotten several days behind and North had five pages to read. They had several seizures while reading—the kind they’ve been having all along—they slump over for up to thirty seconds and their eyes roll back, their limbs sometimes shake a little, and then they’re back to normal. During the last page, they had a new kind. It was like the short ones, but it went on much longer. And it kept seeming to end and North’s eyes would look aware and then it would start up again. This went on for five or ten minutes and when it was over it was an hour or so before they could speak.

That very day North’s physical therapist had suggested reducing North’s screen time to see if it helped with the seizures, and we’d resolved to try to get them down to two hours a day. I used to be really strict about media limits but around the time North started middle school, we were having a lot of conflicts about it and I decided it wasn’t the hill I wanted to die on. We switched to a system in which they had to complete schoolwork, a chore, and a wholesome activity and after that I wouldn’t ask how long they were spending on their phone. It worked okay when school involved going somewhere for seven hours a day and they had extracurricular activities and saw their friends often. During the pandemic, it’s been working less well. According to the stats on their phone, they’re on it six hours a day on average and that doesn’t count watching television. So, we’re trying to put the genie back in the bottle.

It’s only third day and North is having a difficult time trying to figure out what to do with themselves. So we’ve bought them a new card game with a solitaire option, a new perplexus ball, and I ordered a graphic novel from the library (which is now doing curbside pickup) as this is the kind of book North likes best.

But we are limiting any kind of reading in the evenings because on Saturday evening, while we were playing Cards Against Humanity, they had a series of short seizures and we wondered if reading late in the day could be a trigger. It might not be, though, because this afternoon North had another long seizure (about five minutes) while they were in the car with Beth. Like the other one, it was followed by about an hour of mutism. And during dinner, they had a series of medium-length ones. They weren’t reading before either of these episodes.

And in between these seizures, they walked several feet with the walker we bought in Ithaca when all this started. Steps backward, steps forward…

A New Routine: Coronavirus Chronicle, Part 17

The week after we got back from the beach was a flurry of medical appointments. There was a meeting with the Neurology department at Children’s on Monday, which both Beth and North found discouraging because having found no organic cause for North’s troubles, they seemed to be washing their hands of them. Responsibility for North’s case seems to have been transferred to the Physical Medicine department, which as far as we can tell, handles less clear-cut cases like North’s, but the first appointment there isn’t until the week after next.

In the meanwhile, they do have a diagnosis, Functional Neurological Disorder, also called Conversion Disorder. If you read through the description, you’ll notice migraines are a risk factor, and also that it sometimes take the form of the inability to speak, which did happen to North for about a month and a half in third grade.

Tuesday, North saw the orthodontist, where they switched out their yellow braces for purple, and on Wednesday, they had physical therapy at the rehab hospital in the morning and a pediatrician appointment in the afternoon. It was a long overdue regular check-up but what got us into the office was the fact that we needed a signature for an application for a temporary handicapped parking permit. Surprisingly, when North was discharged from the hospital, the nurse said it couldn’t be a doctor at the hospital who signed it—it had to be North’s pediatrician. (I couldn’t believe it, so she offered to go back and double check, but she came back with the same answer.) Anyway, that’s another appointment off the to-do list.

Thursday we had a telemedicine appointment with Psychiatry at Children’s. We know the doctor; we’d seen her a few times through the gender clinic. We discussed various stressors in North’s life that they might be somatizing. The psychiatrist seemed to find the car accident North witnessed most interesting. She had no interest in Matthew’s death, though that was a lot more proximate (a little over a week before North stopped walking, as opposed to a month and a half before).

Finally, on Friday, North had their second physical therapy appointment of the week. At this one, they stood, holding a bar for several seconds at a time, a few times. Beth was really excited about this and I was, too, when they came home and North demonstrated at the kitchen sink.

Despite this progress, the whole experience has been pretty hard on North. That’s why I was glad that for three evenings that week (Tuesday through Thursday), North’s sleep-away camp had what they are calling “Intermission,” virtual evening meeting so campers who won’t see each other in person this year can re-connect. There was a virtual campfire, with campers encouraged to bring their own S’mores; a discussion about values and ethics, which is something they do daily at camp; and a talent show. I hope this helped bolster North. North was also able to meet up with Miles and Jay at a park and hang out awhile Thursday afternoon.

As another way of reducing their stress, on Wednesday, we agreed to let North drop the remaining half of their Foundations of Tech class. They were having trouble finding assignments (and the messages from their teacher about the missing assignments) and/or submitting assignments they had completed on the portal and they’d gotten very behind.  They had no hard copy or electronic record of the missing work they thought they had turned in and it just seemed too difficult to sort out, especially in an accelerated summer course. Something similar happened fourth quarter in their English class, but in that case, we didn’t find out until their report card arrived with a nasty surprise on it. This is concerning because North’s classes will be all online through the end of January at the earliest, but we’re going to try to be more proactive about making sure they’re getting all their work done. Right now, it’s just too much to deal with, for a required class they just wanted to get out of the way early.

This weekend we got North back in the water, this time a swimming pool. Beth made reservations at Long Branch pool for the three to five p.m. slot on Saturday. This pool is actually two pools (plus a baby pool, which was closed). In addition to limiting how many people are allowed in the pool at once, they’ve taken away all the chairs, though you’re allowed to bring your own. We didn’t, though, which was just as well, because North wanted to spend as close to two hours as they could in the water and we needed at least one parent to stay in arm’s reach. (I spent about forty-five minutes of our pool time swimming laps, my first time since March. For the rest of the time, the three of us were all together in the water.)

Both pools have wheelchair lifts, so we had our pick. We went with the smaller one, which is shallower. While in the water, they were able to dog paddle using just their arms, hold onto the side of the pool and put some weight on their legs, to stand away from the wall while holding Beth’s hands, and even to take a few steps.

They also had three seizures while we were there. I haven’t mentioned the seizures, have I? They last about thirty seconds during which North goes limp and their eyes roll back in their head. They don’t lose consciousness and they’re aware of their surroundings, but they can’t speak. I’d never seen it happen before, but Beth had, as did North’s friends Miles and Jay two days earlier. These kind of non-epileptic seizures are also part of Functional Neurological Disorder.

This coming week will be less busy, with just three medical appointments instead of six. North will go to the dentist and to physical therapy twice. I also hope to get back into swing of some of our pandemic routine that went by the wayside during our travels and while North was in the hospital, and in this hectic week. For a couple months, on Tuesday evenings Beth and I had been alternating between playing Settlers of Cataan with Noah, or listening to a teen gay romance on audiobook (You Know Me So Well) with North. But this week I had a deadline for a technical brochure on B vitamins and needed to work Tuesday evening, so we skipped it. On Thursdays we have an all-family activity and it was North’s turn to choose, but we didn’t remember it was Thursday until shortly before dinner and North, who often choses something that requires preparation, like the pop-up café in May and the scavenger hunt in June, didn’t want to come up with something on the fly, so we decided to defer their turn a week. Finally, we didn’t go to a park to fly Noah’s drone this weekend, partly because he didn’t ask, but partly because it’s a more complicated outing now that North can’t be left at home alone. (They opted to skip most of the drone-flying expeditions in the past.) I think we’ll keep doing it, but maybe not as often.

We’re all getting used to a new routine, at least for the time being, and learning how to incorporate the old routine into it.

Green Light for the Beach: Coronavirus Chronicle, Part 16

The first day North was out of the hospital, Beth texted me from their physical therapy appointment: “Green light for the beach.” Apparently, the therapist thought it would be fine to go.

So we went.

Saturday

We got a late start out of the house at 2 p.m., two hours later than we intended, and then there was a lot of traffic before the Bay Bridge, so it was almost four-thirty when we stopped at our traditional lunch spot, the Taco Bell and Dairy Queen right past the bridge (and yes, we did wait that long to eat lunch, snacking on garlic rye crisps and dried apricots in the car).

We stopped at our favorite farm stand and got a lot of produce, and arrived in Rehoboth around 7:30. We were all charmed by the house, which was nicer than it looked in its online pictures. It was wood-paneled with a soaring ceiling over the dining room and a sort of indoor veranda over the living room. The kitchen was a cheerful aqua color and spacious. There were two screened porches, a big one, and a little one with a desk I used as a writing table to write a lot of this post. It was also more house than we needed—five bedrooms. It’s harder to find little two or three bedroom cottages than it was in the nineties when we started vacationing in Rehoboth. Sadly, a lot of them have been torn down and replaced with larger houses.  But the space allowed us to spread out. Noah and I used one of the extra upstairs bedrooms as a reading room, and all week I kept imagining how we’d assign the rooms if we had our mothers and my sister and her family with us. We missed them a lot.

The only two drawbacks of the house were that 1) it wasn’t particularly accessible (we’d rented it back when North was on crutches, but not in a wheelchair) so we had to lift that chair up and down the front and back steps over and over, and 2) when we got there the thermostat was in a lockbox and set to 73 degrees and for the first couple days we were freezing, until we got the realty to open the box and let us set it.

The main reason we’d chosen this house was that it was a block from the beach, and we imagined North would be able to get to the beach on their own and would spend hours every day swimming. Clearly, that plan would have to be adjusted.

After unpacking the food, Beth, North, and I slipped down to the boardwalk. We were near the south end of it (we usually stay further north). There was an accessible path made of woven plastic that extended a little ways down the beach, close enough to see the water, so we wheeled North down it. We returned to the boardwalk, found the nearest beach wheelchair shed (five blocks away and closed for the day) so we’d know where it was, and then we peeked into Funland to see what their safety procedures looked like, but most of the entrances were blocked off and we couldn’t really see. Beth did manage to talk to an employee and ascertained that the Haunted Mansion was accessible. I don’t think North would want to go if they couldn’t do that.

We opted to turn around there because the crowds were getting thicker and not as many people were wearing masks as I would have liked (maybe half). Besides, it was getting late. We had a cold supper of cheese and crackers and fruit, as late as Europeans, Beth said. (It was past nine.) Then North did their physical therapy exercises and I cleaned up the kitchen and we turned in late (for us—it might have been eleven).

Sunday

Beth went out in the morning to get some breakfast groceries and we all ate and Beth and North went for another stroll on the boardwalk while I was still eating. When they returned they reported the crowds were sparser and a higher percentage of people were wearing masks in the daytime. I hit the beach around ten. It was a warm, muggy, foggy day. I could see the lifeguards from the water so I assumed they could see me, but the next lifeguard stand to the north was shrouded in fog and I couldn’t see the one to the south (which was further away) at all. The houses up on shore were partially obscured. It was kind of an eerie swim, but good to be in the water.

I swam about forty minutes, then took a short walk and returned to the house so Beth and I could menu plan and make a grocery list.  Once that was done, she left to go shopping, and I had lunch, read with Noah in our reading room, and then put the groceries away when she came home, and made lunch for North.

Around three, the kids and I left for the beach. The sky was darkening as we walked to the beach wheelchair shed and many more people were leaving the beach than arriving. This seemed like a bad sign, but I called for the beach patrol to unlock a chair for us. Someone arrived pretty quickly and soon we were rolling North down to the water. Their goal was to sit on the wet sand and feel the water on their feet and legs. It’s such a nice service that these chairs are available for anyone who needs them for free, but just as the big, puffy wheels hit the wet sand, the lifeguards heard thunder and blew their whistles and everyone had to get out of the water. So North’s vision was not realized that day. I was hoping to salvage the outing by asking if they wanted to stroll down the beach in the chair, or maybe just stay where we were and watch the waves, when a lifeguard came over and explained we had to leave the beach, not just the water.

We returned the beach wheelchair, got North back into the regular wheelchair, and pushed them up to the boardwalk. It was nice to have Noah’s help whenever he came to the beach. (And I would like to have the upper body strength of a nineteen-year-old boy who doesn’t even work out.) I eyed the boardwalk, wondering if a consolation prize of a trip to Candy Kitchen was feasible, but everyone who had left the beach seemed to be on the boardwalk now, plus the people who’d already been there, so we turned back. The storm never materialized.

Back at the house, Noah and I watched The Magicians while Beth and North watched The Fosters and then I blogged on the writing porch, while Beth made a dinner of veggie burgers and hot dogs, corn on the cob, potato salad, and watermelon.

After dinner, we ventured out to see if the boardwalk was less crowded on a Sunday night than a Saturday night. The answer was not really, but by ducking down side streets and looping back, we avoided the biggest crowds, and we got ice cream on Rehoboth Ave.  We also got a better look into Funland. What I saw in terms of distancing and masks was encouraging. We returned to a less populated part of the boardwalk to eat our ice cream and I stayed a bit after everyone else had gone home to watch the sky over the ocean get pinker and then grow dark.

Monday

I was on the beach by 9:45, leaving North and Beth at the dining room table, attending their online summer school course and working, respectively. It was a hot, sunny day so I went straight to the water where I swam for almost an hour. I saw pelicans and dolphins and only left the beach, reluctantly, at 11:15 because I didn’t want to get too much sun.

At the house I made lunch for myself and North, who had just finished class, then I read with Noah, and wrote some get-out-the-vote postcards for a special election in Tennessee. Beth drove me to the post office to mail them so I could get North to the beach sooner.

This time the day was sunny, with no hint of lightning or thunder so we got the beach wheelchair down to the water and I eased North out of it so they could sit on the sand, with the water running over their legs and sometimes covering them as high as their chest. I noticed when the water moved their thighs they were able to move them back into position without using their hands. They said it was partly being able to move better in the water, and partly the water itself, changing direction and pushing their legs back.

I texted Noah to come because it was almost time to return the beach wheelchair. Getting North down to the water was doable (but difficult) with one person, but getting back was definitely a two-person job.

We got Grandpa Mac (build-your-own-pasta-bowls) delivered for dinner and watched Babette’s Feast, after a half-hour negotiation about what to watch. I hadn’t seen it in decades, but it holds up and the kids liked it, too, especially North.

Tuesday

I took North to the beach in the morning. North thought they’d try sitting in the chair, pushed a little bit into the water because the man who checked out the chair said you can do that and North thought they’d get less sand in their suit that way. But even with the brake set, the chair crept forward when the sand under its wheels eroded in the waves and I was struggling to control it when three beachgoers ran to help. After that, I parked it on the dry sand and North scooched down to the water again. While we were in the water, we saw dolphins and pelicans but the most exciting thing I saw was North kneeling, sometimes holding my hands, but sometimes unsupported when the water got deep enough around them. Beth got to see it, too, because she’d come to help get North off the beach. (Unfortunately, they felt weaker the next day and attributed it to overexertion and were never able to do it again.)

Noah and Beth usually do a puzzle on vacations and this year they had a challenging one to tackle. It was a Frank Lloyd Wright design meant to evoke saguaro cacti and cactus flowers. North got it for Noah for Christmas. Beth and Noah started it Tuesday after lunch.

While they were getting started, I ventured to Candy Kitchen and made a big purchase because we’d decided to limit ourselves to one trip this year instead of a few. I got fudge, sea salt caramels, gummy pizza slices, truffles, and a few other things. The boardwalk wasn’t crowded at all and when I arrived I was the only one in the store. Beth and I decided, based on patterns we’d observed, that from then on we’d only go the boardwalk on weekdays, during the daytime.  Other than Candy Kitchen and the grocery store, we also kept out of the indoor stores we usually visit—the tea and spice shop, our favorite coffeeshop, t-shirt shops, the bookstore, the crocs outlet on the highway. We also skipped the water park, not that North could have gone this year anyway.

After I got back with the candy, Noah and I took a late afternoon trip to the beach. He brought his drone and got some great footage. While he was filming, I had a nice swim. It was sunny and the surface of the water was silvery, with all the little ripples sharply defined. It was clearer than usual, too, and I could see a little fish about the size of my finger swimming near the surface. I also saw a couple of jellyfish but I didn’t see the one that stung the inside of my wrist. It left a red mark, but it faded quickly and hurt less than a bee sting. (I was in a good position to judge because the prior week while waiting for a bus to go to the hospital, I was stung by a bee and the memory was fresh.)

Beth made her traditional beach week meal that night—gazpacho, salt-crusted potatoes with cilantro-garlic sauce, and a spread of fancy cheeses. This year she added watermelon agua fresca to the meal. (North chopped ten cups of watermelon for it.)  We called it Beth’s Feast and before we ate, Noah said, “Not a word about the food.” (This is a line from Babette’s Feast.)

While I did the dishes, Beth and Noah watched The Mandalorian, then we all played Cards Against Humanity and then Beth and North went for a walk while Noah and I watched The Magicians.

“We did all the things,” I said to Beth as we went to bed, but despite our busy evening, I couldn’t sleep that night, so I slipped down to the beach after Beth had fallen asleep, to stand on the sand and watch the heat lightning.

Wednesday

I woke up stiff and sore from pushing the beach wheelchair uphill the day before, but a morning swim, followed by sitting in a beach chair in the sun watching the waves, helped loosen me up. After lunch, we all headed to the boardwalk for treats. Noah and I shared a paper cup of fries, and North and Beth got gelati (a parfait of soft serve and Italian ice). I wanted funnel cake but I didn’t think it would be wise to eat it right after fries, so I decided to wait.

Noah went home while the rest of us went to the beach. With two adults, we could let North go a little deeper into the water as we each held one of their hands to stabilize them as they sat in the water. Some of the waves were big enough they could duck their head under them. Before we left, I had a brief swim. It was another sunny day with calm water in blue, green, and brown sections.

After we returned the beach wheelchair, Beth and North headed home and I got my funnel cake, which I ate very slowly in the shade of the porch of the restroom pavilion next to Funland. I only ate half of it—those things are enormous.

Next I came home and made dinner (a cucumber salad with yogurt-dill dressing and hard-boiled egg grated over it). It was ready early so Noah and I read before dinner and then after dinner Beth and the kids played a game they found in the house, while I blogged.

Thursday

Beth and Noah were out the door by eight the next morning. He wanted to fly the drone on another part of the beach, over some of the more iconic boardwalk businesses before many people were there. He flew over the Dolles sign and some dolphins, (but from pretty far away because he didn’t want to disturb them). Here’s about five minutes of his footage from both drone expeditions.

North got up twenty minutes after they left, just as I was about to wake them for their 9 a.m. Foundations of Tech class. (They decided later that day they wanted to drop half of the class and do the equivalent of a semester instead of a year over the course of five weeks because they were finding it more difficult than expected and they would have a lot going on with doctors’ appointments once we got back home.)

I made them breakfast, then headed to the beach, where I spent an hour and forty-five minutes at the beach, swimming and watching the waves from the sand.

I returned to the house, showered, read with Noah, and then we all walked down to the boardwalk again to have lunch at the crepe stall in an alley off Rehoboth Ave. It was while we were eating lunch that I finally agreed to North’s plan to go deeper in the water inside an inflatable ring with a mother on each side. (I was surprised they got Beth on board before me, as she’s generally more cautious about this kind of thing.)

Beth went to a 5 & 10 to purchase the ring, while I secured the beach wheelchair and then we all met up. It was tricky getting into and out of the water, but in between North had an experience more like swimming and they didn’t drown, so we considered it a success.

We couldn’t stay in the water too long, though, because North and I had reservations at Funland, which is operating at 20% capacity, with distancing on the rides and masks required. As a result of the reduced crowds, there were no lines to speak of, and people were pretty good about distancing. Not all of the rides are accessible, but two of North’s favorites, the Sea Dragon and the Haunted Mansion, were so they rode them three times each. I accompanied them in the Mansion and having never done it three times in one day before, I can now tell you on the second ride you notice little details you missed the first time, but by the third time it’s pretty much given up all its secrets. North also rode the helicopters twice and the bumper cars once. They were a little frustrated by a few rides that would have been accessible if not for one step up.

“Today was fun,” they said as we proceeded down the boardwalk toward home, where penne with a tomato-mushroom sauce Beth and Noah had made awaited. We ate dinner listening to a presentation about the fall semester at Ithaca on a laptop. Then after I did the dishes, there were games, and work on the puzzle, and blogging. But sadly, Beth was up late working, for the second night in a row.

Friday

I woke already sad to be leaving in a day. Sometimes at the end of beach week I feel peaceful and satisfied, but sometimes I’m just really sad and I already knew what kind of departure this was going to be.  Rain was predicted in the morning, so we spent it inside. Noah and I read and watched the season four finale of The Magicians while rain pelted the windows. It was over by lunchtime, so we all went to the beach and North got to try out the ring again. We never really mastered getting in and out of the water. It’s a terrifying process actually when the waves are deep enough to go over your child’s head, but not deep enough for them to float in the ring, though North seemed pretty unfazed by it. And then Beth got knocked down by a wave on the way out and skinned both her shins. But in between, we spent a nice hour in the water and it made North very happy.

The sky was all kinds of sky at once, part overcast, part sunny, with dark gray storm clouds out at sea. These had black strands hanging down Beth thought might be rain. When we got out, Beth and the kids went to the boardwalk for treats, but in a last-day calculus, I decided I’d rather have more beach time than ice cream so I stayed.  A big pod of dolphins showed up and started fishing in front of me, splashing, and flipping their tails out of the water. (I saw the back third of one of them all the way to the tip of its tail.) They were there for a half hour. It was kind of magical. I also saw osprey soaring over me with fish in their talons. I’d been seeing that all week, the fishing seemed better than usual for them.

When my family returned, just missing the dolphins, we walked toward home, but as we got close I realized I wasn’t done yet, and I split off again to return to the beach just in front of our block, where I rested on my towel and then sat up and watched the ocean, and then had my last swim in the golden early evening light. The water was calm, as it had been all week, so I floated on my back and looked at the cottony clouds and a gull circling over my head.

Back at the house, we had pizza delivered and ate it on the screened porch, and talked about how we’d missed being with our usual beach crew of extended family. Then I cleaned the kitchen, Beth and Noah finished the puzzle, we all watched an episode of Speechless, and started to pack up the house. We knew from our experience trying to get on the road a week earlier, it takes longer now that North can’t help as much and there’s more equipment to fit in and on top of the car.

Saturday

As a result of doing a lot of leaving-the-house chores the night before we got out of the house pretty smoothly and close to on time. Beth drove to the realty to return the keys while the kids and I went to the boardwalk to say goodbye to the ocean. This ritual had to be revised because it wasn’t worth the hassle of getting North down to the water, so instead we brought the water to North. We left the chair at the end of the plastic path where North could see us and we stood with our feet in the water for the requisite twenty waves, then filled a plastic water bottle with ocean water, came back and poured it on North’s feet.

And with that, our strange week at the beach was over.

Clues: Coronavirus Chronicle, Part 15

When you last left us, almost two weeks ago, North was sitting in the shallow water at the edge of Cayuga Lake, in Ithaca, New York, and they were unable to stand, even with support. They’d lost control of their thigh muscles, though they had some strength in their hips, glutes, calves, and feet. Though a combination of pushing with their lower legs and us guiding them they could scoot on their bottom and we got them to the picnic table just feet from the water where we’d eaten lunch, though the pebbly incline was a challenge.

North had been complaining of occasional muscle weakness prior to this incident, but nothing on this scale. We hoped it would pass, like the other times, which never lasted more than a half hour, but in the meantime, we needed to get them back to the house. The car was parked in a lot that was in sight, but with North unable to walk, it might as well have been on the moon. There was a service road that came close to the table so Beth went to ask the staff at the park entrance if she could drive on it, but they weren’t authorized to let her (they were young and seemed afraid to break rules).

Beth returned to the table just as a park police officer drove by and after she explained the situation, he (rather reluctantly) said she could drive on the road. Here Beth got annoyed because he wasn’t a teenager with a summer job and he didn’t have to make it hard. Anyway, we got North from the table to the car—I honestly don’t remember how—and drove back to the house.

After some time passed and North’s condition did not improve, we had to decide whether or not to go the ER. You may find it strange that we didn’t for another two days, but we’ve been through a lot of mysterious maladies with North and Beth and I both thought it would be better to get home and take them to Children’s where they’ve been going since they were eight years old. The doctors in neurology and at the pain clinic have the big picture—the month and a half of not speaking (third grade), the year of broken bones (fifth grade), the complex migraine that left their hands and feet paralyzed (also fifth grade), the fracture that left them on crutches for nine months (seventh to eighth grade). We wouldn’t have to try to explain the whole saga to someone new. Also, having had two overnight ER visits with North over the past few years, no one was eager to repeat that experience.

So that’s why we decided to stay at the house. We switched beds so Beth could sleep with North in our bed and I slept in North’s bed. The next day, North still couldn’t move their legs. Beth went to a medical supply store (two actually) while North attended the first and second sessions of an online summer school class they’re taking. Beth returned with a walker, the kind with a seat, that we could use to transport North to restrooms on our drive home. The car was too packed with the contents of Noah’s dorm room to fit a wheelchair.

We left our AinBnB in the early afternoon. “Goodbye, Ithaca. Hope to see you again soon,” Beth said, as we pulled out of the driveway.

“Goodbye, Ithaca,” Noah said, sounding wistful.

A quick diversion on that topic: since we left Ithaca, Maryland has been put on the list of states from which New York will not accept visitors unless they quarantine for two weeks on arrival. Ithaca College’s current policy is that students from these states cannot return to campus until their home states come off the list, which now consists of thirty-one states. I wonder if the list continues to grow if Ithaca will go entirely online for the fall, but as of right now the plan is still a rolling schedule of arrivals from early September to early October, and hybrid classes you can attend in person or remotely. (And while we’re talking about school, our K-12 school district is completely online at least through late January, we recently learned.)

But back to this story… We got home Monday evening. While we were driving, we’d gotten a call back from the doctor who manages North’s case at the pain clinic, or rather a call from someone else saying she was in surgery and couldn’t call back until the next day.

When she did call, late Tuesday morning, she said to go to the ER at Children’s rather than get an appointment at the pain clinic. Beth and North went and to our surprise, because it’s never happened before when we go to the ER, North was admitted. They got a COVID test (negative) and a series of exams and around eight p.m., they got a room. It was a really nice room, spacious because it’s usually a double, and with a view of the Washington monument and the Capitol. Beth came home to get some things for North and then she returned and spent the night in a fold-out chair in the room.

All the next day, North saw more medical personnel and had more exams. I got to the hospital just in time for the MRI. Only one parent per patient is allowed in the hospital at a time and I’d come to relieve Beth. To get there I had to take public transportation (a bus, a train, and a shuttle), which I hadn’t done since March (well, until the previous day when I’d taken a bus to go get some groceries from the Co-op in Beth’s absence).

The MRI took a long time because it was actually two MRIs, one with contrast and one without and they had to change North’s IV in between because it wasn’t working. It was freezing cold and very loud in the room, but North didn’t complain and it was much louder (and hot) in the machine, so I won’t either.

After the MRI, North felt a migraine coming on, probably from the noise, and because it took an hour and a half and two requests to get a nurse to come with painkiller, it developed into a full-blown one, which I haven’t seen in years. (They’ve gotten very good at detecting them and heading them off.)

After they’d recovered, we had dinner in the room and played Sleeping Queens until Beth came to take me home and then return to the hospital. She said as I’m the lighter sleeper I’d never get to sleep with all the lights and noise of a hospital, which was generous of her.

Wednesday was also the thirty-third anniversary of our first date, which we usually celebrate, but we didn’t really this year. As she was leaving the house either the first or second time she went to the hospital that day, Beth said it was not the anniversary either of us would have envisioned, but then she paused and noted we were talking about kids pretty early on in the relationship (even though we took a long time to have them) so maybe it was appropriate.

We found out the next day the MRI hadn’t turned up any physical reason for North’s immobility. This didn’t surprise us or the neurological team. They concluded it was a similar to the misfiring that causes North’s chronic pain, but this time in response to stress, rather than an overreaction to a physical injury. Possible stressors include: the pandemic, the physical and psychological toll of being in pain since February, the car that crashed into our fence in late May (North was just a few feet away), and Matthew’s death. 

That all seemed to make sense on the surface, but as North pointed out, when it struck, they were swimming, and actually feeling pretty relaxed, as any kind of water is their happy place. I find it interesting that it’s their legs that are affected because that’s what happened to Matthew and North was the one who found him half-paralyzed. The doctors (who are not literature Ph.Ds) find the symbolism less compelling. More to the point, they think that physical therapy can get their brain and their legs communicating again. If that happens, all the clues and theories don’t really matter.

Beth and were texting and talking about all this on the phone all day. When I returned to the hospital in the afternoon, not much was going on by that point, except people coming to take North’s vital signs and a social worker who dropped by. We played Clue and Sleeping Queens again and were just about to try ordering dinner again (the line had been busy earlier) when a nurse came by with discharge papers. We were surprised as we didn’t think that was even on the table until the next day, and last we heard, the neurological team was debating discharge to home or to a rehabilitation hospital.  Also, we had a prescription for physical therapy (starting the next day) but not for a medication that had been discussed. And we didn’t have the signature we needed for a handicap parking permit. But we were all eager to have North home and Beth had already acquired a wheelchair, a grab bar for the shower, and a shower stool. So we decided to call with our outstanding questions the next day and just get out of Dodge. (We did order and eat our dinner while we were waiting for some more paperwork.)

Weighing on our minds all through this was the fact that we had a house in Rehoboth one block from the beach rented for a week, starting Saturday. We decided Beth would discuss it with the physical therapist the next day and I joked we were a flight risk. “We are so a flight risk,” Beth said. That evening, with North in our custody, it was starting to seem possible we would actually go.

To be continued…

Somewhat Normal: Coronavirus Chronicle, Part 14

Pirates of Penzance

On the second Wednesday of July, North knocked on the door of Noah’s room, where he and I were reading in the air conditioning. When I yelled, “Come in,” they lunged into the room brandishing a wooden sword they’d just finished covering in aluminum foil.  It was a prop for their role as Frederick, the reluctant pirate in a half-day, outdoor drama camp production of Pirates of Penzance.

The camp was two weeks long and held in a park, with socially distanced blocking and choreography. Because there was only half the time as usual to prepare for the show, campers were making some of their props and costumes at home and the performance would be more of a revue of selected songs than a shortened version of the play.

There were contingency plans for rain, including rescheduling camp hours during the weekend or on July 3 (which they had off because it was a federal holiday), rehearsing in bathing suits, or rehearsing at home on Zoom. However, there was no morning rain the first week and this pattern held for most of the second week. By Wednesday evening, however, the director, Gretchen, had become concerned about forecasts for all-day thunderstorms on Friday, performance day. After hurried consultation with all the families of the campers (half as many as usual to keep distancing manageable), she settled on a plan of having an extra rehearsal late Thursday afternoon and to perform Thursday evening, rather than Friday morning.

This meant North was at camp from nine to noon, at a physical therapy appointment in the city at 1:45, then at another camp session that started at five and lasted until the performance began at seven, which was followed by a distanced cast-parent pizza party in the park. This is a normal level of activity for North in non-pandemic times, but quite unusual these days.

At showtime, the audience set up our blankets and chairs in family groups. The show began with a song with complicated choreography using parasols. All the actors were double-cast as daughters of the Major General and as pirates. I was glad the kids and I had watched a 1983 film version of the show—with Kevin Kline as the pirate king, Angela Lansbury as Ruth (the lady pirate), and Linda Ronstadt as Mabel—the night before camp started because I had no familiarity with the show and otherwise I would have had trouble following it.

There were nine actors, aged thirteen to sixteen, and two were Gretchen’s daughters. Gretchen used the fact that the sisters could stand next to each other to help fill in holes in the blocking in more natural-looking ways, to the extent anything in a show like Pirates is natural. (Gretchen had them work on operatic gestures and other techniques of melodramatic acting.) Here’s a clip of North’s first scene as Frederick, reassuring the frightened maidens that he’s no longer a pirate and therefore not a threat.

The scene that got the most laughs was probably the one in which the pirates are hiding behind rocks and there was one pirate left without a rock and when he tried to share one, the other pirates whipped out their swords and admonished, “Six feet!”

It was a fun show and pleasant to watch outdoors as the heat of the day began to ebb. One of the moms had organized a big pizza order and it wasn’t until shortly before it arrived that Beth and I realized we each thought the other had conveyed our order to her. So Beth had to place a separate order for us and go get it, but we were eating pretty soon after everyone else. We were seated within conversational distance of the mom of a girl North’s known since preschool and Zoë had come to watch the performance, so we all had people to talk to while we waited.

Something Gretchen said while she was introducing the play stuck with me. She was talking about the camp experience and how nice it was to have “a little semblance of something somewhat normal.” That’s why we let North attend this camp, though so much time unmasked and with other people, even standing far apart, did make me nervous.

Ithaca 

We did another somewhat normal thing the next day—we set out on a summer road trip. The official purpose of the trip was to clean out Noah’s dorm room (which he finally had permission to enter) but we decided to make a long weekend out of it.

Beth was scheduled to work Friday morning because we’d expected North to still be in camp, so she did, and we left around noon. We had a picnic lunch about an hour north of home and arrived in Ithaca about 7:30. At the house we met the two friendly resident cats, a calico named Opal and an orange tabby named Leo. By the time we’d unpacked, procured some pizza, eaten it at the house, and cleaned up from dinner, it was time for bed, past time actually. We were up until about eleven, which for me is late. We’d had a longish wait in the rain outside the pizza place, but while we were waiting a passerby informed us and the other little clusters of people that it was “the best pizza in town,” so that was encouraging.

No one slept well because it’s an odd feature of the AirBnB that none of the windows had any dressings except blinds in the bathroom and a sheer bit of fabric on our bedroom window. So we were mostly up with the sun.

We had breakfast in the house and in the late morning Beth and Noah headed to his dorm, while I had a nap. Only two people per family were allowed in and the appointments were spread out so they didn’t see another family the whole time they were there, except one heading into another dorm. (Noah did hear one on another floor of his dorm.) When they came back to the house, Beth said the whole process was “easy peasy.” They brought take-out back with them and Noah was so happy to be reunited with his camera that he started taking pictures of North eating their lunch before he had his.

We spent the afternoon in a series of parks. We hiked part of the trail to Taughanook Falls, but North got tired, so we turned back and drove to the overlook instead. Before we left the trail, though, we waded into the almost dry river, scrambling over the pocked riverbed, full of puddles.      

At Ithaca Falls, there was deeper water to wade and swim in so we stayed there a long time. This was the third or fourth waterfall of the day and it was here Beth said, “There’s another beautiful waterfall around every damn corner.” It’s true. Ithaca is ridiculously lovely. There a reason they said “Ithaca is gorges.” (I swear I’m going to buy that t-shirt someday.) There was a conveniently located log in the water that afforded a nice view of the waterfall so we sat there awhile and Beth said, “This is the best log I have ever sat on.”

We went back to the house where Noah showed us his photos of the trip so far and he and I read a chapter of Homeland. Then we got sushi and ate it at Stewart Park in a pavilion with a view of Cayuga Lake. On the way home we picked up ice cream from Purity, Ithaca’s most famous ice cream parlor and a family favorite.

Everyone slept better because we draped a quilt over the curtain rod in our room and piled pillows in front of the windows in the kids’ room. We had another outdoorsy day planned, but first we fortified ourselves at Waffle Frolic, which is the sort of restaurant where you can get ice cream, Nutella, or frosting on waffles. There are also healthier options, but that’s what we went with, though we did use buckwheat waffles as a base and added fruit and eggs on the side, so the meal was not devoid of nutrition. There were outdoor tables and it was our first time eating at a restaurant during the whole pandemic. It was hard to hear the staff calling out names to pick up food at the counter, but once we got our food it was quite pleasant.

We visited the Ithaca farmers’ market and the food co-op where we gathered food for a picnic. The farmers’ market is under a long wooden roof, with built-in stalls. It’s less extensive than the Takoma Park farmers’ market in terms of produce on offer, but there were more craft stalls. It’s always interesting to see another town’s market.

Next we drove around looking for a place we could swim. It had rained hard the night before so a lot of swimming places were closed because of presumed poor water quality. We ended up at Long Point State Park, also on Cayuga Lake. When we entered the park, and we asked if swimming was allowed, the young man in the booth said, “We can’t say you can, but we can’t say you can’t, and we won’t come get you if you do.” This was a surprising response, as we’d gotten a clear-cut no at the last park we’d tried. A little ominous, too, given what happened later, but we decided to go for it. We ate our lunch at a picnic table and then swam in the pebbly-bottomed lake, ringed with ridges of evergreen trees.

As at all the parks, Noah took a lot of pictures. I’d been thinking about how film and photography help him to connect to nature. In other words, it answers the question “What is the purpose of this activity?” he asked us at this very lake about a year ago.

We’d planned to move on to another park, one where drones are allowed, so around two p.m. North and I started to get out of the water. (Beth and Noah were already out.) Once I was out, North called me back to the water, to help them get to their feet, but when I pulled them up, their legs wouldn’t hold them.

To be continued…

A Goodbye: Coronavirus Chronicle, Part 13

On Friday morning around eight, North found our cat Matthew lying on the living room floor near the front door, half-paralyzed and crying in distress. We were all quite surprised because the day before he’d seemed perfectly normal, but now he had no control over his back legs. The first thing that came to mind was that he had type 1 diabetes and this was exactly how it first presented when he was about a year old. We’d just switched him and his brother Xander from high-protein kitten food to regular cat food and one day his legs just gave out and he collapsed onto the kitchen floor. After some short-term insulin, we got him on food for cats with diabetes and he never needed any more insulin or diabetes medicine. At the time, the vet told us as he got older, the special food might not do the trick anymore and then he’d need to go on insulin. That was sixteen years ago, so I thought that the time had finally come for more aggressive treatment.

We carried him to our bed, which is his favorite place, and brought him some water, which he drank, and for the next few hours, we took turns sitting with him alone or in various combinations. He seemed to calm down and stopped crying so much, but every now and then he’d try, unsuccessfully, to stand. Mostly he just lay quietly, breathing more quickly than usual, occasionally napping a little.

Beth was trying to reach the vet’s office but they never picked up the phone so she drove over there to see if there was anything posted on the door about holiday weekend hours. As it turned out, they were closed for the whole day, so she called an animal hospital in the city. It was the same hospital where our first cat, Emily, received treatment at the end of her life and died, eighteen years ago.

After asking a few questions, the staff person at the animal hospital asked us to bring Matthew in. We’d have to leave him in his carrier at the door and they’d take him inside and talk to us by phone as we waited outside. Even though we knew no one was going inside, North and I came along with Beth and Matthew, just in case we knew the answers to any questions, and for moral support. There weren’t many questions, though, and pretty soon after we left him, they told us to go home and said they’d call us.

Late that morning, the vet called with the bad news. It wasn’t his diabetes. It was heart disease, very advanced. They did an ultrasound and found fluid around his heart and lungs. The immediate problem was a blood clot that was preventing him from moving his legs, but his overall prognosis was poor.

We decided to go through with the euthanasia that day. This time all four of us went to the animal hospital. They are putting animals down in the parking garage because of COVID. This sounds really horrible, but they did their best to make a private space. There was a folding screen making a little room out of a corner. It was near a vent blowing cool air, so it wasn’t oppressively hot, and there was a wooden bench with a cushion on it and side tables with boxes of tissues and water.

Only one person was allowed to be there during the procedure, but we were all allowed to visit with him beforehand. The vet brought our loudly meowing cat behind the screen and stepped out, saying we could take as long as we liked and to call her when we were ready. We sat on the bench and petted him and talked to him and kissed the top of his head. He was wrapped up in a white fleece blanket and part of one of his front legs had been shaved, just above the paw, and the port for the drugs was already attached. My heart sank a little further when I saw that.

When we’d said our goodbyes, everyone but me left, and Beth called for the vet to come back from inside the building. I held Matthew while the vet administered the two drugs, the first to render him unconscious and the second one to stop his heart. They took effect more quickly than I thought they would. The vet listened to his chest with a stethoscope and said, “He’s gone.” She told me it had been the compassionate decision. Or at least that’s what I think she said. Between her face shield and her mask and the fact that we were in a garage, it was hard to hear. I just nodded and she asked if I wanted to stay with him for a while and I did. When I finally lay him down on the bench, I found Beth outside and asked her to call someone to come pick him up and I went back to wait with him again because I couldn’t bear to leave his body alone.

It’s three days later and we’re all sad and kind of shocked. One day we thought he was reasonably healthy for a seventeen-year-old cat—his most serious problem seemed to be a tendency toward constipation and some weight loss we thought was due to his digestive issues—and the next day a vet was telling us he was fatally ill.

We spent a quiet fourth of July. The Takoma Park parade and fireworks were cancelled months ago, so our observation of the holiday consisted of watching Hamilton and having a backyard picnic.  And because it was the most patriotic thing I could think to do, I wrote a small batch of postcards, encouraging Florida voters to enroll in the state’s vote by mail program. (I’ve written over a hundred postcards for this campaign alone.)

The next day, Beth, Noah, and I went to another park. We’ve continued to do this every weekend since mid-May and we have yet to repeat a park. The weekend previous we’d been to a charming little creek off the Middle Patuxent, where we could hear what I think was a good-sized bullfrog croaking underneath a mass of submerged tree roots and we could see dozens of these beautiful black-winged, turquoise-bodied dragonflies.

This week we went to South River Farm Park, which as you might guess from the name is on the South River, a tributary of the Chesapeake Bay. We waded in the salty river and in a little pond (until some kayakers warned us out of it, telling us there were snapping turtles and snakes in there). We saw a Great Blue Heron in the pond, and picked some of the plentiful raspberries we found growing along the trail.

I was sorry North had elected not to come because I think they would have liked it but we weren’t sure whether or not the park had beach access when we set out and they didn’t want to come without knowing for sure. (And actually, this park wasn’t even the one we thought we’d visit. Our first and second choice were filled to capacity and closed.) I was timing how long it took to walk from the parking lot to the water and noting the firmness and slope of the path for future reference. Speaking of North’s condition, after the MRI last week, we learned that they have a herniated disk. It may sound like an odd reaction, but Beth and I were both really happy to learn this because it means there’s a concrete reason for their pain and it should guide the physical therapist’s plan. They already have some at-home exercises to do and they’ll have their first full-length PT session on Thursday.

After we left the park we stopped at a nursery, where I got two dwarf sunflowers and a thyme plant, then we went to a farm stand and got some excellent peaches, peach jam, cantaloupe, and tomatoes. We each ate a sweet, juicy peach in the parking lot before picking up some Chinese takeout for lunch and following it up with frozen custard and Italian ice at Rita’s. It was a nice outing and kind of therapeutic to spend so much time outside.

We brought home some extra fortune cookies and gave one of them to North. It said their luck was about to change.

“That could be good or bad,” I observed, but given that they’ve been on crutches since February, our country’s been in the grip of a pandemic since March, and a cat they loved dearly just died, we decided to read it as a good sign.

RIP, Matthew Simon
Circa February 14, 2003-July 3, 2020

He was a beautiful cat and more than a little neurotic, he loved to play with lanyards, which I think he pretended were snakes, and he was a good mouser, even in old age. We will miss him very much.