About Steph

Your author, part-time, work-at-home writer.

Sky Full of Stars: Coronavirus Chronicles, Part 26

Well, that was a wild ride, wasn’t it? I mean a four-day wait to find out who won the Election shouldn’t seem that long when I lived through five tense, stressful, and eventually heartbreaking weeks to see who won the 2000 election. But that was twenty years ago and while the stakes in the Bush/Gore contest seemed high at the time, we had no idea how high they could get.  It’s satisfying that the baby I was pregnant with back then just voted in his first Presidential election and that it was such a momentous one.

I had to think hard about what to serve for dinner on Election night. In 2016, we had tacos—because of the memes about taco trucks on every corner if Clinton won—and I have not eaten a taco since then, much to North’s distress because they really like tacos. (I did consent to make them on their birthday every year since, though I always ate something else.) North advised me not to make anything anyone particularly liked. Then I was listening to a podcast about the history of voting in the U.S. and I learned that George Washington, when he was running for local office in Virginia, used to throw big parties to sway his neighbors to vote for him. This was in the days of voice voting, so he’d know how his guests had voted after he fed them. Anyway, one of his favorite things to serve was barbequed beef and corn pudding. Now I do like barbequed seitan, but I thought since it was a food choice that wasn’t inspired by this particular election, if Biden lost, I wouldn’t have such a strong negative association so I chanced it. And corn pudding is not in my regular rotation, so there was no real risk there.

Dessert was more obvious. Tuesday was Noah’s half-birthday and we always have cupcakes on the kids’ half-birthdays. This year we had a selection of red velvet and cookies and cream cupcakes from the grocery store. We ate them separately because we ended up splitting into two groups on Election night. North and Beth chose not to watch the returns come in and watched The Fosters instead in hopes that it would be less anxiety-inducing. Noah and I watched MSNBC. He started while I was still doing the dishes and when I came into the living room at 7:20, two states had been called: Indiana for Trump and Vermont for Biden. I won’t go through the blow-by-blow because either you watched it or you didn’t, but either way, you know how it went. By eleven (an hour past my normal bedtime), it was clear it wasn’t going to be decided any time soon and probably not that night, so I went to bed, jittery but holding on to hope. Noah stayed up until 12:30. I woke up around the time Noah was going to bed and checked the count on my phone, but when I woke again at four, I resisted the urge. It was better than four years ago when I was waking up every hour, checking my phone and being sick in the bathroom.

In the morning I heard Beth telling North it wasn’t decided yet but she thought Trump might win a second term. I listened, considering the fact that because of her work, Beth knows on a more granular level than I do what the returns in various places mean, but also considering the fact that Beth has a tendency to catastrophize and trying to weigh these two facts about my wife.

Then something completely unexpected and unrelated to the election happened on Wednesday. North spontaneously regained the ability to urinate normally, after two months of only going through a catheter. We have no idea why it happened, but as North said, it was “a good thing about today.” It’s been five days now and so far, so good. We’re all very happy about this.

And then the days dragged on. We went to bed without knowing the outcome again on Wednesday and then again on Thursday. But as time passed, it began to look better and better. When Biden pulled ahead in Pennsylvania on Friday morning, Beth texted me “Ice Cream Time!!!!!!” This was because we’d saved the emergency/celebratory ice cream until we had an answer and she intended to eat some whatever time of day that happened. North had gone to the bathroom during their Japanese class and walked by our bedroom (where Beth works) and Beth called out to them that Biden had won.

North, still wearing their headset and carrying their laptop, came into the living room (where I work), crying and almost unable to speak, but when they did, they said, “He did it! He won!” This time I was the cautious one, saying the chances were very good but it wasn’t for sure yet.  Beth was on the phone a long time but eventually came down to the basement to fetch the ice cream from the chest freezer. I was on the exercise bike down there and we had a long hug.

We thought it might be called later that morning, but it wasn’t. North finished their Japanese class, and attended History and Biology, while Noah attended Computer Science, Ethnomathematics, and Philosophy and did some work for ICTV, and Beth and I worked and still nothing. North had a tempting one-day-only star offer on their Starbucks app and talked Beth into a Starbucks run. Noah was still in class, so he didn’t come, but we picked up an iced tea lemonade and a cake pop for him.  We got takeout pizza for dinner and watched the first half of Emma, after which Noah and I read a chapter and a half of Quichotte. We were close to finishing the book at ten, but I was exhausted and went to bed.

The next morning, while Beth was off for a long walk in Wheaton Regional Park (which has become a Saturday morning habit for her in recent weeks) and Noah and I were watching The Handmaid’s Tale, she texted me again, no words, just her bitmoji blowing a noisemaker, surrounded by confetti. I knew what it meant. The race had been called for Biden.

That afternoon, we went on a family outing. We went to Catoctin Creek Park in Frederick County, which is further from home than we usually go, but it had a couple things to recommend it. There was a paved loop trail, which was convenient because North’s been having more pain the past several days and wanted to use the wheelchair. And it’s near Catoctin Mountain Orchard, which has a farm market with a lot of baked goods. (We visited it once before, on our way home from a Unitarian retreat in Catoctin Mountain Park last fall.)

As we drove, we counted Biden/Harris signs and Trump/Pence signs. Frederick County is more purple than our home county, Montgomery. (It went 55% for Biden, versus 83%.) Eventually we lost track, as we passed back over some of the same roads, but I think it was pretty even. My main observation was that the Biden signs were somewhat more numerous, but tended to be smaller (and Beth added, not in all caps).

We’d gotten a later start than we intended so we could only spend about forty minutes in the park if we wanted to get to the market before it closed, but that was long enough for Noah to fly his drone, for Beth and me to amble down to a peaceful stretch of the creek surrounded by boulders covered with lichen and trees with yellow leaves glowing in the sunlight, and for everyone to draw joyful noise from the percussion instruments along the trail.

At the farm store we got three pies to freeze for Thanksgiving (pumpkin, pecan, and apple), and some treats to eat over the next few days (apple cider doughnuts, apple dumplings, apple caramel bread, and popcorn). We found a picnic table near a covered bridge and drank cider and ate doughnuts. Even though we’ve been exploring parks in the Maryland suburbs and exurbs ever since Noah got his drone, at first weekly, now more like once a month or so, this outing felt different, suffused with deep relief and joy.

We got home around seven, so dinner was on the late side, but no one was starving after those doughnuts. Noah and I made sauteed gnocchi with Brussels sprouts and brown butter. I think it was really good, but who knows? Anything might have tasted good that day. We’d hoped to finish Emma before watching Vice President Elect Kamala Harris and President Elect Joe Biden give their acceptance speeches, but there wasn’t time, and no one really minded. I don’t need to describe the speeches. You watched, right? You saw Harris looking radiantly happy in her white suit, telling people “While I may be the first woman in this office, I won’t be the last,” and you heard Biden sounding coherent and rational and compassionate.

After the speeches, we watched the sky over Wilmington, Delaware light up in red, white, and blue stars. The country is still in the midst of a pandemic that’s killed 237,618 Americans, economic uncertainty, and what I hope will be a true reckoning with systemic racism. There’s a lot of hard work ahead, and I do still have my worries and sorrows for my country, but at least right now, every now and then I feel as lit up as that sky. I hope you do, too.

Also, tomorrow we’re having tacos for dinner, with blue shells.

Once in a Very Blue Moon: Coronavirus Chronicles, Part 25

So in the end I wrote another twenty postcards to Michigan voters and seventeen to Iowa voters (that last number was how many stamps I had left). I mailed the Iowa batch Friday morning. Time’s up for getting things in the mail and I voted a week and a half ago (via drop box), so all I can do now is wait, but Beth is going to phone bank on Monday night.

We’ve been trying to decide what to do on Election night, as watching the returns come in and not watching the returns come in seem equally impossible. Beth bought “emergency ice cream” and when I asked her if that meant we couldn’t eat it if Biden won, she said then it would be “celebratory ice cream.” What I remember about snacking during the night of the 2018 midterms, though, was that I thought I’d overeat Halloween candy but when it came down to it I was too nervous to eat much at all.

Okay. That’s all I’m going to say about the election. The rest is all Halloween. Though we were all sad about the cancelled parade and costume contest, I think we salvaged a half decent holiday.

On Wednesday night I made soup in a pumpkin. The kids aren’t fans of this soup, which consists of evaporated milk, rye bread crumbs, swiss cheese, onion, mustard, and horseradish, served with chunks of the cooked pumpkin, but Beth and I like it so I make it most years around Halloween and feed the kids canned soup.

Around 5:45 Thursday afternoon, I was asking Noah about his evening plans when he remembered we’d all been invited to the outdoor premiere of the movie he’d been helping some local families make and it was going to start at 6:30. The film is based on The Invention of Hugo Cabret. There’s a group of families that traditionally put on a play around Halloween (not always Halloween-themed), but this year they decided to make it a film, so people could watch it remotely. Noah did some of the filming and lot of the editing. The gathering was just for people who were involved in making the film and their families. After some hurried consultation, we decided Beth and I would go and North would watch the film later. The screening took place on the deck of a house. There wasn’t room for people to stand six feet apart, but I managed at least three feet most of the time and everyone was masked. After the screening, there was carrot cake and a little awards ceremony. Noah got a statuette that said “Miracle Editor.” When the director presented him with it, she said he’d made “a silk purse out of a sow’s ear,” working under tight deadlines without a lot of direction. It was a fun event and it’s always nice to see your kids recognized, so I’m glad we made it, even if I was little nervous about the contact.

Here’s the film, if you’d like to watch it. It’s thirteen minutes long.

When we got home, the cinematic fun continued.  We watched a series of vintage short horror films the city of Takoma Park was screening, while decorating paper bags with Halloween-themed stickers and filling them with candy, stickers, stamps, and temporary tattoos. The first film was from 1896 and consisted a thirty seconds of a dancing skeleton, whose pieces come apart and then reassemble. We watched a about an hour and fifteen minutes of films, ending with a 1912 version of Dr. Jekyll and Mr. Hyde. In that span of sixteen years there was a lot of innovation in how to tell a story on film, including the introduction of intertitles to provide dialogue or explanations of what’s going on. In the earlier films, it’s often a little hard to follow the plot. In a funny coincidence, a lot of the films were by George Méliès, who is character in Hugo’s Cabret’s Big Fix. When The House of the Devil (by Méliès) started, Noah said, “I’ve seen this.” When I asked when, he said in his sixth grade media class. It was this class that got Noah interested in silent film. (I remember one night when he was eleven, he showed us several of his favorites. I probably should have had an inkling then that he’d be a film buff.)

Friday night AFI was screening Nosferatu and that was also fun, especially since we’d just watched Dracula the week before and Beth and I had an interesting conversation comparing the two afterward. I have a soft spot for classic horror, so it was nice to watch so much of it this month.

In other Halloween observances, we did decide to enter the yard decoration photo contest and we didn’t win, but those are the breaks. Our letter carrier told me that we have the best yard on his route, so there’s that. On Halloween afternoon I had Noah set up his tripod so we could get a picture of all of us in the Halloween masks Beth made and we’ve all been wearing for the past few weeks, since they probably won’t be getting much more use (unless we still need them next year). North had a seizure during the mask photo shoot and fell to the grass, which seemed to encapsulate the year we’ve been having. (By the way, the brain MRI came back normal.)

Noah and I watched Rosemary’s Baby that same afternoon, which was fun. He decided not to accompany North (dressed as a galaxy) and Zoë (dressed as Hawaiian Punch—a Hawaiian shirt and a boxing glove) trick-or-treating, but North did fine with the walker and didn’t need the wheelchair.  They came home with just a little less candy than a usual year, though they had to walk a long way to get it because there were fewer houses giving out candy.

Back at home, Beth, Noah, and I set up our candy table and took turns supervising it from five to nine. We decided to have only six bags of candy out at a time in case anyone got the idea to grab it all. (One teenager did make off with four, which made me wonder, if you’re going to be greedy, why not just take them all? I mean, the karma wouldn’t be much worse.) After every group of trick-or-treaters, we’d restock the table. I didn’t expect anyone in the first hour, but we started getting customers pretty soon after we were set up. During my shifts, I saw a couple Power Rangers, skeletons, and kids in Scream masks, Bat Girl, a hunchback, a devil and angel, and a unicorn with a light-up rainbow horn. At least half the time, though, I couldn’t make out what the costumes were because it was dark and I was on the porch, probably about ten feet from the table. That was a little sad because seeing the kids’ costumes is one of my favorite parts of Halloween. Some of the kids were perplexed by the bags because they couldn’t see what was inside, and that led to their exasperated parents saying things like, “Just take the one you already touched.”

By 8:05, we were down to five bags of candy and I thought we might run out, so I bagged some more candy in undecorated sandwich baggies, but we didn’t need to put them on the table. There were only two more trick-or-treaters before we closed up shop a bit after nine.

North came home a little after nine and put a mason jar of water outside in the moonlight to make moon water because in addition to being Halloween, it was also a full moon, and a blue moon to boot. That hasn’t happened since 1944 and won’t happen again until 2039. This unique Halloween wasn’t all bad—it was actually pretty good considering—but given the reasons we were all avoiding crowded parades and close contact with dressed up neighbor children seeking candy, I wouldn’t mind not having another like it for a long time. Once in a very blue moon is plenty.

Moon photo credit: Gretchen Weigel Doughty

Things Frightful and Hopeful: Coronavirus Chronicles, Part 24

Do you need a little break from sickening dread about the coming election or is that just me? I mean the polls look good, both for the Presidential race and the Senate, but I can’t quite trust them after the last time.  I’ve been churning out postcards to voters, mailing one hundred to Pennsylvania, sixty to Florida, and twenty to South Carolina in just the past week. Noah and I watched the final debate on Thursday. Beth couldn’t bear to do it but I watched all but the dueling town halls, mostly with Noah (He skipped the vice presidential debate and missed the fly.) And I voted on Wednesday, so there’s not much else I can do, unless I find time for more postcards before they stop giving out addresses, which I imagine will be soon.

Well, if you do need that aforementioned break, this will be a post about our Halloween preparations and not much else, if I can help it. (I don’t even have any medical news to report, other than that North had the brain MRI a little over a week ago, but we haven’t gotten the results yet.)

It’s going to be a strange, somewhat austere Halloween, with no parade, no costume contest, and curtailed trick-or-treating. The city arranged some alternate activities but they are mostly online. There’s a Walk and Chalk event on the afternoon of Halloween which I think might be kind of like a parade, but more dispersed, with people in costume strolling down the street during a two-hour stretch but not all marching in the same direction at the same time. I’m a little less clear on the chalk part, but it involves drawing on the street.

I thought it might be fun to go and see other people’s costumes and if I had younger kids I might have pitched it harder, but North wasn’t interested, because they’d chosen a costume that will be covered in glow-in-the-dark paint and not that impressive in daylight. (They are going to be a galaxy.) Noah’s not making a costume this year. Without the contest it’s not the same. Well, he’s probably not. North and Zoë are planning to trick or treat, but only at houses where people have set candy out. They’ve been instructed not to knock on doors. I’m not sure how many people are going to do this, but it’s what we plan to do, and North’s trying to enlist Noah to push the wheelchair so if he goes with them he might come up with a costume or he might just go without one.

Anyway, this is what we have done this month to mark one of our favorite holidays: we made cookies with our Halloween cookie cutters and frosted them, we went to our usual farm to get pumpkins for our jack o’ lanterns, and we carved them.

We made the cookies about a week and a half ago on a Thursday, because that’s our designated family activity night. It couldn’t all be done in one evening, though, so earlier in the day North made the dough and cut most of the cookies, with Noah and me pitching in a little bit, too. North also made the frosting and then both kids tinkered with the food dye to get just the right shades of orange, green, purple, and gray, while I did the dinner and cookie dishes. The actual frosting and decorating was an all-hands-on-deck project. The cookies were a little brittle so we had a bunch of broken bits, but we frosted those, too.

When we finished making the cookies, I said to Noah, “It’s nice to have you here for this but I hope next year you’re not here.”

“Me, too,” he said. (I think we may have had the exact same exchange when we dyed Easter eggs.)

We got our pumpkins last Sunday. This was something else we never expected to do with Noah again, and it felt like a small, bittersweet gift. We drove out to Northern Virginia, to our traditional farm stand, making surprisingly good time. Apparently, when there’s almost no traffic it only takes a half hour to get there, though some years it’s taken us over an hour. There weren’t as many pumpkins on the pallets as usual, and some of them had moldy spots. Possibly this should have given us pause, but there seemed to be more than enough to find four good jack o’ lantern candidates and a big white pumpkin to cover with little metal spiders. We also got several little pumpkins for Noah’s, North’s and my desks, freshy pressed cider, pear butter, and pickled vegetables. For the past few years this outing has involved dinner at Sunflower, a vegetarian Chinese restaurant, and Dessert Story, where we’d get bubble tea or macarons or cheesecake or waffle sundaes. We did get a feast from Sunflower and ate it in a nearby park, but sadly, Dessert Story has gone out of business, a victim, perhaps, of the pandemic.

After eating we wandered around the park a bit. Behind the mansion we found some community garden plots where tomatoes, cucumbers, squash, and flowers were flourishing. Noah had brought his drone, but it turned out we were too close to D.C. or maybe the airport so it wouldn’t take off, just displayed a restricted message. It’s too bad because it would have been fun to see the little gardens from above.

We drove back to Takoma got dessert from Mark’s Kitchen and ate it at one of the picnic tables near the gazebo. I got my favorite early fall dessert, the gingerbread sundae. They were out of the ginger sauce, so it was just vanilla ice cream and whipped cream on gingerbread, but it was still good. The whole outing was highly satisfactory.

During the past few weeks, we’ve also watched Young Frankenstein, It’s the Great Pumpkin, Charlie Brown, and Dracula (the 1931 Tod Browning version). The Peanuts special we watch every year. The films are special favorites of mine so it was treat to watch them this year. I’ve loved Young Frankenstein since I was younger than North (though I admit parts of it have not aged well). When I taught a college class on horror, I used to do a Frankenstein unit that consisted of the novel, the 1931 James Whale film, Bride of Frankenstein, and Young Frankenstein. We also read Dracula in that class and while I didn’t teach the film, I always had a few students writing research papers on it, so it was familiar and nostalgic as well.

Last night we carved pumpkins. We got takeout from Chipotle for dinner because there was  a fundraiser for North’s school that night and it made for a quick dinner before the carving. When we lifted them from the porch wall where they’d been waiting almost a week we were alarmed to discover three of the four had soft spots that weren’t there when we bought them, and two of them had rotten bottoms. But we persevered. My pumpkin is the political one. Beth’s is the flaming skull and the kids did the witches (Noah’s is on the left and North’s is on the right). As I said when I posted the picture on Facebook, they represent things frightful and hopeful.

As we were finishing up, Noah said cheerfully, “I hope I’m not here for this next year” and we discussed whether he could carve a jack o’ lantern in Australia, and decided probably not as it would be spring there and pumpkins would not be in season. Then I told the story of how the fall of my junior year of college I was studying abroad at the University of Córdoba and the Spanish students in my dorm got the idea to throw a Halloween party for the Americans, but as they weren’t that attached to the actual date of the holiday, it kept getting delayed and didn’t happen until mid-November. The kids thought this was pretty funny.

When we’d finished carving, Beth had the idea to slice the soft bottoms off her pumpkin and mine and replace them with foil so the rot wouldn’t spread as quickly. We also spread petroleum jelly on the cut surfaces to protect them. These are the tricks you learn when you live somewhere where it sometimes gets almost up to eighty degrees in late October, as it did several days last week. Fortunately, it’s not supposed to get warmer than the mid-sixties next week. Fingers crossed the jack o’ lanterns will last a week.

We are not finished celebrating. Friday night AFI is going to stream Nosferatu and we’re going to watch it. The yard decoration isn’t complete—the project stalled for a while but I’m hoping to work on it soon. The recreation department is having a photo contest for best yard. We could enter and given how over the top our yard usually is, it seems we should. I hesitate only because I’ve always found it hard to capture the overall effect in one photo and you can only enter one. I actually wrote the rec department to see if a short video panning the yard would be accepted. (I haven’t heard back yet.) One nice addition we have this year is the set of solar-powered colored lights we have to spotlight certain areas of the yard in purple, green, and red.

And of course, we’ll also be giving out and collecting candy (in a socially distanced fashion) on the big night. We’re going to set up a table at the front gate with little goody bags of candy so people don’t have to reach into a communal bowl. We’ll sit on the porch and watch so we can see the kids’ costumes (and so no one gets the idea to swipe all the candy at once). I hope you all have a very happy Halloween, with just the right amount of fright and hope.

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.

Report from the Fourth Quarantine: Coronavirus Chronicles, Part 19

After the first forty days of our new pandemic lives, and then again after eighty, I wrote posts marking off each traditional forty-day period for a quarantine with lists of forty things. I skipped one hundred twenty days because that was the week after North stopped walking and was hospitalized and it wasn’t a good day for me to write or for Beth to post. (It’s true—I am so tech-challenged I don’t post my own blog.)

I missed the one hundred sixtieth day, too, but it was only yesterday, so I’m plowing ahead with forty things about the past week:

  1. On Monday, North and I made an unbirthday cake because it wasn’t anyone’s birthday. I did this five years ago on a whim and North still talks about it so I thought it might be cheering to do it again. The cake was red velvet with cream cheese frosting.
  2. There wasn’t room for the leftovers in the fridge, so I left the partially eaten cake in the oven and forgot it was there while I was preheating it the next day to roast eggplant, but I remembered pretty early in the preheating process and the frosting just got a little runny.
  3. However, the next day when I was preheating the oven again for roast cauliflower, I left it in longer. The crumbs on the empty part of the pan burned, but the cake didn’t, and the frosting actually acquired a pleasant toasted marshmallow taste, so all was not lost. I do think it’s a good demonstration of how preoccupied I am these days. Fortunately we finished the cake on the third night, or who knows what would have happened to it?
  4. Tuesday we got notice that Ithaca College is going completely online for the fall semester. This wasn’t a complete surprise, given what’s going on at other colleges and universities that have opened for in-person classes and had to shut down. I’m not critical of the school’s decision, but I am sad for Noah.
  5. He’d been tracking Maryland’s numbers, which have been trending in the right direction to get off New York State quarantine list, so I think he was hoping to be allowed back on campus. We all have mixed feelings, of course, but it seems no matter what, he isn’t going to have a normal college experience, at least not in the first two years.
  6. On Wednesday North had their longest seizure ever. It lasted more than an hour and a half and sent us to the emergency room.
  7. For several days before this, they’d been having one to three of what we now think of as the medium-length seizures a day, the ones that last around five minutes. (Since then they’ve increased and yesterday they had six.)
  8. When I got home from my morning walk a little before eleven, Beth was sitting with North, whom she’d found seizing. When it had been going on for at least ten minutes (North later told us it was closer to twenty or thirty) we called 911, for the second time in a week and a half.
  9. When the paramedics got there, one of them remembered North. This isn’t something any mother wants.
  10. This time we didn’t get a choice of hospital—we went to the closest one. Given that the last time we called 911, the paramedics weren’t even sure we should go to the hospital, this made it seem more serious.
  11. As we did last time, I rode in the ambulance, but in the front this time, not because I asked to, but because there were a lot of medical personnel in back with North. Meanwhile Beth followed us to the hospital in the car and waited outside. North got two anti-convulsant shots in the ambulance.
  12. When we arrived, there were so many people crowded around North in the tiny exam room that there wasn’t room for me and I had to stand in the hall answering intake questions for people with clipboards.
  13. Eventually, people cleared out. When I got in the room, North had an IV with a different kind of anti-seizure medicine, and eventually they started to recover, though they’d intermittently slip back into smaller seizures. It was sort of like a series of aftershocks. It was 12:20 by the time they stopped all together.
  14. Beth brought North’s stuffed monkey Muffin from home and had a nurse bring it to them. He was conscientious about wearing a mask.
  15. North got their second covid test of the summer and it was negative.
  16. We were there until three o’clock and several times various people told us we would probably be transferred to Children’s. As bad as the experience was, Beth, North, and I were all thinking that maybe it could be the impetus for more timely scans. We already had an EEG scheduled for the first week of September, but we were all hoping for answers sooner.
  17. ER visits have a kind of rhythm to them, in my experience, and once it seemed we were in the wait-alone-a-long-time part, it was hours past lunch time, so I decided—with North’s encouragement—to go see if I could find us some food.
  18. It took me a while and a number of redirects from passersby but eventually I found the coffee shop where I bought yogurt, grapes, Cheetos, and an iced latte. The cafeteria was in sight of the coffee shop but I was in hurry to get back because North was alone so I thought we could get by with what I bought.
  19. I got lost again getting back to the ER and had to exit the building because some doors are blocked off now to stop people from circulating as freely through the building as they did pre-covid. I ran into Beth, sitting outside the main entrance, so I gave her an update. (Of course, we’d been texting the whole time.)
  20. Beth had North’s phone she’d brought from home and she let me know that Zoë, who was supposed to come over that afternoon and had knocked on the door only to have no one answer, had been calling. Beth filled Zoë in.
  21. When I got back to North’s room, they had a balloon and a teddy bear and some hard candies, which had been delivered by a social worker. The balloon looked like a cookie and said, “One Tough Cookie.” Apparently the first words the social worker spoke on entering the room was, “I hear you’re one tough cookie.”
  22. This whole interaction reminded me of the volunteers with the heart-shaped balloons in The Hostile Hospital (Series of Unfortunate Events, book eight), but Beth said, even if they had no way of knowing it the balloon’s message is true of most patients, in North’s case, it is.
  23. Shortly after this the doctor came back and told us North was being discharged, not to Children’s but home. We were surprised, and frankly disappointed not be able to get more answers that day. He also advised us not to come back to the ER, but to ride the seizures out at home, no matter how long they are. He seemed to be of the opinion that it wasn’t any of the medication North received that stopped the seizure but that it had burned out on its own and he said medicating a non-epileptic seizure could do more harm than good.
  24. All the medical professionals we’ve seen suspect North’s seizures are non-epileptic, which seems to cause a lot of them to lose interest. Beth really had to advocate to get the EEG we do have scheduled. When telling us North wasn’t being transferred to Children’s, the doctor actually said “It would be a waste of a transport.”
  25. The next day Beth went to work trying to get an EEG before September. Both our pediatrician’s office and North’s psychiatrist have been working their contacts to find us a bed at either Children’s or Georgetown. We’ll take whatever we can get first. Among other reasons, we need an official diagnosis before the school system will even begin to talk to us about accommodations and it’s clear North is going to need some.
  26. In the meantime, we made some changes at home. We stopped leaving North alone except to go to the bathroom and they’ve been sleeping in Beth’s and my bed with Beth while I sleep in their bed. They are not crazy about the lack of privacy. (And today we relented a little, leaving them in alone in a safe position in our bed for a half hour or so. They did have a seizure during that time, but they didn’t fall off the bed so I guess the experiment was a success.)
  27. So, life goes on. Thursday it was North’s turn to pick the weekly after dinner family activity so we had a faux campfire, with microwave s’mores, votive candles on the patio table, what stargazing was possible on a cloudy night, and a chorus of crickets and cicadas.
  28. Friday in physical therapy North walked 185 feet with a walker, surprising the physical therapist.
  29. After North got back from PT, my friend Megan and her daughter Talia came over for a socially distanced backyard visit.
  30. We all met twelve years ago when North and Talia were in preschool together. Megan is one of my best friends and North and Talia stayed in touch throughout elementary school because they were on the same rec league basketball team—the Pandas, as long-time readers will remember. After attending different elementary and middle schools, they will be at the same high school, and North thought it would be nice to get re-acquainted.
  31. It was nice. I positioned chairs in the backyard in pairs far away enough from each other so that the adults and the teens could have separate, private conversations. This was only my second get-together with a friend since March and it was good to talk in person to an adult other than Beth. It turns out I had a lot to say. I think I monopolized the conversation, but I’m guessing Megan will forgive me.
  32. As for the kids, North said it wasn’t awkward, even though they haven’t seen each other in a few years. Also, we prepared Talia for what North’s seizures are like, but they didn’t have any more than a few seconds long during the visit.
  33. While Megan and Talia were over, we got a phone call from our pediatrician letting us know they were getting closer to scheduling an EEG, and they thought they could get one early next week. Fingers crossed.
  34. Saturday morning, Beth, North and I had a telemedicine appointment with North’s therapist and at the end he offered to write his own letter to the school, in support of accommodations: we want North to be allowed to have their camera off so they’re not seizing online, extra time on assignments if they seize during one, and no penalties for not participating orally if they’ve just seized and can’t speak.
  35. That afternoon we went for an outing at Downs Park in Anne Arundel County. We got Chinese takeout and ate it at a picnic table in the park, then we went for a walk. North alternated between using the walker and the wheelchair. I’d say they walked about half the time, which was encouraging to see.
  36. The park had nice views of the Bay, some wooded trails, an aviary with a red-tailed hawk, a Great Horned owl, and turkey vulture, all injured. The vulture was being rehabilitated to be released, but the other two were permanent residents. (The owl only had one eye so probably didn’t have the depth perception to hunt, Noah guessed.)
  37. While we were there we found a moss-covered stone bench with a plaque saying it was a wishing bench, so of course, we felt compelled to sit on it and make wishes.
  38. I won’t tell you what I wished for because everyone knows if you tell a wish it doesn’t come true. But if I’d had a second wish, it would have been less personal and more political. I bet you can guess what it is.
  39. And speaking of politics, we haven’t been to as many protests as I thought we would this summer, for reasons that are probably obvious, but I’m sorry we weren’t able to make one in support of the post office this weekend. Did you ever think we’d need to protest for the post office? But that’s where we are. For now I’ll have to content myself with writing postcards to voters. I mailed my six hundredth one today, in another batch encouraging Democratic voters in Florida to enroll to vote by mail.
  40. Keep doing whatever you’re doing to help our country weather this dangerous passage and if you have any wishes to spare, send a few our way.

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.