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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.

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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…

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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.