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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.