We are having a very social weekend. I got my haircut, then we went to Austin’s Eagle Court of Honor. He’s in a different troop from Vince’s so it was at a new church and the ceremony was slightly different, so that was fun to see. This may be our last ECoH – Vince is now three years out of scouts and our relationships with the troop gets more gossamer every year.
Edda dressed up and was very happy – so happy that she started “talking” during the ceremony. I grabbed a hot dog bun from the unserved buffet table and started feeding her pea sized bread bits. The ceremony lasted one hot dog buns worth.
Jeremy loves these occasions because it’s the only time he reliably gets to eat sheet cake. We were hoping to fit a shopping trip between eating the sheet cake and our next social obligation, but the ceremony started 30 min late and the sheet cake was slightly delayed in serving. I asked Jeremy if he wanted to skip the cake to go grocery shopping, but he indicated that he wanted to stay for the cake.
We went back home so I could meet up with Megan who really wanted to see Love Again – which very much featured Celine Dion who is her favorite. I did not hear about this movie, but I was very happy to go. I really wish Hollywood would make a great romantic comedy again – I would go to all of them. Instead, they like to make Marvel movies. The movie was fine, not terrible, but the premise was really thin and didn’t really make sense. Megan apparently is very good at this claw game and we spent three dollars trying to win something, but we did not win anything. Next time.
Then we went back home where Jeremy cooked us some dinner and we invited Sofie over to play some board games. We are trying to learn how to play Ticket to Ride. We did not succeed. Also, no one wanted me to take their photo.
Here’s Jeremy at the Capitol building in St. Paul with his friend, the lobbyist. Of course, the word lobbyist comes from the act of waiting in the lobby for legislators to come out so you can talk to them and that’s what Jeremy did for most of Monday. He waited in the lobby with the lobbyist and wore Dave’s wedding tie.
Jeremy, undeterred from our initial light rail experience, keeps riding the light rail even though all the local liberal, public transit oriented people he meets and knows – all tell him they gave up riding the light rail years ago. First, no one wears a suit anymore to anything anywhere and there he is – riding the light rail with his suit. He is literally the only white guy on the train. Yesterday, someone walks by him in the train car and brushes Jeremy’s suited shoulder and says – nice suit – and continues to walk on by.
He ate dinner on his own, in his suit (I presume) and played Pokemon Go on his phone the entire time and as he got up to leave and told the waitress thank you and that the meal was delicious, she answered with a jolly – “Go catch ’em all!” Jeremy is a ridiculous middle aged man.
Jeremy manages to cuddle a puppy who looks exactly like baby Elka.
Someone called me a capybara last week. I had to look that up…they explained that capybaras have a calming presence and other animals enjoy being around them.
There was also a bear roaming the neighborhood who ate about 30 pounds of honey from a backyard beekeeper. They live caught the bear and released it into the wild.
Janet, our regular bus driver since our last bus driver retired, lost the bid for Edda’s route and her last day was on Friday. So we took a picture and bid her farewell and good luck and thanked her for taking care of the kiddos.
After the bus pickup, Jeremy and I flew to Minnesota. I know, most people when they arrange for a weekend away might fly to the Caribbean or a mountain lodge or whatever, but we do not do what most people do. Jeremy has business at the MN state capitol this next week, so we piggybacked on to his business trip to get his flight covered. I was eager to spend time with Dave, our friend from grad school. Jeremy actually did not feel well on this flight, he caught Edda’s cold – she’s had one all week. Not covid – no fever. But we flew and this is the trip that I felt like everything is almost back to pre-pandemic. I could hear sniffling/coughing all around the plane. Jeremy masked (and I did too) for the flight.
We are enthusiastic public transport riders and I’m not easily rattled and I’ve ridden both Boston (regularly) and NYC subways (touristy) way into the night by my-young-ish-self without any issue, but somehow on the light rail in the middle of the day on a Friday in Minneapolis, I felt vulnerable in a way I haven’t before on public transit. I don’t mind the random person sleeping on the chairs or an unshowered person shuffling around with the radio blaring, but when a very strong man walked onto the rail car right in front of me wielding a baseball bat (after he had rattled the bat against the rail car as it went past him on the platform), I thought that if that man decided to swing that bat very hard, it would be difficult for me to move my head out of the way of the arc of impact. I’m not sure what the answer is, but this light rail seemed particularly unrideable and there are a lot of people that need help and somehow we are failing to help each other out. The light rail is so beautiful – new, clean, took us exactly where we wanted to go in a timely manner and I would take it all the time over Ubering, driving or whatever-ing, but I also enjoy not looking at baseball bats that might be swung at my head.
Dave finished work early on Friday afternoon and headed to meet us at our hotel and we went on an outing to Minnehaha Falls which involved 1) ice cream 2) beer and 3) pouring rain. It was predicted to rain all weekend, which was a bummer for being a tourist. So after that, we headed to Dave’s house – well Dave’s mother’s house, where we saw the new basement renovation and Dave’s office and had a long talk with Dave’s mother, Linda, and ate take out burgers stuffed with cheese (apparently a Minnesota thing) called the Juicy Nookie Burger from The Nook where you bite into the burger and the cheese squirts out all over your shirt.
We went to bed early – at our hotel which was a converted convent which was a bit spooky, but also nice. On Saturday – it was still raining and me, Jeremy, Dave and Linda went to Key’s breakfast place, where we ate an enormous delicious breakfast and then Linda went home and we went to the American Swedish Institute because Jeremy had forgotten a tie and thought he could buy one at the gift shop, but no one sells any ties anymore and we paid to tour the house because Dave is 25% swedish and he’d never been. As we were paying for the tickets to the house, Jeremy and I both had to admit (me obviously and Jeremy less so) that Dave was the only Swede in the group and the kind lady said – we let everyone into the house – even the Norwegians and Dave piped up and said – well, I left out that I’m 50% Norwegian and we had a laugh.
And then we dropped Jeremy off at the hotel because he was still sick and wanted to rest. Dave and I went to a flour mill museum (which was fun, we were still trying to find a gift shop tie for Jeremy – no luck) in which we saw the ruins of a flour mill which had had a flour dust explosion. We walked along a pedestrian bridge where we discussed the falls in the middle of town. Then we went to TJ Maxx (to find a tie – no luck again) and a grocery store to find Diet Coke. Dave is very funny and I had a lot of fun laughing at random things Dave said – the same way we did in graduate school almost 30 years ago now.
Then we went back to Dave’s house where his mom had been hanging out and we chatted all afternoon laughing/telling stories and finding Dave’s old ties. Then Linda and I decided that we were friends and gave each other our phone numbers to text each other – thereby bypassing Dave completely if we want to talk to each other. We picked Jeremy up from the hotel – Jeremy picked out one of Dave’s ties which he wore to his sister’s (middle sister – he has three) wedding. We were going to go to a fancy restaurant for dinner because Dave got a $200 gift card for shoveling someone’s driveway (in Minnesota – that is no small task) and because – you know, for a romantic getaway, shouldn’t there be a fancy dinner with Dave (who was there on both our first and second dates (he reminded us)), but we were delinquent and did not reserve the table fast enough and they were booked until 9:15 pm whis is when we all wanted to be asleep. So we had the local take out pizza, a salad that we made and a small bundt cake. And that was fun too. I slept well and late – like until 8am EST.
We left Edda in the care of Ginny who spent Saturday with Edda and her family in a local park/swimming area where they ordered good food and ate well and enjoyed the great outdoors.
Seni, Ginny’s son, took care of Elka. They seem to really like each other, no?
Edda stumbled through the day yesterday – refusing to eat at school and then eating a bunch of her lunch at aftercare. There was suppose to be the regular community outing, but they held her back at school for that. When we got her home, we took her temp (normal) and tested her for covid (negative) and set about trying to feed her. She was really worn out, tired. Again, dinner was a bit of a trial and then we decided to go dessert first again and that worked well. Cake and ice cream alternating with scoops of yogurt laced with Keppra and Trileptal. As I put her on the bus this morning, I felt like she was going to have another seizure today – it’s hard to explain, but I felt that one of her eyeballs was not behaving as it usually does. Fingers crossed she has a good day today.
It has been a terrifying few days in Davis for Vince. There have been two stabbing murders over the weekend (one victim was a senior at UC Davis majoring in compsci that Vince knew). I thought they had apprehended the assailant by Sunday night/Monday day, but then there was a third stabbing early Tuesday morning, sending the campus into a lockdown situation. I don’t think they’ve caught anyone yet. They did lift the shelter-in-place warning, but I’m not sure how many people are moving around campus.
The weekend was a mixed bag. No photos! I’m not very good at photos anymore. We had a lovely Friday night with Mike and Sofie where we went out for ramen at Pike and Rose and then Sofie and I spent the rest of the evening playing the cooperative board game Pandemic (all the players against the pandemic) which I haven’t pulled for many years given that we were living it in real life and I did not need to play a game of it. And I thought it might still be a bit early for it, but Sofie wanted to play and I had forgotten the rules – it’s a fun game and as was appropriate, the pandemic won and we lost – but even after we lost, we kept trying to play to see if we could win until it was nine pm and we were both tired and gave up and went to bed.
On Saturday, Edda seemed a bit agitated and flushed upon waking, but she had just started her period and seem to recover a bit by lunch. Jeremy was out on a 6 hour bike ride, I was home – working, paying the bills, etc. Eliana was here minding Edda. Edda at first refused lunch, but I gave her a Motrin and she took a long nap and Eliana managed to feed her her entire lunch before she left at 3 pm.
Jeremy got home, triumphant in his over 100 mile bike ride and settled into make dinner. Edda and I were at the table waiting for Jeremy to bring out the food when we both saw her go into quite a strong seizure – the first daytime seizure that we’ve seen in a few years. She appeared to have been biting her tongue repeatedly and so we held her until she calmed and then let her rest while we ate dinner. She, obviously, did not want to eat dinner, but we tried to coax at least her seizure medication down her which we were mostly unsuccessful in doing.
On Sunday, it was just the three of us (four if you include Elka) and we probably spent 4 hours trying to feed Edda mostly trying to get the medications into her to try to stave off any more seizures. Was it an injured tongue? Did she have a sore throat which was what I thought was happening before the seizure? Was she just in an uncooperative mood? Unclear. We managed to get the morning meds into her after a few hours. Lunch, I kind of offered a bit, but gave up after a while. Dinner – we had DC Martins dinner at our house – and Edda was still reluctant to eat until dessert when she enthusiastically ate the cake and ice cream and then went backwards to eat the main meal by the time everyone was ready to head home. I was happy that she ate most of the meds and then ate a full meal and then as I was getting her ready for a shower, she pooped. So, a triumphant Edda day – post seizure recovery.
Both Jeremy and I agree that the seizures are changing a bit. It used to be that there was no aura before the seizures and this time, I felt like it was an all day aura that was trying to tell us that a seizure was going to happen. She does get a few seizures at night and Jeremy pays more attention to those than I do and he reported that he now does often see the entire seizure because Edda does vocalize a “warning” now whereas before he often only saw the tail end of the seizures.
I have a feeling that either the nature of the seizures change or else the meds lose their efficacy after a bit, so I sighed thinking that we may have to change the meds that she’s on soon. I don’t want to do this while we are initiating the Daybue medication, but it may be what we have to do.
I’ve been in touch with the Daybue company and we’ve filed all the paperwork to trial it. We are just waiting to see what insurance will approve.
Other than the Edda seizure – I had a nice weekend. I worked a bunch, I played some music, I did laundry. It was raining, so not much to do outside. I’m actually a bit bored. I’m waiting to see what is next. I’m trying different things until something sticks. In the meantime, I’m trying to enjoy being less busy.
So I’m about 4 weeks into my new position at work which entails many hours on zoom calls (actually it’s Microsoft Teams). I’m not sure how I managed to work though the pandemic and not be familiar with zoom, but neither of my jobs required any zoom calls. So one of the reasons I shifted responsibility at work was to get some experience holding meetings on Teams. I feel ridiculous even saying that because if you asked anyone else, even my children, they would all be very familiar with doing this now. I tend to not like FaceTime, preferring just voice calling – so the whole video thing is not something I’m used to.
I haven’t really had regular professional meetings in over 15 years (maybe 20?) in which there are more than 5 or 6 people trying to work together to solve a problem. I have become a very independent worker, not even really relying on my colleagues really for very much.
I like it as a work tool, I feel like it’s a little more egalitarian on Teams than in person. There is a line to speak, everyone speaks in turn, people seem to more understand to not dominate the meeting (though it still happens). Everyone is kind of the same size and occupies the same mental space on the little grid. Of course, it’s very convenient and we are all in our homes only feet from our beds/kids/snacks/FedEx delivery/etc. But the meetings tend to bleed because you can still chat on the chat box after the meeting has adjourned and people do this for hours after the meeting has ended. I’m not great at keeping tabs of the chat and the voices of the meetings at the same time. So I miss small asides during the meeting.
Sometimes I feel like an old grumpy person, not transitioning well to this new way of working. hahaha. nah, I’m ok. It’s fine, gotta go to a zoom meeting. See y’all later.
Look at this gorgeousness. Jeremy is trying to make it into the office at least once a week now that the days are longer and the weather is better. When he does this, it’s like he’s one my old nursing schedule – out of the house by 6 or 6:30, home between 8:00 to 10:00 pm depending on whether he has dinner in the city or not. As I’ve mentioned 10,000x before, Jeremy and I spend entirely too much time together and we are trying to figure out how to spend less time together. He had a nice day in DC, I had a semi-productive day in Rockville. Of course, my main companion during the day was Elka – you you better believe I spent the day just kissing the dog.
I will now (self-consciously and embarrassingly) reveal what happened to our house during the pandemic. Both Jeremy and I really got into working out a lot during the pandemic – Jeremy was biking upwards of 20 hours a week and added strength training to his routine. I eventually trained for a marathon after all the nursing stuff calmed down and primarily trained during the week on the treadmill and on the weekends either at the canal or in the woods. To support this insane level of attention to our physical fitness, we did end up buying: a treadmill, a bicycle “treadmill”, an enormous weight lifting rack, a bench (two benches actually after we outgrew the first bench), a bunch of weights, flooring and yoga supplies galore. Jeremy paid for a few (maybe only one) bike coaching sessions and got a strength coach. I kept working out with Paul coaching me on running and I did yoga through the Peloton program. Of course, now life is busier and we both are exercising much less. Jeremy’s work is much more involved and more satisfying to him. I’m working through my mid-life crisis of sorts, and though I dropped the nursing, I’m easily picking up more social engagements and outings with friends and, frankly, I just want to rest more. But we are still exercising and spending a lot of time in this room. Jeremy’s strength coach (Julie) is coaching me now and I’m happily moving through bench presses and front squats and various strength-y things and the running is more in the background. I actually talked to both Julie and Paul on the same day (not at the same time) and tried to figure out the seasonality of strength training and running because I feel like I can’t really train on both at the same time (I tried during the first quarter of 2023 because I didn’t really want to give up my running fitness), so now I’m pretty much doing strength training 3x a week and just adding a 20 min run/jog at the end of the strength session and the other 4 days I’m stretching or doing some yoga or gasp, nothing. hahaha. If you had asked me 10 years ago if I would dedicated prime real estate in my house to a squat rack, I would have said that you were absolutely insane. I’m an incredibly mediocre athlete (often times bringing up the rear in anything that tracks this sort of thing), but I’m so grateful that my body moves well and I’m able to work hard and see progress. Not everyone gets to have that.
It was a busy, social weekend. Though I still feel the repercussions of the pandemic in many psychological ways, we are getting used to going out now. Though I think Jeremy still wears a mask when he’s grocery shopping. Jeremy, Dara, Brian and Mike went out for a “guys night out” on Saturday night which involved beer, race car driving (?), axe throwing and steak. Turns out Mike is quite the aggressive driver when given a chance. This is not Jeremy’s natural environment, but he admitted that he had a good time.
While they were out, Sofie came over and we (including Edda) watched Quantumania (which was a bad movie) and had Chinese take out and then baked a cake and started watching Black Panther: Wakanda Forever (which is a much better movie and I’m still only 1/2 done with it). The cake was a Guiness cake and it turned out delicious, but there was a mysterious crater that formed in the center upon cooling which formed even though the cake was 100% done.
I also spent time trying to French braid Sofie’s hair.
On Sunday, I drove out to Annapolis to see Dominique and we had a long and wide ranging conversation about the state of the Rett community now. When Edda was newly diagnosed, I was more involved in the community and the internet was just a baby then, so it was interesting to hear about how the young families are more connected and have many more resources than I did when Edda was younger. It was so hard for me for at least 5 years after Edda was diagnosed (like unbearable to live each day, to open my eyes each morning and face another day), sometimes the families in the chat rooms and/or on Facebook made it worse. It’s a complicated thing, like trying to fit a wet noodle into straw. You can kind of see how it would work and be a simple thing, but also it’s hard to do. This metaphor makes no sense. I loved that I wasn’t alone, but also it felt like there was so much I was supposed to be doing that I wasn’t doing. Anyways, everyone mothers in a different way and I have my own way of mothering, but when I see someone else’s mothering methods I can get off course with what I feel in my core. Does that make any sense? And if you feel like the stakes seem high with your typical kiddos, it seems weirdly higher with your disabled kiddos because you’ve lost so much already. Honestly, I’m a little lazy with mothering. Maybe lazy is the wrong word. Lazy implies not caring. I do care! I care a lot. Laissez-faire? That’s too French and pretentious. Vince! What’s the right word for how I mother? I view my position as a mother as a safe harbor to return to if you are having a hard time or if you are having a great time. Sometimes it’s hard to share either/both to other people because of various circumstances. I try to let you be as person – you are your own person and have your own life and your own destiny. I believe this for Vince and Edda.
On Sunday night, I reunited with Pat and we went to the Kennedy Center to see Les Miserables. I know this music so well from the original Broadway cast recording. It was one of the 2-3 albums I had on cassette tape in the late 80s and I played it 10,000 times in high school. I’ve never seen the play in person and I really wasn’t intending to go, but Pat had an extra ticket, so I got to go! It was glorious and omg, the singing was amazing and I was thrilled. Sometimes it is unbelievable what people can do. Those voices!
