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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!

Vincie is in Portland for the weekend with his Coffee Center research group attending a coffee conference (who knew?) and presenting a poster. We were talking a few weeks ago about what there is to do in Portland. Maybe Powell’s, the renowned independent bookstore? Or the Pearl District for nice dim sum? But instead we get a late night text of his right ear sporting new piercings. Haha. Did I tell you when Jeremy and I fell in love, he had seven earrings in one ear and a shaved head and I also had a shaved head? We have no photo evidence of this, unfortunately. lol. I just want to say the we were ahead of the times. He’s wearing a mask! Interesting. Did the piercing place want him to wear a mask? Did he want to wear a mask? Unclear.

It was the most gorgeous spring day yesterday. Jeremy biked to work and I pulled this photo up from our shared photostream, but I realized it wasn’t his bike. Is this a bike pulling a trailer? I think it is. Jeremy left at 6:30am and got back at 10:15 pm (he was still in DC at 8 pm which is when I thought he would get home). He biked home in the dark on the C&O canal which freaks me out a little bit, but he made it home and then we couldn’t sleep (this is what always happens when someone comes home late) and we were up in the kitchen at 11:30 at night eating leftover Chinese food and rehashing the day. Elka was very confused, nosing around for food herself.

I luxuriated in a day in the house by myself. I honestly don’t know why I love having the house by myself for hours, because when Jeremy is working from home, we have completely different work areas and we have such a low level of interaction – we don’t even eat lunch together most days, maybe it’s just a taste of before times. But I was in a great mood and got lots of things done.

A lot of things regarding Edda turning 18 are slowly resolving-ish, like she got approved for her Social Security (this took just about a year) and qualified for full adult services when she turns 21. Her aftercare seems steady, though everything still feels tenuous to me. I’m finally starting phone calls with the transition teacher at her school to start the two year process of moving her from school into her adult services situation. Things are still a mess from the pandemic, long waiting lists and full programs and staffing issues, but because I’m in a better place mentally, I feel like I can manage these things without too much trouble. Sometimes I complain that my life is boring, but I’m grateful for the boring life at times, because one knows that life can be exciting, but in the bad way – a lost job, an accident, a tragedy.

RSRT is going to start enrolling children in a gene therapy trial in the fall. Megan, Edda’s teacher, and I were at dinner a few months ago when we talked about what if Edda’s genetic error was erased right now and she had a fully functional genetic material. Could she learn to talk? To hold a fork? Would she be mad? or glad? Or would her brain be overwhelmed? After decades of missing out so much. So much of her body is deformed from not being able to move in the typical ways for so long. Her mouth has been unable to form words for a lifetime. It would be interesting. I wonder what would happen. Perhaps a nice problem to have.

Vince usually asks for very little. For example, he asked for a Costco membership when he turned 21. He really never asks for the latest phone or a new computer or Lego set or video game or airplane tickets or help paying for parking tickets or any random thing-y unless he really needs it and then oftentimes he hesitates to ask. Because of this, both Jeremy and I tend to feel indulgent towards him with little ridiculous gifts and, in turn, he indulges us by participating in our little material desires. Jeremy’s favorite color is orange and there is one bike tire company that comes out with their “color of the year” tire this year it happened to be bright orange and he couldn’t resist buying them for Vince. (I asked Jeremy why he didn’t buy them for himself and his various bikes and it’s because they would be a step down from his tires, but a step up for Vince’s bike in terms of bike tire performance.) Vince obliged by promptly installing them on his bike and snapping a quick photo for us. lol. ridiculousness.

Jeremy went on a long bike ride on Sunday. We are having beautiful days!

Elka is very lucky. Each time Jeremy goes on a long bike ride outside, he rewards himself with ice cream from the shop down the street. He takes Elka with him and she gets a pup pop which she enjoys and devours quickly. Sometimes (rarely, really) when they are out on a walk (without the long bike ride), Elka can persuade Jeremy to go to the ice cream shop to indulge for no other reason than they both love ice cream.

I feel good these days, I’m enjoying feeling happy. When I was younger and went on antidepressants, I often struggled with the feeling of like – am I the real me? when I’m on medication. Or am I the real me when I’m off the medication? But this time, I just don’t care. I’m grateful that the meds pulled me out of my mental funk. I’m old. I just want to enjoy my life. I want to snuggle with my family and feel content.

I hiked with Kristen on Friday – it was a glorious morning! We walked for about 2 hours in the woods together. I have never gone walking with Kristen in the spring, when everything is growing and leafing out. I get excited about spring, but not as excited as Kristen who took photos of every bloom and identified so many plants that I’ve seen forever, but never knew the names.

Kristin is inspiring me to get a nose ring. Which I might do. I talked to Jeremy about it at dinner last night and he laughed and asked why he was laughing and he said it was because it was something that I like to talk about doing, but never would actually do. Haha, I almost made an appointment right then and their at our local piercer, but then they have a big warning sign on their website that I wouldn’t be able to swim for three months. That might be challenging. Maybe it’ll be a winter thing.

Elka living her best life. Her nickname is still appropriately poopyface. I spent the entire walk prying poop from her mouth. Horse, goose, deer, small, large, firm, squishy. It didn’t matter, she grabs them all and holds them gently in her mouth so proud of herself.

OK, let’s wrap this up. We had a light brunch with other out of town guests and then headed to the Vizcaya museum which reminded me endlessly of Encanto. Just waiting for the house to move and bring me a drink. I had to buy a hat at the gift shop here, I’d been going around the Miami sun without a hat all weekend and I couldn’t take it anymore.

Someone fancy had a fancy folding phone! Look at that. I had never seen that before. Samsung.

Jeremy was not idle during the weekend I was away. He and Edda went out with the DC Martins on Saturday night to celebrate Gene and Bette’s 65th wedding anniversary. That might be a stretch goal for us as Jeremy would be 95 and I’d be 91.

Sofie texted me on Friday if she could use our backyard for an egg hunt on Easter sunday. I said of course!, but I forgot to mention it to Jeremy. And Sofie didn’t really tell Mike either – so Ning and Brian and the baby kids showed up and hunted eggs in the backyard and Edda and Jeremy joined them and then Jeremy (who is good at this) threw together an Easter lunch for 8 (though one was not yet onto solid food) with what was in the fridge and pantry.

Elka was happy to meet the baby.

There was fingernail painting.

Too much! Too much!