Just regular folks.

Jeremy is leaving on an extended trip this week – two weekends. Everyone is stepping up to help me, thank you – my parents, Megan and Ginny. When Jeremy leaves, I also try to work abbreviated days so I can give myself some grace when it comes to taking over Jeremy’s portion of the household duties – mainly which center around the kitchen – cooking, cleaning, grocery shopping and meal prepping. I don’t often order groceries to be delivered, but I may do that. Elka, in the meantime, seems bereft with the anticipation of Jeremy’s departure. Jeremy spends a long time packing his bicycle for these trips, starting Monday evening for a Friday departure. Each night, Elka stands sentry by the bike area in the house looking at Jeremy packing with head tilted, sad eyes and asking him to please not leave her. Jeremy tries to talk to her and reassure her, but perhaps it makes her more unhappy. Every night, as the bike parts get carefully disassembled and packed, Elka stands as witness to this travesty. What is more clear than a dog’s love? Really nothing. I think, I’ve never done this display of neediness, nor have the children really. Of course, we feel bad for making Jeremy feel guilty, but Elka does not seem to have this check on her emotions.

I have started Edda on a mild stretching routine – at breakfast for a few moments while she is chewing her granola, blueberry and yogurt mix and at night when I tuck her into her bed. (Do I feel guilty everytime I buy blueberries in the winter? Why yes I do, those precious blue orbs that were flown in from some warm place not at all closeby and tenderly not squished. An environmental travesty, I’m sure.) She’s very tight, none of her large joints really have a full range of motion – so we do what we can. When she was two, whenever I did therapy on Edda, I was desperate to see improvement. It made me crazy with grief, the small things I was doing, could I see anything, was anything better? I think about five years after her diagnosis, I decided to stop doing any therapy at home because it was literally driving me crazy – that I was her mom and not her teacher, therapist, doctor, etc. And I let that carry me for a long time until I could find joy again. Because I wasn’t sure I could find it, but I did find it – it took a long time, but most days are joyful and Jeremy and I look at each other and marvel at our good fortune (knock on wood) and I’m generally grateful for everything. Now I stretch her joints, I do look for improvements, but I’m not so frantic about it. Will she lose her ability to walk. Maybe. Will she ever get her elbow flexed again? Maybe. I’m ok living in the sea of possibility. I’m ok with whatever happens. Mostly.

I had a large pile of mail that I hadn’t looked at in about 6 weeks. It was taunting me with its silent marching orders. The tax forms were in there, various bills were in there – unlocked at and unpaid. But yesterday, in a fit of productivity, I ripped them all opened and looked at them and now it is fine. Yes, I’m behind on some things, but it’s all OK.

One last snowfall before spring. This one, hardly anyone paid any attention to as we’ve been through so much snow this year!

I’ve been doing pretty good at staying off of my phone and turning to books, but then I get overambitious and try to read or listen to “serious books” like about the Russian revolution or female fighter pilots or the worst choice ever, the history of 9/11 and then gave up on them all and think I don’t like to read and isn’t it more relaxing to go online and have spent the last few days/weeks online window shopping (jeans), perusing reddit (celebrity gossip), reading the news (boo). Then my mood starts to slide downhill. The rainy, winter-y gloomy days are not helping. I’m trying to recommit to finding cheerful, fun books to read and listen to.

Yesterday, at air pistol league, I met a woman about 10 years older than me and she led the conversation off by telling me about her motorcycle riding. I was like – you ride motorcycles? And she said – oh yes! so much fun! I started when I was 54. Then we veered into motorcycle riding clubs and long distance travel on motorcycles. She’s into Harleys and has ridden to the headquarters in Wisconsin from here for some big Harley anniversary. (Don’t worry, this mid-life crisis hobby carries no interest for me. The equipment is too big and expensive – even bicycling has too much equipment for me – if you could only see all the equipment Jeremy has for his bike hobby.)

Which leads me to Jeremy and his bike hobby – he’s leaving for CA for 10 days on Friday, which means he started messing with his bike packing starting on Monday night. This sent Elka into a tizzy – she knows that Jeremy’s going to leave when he starts messing with his bike. She stands right by him and his bike stand and looks very sad and then follows him around the house and then when he sits down, she snuggles right next to him and licks the nape of his neck, pleading for him to not go. Jeremy keeps looking at Elka and tries to explain that he would take her if he could take her. Poor Elka, she really is a California dog. She does poorly in the cold wet weather, sometimes she just stops in the middle of the sidewalk, neither advancing or retreating in the rain. Paralyzed by the falling rain, she just wishes it was different.

Edda had a regular checkup at CHOP in Philly on Thursday and we made a long weekend out of it. Started on Wed morning when I dropped Elka off at my parents’ house for a house sit. I was there less than 30 seconds when my mom pulled out an entire rotisserie chicken for Elka. Someone was very excited.

On Thursday morning, we drove to CHOP in downtown Philly where it’s always nice to see Eric and his team. Edda’s getting stiffer as she’s getting older, so we’ll try to start her on some muscle relaxant and then stretch her out. She’s has a bad contracture in her right elbow preventing her from flexing it, so we are going to try to keep her other parts loose?

There is a gene therapy that is going to trial this year for Rett and they offered us a spot in the trial, which we turned down. It necessitates being within commuting distance to Philly for about three months, which we theoretically could do, but it also involves drilling a hole in Edda’s head.

After the appointment, which was jolly and fun and very informative, we drove to Katherine and Bob’s house where I got to snuggle with Bunter, my true, anxious love. He’s doing so well! Not so scared of people, most importantly – me.

Jeremy dropped me off at the train in Paoli station near Bob and Katherine’s place and I took it to downtown Philly, then amtrak to downtown DC, then the metro to Rockville and then walked home in time to pickup a ride to a yoga retreat with my friend Kristen. We saw a bunch of familiar faces from last year and enjoyed a quiet weekend. The weather was fabulous, the food delicious.

There was one guy at the yoga retreat which added a nice vibe the the whole thing…as you can see.

After about 5 weeks, I have plateaued to my natural air pistol shooting abilities. I don’t have an air pistol yet, so I’ve been using the club’s pistols during the weekly competitions. The club owns a bunch of Russian-made Baikal IZH-46M which is probably the most affordable & accurate air pistol on the market today. It has a single pump air mechanism, so each time, you load a pellet and then you pump the lever once to compress enough air for the shot. The first two weeks I shot with one where the seals were not completely intact, but I had no idea of this (though the person (Susan) who was showing me the ropes could hear the air not quite right and slightly escaping from unknown places) and my scores were fine, but not exciting to me. Maybe I’d lost my touch, but then Susan found one in the closet with proper seals and I’m doing much better. I won the handicapped rankings two weeks in a row. Very pleased. Though I did not win this week – again because I’m only shooting thirty pellets a week (maybe 10 minutes?). Now I find myself knee deep in air pistol lore – the Baikal is still in production today, but because it is Russian, it’s not available for purchase new in the US. So people look for them on ebay. Do I want to buy a gun off of ebay? I’m not so sure. Do I even want to own a gun? Even if it is a gun that may not be able to kill a squirrel? Also, not sure. I will think about it.

Though I did go on ebay to find a pair of binoculars. I realized that I often could not see where the shot landed on the target – it is dark closer to the bullseye and you can’t see a black hole against a black background. So I needed a pair of binoculars. (Now I did own a pair of binoculars which I hadn’t used in about 20 years, which I clearly remember decluttering, but this is the risk of decluttering that you may get rid of something you want later, but I’m at peace with this. I know this is a luxury, but I decided that I will just buy another one. The vast majority of stuff I get rid of, I never think about again). I wanted a small pair from the 90s for a good price (90s optical glass, I’m so fond of because that’s when I was the most into camera, film, B&W photography – Nikon, Leica, Canon, Zeiss, etc, all those glass things, I love them – which ones were sharper, which ones were more contrast-y, which ones were so expensive and beautiful one could only dream about them, (this was because I was part of the yearbook, which really was a photography club) – we all held our precious cameras and lenses like our little babies cradled next to our bodies – remember no one carried a camera with them all the time in those days except us), so I found this lovely Nikon travel pair for about $30 which I used happily yesterday to excellent effect. It has signs of wear, so I can wonder who owned it before and what they used it for.

The snow was so beautiful this weekend – this is what we woke up to on Monday morning. Edda’s day camp was cancelled, so she hunkered down with us. I’m glad we didn’t get two feet of snow like the northern cities, just enough for a day off and some beauty. Schools are open today and the snow will be gone soon enough with the warmer temperatures.

I spent a lot of time this weekend thinking about the capital campaign for our church. There is a building that really needs to be renovated – it was built in the 60s with no significant renovation since then – the hot water is not working well, the electrical panel is stuffed full with no extra room for solar panels or car charging, the bathrooms are itty-bitty with terrible wheelchair access and they are literally 15 feet away from where we serve the food, the walkways are not accessible by ADA standards. This is going to be probably a 2.5-3 million dollar project and I think I may slowly become the reluctant head of this. Which makes me nervous enough to not sleep well at night. I mean, it’s not only my money – it’s other people’s money and what if they hate it? Like what if I spend all this money and….the bathrooms are too small? Or there isn’t enough storage space? Or…it’s just ugly (I’m not a designer – I’m an engineer, so mainly I just want it to work well, I don’t want to spend money on beauty. I mean, it’s mainly beautiful because it works well. I hate things that look beautiful, but are totally crappy for their intended use). I learn from all the people around me, my parents who have done so much building construction on their own homes, my in-laws who have fundraised for institutional buildings, my husband who loves watching and learning about energy efficient building methods, my daughter who has taught me about accessibility, and my son, who has become the reluctant leader of many things.

Vince had been getting more and more involved with the Graduate Student Association (GSA) at UC Irvine- they want to have parties and get the (introverted) graduate students to get to know one another. There have been a few parties and some issues with having enough money to buy pizza (it is very difficult to attract the mysterious and often hiding species of Graduati discipulus without the display of free food) and the entire time Vince was telling us about the trial and tribulations of the GSA – he was like, I’m not going to run this, I’m not going to run this, I’m not going to run this and the last time we talked about this he said with a big sigh – I’m running it. We voted on the president and everyone else voted for me and I was the only one who voted against myself.

The other big news that we are celebrating this winter is Dani (Vince’s partner’s) acceptance into a funded Master’s program at Oregon State University in food science starting in a few weeks! I’m so happy for them, it has not been an easy year.half since graduation – the job market has been miserable for technical folks, but Dani persevered through many disappointments (along with slogging through many holiday shifts at the Pottery Barn) and this got this wonderful opportunity and we are thrilled. A side effect of this is that Vince and Dani will be living apart for a while and Vince will lose access to Dani’s car, and therefore, will not be able to grocery shop as easily. So we finally bought Vince his graduation gift which is an ebike and he got this weekend. Jeremy bought it from the ebike company, had it shipped to a bike shop where they assembled it and Vince rode there on his non-ebike and picked up this beauty and rode it home and then left his old bicycle for them to tune it up. Vince rides his bike everyday – so we are hoping this will help him grocery shop. I am a little nervous about the fast bike riding (as I alway am with Jeremy as well), but he promised me he’d wear a helmet and the bike is throttled to not go more than 20 mph per CA regulations though it can go 28 mph (yikes!). At least I’m not one of those ski jumping, skeleton zooming, half-pipe watching moms. OMG.

We had a lovely Chinese New Year dinner with my 2nd cousins, the kids seem great. There was Peking duck (delicious) and we ordered our favorite mayonnaise coated fried shrimp with candied walnuts which does not exist at all in any restaurant in China but is a favorite of all of ours. Edda tried on many occasions to push away from the table and slide ever so slightly under the table, so that took a bit of wrestling to calm down.

I am baking a lot and had a good run of cookies this week: This is raspberry salted caramel cookies (all got eaten at choir practice).

This is oatmeal raisin with chocolate chips (all eaten at coffee hour after the service today). I love church because I can bake as much as I want and just eat what I want and then deliver it later to a group of people who each will only eat one! I love it.

In the last few minutes before we fall asleep, we’ve been watching some olympics. I enjoy the biathlon. Jeremy likes the long track speed skating. We’ve both slid away from the judged competitions – like figure skating or half pipe skiing, though we do watch those a little bit. We still don’t really know the rules to curling. Most of the winter olympics looks super scary to me – it’s not entirely relaxing to watch.

Anyways, here are some winter olympics I propose which I might be interested in watching:

1. ice carving (individual & team. speed & long form). you get a block of ice and an an appropriate theme. For example, this year could be “pasta” or “authoritarianism” and see what happens
2. ice fishing (individual & team). includes building the hut on the frozen body of water and camping out there. Do you win for the most fish? or the biggest fish?
3. ice cutting (individual & team) – go out to a frozen lake and cut blocks of ice and haul with your team of horses to an ice house. Most ice harvested in a certain amount of time wins.
4. igloo building (individual & team) – points for both speed and beauty?
5. sock knitting (individual – how would you do a team sock knit? perhaps a relay?)- points for both speed and beauty (this might be very boring to watch and to commentate on, but who knows?)

I regularly have meetings with providers for Edda’s services – some of them are annual, some of them are quarterly, some of them are every 45 days and some of them are monthly – at least none of them are weekly or daily, though I do have paperwork tasks that are both weekly and daily. Often, it seems like after I finish a group of them, I immediately turn around and do another set of them. I do not track them, I just get random emails from random people – time for our check-in! I’m like…didn’t we just check in? And we have the meetings and generally Edda is…the same as she was two weeks ago – two months ago. (A good thing).

Sometimes these meetings can happen without Edda, but often they must happen with Edda (because she is suppose to be her own advocate). I used to try to schedule these outside of her day program hours, but everyone (else) prefers to do it during day program hours – so I trek over to her day program to do many of these meetings which I like (sometimes) because I can say “hi” to her personal aide and say hi to some of Edda’s friends. (I also want to take credit here and say that I protect Jeremy’s time with these meetings and almost never ask him to come unless I deem it critical for his presence. He is grateful and will bring home cookies for me from time to time. He will also say “I’m so lucky” with a big bear hug when I feel sort of put-upon and suggest that he tell me that he’s so lucky to not go to the ten thousand meetings I’ve been to. (Mainly I need him there when I think I’m going to cry or when I think they are going to reduce services or tell me some other bad news bear type of news. He doesn’t cry – he says nice things that smooths things over for everyone.))

Sometimes, at these many meetings, the questions are strange – like “Do you have an emergency plan?” and I’m like, for what? Like a zombie apocalypse? Does anyone have a general emergency plan beyond – run? hide? or in the case of covid, sit on your couch and watch tv? (I know some people are preppers with both food and guns, I’m not one of those people. I know the country is going down, but, like the captain of the Titanic (or in my case, only the co-captain of only my household) , I’m going down with it with the string quartet playing. Not moving to Portugal, not moving to France. I’m not sure this is the emergency plan they had in mind, staying on the sinking ship.) Then the questioner leaned over and said – this is more for people on ventilators or what not and the power goes out. I nod and then I say confidently, “Yes, we have an emergency plan”. And then the questioner asks, “Does Edda approve of the emergency plan?” I tilt my head ever so slightly – like…does this meeting even need to happen? do these questions need to be asked? And I say confidently, “Yes, Edda approves the emergency plan for the zombie apocalypse”. And we both laugh.

I love lighting candles for breakfast and dinner – especially in these winter months when it’s so dark. I usually light only one at at time, but last weekend I came into possession of like 4-5 candles and then I decided that it would take me a lifetime to burn though these – so I’m burning them all at once which feels a little scandalous and dangerous. I feel, not like a zombie, rather like a witch. Witch-y! Did you read Circe? I really enjoyed the entire book, but loved Circe’s ability to be a witch with her plant-y spells. Highly recommend!

Happy Chinese New Year! We celebrated by…doing regular Tuesday things.

I’m in the middle of sourcing a new copier for the church. Our current machine one is not serviceable anymore and is about 8-10 years old and in need of new drums and skips pages and it is trying very hard (go little engine!), but not performing very well (alas, missing the top of the hill).

I first noticed this at choir practice when our choir director squinted at the score copies and semi-cursed at the extra horizontal lines that the copier put in. A regular musical staff has 5 horizontal, evenly spaced lines telling you which note it is. The copier had put in extra lines so now the staff had 6 or 7 irregularly spaced lines and the notes (to him) were willy-nilly and frustrating to read. Was that a F#? or a B flat? Who is to say? (I’m embarrassed that I didn’t notice this before his under-the-breath curse – goes to show you how critical I think the note placement is when I am singing. hahaha.).

So as taking apart and putting together machines is a favorite thing of mine, I went to go look to see if I could clean the glass or replace the drum ordered from ebay or whatever. I watched youtube videos, I poked around the machine, I got toner all over my fingers. I decided that it wasn’t going to be particularly easy or cheap. I talked to one the Director of Congregational Life who said (not that the copier had lines, that was not her main complaint), rather – every Sunday when she went to make Sunday copies – the copier would give her random error messages and then she’d open all the doors, take the toner out, shake it around, close all the doors and then maybe it would work. I asked her – so every Sunday? And she said – yes every Sunday.

So I spent a bunch of time talking to a bunch of people about copiers. A copier is about 10-13K, so there is financing involved and honestly, I do strangely enjoy talking to people about copiers. They seem like fun people. Though it is like buying something you have never seen, never tried out, you can’t really go online and read reviews about them on reddit. Do I want the Canon, Ricoh, Kyocera? I put my hands in the air and shrug. I just want it to work, to be under budget and for people to not be mad at me.

A few days ago, I asked Megan if she was at all interested in fly fishing. She was very apologetically texted back saying she did not like anything to do with water. I’ve been dreaming of fly fishing. A few things fuel my interest 1) I have a strong vision of Brad Pitt (again) standing waist deep in a river dappled with sunlight and casting from the film a River Runs Through It (which I have never seen nor read the book from which it draws its inspiration), 2) a this American Life episode about a young flute player who steals a bunch of dead birds from a British museum to sell the feathers on the feather underground (ebay?) to avid fly tying enthusiasts in order to buy a golden flute and 3) a recent chance meeting with a very fun person with bright pink hair at a party who said – we are a women’s fly fishing group, come join us, we have a lot of fun together (all their trips are waiting list only now, I checked).

Then Megan texted back, I can cheer you on from shore while you fly fish and then I admitted that what I really was to invite her to a fly tying class which can be completely separate from fly fishing and involves absolutely no water. Crafty! I said. (No one likes crafts more than Megan). And she was hooked (lol. see what I did there? punny). Look at this gorgeous fly – I can see why some folks want real feathers from real, dead, extinct birds to do this…

We made nothing so lovely. I made a worm from yarn. This worm lure actually has a name: San Juan Worm specifically designed for the San Juan river in New Mexico. Then I got semi-excited because maybe Gila, NM where we often visit is right near the San Juan river….and no. It is not, it is in the complete opposite direction. But there is fishing in the Gila. Anyways, Megan and I had a really fun night tying fake worms to hooks and learning about fly fishing and fly tying.