Author: Doris

The reason I was also tired was because I also decided (after much deliberation) to take on a leadership position at the church (three year term – first year VP, second year Pres, third year, past Pres) to run the capital campaign to renovate a significant portion of the church. It needs to be done and whether it gets done, I guess is up to me. Because of this, I now feel the need to be at church when church happens. Right after Edda’s birthday party, in the evening was the biggest social event of the church calendar, the fellowship dinner – for which only I went as Jeremy and Edda were tired (I was tired too, but I got to sit next to the delightful Paulette who made me laugh the whole time). I told Jeremy that for the next few years, the two events absolutely can not fall on the same day – otherwise, I will be dead from overwork.

And then the next morning I went to church on a non-choir day – so unusual for me and helped out in the kitchen to understand what we’d need in a new kitchen. (As an aside, I had to tell Ward that it would be very difficult for me to continue olympic weightlifting as it meets in Frederick at exactly the same time as Sunday services. He gave me a hard time and I gave myself a hard time. I’m still practicing, I still want to do it. I kind of want to do it more than I want to do the church thing…but this is how it goes).

Now, part of my deliberation was my general uncomfortableness with “going to church”. Do I even consider myself a Unitarian? Almost…no. But I think that is OK, I asked around and it seems OK. hahaha. I had been thinking, in a previous life of going to seminary or divinity school, but I don’t really believe in God and would that be a hindrance, and Bob, my father-in-law laughed and said – absolutely not! So there you go. I go forth in this as my own protest to the current world order, to learn things, as a step to building a house for Edda. Wish me luck.

On Saturday, we held Edda’s 22nd birthday party at Main Street in Poppy Boy’s Kitchen. I was really not feeling it going into it (actually, I was going into it a little resentful but I was trying to not display it too much), but, of course, now that it’s done, I’m happy that we did it. I know it gives Jeremy a lot of pleasure and it gives Edda a lot of pleasure and it does give me a lot of pleasure, the same way doing a really hard workout gives one pleasure.

We have a very wonderful support team now that have helped us for many years – Seni, Emilina and Megan all help with the setup, the party and the breakdown and now we’ve all been working together a few parties, we have a great rhythm going. Eliana was Edda’s constant companion and got her showered, dressed and ready in her finest and a tiara.

This is the 2nd year we’ve had the party at Main Street and we are getting better at moving a shit ton of equipment, food, decorations, about 1.5 miles from our house to the venue. We had to make multiple trips for forgotten things like butter and extension cords and ladles.

My parents and Jeremy’s parents came to the party. The DC Martin’s all came. And we were surrounded by love. It’s interesting how the demographics change as we get older. As a younger family, we had a lot more Rett families and parents of Vince’s friends. This year, we had a lot of Main Street residents and a new addition – the folks from Edda’s day program. I do not know a lot of these families, so I just asked the program to tuck invitations into the communication notebooks and three or four families showed up and I got to meet these folks! Haha, the night before I was telling Jeremy – well, I’m getting RSVPs from people I don’t know, but now I know them.

Lauren made the beautiful cherry blossom cake which was perfect for the occasion and so delicious.

I had taken Friday and Monday off of work because I knew I needed that time to ramp up (tapering) and decompress (recovery). The house remained disaster-y well into Monday with bags and pots and pans strewn all over the house – but it’s mostly put away now. Jeremy is deep into figuring out how to make everything more efficient with loading/unloading so it seems like we are going to do it again next year. I feel like we can cater a very specific party with 24 hours notice. Do you want a pancake breakfast for your family? We can do it!

I’m enjoying this spring – every morning I take out the compost (which is a task that I procrastinate on in the winter, letting the buckets molder and decompose right on our kitchen counter rather than taking it outside in the cold) half-full as an excuse to watch the buds spring open on my semi-newly planted trees. I have a new redbud, new serviceberries, new witch hazels. I have new daffodils and new crocuses. The redbud and serviceberries are leafing out in little bits, but the witch hazel is still a mystery to me. I look at it and wonder if the little stick I planted last fall made it through the winter. I think so, but I’m not quite sure. Sometimes I think it’s green and getting a little fuzzier, and sometimes I think it’s unchanging and a brittle as a plastic straw.

There is the dogwood tree that was planted in the depths of the pandemic by our beloved former tenants who now live in Texas. For many years, it got ravaged by the deer and its trunk half broken at the base by who-knows-what because we had put up only a flimsy cloak of netting as protection. There was also the time I accidentally nicked it with the weed wacker putting a bright green and deep gash in it’s baby, struggling bark. But now I’ve fortified the defense and the deer don’t get to it and it it now taller than me (by just a bit) and is mending its wounds, slowly growing bark around the eaten and broken parts.

Sometimes I feel like that – a little wounded all the time. Serious difficulties and tragedies, set backs, a stinging comment, a world run by toddlers. But I’m also protected and shielded and strong and capable of regrowth. We are having Edda’s extravaganza birthday party tomorrow and it’s always a bit stressful to me even though Jeremy runs the show mostly. A few weeks ago, while he was away, he said – don’t think of a party where you are the host, try to think of it as a party where you are a guest.

I’m baking so much that the kitchenaid it on the counter almost all the time. I baked on Tuesday, I baked on Thursday – it’s fun and interesting and so absolutely caloric. Our supplies of chocolate chips, butter, flour and brown sugar – things I’d not really thought about for decades, I now know the quantities in our pantry intimately. I can modify what I’m baking by the ingredients I have. My mom bought a six pack of cream cheese from Costco of which she gave me 4. Four! I made a cream cheese berry coffee cake for Edda’s actual birthday. On Thursday, I found myself without any butter, so I went to oil-based cooking which ended up with chocolate muffins. I

Today is Edda’s birthday. She’s 22! I’m…happy. If you’d asked me 15 years ago if I would ever be happy on Edda’s birthday, I would have said no, absolutely not. But here I am, happy and grateful. She’s a tough cookie and has been through a lot, but I’m often impressed by her equanimity while dealing with her challenges. When she was younger, I was a desperate for things to be different and now, I’m more OK with things as they are. Not that I’m not trying to make things different, my God should things be different, I just like taking that desperate feeling out of my life.

It got up to the 80s this weekend and this was Elka’s response: too hot. She is like the princess and the pea – things are either too hot or too cold. Precious thing, so fearless, yet also fragile – aren’t we all like this? Strong in some ways, and crumble in other ways – directional strength.

This is birthday week for Edda and we happily started it by having ice cream last night in the summer-like evening. We walked to Carmen’s – ok we drove to Carmen’s and walked the 500 feet to the line and Elka got pets and Edda decided to upgrade from her regular vanilla ice cream with rainbow sprinkles to a more grown up chocolate with chocolate sprinkles. As we stood in line, we texted Vince about his new apartment and IKEA furniture construction. And then we went to bed early.

My friends, I started off the year strong – avoiding my phone, reading books instead. As I started, I started my goals strong – I was going to read international authors, serious non-fiction, books that were not best sellers, gushingly blurbed award-winners. I filled my queue with Oscar Contenders and not Marvel Movies and I was doing well. I trucked through many books – stories about African immigrants in Europe, Jamaican immigrants in Canada, orphan children selling Christmas trees who the died, graphic novels about Black teenagers, translated Korean novels about bookstores and I was pleased and smug with myself that I had given up the Cheetos of online shopping and celebrity gossip and weird reddit memes and I was only reading organic quinoa that I was a better person for it… and then….I made a tactical error and decided that I would tackle and award winning book about 9/11 (The Looming Tower, if you must know) and I made it through a third of the book and then – completely gave up and I have spent a month spinning through audiobooks and printed books trying to find one that will stick.

Because the books have been unattractive, I’ve slid into watching more screens that I’ve wanted to – it’s so hard to turn away. In desperation, I’ve turned to a favorite audiobook which I’m relistening to. I hardly ever re-read anything – but I’m making an exception. My favorite audiobook is Tom Lake by Ann Patchett performed by Meryl Streep and it is like inhaling the aroma of chocolate chip cookies baking or that first sip of Coke after spending a day of physical activity in the warm sun. Soothing and comforting. And I’m reading a physical book – a murder mystery – Magpie Murders which is not a great book, but it will do for now as I’m about 3/5ths through it and will finish it, though I have to say, I don’t really care who did it (once or twice, there are two murders, and two stories – a book within a book, like the book version of the princess bride).

An audiobook that I did listen to and enjoyed, was Ray Porter’s rendition of Hail Mary – it was only available on Audible, so I ended up paying for this, I rarely pay for my book consumption. And it opened in theaters yesterday, and I went to see it in Frederick – were I sat in seats that moved and rumbled and sprayed air/water in my face while the movie played. It was a fine movie – not a great movie – and the moving seats were fun, if at certain times, a little motion sickness inducing – ever so slightly.

Jeremy is back! Hallelujah! Gone for 10 days – and we made it through. Thanks to my parents who watched Elka (the whole time) and Edda (at least once so I could sing at Sunday service), Ginny (who stayed late with tiny baby so I could attend choir practice and a Taylor Swift party (long story)) and Megan (so I could attend a meeting for adult housing for Edda and also sing at the last service of our beloved minister). I cobbled together meal after meal (which normally I don’t do, this is 100% Jeremy’s domain) and only ate takeout one night because I promised Ginny the fried fish with spicy salt from Shanghai Taste the night of the Taylor Swift party. (Though I totally veered into frozen pizza and chicken pot pies from Trader Joe’s territory…).

Why a Taylor Swift party? I “won” this party at a fundraiser and there were only 3-4 people going, and the organizer was so excited and had baked and printed programs, and so, if the party was even nominally bigger, I would have backed out, but I tried pretty hard to be there. And I did learn a lot about TS, I’m a very casual fan, I’ve listened to most of her albums, but only the big hits – so I had a lot of fun at the party and I’m glad that I went.

Ginny asked me one night if I missed Jeremy or if I enjoyed having the house to myself and the answer is BOTH! When Jeremy is gone, there is a gradual slide into sloth-ness that happens to me. My base tendencies tend to emerge slowly – a little slovenly, a little snack-y, a little lazy, a little pajama-y. Mainly this manifests itself in a little slacking my daily routines – most notably exercise – and a vast uptick in my consumption of crappy internet short content. I almost never do that when Jeremy is around, but once started, it was hard to stop.

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.