Author: Doris

Friday was Edda’s 19th birthday and, though it always brings me a little sadness, it was also mostly a happy day. She went to both school and aftercare and Megan, one of Edda’s teachers, sent me the most wonderful birthday gift as a video. Edda is often not very engaged in activities and because she is limited in how she can control her body, she can not participate in many things on her own. But here she is, in the balloon inflating room (the special needs kids run a little in-school business where they sell balloons and they learn the skills needed to take the orders and fill the balloons, etc), totally entranced by the balloons and actually reaching out to play with them! This purposeful use of her hands is extremely difficult for Edda and it warms my heart that she was able to do this and have some fun on her birthday. She is also in such a great mood in this video.

We spent a bunch a lot of Saturday preparing the house for the annual pancake breakfast birthday fundraiser on Sunday. We cancelled in 2020, 2021 and 2022, and we decided only a few weeks ago that we would hold it this year. We got almost 80 RSVPs, and so we set to work. Most of it was Jeremy as he prepped all the food (pancakes, bacon, coffee, juice, blueberry compote, fruit salad). To host 80 people in the house, the whole downstairs needs to be reconfigured, so I ended up doing most of that. Eliana helped on Saturday with the decorations and Megan came by on Saturday night to help with last minute arrangements.

The morning of, our sous chef came (Shaney – Ginny’s son), who was amazing and totally is welcome to assist any with cooking any day.

Both sets of grandparents were able to attend.

We were able to have some outdoor seating, we lucked out on the weather.

Lauren made the most beautiful cake!

Edda and I sporting matching outfits, lol. I wish I got more pictures, but I did not. The house was full of people and pancakes, we got to see old friends that we haven’t seen for three years. One of the most comforting/exciting things was that we got a good cohort of Rett families to show up. We used to get together more regularly, but it hasn’t happened in a long long time, so it was nice to catch up and see the girls and to chat about the new drug that just got approved to treat Rett Syndrome a few weeks ago, which, based on an informal survey, we are all going to try. We all have some reservations, I will explain in the next post perhaps. It’s a symptomatic treatment for Rett, generally suppose to – as I say – “make Edda 10% more awesome”(to which Mr. Pat, another one of her teachers, says – well that will be very hard because she’s already super awesome).

Happy birthday sweetie! She is 19 today. May the force be with you. <3

Look at this beautiful sunset!

I often think I should do more things “for fun” – like going to plays, or sports outings or concerts or cherry blossom viewings or whatever. I think I don’t really know how to have fun or anticipate having fun. Like – I almost never “look forward” to something even if it’s a spring break vacation in Miami or (which is suppose to happen!!) seeing a beloved friend or eating a delicious cake. My mind always slides to the hassle, the potential fights, or the extra pounds. So to remedy this tendency, I get on a kick of signing up for random things and trying them out in the name of learning to have fun. I am literally like the only person who wants to practice having fun. Yesterday, I took a croissant baking class because I wanted to learn to laminate butter and dough. I went on my own and we worked in teams of 4 (there were three teams) and we managed these chocolate croissants. Not bad, right? We had to rush some of the rises and such things – it’s really suppose to take 2-3 days to make a croissant.

And a set of morning buns (though I’d call them cinnamon buns).

I enjoyed the class and the lamination isn’t that hard once you take the time and know the goals of not melting the butter. But I had had an argument with Jeremy early in the am (the first since going on the medication) so I wasn’t in the most pleasant mood during the class. The class itself was fine and enjoyable, and maybe on a different day, I would have enjoyed the company, but this time, it was a bit of a sugar slog of French baking small talk. Haha. But I brought all of my treats home and we had them over a pleasant dinner – trying to work through the argument we had in the morning over some chocolate. My mood is still much better than it was at the beginning of the year – though not quite back to my old self, but maybe we’d be good with some couples therapy. It’s a lot of stuff to get used to post pandemic – working together all the time, Vince off at school, Edda’s school ending, etc.

On Friday, I went mother of the bride dress shopping with Rachel which was impromptu and kind of fun. It’s a lavish wedding in three weeks, I thought the MOTB dress would have been procured a while ago, but it was not the case.

Otherwise a quiet-ish weekend. I worked a bunch, I feel like much of my life is taken up by administrative tasks and that I used to be efficient at them, but now I am not.

Elka enjoyed a pup pop.

I spent a couple of hours on Sunday doing a Pokemon walk with Sofie and taught her about gyms. It was a lovely day.

Look how absolutely grey my hair is, lol. What is the cat doing in front of me?

Trying to steal my ice cream. It’s mine! Shoo.

Elka peed so many times all over the house yesterday – like literally 2 weeks without accidents and now a whole bunch in one day. At least this time it was on carpeting that we can remove and wash and lift up (one was a brand new large Ruggable that we took out from the box approximately 4 hours before Elka decided to pee on it that they (the Ruggable-ites) sent us by accident about a year ago after we ordered a very small Ruggable). But still – you know with your kids – you say – I’m not angry, I’m just disappointed.

We are gearing up to host Edda’s birthday party extravaganza. After cancelling 2020, 2021, 2022, we are doing it this year – decided on only in February. The invite list is growing, it’s going to be something.

The floors are in! They are beautiful and the installers were kind, thoughtful and expert and put it together in about 1.5 days. The rest of the house is a complete disaster as we had to almost empty the entire rooms to remove the carpeting and give them room to maneuver. I moved my work back into the room and want it to stay empty forever! I have this dream that I own very little, but it’s not true. I own a lot of crap.

A busy weekend – but satisfying. Vince celebrated turning 21 by, yes, going out to buy a beer with his friends – at like 4 in the afternoon on Friday. Then Vince went back to campus and showed up at the coffee lab where his professor and grad student mentors were ready to call it a day and suggested they go out – for another beer! And Vince was like – I was just at that bar!

So Vince went to another bar with his professor and grad student. The first time at the first bar, they took his MD ID no problem. The 2nd bar, while hanging out with old people, Vince said they took his ID back to consult with other people – because – as he told us, it was like “a McLovin” ID – from way out of state and also that he turned 21 the day before. To which we were like, huh? Turns out it’s a fake ID from Hawaii in the movie Superbad. I found it on the internet.

Jeremy went to coffee with a colleague to talk business (and see her new baby and old husband).

We spent a lot of time prepping for the wood floor install. I did not exercise all weekend which is actually shocking to me because I always exercise on the weekend – if only a bit of yoga here or there. I decided removing carpet for hours squatting on the floor was enough exercise for me.

We toasted to being parents for 21 years. Our parenthood is old enough to have a beer. I had a hard cider which I finished only half – that was fun enough. It’s nice to have a small celebration of this milestone.

I was dubious about the therapy, but I like my therapist. We are stepping through some CBT exercises. We’ll see how it goes.