Vince’s violin performance at his school. In an overheated gym with not enough chairs. Ugh. At least Edda had her own chair and they played Ode to Joy which is the best song evah! (Except for Chopsticks or When the Saints Go Marching In or maybe even Boogie Woogie Bugle Boys of Company B).
My mother came and gave Edda a hand massage. So sweet!
Vince marched in his last parade Rockville Memorial Day parade as a cub scout. This is our third parade – as the temperatures were hot, hot, hot, Jeremy and Edda opted to go grocery shopping while I watched Vince and his buddies march in the heat. Can you tell in this photo that no one is especially thrilled?
I also got the pick up point wrong so I was the last one to pick up my tired sweaty son. He was a little bit mad at me for making him wait so long.
As an aside to my brother, I think you would have liked the float the the scouts had to walk behind. A car which proclaimed the owner’s love of Taz.
We spent a lot of the weekend coughing at each other. Jeremy was the sickest – on Saturday, we all spent the day indoors and watched TV all day.
We did go to Sunday night dinner – Vince did my nails. I tried to convince him that I should paint his nails, but he would have none of it. I even suggested a manly color and still he demurred. Can you believe it? But he eagerly painted my nails, each a different color.
How many bottles of nail polish can one teenage girl own? A lot!
Vince has been taking violin lessons for a couple of years now. He takes lessons from a person who lives around the corner from us – Ms. Kelly. I met Kelly because our dogs are best friends – Inky and Maxi love a good rumble on the tennis court. Anyways, Kelly and I are pretty good pals and she suggested that I play the piano accompaniment to Vince’s violin piece.
So here it is, Vince’s great performance and my first performance since the late 1980s. I am so happy my mom was there to see this – it brought back many memories for her of sitting through many of my own childhood recitals. Also happy that my father-in-law was there to hear us too, although it makes me nervous that he is there as he is a professional and all ;).
Right after we got the stair lift installed in the house, I got a call from Edda’s teacher suggesting that we use Edda’s wheelchair and the lift on the school bus to get Edda to and from school safely. I hadn’t even really thought about it, but of course, it makes perfect sense. We have always had Edda walk up and down the bus stairs with a lot of assistance, but she could do it most of the time (up especially, down not so much). Now Edda weighs so much, it is very difficult for us to manage her safely up and down the bus stairs.
I suppose this is a milestone of sorts, I had my camera ready and took photos, but it is a little heartbreaking at the same time.
Jeremy and Se Hyun went with Vince’s fourth grade class to Breezy Point – part of the shoreline of the Chesapeake Bay, to see for themselves what the Bay is like. They’ve been doing lots of science and history lessons about the Bay – so today they got to see catch fish and learn about crabs. They got to hunt for shark teeth in the sand. It has been rainy all week, but it was beautiful today!
Jeremy manned that crabbing station during the afternoon. Here he poses with his pal – “Crabby”. (The girl’s name is not Crabby – it’s the crab’s name).
Here’s Vince seining. I asked him what he caught and he said he got some rocks.
Vince, of course, got in trouble for actually swimming in the Bay (you were only suppose to go in knee deep).
A few weeks ago, Edda and the rest of the 2nd graders in her school went to the Air and Space Museum. Neither Jeremy nor I could make it downtown, but Edda’s teacher was kind enough to send little missives throughout the day on Edda’s aviation experience.
It has been a quiet school year for us – my major goal for this school year was to try the eye gaze system for Edda – and we did manage to do that, it pretty much showed us how cumbersome and not user friendly it was to use. A huge disappointment, no one really wanted to touch the device, not the way everyone loves to touch their iPads. We are looking for something to make our lives easier, not harder. Our eye gaze trial seemed so long ago, it’s hard to even remember that it was during this school year that it happened.
I had a friend ask me if I liked Edda’s school, asked if it could be better in some way. Of course, I think things could always be better, but it’s hard to say how I would make it all better. This year, we considered moving Edda to the most restrictive schooling in the county, it would be totally segregated from the typical student population, but we were hoping for a more therapy based program (it would have had a pool!) and less academic based program which I think isn’t really playing to her strengths. As a third grader next year, Edda needs to take the standard testing for all third grade students which I think is a waste of time (really not only for Edda, but also for Vince, but at least for Vince, there is a pretense of tracked achievement, I’m not sure exactly what it tracks for Edda). But for various reasons, we shelved that idea, at least for now. Her current teacher has many, many years of experience with special needs kids, both in inclusion settings and in completely segregated settings – the para-educators are concerned and helpful. At the IEP meetings they take all our suggestions to heart and work with Edda diligently, but somehow, of course, it could all be better. But what would that be? Mainly it would be if Edda didn’t have Rett Syndrome.
Here’s a link to the latest clinical drug trial that is being funded by IRSF – just came out a few weeks ago – GO NNZ-2566 ! (they really need to come up with a catchier than than that, something like Sha-zam or Rett-be-gone – now that is much easier to remember.)
We took Edda to Jeremy’s barber to fix up her hair. He was very sweet and Edda complied nicely by being very much asleep during a lot of the haircut. We were going to take both Jeremy and Edda to Cartoon Cuts to get the Mom and me combo (which really would have been the Dad and me haircut combo), but we were not in that part of town – so off to the barber we went.
So if you have a minute and would like to see Edda and her short hair cut and her stair lift all at once, here’s our action packed stairlift movie. She is not super happy in this video, I think it was her third trip on the stairlift, you know, because I need to have more than one take and she’s like come on people, I got stuff to do, movies to watch, I don’t have time for your damn moviemaking. Enjoy!
We try and have date night on Wed. nights, it is always a challenge to figure out something which is both cheap and fun. This week we picked something that was neither cheap nor especially fun, we went to IKEA to buy a new couch. Our more than a decade old sofas are now so stained and ratty that it is just plain embarrassing to have people come over and the first thing they do is to sit on the food crusted/grease spotted/torn fabric couches. So after months of hemming and hawing, we finally picked last night to go and pick out the couches. Wed. night is the most perfect night to go to IKEA, the place is practically empty! So gloriously spacious. So wonderfully romantic among all the MALM shelving.
Our sitter, Se Hyun, is so funny – she always asks if we our dates are romantic. Someday we might have a romantic date with candles and rose petals, but I’m not sure if it is possible after being together for a bazillion years to have a romantic date anymore. Isn’t the romance of it all kind of like finding out new and exciting things that you don’t know about the other person? I don’t think there is much mystery left in our relationship. Also romantic means not going to a place that has ketchup on the table.
It’s so hard to become a vegetarian when roast chicken tastes so good. I know I have no willpower.