Month: April 2010

Yesterday, we went to the Yellow Balloon Fair. Ponies, pizza, mardi gras beads and cotton candy.

The lady leading the ponies around in a small circle did not seem very excited to be there, we had come during the last 20 minutes of a 4 hour fair, so it was understandable that perhaps one tires of helping small children up onto ponies and leading them on a ride to nowhere – even though the weather was fantastically beautiful. This weekend, I have been feeling a little like I’m going in small circles – one foot dutifully going in front of the other, but going nowhere in particular.

I had a chance to introduce Edda to a bunch of neighborhood people who, I think, did not know of Edda’s existence, which is a little strange to me. This is the first year where Edda does not come or go with Vince on the daily school walk (Edda’s morning school bus come at the exact same time as Vince’s walk to school and she comes home about 30 minutes after he’s home), so there have been some folks that I have met without the company of Edda. Edda had a nice time at the fair – walking around and enjoying the sun on her face.

I have not been able to make the dog park during the weekdays, my morning walk to drop the kids off at school puts me about 15 minutes late for the weekday gathering. I try and make it up to Ruby by making sure she gets to see her doggie friends on the weekend, I usually go by myself, but it was so nice this morning and everyone was up at 7:30 (me being the latest one up), we thought we’d make the dog park a family adventure. We were ready to make the dog park by 8:30 am. We scrambled to feed/dress the children (throw in a tantrum or two) and we were out the door at 8:20 am. We showed up at 8:34 am and everyone was leaving the dog park (boo!) because today was opening day for softball! Turns out, Vince knew a bunch of kids on the team, so he was excited to watch.

Edda was not as interested in the game, but enjoyed the nearby slide.

OK, maybe tomorrow Ruby.

I finished another knitting project. Will post photos after giftee receives it! I was a little nervous because this is how much yarn was left over (Lego figure for size reference, if you don’t know how big a Lego dude is, you don’t live in my part of the universe):

For no particular reason, I am in a bit of a funk. All day, I have wanted nothing more than to eat some potato chips (we did have some in the house, which is surprising – probably left over from a party). Jeremy came home and told me all about his super-fantastic-day and as we have a conservation of good moods (first law of moodiness) in our relationship, I told him that he sucked a bunch of feeling groovy mood from me to make his day super-fantastic. I am happy for that he had a super-fantastic day, but I want some of that good mood back.

Vince and Jeremy went to see How to Train Your Dragon tonight. Poor child, he’s the last kid on the block to see this movie, all the kids have been talking about this for weeks and finally we get our act together enough to take him to see it. We were hoping to invite a friend, but everyone (under 10) has seen it already.

download The Robot Remains Remixes HERE

I forgot to buy Prevacid at the drugstore yesterday to treat Edda’s night time crying. I remembered just at 5:30 pm as we were headed out to a slightly mandatory au pair/pizza/charity meeting and Edda cried during the whole car trip as if I was slowly torturing her by making her leave the house and have a slice of pizza. She eagerly ate the pizza (2 slices), but on the way home, large tears came down over her chapped cheeks. But 2 hours after the pizza, right before Edda went to bed, she pooped and then went to bed peacefully. So if I had bought the Prevacid yesterday and given it to her with the pizza dinner, I would have thought, Hey! That worked great! and kept giving her the medicine. What a crap shoot.

The Accord needed $1000 worth of repairs today which was on top of the $400 spent on a new set of tires. It was an expensive day.

Vince had his 8 year-old well child checkup today. He’s so grown up now – he needed a couple of shots and he did not wail or protest. He cried a little bit, but held still and lived through it. We soothed the hurt with a slushie from 7-11.

Every morning, I walk four houses worth of kids to school. This morning walk may be the best part of the day, except for the moment I fall asleep at night (I do like to sleep). Ruby comes along and gets a treat from the school crossing guard! After I drop the kids off, I run for 1.5 miles around the neighborhood. “Run” is too ambitious a word, it’s more like slow trot.

I like keeping the house humming with activity, but ever since we came home from vacation, we have been just a little too busy. Jeremy’s been out of town and back and furiously working, I’ve been trying to manage work which has been more challenging than usual and I’ve made more trips into the office – lots of attorney’s phone calls and arguments. Also, as I become a more experienced patent examiner and I’m ready to take on more responsibilities, my work is being scrutinized more carefully by reviewers, which has also been a little stressful. Vince has a schedule which needs carpool and neighborly coordination. And Edda is still crying at bed time. Again tonight, it was the same thing, totally happy during the day and at all meal times and at school. But when it’s bedtime, plaintive crying for no apparent reason. I guess we’ll try the Prevacid again and if that works, I guess that’ll be that, but I suppose if it continues I’ll need to set up an appointment with a GI person (although it could be something completely different than her gut). I am a much calmer person when Edda is happy all the time (and it’s OK if she’s mad if you don’t have the right video in the DVD player or if she’s tired of waiting in line or something that has some REASON to be mad/sad), but this inconsolable, unknown crying which lasts a long time is so hard to take. I hope it ends soon.

I’ll leave you with a little bit of knitting, which since this photo was taken, I’ve managed to mess up because of miscounting # of stitches on the way home on the Metro. I’ll have to rip out some rows and start again. Oh and as an aside, I met a person on the Metro who saw me knitting and told me she reported to Wendy of Wendy Knits! fame who is a manager at the Department of Labor. Knitting has it’s own online world which is incredibly active and there are superstars and Wendy is one of them. Ahhh, so close to (knitting) fame! Almost as exciting as the day I let Bob Costas cut in line in front of me at La Guardia or the time I talked to Mia Farrow for 10 minutes about how warm to keep a house.

Here are some things I find interesting on the web:

A review of the Bard Conservatory playing at Alice Tully Hall, you can see Bob, Jeremy’s dad, in the photo in the background playing cello.

A science catfight! Is global warming caused by man? Jeremy’s coworker from UCS got onto Colbert Report.

A girl with Rett Syndrome composes music and types full sentences.

Seth saw that I was going to be out of photo-commission for a while and offered to let me borrow his Canon 30D, which is a couple of notches better than my regular Nikon D40.

It has been 18 years since I last used a Canon, when I bought a Canon EOS 650 which I hated so much. I replaced it with a Nikon F2 which I liked much better. I have been more of a Nikon girl ever since, but I know more professional photographers use Canon and I like the lens selection better with a Canon. I’m very excited, there are separate controls for the aperture and shutter speed which makes me very happy. (OK, this is a boring post). I really need a haircut and Edda just woke up again. She’s still not sleeping well. Sigh.

It’s Friday evening – Vince is out with friends and Jeremy is flying somewhere over the eastern side of the United States. I’m home on the couch watching Edda watch Finding Nemo. I tried to use mom and dad’s old camera, but it’s so unusable and unresponsive, it feels like I’m taking photos back in 2002. So I’m wondering if I really will go without photos on this blog for a month or if I’m going to go out and buy a point and shoot camera. Jeremy’s always thought that we needed a P&S camera as he hates lugging my camera around and sometimes he’d like to take his own photos.

The lack of photos means that I need to focus more on my writing which places me in a spot I am a little uncomfortable with because I don’t usually proofread my entries and I am a lazy writer – run on sentences, nouns and verbs which don’t match, a lot of extra, useless words and lots of cliches.

It has been an exhausting week, we still are not unpacked from the New Mexico trip, I’ve had a stressful week at work which has compounded my jet lag to make me a little insomniac. Also, I went to Edda’s yearly IEP meeting on Thursday, which was fun and productive, but also exhausting in it’s own right so I’m beat.

It has been a good year for Edda in terms of school, but also a good year for me. At last year’s IEP meeting, I was an emotional mess. I was still trying to work out my own educational goals for Edda. Was inclusion appropriate? Was a special needs school appropriate? I was fanatically, frantically and irrationally focused on Edda learning to read. Why was I focused on this goal? Well, at the national conferences on Rett, there are speech therapists who get up and talk about Rett Syndrome girls who can read, there are murmurs among parents who say that their daughter is included in a regular classroom and doing 4th grade work. I was enchanted and determined. So last year, I diligently went to seminars with Linda Burkhart and I bought a touch screen computer and switches and I made flashcards and laminated them. All this work led me down a road of intense self-imposed pressure that if I couldn’t make this work, I would have failed Edda. There were a lot of stressful sessions (not for Edda, who for the most part, enjoyed them) where I’m holding up pictures of animals/letters/number/pictures for Edda and trying to make her choose with her eye movements and I really couldn’t say for sure if she understood anything, everything was so inconsistent. I was going crazy, I needed to take a step back.

This year, I’m calmer and happier. I am not staying up late laminating cards. I am not stressing out about Edda learning to read, I’m focused on Edda enjoying her life and more importantly trying to balance everything so I don’t go crazy. It’s not to say that I won’t go back to laminating the cards and looking into other more high-tech modes of communication for Edda, it’s just that I had to take a little mental break from Rett Syndrome (if that is really at all possible) and enjoy Edda for just who she is at this moment and not just spin spin spin around in circles about what I should/could/need to do for Edda just so I can keep my head on straight.

Edda’s IEP meeting was very relaxed and informal, since her school isn’t changing and her services will still be the same I felt very much at ease – although it was very hot because it was 91 degrees outside and the school’s air conditioning isn’t scheduled to be turned on until next week.