Author: Doris

Today I made the following appointments in the span of 15 minutes; a wellness check-up for Ruby, an orthodontist consult for Edda, eye check ups for Vince and me (at Costco!). I also placed a phone call to our health insurance to try and lobby for Edda to get pre-approved to go to an ophthalmologist (who has been recommended on a special needs email list I subscribe to and also has a three-month wait for an appointment) for her eye check-up rather than going to Costco like the rest of us, but it was a big FAIL. I knew that regular eye exams are not covered (which is why the rest of us are going to Costco), it’s only if you have an eye disease and then our insurance kicks in. I tried a number of different approaches, but I was shot down each time. It’s a small thing, but still irritating.

Bad mood continues; hope to shake it soon. Can you believe that they have invented fake digital windows that you can hang on your wall which actually changes perspective as you move around the room (see video – cute baby and music involved) and not yet found a cure for Rett Syndrome? It baffles the mind! Please take 2 seconds and vote here for RSRT (charity #20), we want to keep our lead to win $20,000 for critical research! Many thanks 🙂

When Edda was first diagnosed with Rett Syndrome, my brother Donald, sent a lovely letter to one of my favorite advice columnist, Cary Tennis (who now is undergoing treatment for a rare cancer) from Salon.com asking for general life advice on my behalf. You can read the letter: here. I read it at least once every few months and I read it again today.

There is a part that says (“I” is Cary, the “sister” is me):

But I try to do more, too. I also try to sing the song of how what we are required to do is always a gift. I am singing that song right now, standing under your sister’s window in the snow.

It may be a gift we don’t like — and now I am singing to you, sister — but we feel obligated to act grateful. I don’t know if you believe in God or not, or a benevolent force, or anything beyond yourself, but in cultivating this feeling I am talking about it helps to live in the conscious presence of something beyond yourself, something that you are in essence working for, so you can say, “I’m doing this for you, whoever you are. I’m lifting this burden for you.”

Because otherwise at times it’s: Why lift this burden at all? Why not put it down in the snow and walk away?

Sometime I read this and I agree with this and other times I read this and I think that it’s complete crap. All I know is that today I wanted to take Edda and leave Rett Syndrome in the snow and walk away. Nothing particular happened today – I took Edda to the dentist and the pediatrician. Both regular check-ups and both practitioners awesome at what they do and are familiar with Edda, but just the lifting, calming, explaining, questions and planning all wore me down today.

It’s also strange how these very emotional moments are interspersed with almost completely superficial choices that one has to make, Coldwater Tide or regular Tide? Homework now or later? Chocolate or vanilla ice cream? White or green tile?

Today, Rena & I had a lunch with Donald and his friends at Menlo Park, CA. We enjoyed it very much. Only two friends were from the first group that we met several months ago. They are all young and energetic. Very good. After lunch, Mom gave 4 avocados from Aunt Liz’s tree. They are huge and delicious. Hope Donald will enjoy them.

The weather was very nice today. We drove more than 400 miles to have lunch. Afterward, we dropped by at one of our classmate’s place at Morgan Hill, CA to look at his chicken farm, pretty impressive.

I gave these to Bette! I hope they fit 🙂 Now I’m off to knit something for my pal Annie.

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.