This week, I did a terrible thing, and I cut Vince’s hair while angry. It is truly the worst haircut I have ever given him. It’s uneven everywhere, if that is possible. I’m trying to convince him that I need a do-over, but he LOVES his new haircut and won’t let me touch his head.
Last week, I suddenly realized that Ruby is no longer a puppy. She’s about 8.5 years old now and it seemed like her whole life, we’d be getting comments like, “Oh, I thought she was just a puppy!”.
She’s more dignified now. Her movements are slower, she doesn’t wake up right when I get up, she doesn’t want to go outside if she doesn’t really need to pee. She’s getting to be an old doggie. Last week, she had an upset stomach for 3-4 days straight which is super unusual for her.
On Saturday, Vince and I repainted part of the garage door. There is a metal part above the garage door which was starting to rust.
I made Vince wear his bike helmet because no way was I going to deal with a head injury with Jeremy out of town. A broken arm or leg, no problem…
Ahh, what a way to spend a Saturday afternoon. Vince actually asked to do this instead of going to the pool.
For the past year or so, I’ve been thinking about getting a bird. I don’t think I will really ever get a bird, I just like thinking that I might someday get a bird. A few months ago, I was reading a book called Alex & Me to the kids about an amazing parrot (who spent some time at MIT kind of around the time that I was there) who could count and recognize colors and do simple cognitive exercises – I think they said in the book that the bird had the mental capacity of maybe a 2 year old and I remember thinking that that damn bird was so far ahead of what Edda has ever been able to show us, I was jealous. I was jealous of a bird.
But, I was kind of determined not to let that thought depress me, rather, I was going to use some of the pedagogical approaches that they mentioned in the book and use them with Edda to see if she could learn in the same way. The author did mention that her methods of teaching Alex the bird had been used for special needs kids, so what the heck, maybe Edda could benefit from the bird model. After we finished the book, I hadn’t really thought much about birds until today.
We went to PetSmart today to get some Ruby supplies and we spent some time watching the birds. Edda seemed to enjoy watching them flit around which reignited my desire for a bird. My mind drifted to a fantasy image of a beautiful bird perched on my shoulder as I spent my day examining patents. The bird would poop in a designated spot and be somewhat conversational in a Polly-Want-A-Cracker type of way. (Some people dream of tropical vacations, apparently I like to dream about birds.) Then I got all sad and thought that my fantasy bird would be more talented than my daughter, that the bird could verbally ask for a cracker and also be potty-trained. A mild depression set in. Then I thought about it a little bit more. I realized that a bird can to more than any other child on the face of the planet. A bird can fly. Ha! I felt better immediately.
These days, a black Scholar, Professor Gates, Jr. , Police Sgt. Mr. Crowley and President Obama make the headlines together. Who really acted (and/or talked) stupidly? You be the JUDGE!
However, personally, there was a similar instance that I would like to share with you. Long time ago, when my parents were still around and lived in Los Angeles, on one early morning, I walked to their house from my sister Liz’s place. It was just too early and they were all sleeping. In order not to disturb them, I climbed over their front gate on the right side of the house and sat in one of their lawn chairs and started to read their newspaper – Los Angeles Times. Suddenly, there were two white policemen approached me and asked for my IDs and the reasons of climbing over. I explained to them about my situations. They demanded my personal IDs anyway. Unfortunately, I didn’t have it with me. Finally, one Hispanic neighbor saw all the lights on top of the police cars and us. He told the policemen that he knew me. Actually he was the one who called the police without knowing it was me who climbed over.
On that very moment, I thanked the neighbor for calling the police. And I also thanked the policemen for their quick response and their dedication with professionalism. I knew then that my parents were in the right place being safe because their neighbors and LAPD.
Everyone was happy, satisfied and ready to move on … I hope in this case, it will have the same ending. It looks like, it will.
Since I’ve been employed at the patent office, I have not gone to very many of Edda’s therapy sessions. On the one hand, I’m relieved that I don’t have to take her very often because I’ve been to many, many sessions where Edda is crying and so unhappy. Also, the pace of progress (if any) is so slow and sometimes so unnoticable that it is intensely frustrating for a person like me who is more enthralled with results rather than the process. (I consider this to be a character flaw of mine, I’m working on it…)
Sometimes I think the source of Edda’s therapy grumpiness is me – Edda picks up some grumpy vibe from me (because, really, why are we the lucky ones who get to go to therapy every week instead of on playdates at the park with other preschool pals) and she gets grumpy herself. But, on the other hand, I also miss some moments of triumph.
Edda’s hand use is terrible. It’s just the nature of the beast Edda wrestles with. Rett Syndrome is not kind to many things, but one of the hallmarks is the lack of purposeful hand use. She can kind of, sort of use her hands to swat at things, but really, there is no grabbing and no pointing. (Although, for whatever reason, she can grab with tremendous accuracy a toothbrush which is in her mouth and brushing her teeth.)
Last week, Deb, our OT, and Eliana saw that Edda could somehow rally enough of her forces together and use her hands to hold herself up in a swinging swing and they were both so moved by Edda’s OT triumph that Deb called me at work and left a breathless message saying she wished I was there to see it and Eliana told me at dinner that night that she almost cried watching Edda holding herself up with her hands and swinging back and forth and back and forth.
This week, Eliana took some photos so I could share in Edda’s efforts and accomplishments. Hold on, baby! The best is yet to come.
My parents are seasoned DIYers. They know the Home Depot like the back of their hand. They’ve worked together on projects for over 35 years now (finished basements, exterior painting, various plumbing, tree trimming, etc, etc…) There is a rhythm to their back and forth and I think it’s a comfortable working relationship. My mother is often the directing the action, my dad is often the person in charge of executing the plan.
I think that my parents had a lot of fun this weekend trying to repair plumbing with the added component called “Jeremy”. Jeremy thinks a lot like a Martin and very little like a Lee (that would make sense, huh?). I have had 14 years of making decisions with Jeremy, but my parents have far less experience actually working with Jeremy and it was nice to see them amuse each other with their different thought processes.
Martins are less impulsive and more thoughtful and willing to consider many options before finding the “right way”. The downside of the Martin philosophy is that it takes a long time to actually start a project, and it’s usually not the most straightforward approach, but it’s usually done right. Lees are more prone to quick decisions and kind of half-ass fixes that are OK, but not very pretty. The upside to the Lee philosophy is that is usually gets fixed quicker and cheaper, but it sometimes it’s a little clunky.
Anyways, it took a few hours to realize that the leak was in multiple places and in places that we could not see. Basically, I’ve been arguing that we need to cut a hole in the ceiling and Jeremy’s been reluctant to do so. I argue that only when the ceiling is cut will we be able to see the actual leak and do something about it. Jeremy thinks that if we cut the ceiling, we will never repair the hole in the ceiling and even if we did repair the hole, we would need to get the whole ceiling painted and we would not do it for years because we are too cheap (so true) – so we should try to replace the gasket in the drain (which might, possibly, be the source of the leak but we don’t know for sure because we didn’t cut the whole in the ceiling) which would not involve defacing the ceiling and only after the gasket is replaced will we absolutely be sure that we need to cut the ceiling. And thus, we discussed:
A consensus was reached that nothing would be done to jeopardize the plumbing this week because Jeremy and my parents both had to leave the East Coast on Monday, and leaving me with the kids and no plumbing on the 2nd floor was too dire a situation to even contemplate. So NO! the leak is still not fixed.
Well, I haven’t updated in a long time, almost a year or so. I guess I can’t really ignore Doris’ call for support for the blog, so here’s mine…
I started dating a girl last August, but we broke up in May. I’m not sure that we really got to the point of being comfortable with each other. I think we were both a bit guarded, and sort of our default modes of reacting to things made things worse. So things didn’t seem like they were going to improve for either of us, so we ended it. Definitely learned a lot about myself tho, so that’s good.
I moved from SF to San Jose in March. This is probably the farthest south I’ve ever lived in the Bay Area. Tho I’m living with my MIT friend Ronnie and Wasi. Honestly. It’s been pretty fun again to live with people that you know. I’m really enjoying it. Ronnie’s house has somewhat become party central. We’ve had a lot of games nights/dinners/parties here.
I’m back in the fold with all these single guys now. So I guess there has been a lot of girl drama around here. Not really involving me, but it involves a lot of my friends, so I won’t divulge too much here publicly. But I do feel like I’m back in high school somewhat. Who like who, who’s asking who out, who’s not liking who. girl in in the group, girl out of the group. God. I can’t even keep track anymore.
Oh also, I was being coached by a life coach. My high school friend Ted was getting into life coaching, an he’s made some great strides in being a better person, and wanted me to try it out. I felt like I needed some direction in my life, and decided to take him up on it. He couldn’t coach me simply because we’re too close, so he recommended me to another life coach. I’ve been doing that since February. It’s been interesting to say the least. Tho it’s funny, how drama seems to follow everything. The drama was basically that my coach, was Ted’s girlfriend, almost fiance, at the time. And she’s cool. but, I guess you could see it coming (i didn’t), Ted and her broke up around May also. And it was a pretty bad break up. So here I am, getting coached by Ted’s ex-gf. I guess it was fine for a month or two, but like i said, it was a nasty breakup, and it didn’t sit well with Ted… So anyhow, I’m not being coached any longer. 🙂
I guess I’m back into the dating world a bit. I have some prospects, but we’ll see… I’m not promising anything Mom…
Thanks for the encouragement for yesterday’s post… I’m still going strong. Woo hoo!
About Edda’s brace, we are using Benik’s arm brace. I love it because unlike the other brands that I’ve tried, it actually stays on Edda’s arm. We are using the hinged model, which theoretically will allow for a range of motion of her arm while keeping the hand out of the mouth. However, we have it set on the most straight setting without any flexing because Edda’s desire for mouthing is so strong that she manages to overcome the brace when it’s allowed any hinged movement. Even with it most rigidly set, Edda still manages to get the tips of her fingers in her mouth, however, the spit and drool is significantly minimized. I needed to get our OT to place the order and it was about $85.
It’s hard to explain Edda’s mouthing to someone who has never met her. I was talking about it to a friend of mine at work, and she told me that I could use cayenne pepper to stop the mouthing and I tried to explain it wasn’t like that, it’s more like a weird magnetic, unthinking force between her mouth and her right hand. It’s not something she does to feel better, it just is a thing that she has very little control over. Sometimes I really have to pull hard to pry the hand from Edda’s mouth.
As a side problem with all the mouthing, this week we are struggling with wound control. One of Edda’s fingers has blistered and formed a little wound which we have been trying to keep clean and dry for a few days so it will heal.
The combination of the Benik brace and regular band-aids weren’t working that well, there was no progress on the healing and the band-aids kept falling off, the tips of her fingers still got wet during the day. Today I made a CVS run, where I bought the super strong bandages and the tape and did this:
And then finally, we put on a finger condom to try and keep all the bandages on. I put a more rigid brace (the one which always falls off) and the Benik brace both on hoping that the two would remain on her arm and keep her fingers dry. Here’s Edda saying “$*!$#@ you Rett Syndrome!”