Author: Doris

Schweddy Balls

It has been Rett Syndrome awareness month and I’m pooped. We went to three events within a three-week period and I’m emotionally exhausted from all this fundraising and general aware-ness raising. I do the fundraising because I love Edda. However, I’m a cynic and general pessimist and I no longer believe that a cure is around the corner.   It is too difficult for me to keep on hoping that Edda might someday be miraculously be able to talk, feed herself, go to college, get married. These dreams for Edda are no longer part of my world. My dreams for Edda are simpler these days – is she loved by friends and family? is she exposed to new experiences? is she making the most of what she is able to do? how am I going to get her into those fashionable skinny jeans? The stroll-a-thon (which was the last of the three events) happened yesterday and I’m glad that the stroll slid into the hours of Sunday night dinner.  I’m glad I got to go from being surrounded by my Rett Syndrome family to my own family.  I’m so glad that Edda got to enjoy the new Ben and Jerry’s flavor, Schweddy Balls. 
 

DSC_0353.JPG

It was a nice quiet evening (except when everyone started dancing!).  Now if only Jeremy had shaken his booty…

DSC_0365.JPG

DSC_0361.JPG

Blue Sky Girl event

DSC_0204.JPG

I love my Rett Syndrome family.  Although I could do without Edda’s disability, I do like that I have a name for it and that I’ve connected with families all around the world who share similar struggles.  Today we participated in Blue Sky Girl event – which was an awareness event to let people know about Rett Syndrome.  We bought balloons in blue and yellow – blue for the sky and yellow for the sun.

DSC_0209.JPG

All around the world, in designated spots with staircases, we were all suppose to climb up the stairs to show what girls with Rett can do.  Here we are at the bottom of the stairs:

DSC_0228.JPG

And here we all are at the top!

DSC_0269.JPG

One month trial –

DSC_0106.JPG

Excitement in the air!  Edda gets to trial an eye-gaze computer for the next month.  Jeremy and I went to Edda’s school this morning for the initial set up and training.  The county’s coordinator for augmentative communication looked at me in the eye and said, “Please be careful with it!” and I was confused because I thought that the computer would stay at school for the whole month, thus absolving me from actually having to do any computer work with Edda.  I asked nervously if the computer was coming home with Edda – and apparently the answer is – everyday on the bus.  Oh, it puts a little bit of extra work which I dread a little bit because I can feel the stress and frustration building already which I am trying to tamp down. AlI can say is that I’m happy that our one month trial is this month and not last month when we were all swamped with work.

DSC_0100.JPG

Edda has no problem calibrating the system and her eyegaze is accurate up for 48 icons. Just imagine 48 spaces on the computer screen, if there is 1 picture of Dora in a sea of blank spaces, Edda can pinpoint that picture in no time flat. During this month, we are going to try and see if Edda can answer some academic questions – without showing that Edda can use it functionally, then most likely the school system won’t purchase the system.

After working about 15-20 minutes, Edda fell asleep. Her teacher gave her bunny ears 🙂

DSC_0105.JPG

Here we are trying it out at home –

DSC_0110.JPG

End of the fiscal year.

DSC_0072.JPG

Both Jeremy and I rushed towards work deadlines for the end of the fiscal year (September 30th).  I don’t think I have ever seen Jeremy so busy at work.  Now that we are in October, a calm has settled in the house – I feel like I can catch up on laundry and take time for a nap or to listen to a bed-time story.  Jeremy has been able to take some time to make us a delicious chicken dinner!
 
DSC_0073.JPG

Zhaoyuan City, Yantai, Shandong, China

Currently, China is the world top gold producer and Zhaoyuan, Yantai, Shandong is the Gold Capital of China. It is not too far from here. Just like Haiyang, it is part of Yantai City. It locates in the NW direction of Haiyang. When Mom comes back, probably we can take a trip there together and visit their gold museum.

In addition, Mom will go to Nan Tong City, just north of the Chong Ming Island & across the river, to visit her relatives there on the 6th. The bridge on the north side of Chong Ming Island is under construction now. Therefore, Mom has to take a ferry to get to there. However, the south side bridge to Shanghai has been completed for a while. Therefore, there are a lot of bus runs between Shanghai and Chong Ming Island. It is very convenient to get in and out of Chong Ming these days.

Working in the Wee Hours and Misc

Yesterday, I started working at 8:00 AM all the way until 2:00 AM of this morning. Then I woke up at 6:00 AM and ready to work again.

Ha, Ha I haven’t anticipated that I needed to work in the wee hours at my age. But, it was good. This evening, probably, I will hit my old, warm sack right after dinner. I have already taken out some of Mom’s egg dumplings out of freezer this morning.
The other day, one of my local friends gave me lot peanuts. After cooking, I just spread them on the living room floor to let them dry. This, I take cue from the local farmers. They spread them on the highway and corner it off so cars can’t running their peanuts over. Good dry-clean-and-large surface to dry peanuts with GREEN things in mind 🙂 – no energy from any source except sun and wind.
Oh, the other day, when Mom was here. Both of us saw an awful car accident. The most grotesque one in my whole life, I believe. Evidently, a motor cycle hit at the dump track, which was full of heavy rocks, on the back, the motor cycle gas tank exploded. When our bus drove by the scene, we saw a completely burned char-coal body with one leg and one head stick up a little bit on the highway. It was still burning there. There are a lot of fire engines and policemen around but nothing could be done at that point. Just too bad, very bad accident indeed.

Washington DC, the Best City to Raise Kids

The other days, I just learned that Washington DC was voted to be the best city to raise kids. I guess I need to ask Doris & Donald then 🙂

Here in China, we have this big National Holidays (Oct. 1 – Oct. 7) coming up. Too bad, I have to work all these days because our data center is moving from Houston to Shanghai. Not only that, I probably need to work on wee hours. But, hopefully not. Gladly, my English class for locals are going to be over soon. Next year, probably, I wouldn’t like to sign up for it.
Hopefully, this Thanksgiving time, Donald will be able to travel toward west (Hawaii, Japan, Korea ??) so we can have a mini-family re-union there. If with two, then we will leave them alone 🙂 Of course, next time, Mom think that our family re-union is much better on a cruise ship. May be Alaska Cruise. Not sure yet.
The weather is getting cold here. This place is great for summer – nice and cool. Winter, hopefully, will be moderate also. A lot of people told me that up north, just across mountains, there will be a lot of snow, but not here.