Author: Doris

I’m babysitting tonight. It’s weird taking care of a kid who isn’t yours. I just mean that every baby has their own quirks, their own way of eating/sleeping/pooping that you have to get used. Also, I’m not a natural babysitter. It’s a bit nervewracking for me, but tonight, the baby and I did great! Went to sleep right on time with only a little bit of fuss and muss.

Dad made it to Singapore. He got in at midnight last night and at 5 am, he managed to pat Edda back to sleep! Pretty impressive. He was a trooper today, went to Edda’s school and stayed up almost all afternoon. It’s going to be nice having him at home. We don’t often spend this much time together.

We went to the zoo today with Chris, Kate and Abby. I was worried that it was going to be too hot, but it was OK! I mean, it was really hot, and I sweated buckets, but the park is well designed with lots of shade and we saw the most amazing monkeys. I think this is my 4th time at the zoo and this time we saw the most monkey activity – swinging over the branches and hanging out. Also saw many baby monkeys hanging onto their mother’s fur. I’m so sympathetic to the moms. Ugh, what a pain to have your kid gripping your hair while you try to swing from branch to branch.

We all had a great time, especially Edda who spent the day laughing and enjoying herself, even though there wasn’t any air conditioning. She ate well and walked a lot through the zoo. Vince also was great, even though he didn’t have a playmate his own age around, he enjoyed all the adult and baby company.

Jeremy loved figuring out how to fit 2 babies, 1 preschooler, 2 strollers and 4 adults (3 of which are taller than 5’10”) into our minivan. He loves to pack things, minivans, tupperware, vacation schedules. It’s all good.

Here’s a photo of Edda which I have to post even though it is blurry and generally a terrible picture (look at that flash! ugh!) simply because she is looking straight into the camera and smiling. Because she doesn’t really answer to her name or commands like, “Hey! Look over here!” gettting her to look in any particular direction is particularly challenging. Vince took the photo, he might have better luck than the rest of us at getting Edda’s attention.

Can’t wait to hug Edda! Of course, Vince too. But, I am going to miss Mom 🙂

Dear Donald,

It was very very nice to see you after all these years. Sorry that Chris is
taking your place now.

I do not know how to say to Doris. Please send my best regards to them when
you visit them next month. My heart is always with the little girl. I
never thought that it will happen to my family, but it does.

Good luck to you and wish you a happy boy always!!

Robert

Mt. Tamalpais, CA & Tiburon, CA

As my mother implied in the previous entry, we did receive the results of Edda’s blood test on Monday and it is with a heavy heart that I report that she has Rett Syndrome.

Edda is very happy and healthy and does not seem to be in any physical or mental distress at this time and for that, I am grateful because I know these things are not a given for children with Rett. Actually, in the grand scheme of things, I still consider myself a fortunate person. I have loving family and friends, I have a roof over my head, plenty of food to eat and access to good schools for my kids and doctors for anyone who gets ill. It’s a good place to be. As for having Edda, she is 1 in 10,000 – she’s a pretty unique girl and if her soul had to end up anywhere in the world, it’s just fine that she landed into our little family. We’ll do our best to care for her, just like we all do our best to take care of each other each day.

We will see day by day what the future holds.

It is a very difficut to write at this moment since our family has to face the reality to raise an abnormal but lovely kid, especially for Doris and Jeremy. I have been hoping for the best and now we have to face the worst. It was kind of expected, but as I heared the news over the phone, it was very hard to hold back my tears and cried for a while. But crying does not solve problems, we have to face it. It was a pure bad luck, statistically speaking- 1 of 10,000 or 15,000.

After reading articles from the internet and judging from the current conditions- Edda has normal size of head and she can walk, it is not that bad. Hope she is on the better side and has mild forms.

But we are not alone. As a matter of fact, every family has to face some kind of challenges, big or small. Life can never be perfact. Lets face the challanges and you have all the supports from us.

Dad is leaving the day after tomorrow. We will be in office and are going to make up some time tomorrow. Take care of yourself first. Then you can take care of the rest. Love you all.

At Andrea’s Wedding