What a weekend!

This is Donald’s last weekend in Singapore. We are making the most of it. Today we went to Sentosa, Singapore’s premier “amusement park”. Vince loved the luge – with Donald driving – he went fast, fast, fast! Then we took a ski lift back up.


Following the example of another family who has a daughter with Rett, we are bringing music along for Edda. Jeremy’s setting up her stroller with a portable sound system and also Edda’s going to have her own iPod and headphones. It really allows her to regulate herself in unfamiliar environments.

Vince has his first swim lesson today. It went just fine – much better than last year when he refused to go to the deep pool and was freaked out by the teacher speaking in Chinese to some of her students.

We went out to eat fish head curry and we found a nice playground at the local mall.

Edda loved it.


7 thoughts on “What a weekend!”

  1. Hey, just got your comment. It’s wonderful to see your pictures and listen to your stories. You have a great family — Edda reminds me a lot of my sister when she was little! As a brother to a girl who has Rett, I can say that in the long run, it truly made me stronger. I know that when I was Vince’s age, I often wasn’t given much attention because my parents were just finding out about my sister. This gave me a certain amount of aggravation and impatience that was only really subdued when I was 10 or so. I would say the best thing to do is give Vince as much interaction as possible with his sister and with the rest of the family.

    As I started to get older, being with my sister became a more humbling experience and it pushed me to get more out of life and never take anything for granted. I think a big part of my determination to succeed comes from my sister. I have a friend who has a disabled younger brother and two younger sisters. She also has an extremely strong determination, but I’m not sure if that comes from her brother. Since both our families had to work hard to get where we were, I think that’s also a big part of it.

    Either way, I think that in the end, because of his sister, Vince will become a more caring, understandable, and patient person as well as someone who knows the value of hard work and enjoying life.

    As for the rest of the family, one of the most important things, and I know this is going to be hard to understand now, is don’t give away too much of your lives to Edda. You’re doing exactly the right thing by bringing her along on trips and trying to give her as many things as a normal person would experience. Include her in the things you do, but make sure that as a family, you still go out to movies, go on trips, keep the family element close, and enjoy life. Also try to take some time to go out with your husband or son, alone. This is very important.

    Later on it will be harder to do all these things, but you still have to try and keep it going, as much as possible — for Edda’s sake as well as yours.

    Again, it’s great to hear a different experience, and I wish all the best to you and your family.

  2. As a Rett grandpa, I agree with your (dt’s) views and experience 100%.

    For one thing, I just spent three weeks with Edda. At the end, I realized that Vince (ie., other grandkid), exhibited feeling that Edda drew too much attention from me. Vince was absolutely right. After all, he is just a lovely small “big brother”. And, in the third week, I tried to corret my ignorance on this. For that, I talked to my wife. Hopefully, she would handle this better when she visits Singapore in September.

    The other point I would like to make is that, to me, this is a family effort that grandpa can and would like to contribute. I absolutely agreed with you that everyone in our family should not give away too much of his/her lives toward Edda. Everyone should have one’s own lives as normal as possible. We all have other things that would enjoy and like to do, with or without Edda’s conditions. I do miss Edda though.

  3. Doris, Glad you’re going to try the headphones! A lot of the girls use them! We haven’t attemped it with Caitlyn yet. One girl’s mom said it actually helps to pull her out of seizures when she is having a bad day. Hope it works out great for Edda.

    Vince sure does seem like a great big brother! Sometimes I wish we would have had another child before Caitlyn. The decision to have one after her isn’t easy! But some day maybe!

    I love the level of support that Edda has from the whole family!

    -Rebecca and Caitlyn

  4. I have not been reading your site for long, so I might have missed this, but I didn’t know that Edda could walk! That is awesome! What a little rockstar 🙂

  5. Look at Edda go!! Love her little shoes! I just had to laugh as I was reading your post and thinking “Hey look another family that uses the portable music idea” only to find out it was us!! Hope that worked out.

  6. i saw the most wonderful stroller last year that had built in speakers for connecting to the mp3 player of your choice. it was a jogger stroller but that is all i can recall.

    your secret pal package looks really fun! enjoy the last few weks of this round!

  7. Thanks for all of your comments. I agreed with DT’s 100%.

    Difficult time definetely helps people growing stronger. In general, the generation experinced with “The Great Depresssion” never took anything for granted.

    BTW, I love high tech.

Leave a Reply