Erik Quinn: The Heart of a Family: Picture Perfect

Monday, May 22, 2006

Picture Perfect

I find it almost impossible to get suitably decent video or photos of Erik, as he doesn't stay still for long or quickly ventures toward the camera. There is also the issue of his smile instantly evaporating before the photo is taken (why does it take so bloody long after one pushes the button?). I have probably hundreds of Erik photos that look like textbook pictures of Williams syndrome taken by researchers and geneticists in clinical settings (mouths open, drool stringing down, glassy eyes). I have seen those horrible freak show photos on line, and I hate them. I now have a hard drive full of them of my own son. I want to scream, "That's not my kid!" It's similar to when he goes to his school or is around a lot of people and noise. For the most part, he shuts down, although this is improving with time and age. I have seen him in the midst of happy, animated, playing kids, just sitting there expressionless or on the verge of tears and shaking violently. I used to cry after that happened and avoided taking him to noisy places to be around other kids, especially when he was tired or I didn't feel like I was up to it emotionally. It was isolating for both of us. We now go everywhere together and just hold on to each other for support. He is doing great and getting less upset as time goes on. I need him as much as he needs me. Many people are now impressed with a couple little signs he gives to indicate he is in there somewhere or little things he does which are old hat to him but seem impressive in that setting. At this point, Brian and I just smile and say nothing, as we are now accustomed to this phenomenon. We both know that he is completely different at home when nobody is watching. He is a busy, chatty, smiling, belly laughing, sometimes rambunctious little boy in his natural habitat. I believe this photo was taken last week after his in-home visit. We were playing and relaxed. I want more than anything for my friends and family to see what is inside this very wonderful little person, as his true personality is sometimes hidden at this point. I know that once he breaks out of his shell, there will be no stopping him, but for now he is holding so much back. This week will be crazy with Erik's school, his home visit, and the echocardiogram. We are starting off on the right foot, as our boat leaves the property today with an excited new owner. I am a very happy girl. Brian and I both agree it is better to know people with boats than to own one! I will post the news on Erik as it comes. I hope everybody has a good week. Thanks for stopping by.


Blogger Kerry said...

I was trying to get a professional picture taken of my 7-month-old WS son, and it just was not working. He doesn't smile yet and was a little limp when trying to do the pics. I didn't realize how much it bothered me... it just kind of festered there in the back of my mind until five days later it hit me. Well, we went back the next week and got some great shots. Still no smile, but definitely some cutie-patootie pics that show Brady's real personality and cuteness.

It's hard not to let these things bug you, and I am impressed with your knack to take your days one by one. You and your husband know Erik, know his attributes and his abilities. I mainly go with the flow, but I hope I keep your sense of cool and strength.

I promise I won't comment on every single entry you leave :), you just seem to be right in tune with what is going on with us at the same time. Your blog is a great source. Thanks!

4:41 PM  

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