Wednesday, May 4, 2011
Before you judge, let it be known I do not usually dress my daughter like a cheap burlesque dancer. This picture was taken before a dance recital, and was chosen to accompany my post for one reason only- my floor looks relatively dog hair free and clean.
Sasha has many wonderful gifts and quirks, much like a typical six year old. She also has Williams Syndrome. If you don't know what that is, Google is your friend. I jest...Williams Syndrome is a genetic syndrome that manifests in many ways. Some are pretty cool- Williams kids tend to be super outgoing and happy. Happy for the sake of just being happy, not based on getting the newest toy, or eating easter candy for dinner ( although that last one makes me very, very happy). I think of Sasha as a weather vane for other people's emotions. She is more empathetic than most 40 year olds. If you are sad, she will do everything in her six year old bag of tricks to make you smile.
Other parts of having Williams Syndrome simply SUCK. Sasha has had major heart surgery, has had her share of smaller surgeries, and has all sorts of delays. We visit the local hospital all too often. I will leave the details for another time, but Z-Man likes to tease me on how unpopular I am at our local Emergency Room. Z-Man and I basically play good cop/bad cop during these ER visits. I act like a bitch from hell until I feel Sasha is getting all the attention and care she needs, while Z-Man calmly talks to the doctors and nurses. I would like to tell you I feel bad about the way I act in these situations, but the truth is I don't. In those moments I am Mama Bear and anyone who gets in my way is getting mauled. This didn't serve me too well when I broke my back in March. I don't think it is coincidental I waited 2 hours just to get some painkillers. I guess the nurses doled out justice to Bad Cop- but don't worry, just like bed bugs I'll be back.
Having a special needs kid means there are going to be good days and talk me off the ledge days. Today was all set to be the latter. Another specialist visit, another recounting of every illness over the last six years. Blah, blah, f*cking blah.
Right before we left for the doctor visit, I checked my email. My mother had forwarded me a portion of a college essay written by one of her neighbors who met Sasha last summer.
A ray of sunshine on an otherwise cloudy day.
This is what the email said:
Have you ever looked at someone's smile and instantly known that you have changed their life and they yours? You can tell by an expression if someone looks up to you like you are their hero just by their smile. This past summer I had the opportunity to experience this feeling first hand. I met a five year old girl named Sasha. One day I saw her smile at me and immediately my heart melted. Sasha never asks for anything in return she just smiles even when things are difficult for her. When kids her own age wont play with her, she smiles, she loves, and she inspires. She inspired me to become a better person, a five year old girl has changed my life just by one smile.
Today was a very good day.