I have been a tad emotional these past couple days. I want to blame it on hormones and a bad head cold, but it's really because I have become a wimpy mush since becoming a mother, especially a mother to a special needs child. I know I have always been a compassionate person, but it gives you a new perspective when you see another human being and think "that could be my child." I can get downright weepy when I see the boy with Downs syndrome cleaning the tables at Wendy's.
We received our copy of the Williams Syndrome Association's newsletter this weekend. There was a beautiful letter written by a 12-year old girl talking about her 7-year old brother with WS. She states that even though he cannot walk, talk, or eat, she thinks he is absolutely perfect. There were two tributes from the parents of children who passed away this year (one girl was 16, and the other boy was only 9 months old). It took me two days to read the newsletter because I kept having to put it down and take a break or else I would lose it. I picked up my latest issue of "Parenting" instead (nothing has ever made me cry in that and, many times, I laugh at the magazine and the problems those parents need solved - it's a wonderful diversion to read about how to get rid of your baby's hiccups). And there was a heart-stirring article about open-ended adoption that got me started crying all over again. (For those that do not know, my then-teenaged younger sister courageously gave her baby up for adoption nine years ago.) All this while spending a wonderful four-day weekend with my three sweeties getting our house decorated for Christmas made me very weepy indeed.
Today, my thoughts and prayers are especially with another little member of our WS community. During a "routine" cath, this 2 1/2-year old's heart stopped. He was resuscitated, but his heart stopped twice more, he was placed on life-support, underwent open heart surgery, developed double pneumonia, and sometime during all this he also suffered a stroke. He is in week two of being in the ICU. My heart goes out to Gage and his parents during this difficult time.
It's hard to read and know all this. I want to know about these risks because I do not want to be in denial about how serious Clare's syndrome and heart condition can be. At the same time, I know that there are many more children with WS who are thriving in many aspects of their lives. The reality check can be hard sometimes. And, finally, my friend Nancy's blog just got me completely. She shares a beautiful story and video about a father and his disabled son who saved each other's lives. You have to check it out, but be sure you have the tissues nearby. Her blog is at: www.heartofafamily.blogspot.com under the post entitled "CAN." Thank you for sharing that, Nancy. I hope I am all out of tears, at least for tonight.