I was blog-hopping and found an amazing post on a blog written by a mother whose four-year-old daughter has Down syndrome. Check out her post, titled Hope and Normalcy, Part 2, then read the rest of mine: http://mdbeau.blogspot.com/2007/08/hope-and-normalcy-part-2.html
I have noticed changes this summer. Changes in me, I think, but changes in others as well. I know people look at me with pity, with concern, with wonder that I have a "great attitude" for all we're "going through". I appreciate the concern, I don't want to appear rude. But, seriously, I have found that there are plenty more worse things than having a child with William's syndrome.
I can reiterate a lot of what Michelle wrote - just change Down syndrome with William's syndrome. Did I wish for my son to have WS? Of course not - life may be harder, his health will be riskier. And the stupid question would be would I sacrifice him to have a child without WS? Of course not. And about the "bad things" -- He'll have delays. He may live with us longer. He may not be a rocket scientist. He may have hard times growing up and maturing. (Ahem, all of these happen to "normal" people as well.)
I know people are trying to do their best to show me they care and are trying to be supportive. But I don't need or want people to act guilty their child is superseding Brady in development. I don't need people to look at me, sigh, and tell me how great I'm "doing", while patting my back in sympathy. My life is my life. Yes, we have countless therapy and doctor appointments. We are always trying to help Brady gain weight. We will always be in the middle of some "project" we are trying to help Brady with. You can show me support. Just don't show me sympathy. Seriously.
My girlfriend's friend's baby died when he was eight months old from a rare disease. Our PT know another baby who is living on borrowed time at 13 months. I know more than one person who can't even have children -- do you think they would mind having a baby with developmental delays? Our ST knows of a family where the father of five children died in an accident. I know a family whose son drowned at four years old.
For those of you who wonder why I have a "great" attitude -- THIS is why. How can I be sad over Brady when things like the above happen all the time? I am not some super-human. I am not extremely optimistic. I am actually very REALISTIC. Having William's syndrome is not the worst thing to happen.
Now you know my secret. Thank you, Michelle, for a great post and for making me realize why I may need support, I personally don't need sympathy. Just look at that cute little bugger :)