I met up with my girlfriend last week whom I haven't seen since Brady's christening. She and I have been friends since sixth grade (we did have a year or two in high school that was, well can we say very high schoolish and we weren't that close. What we can see when we're older!). She is someone I can count on to be truthful, yet sensitive and I have always admired her for that.
We sat in her den, talking about our kids when the subject turned to William's Syndrome. She was asking questions about Brady's issues and what we've been doing. I responded with my usual about delays in toddlerhood and probably needing some help in school; healthwise we are dealing with heart issues that we are monitoring, keeping an eye on his weight, and maybe some eye issues, we find out this week. I gloss over the topics that I don't like... 55% of the children examined were found to be severely mentally handicapped, 41% were moderately mentally handicapped, and only 4% of the children had average ranges of ability... Some live in group homes with other adults with a variety of disabilities, and some prefer to stay at home with their parents.
There it is again... that little voice that is at the back of my head that reminds me that my child will never be like his brother. That he will struggle with abilities others take for granted. That voice that I squash when I talk to people about his future. It's a part of William's that I don't like to discuss. Funny, I have no problem talking about his heart condition, which is ten times more important and serious than whether or not he works behind a counter in a drugstore rather than becoming a brain surgeon. I know this. I know what's important. I know in the front of my head that him being a happy person and becoming a healthier person is more important. But it's the little voice in the back that nags me. In my solitary moments of non-optimism (I just made that word up, but it so fits) I am reminded of what he may not become.
And as I sit with my friend, I feel as if I am not being fair. I know I will have my non-optimism moments. We all secretly like the fact that with William's there are no absolutes, there are no glass ceilings. Each child is diffferent in their abilities, so some will excel where others do not. This way, we can all say to ourselves, "My child will be the one that isn't affected as much."
But then I came across a scrapbooking layout in a magazine recently. It was made by a mother whose eighth child had Down's syndrome. The mother's journaling went something like this: "We've reflected a lot on Joseph and his Down Syndrome since his birth. After all the thoughts, prayers and pondering, the one simple conclusion we've come to, the one truth we now believe with all our hearts, is simply this: Joseph's condition is a gift. For Joseph it means he will be free from so many cares in the world. He will live out his life with no guile, with no unkind thoughts. Our gift is that we have the joy of this little angel in our midst. It makes all of us want to be a little better, to reach a little higher, to love a little deeper, to be a little more grateful."
Wow. Could not have said it better myself.