"NoRmaL"

Just when I get lulled into thinking that my life is somewhat normal, I am pulled back by an invisible string that seems to be attached to the middle of my back. The "string" jerks me back into remembrance that although I am very grateful for my life, it will never be what I had envisioned for myself when I was mapping out the greater scheme of my journey. I imagine that it like I am walking down a narrow road that is lined with boutiques with large picture windows (you know the one's that use to be) and all the normal lives that everyone else enjoys are inside these little buildings. Everyone and everything is arranged just so. The things that occur inside as I watch appear to move with smooth precision, void of chaos. I watch this as I walk along the sidewalk of my life, where there are so many outside pressures free to intrude on my little family and our lives. Many times I find that "green monster" of envy building inside, because that is where I was suppose to live. However, then I remember that somwhere in time, I was given the choice to live inside one of those buildings and live in magical normalcy. But instead, my personality (built on fighting for what is right and just), looked at the situation as an opportunity to prove the unjust wrong. Right the wrongs!

I just read a story about a sixteen year old girl who will never grow bigger or older and her mother made the comment People magazine that they wouldn't change a thing about her. And my thought was "she is a liar". I adore my child with his disabilities. I love him with the entire package. But if someone said that for a million dollars I could cure him of his traumatic brain injury, I would move heaven and earth to pay it for the cure. I realize that this is not a popular concept for those who support disability movements, because normal is only a setting on a washing machine. But I find myself bombarded by the opposites in my life. Weary for the time and energies that it takes to care for my son's needs and grateful that he doesn't require more. Happy that with all the obstacles in his life, he has so much to give. Proud that despite his disabilities, most are unaware of his needs, sad that because of this the world doesn't acknowledge how truely wonderful he really is. Wishful that one day his burdens will be lighter, guilt ridden because then mine will be too. Caught between what should be and what really is!

When he was small, it was so easy to mold the events around him so that things could appear like I thought they were suppose to. I invited his friends over to play so that I could watch the social interaction more carefully. I wanted to surround him with children who would be there for him when times got tough and unknowing children were mean. I didn't realize that as they grew, they would move on without him, leaving him alone anyway. I taught him that it was possible to accomplish anything he put his efforts into. I watched him practice basketball and golf for hours to perfect his abilities, only to have no one really appreciate the amazing beauty of a boy who plays them one handed.

I love my boy, disabilities and all.

But...well I guess I don't have to go there because I already made the decision and so did he.