Overture...dim the lights....this is it....tonight's the night....and oh what heights we'll hit....on with the show this is it!!!!!!!!!
And so it began, a dimly lit high school auditorium, chairs arranged on the stage in a semicircle. On the podium to the left, a glass of water and a mike.
Rows upon rows of parents, grandparents, siblings, aunts, uncles, teachers...seated comfortably, coats saving places, camcorders set to record, cameras ready to go......
We were standing all the way in the back, not a space to spare. My mother, Carlos, Will and I waiting for it to start....
A few years ago a psychologist at the special ed school that Gabe attended told me that I needed to bury any dream of normalcy for my son. She had said, thinking it was in my best interest, that I was doing a disservice to myself believing that someday he would be able to participate in the world normally. She said he could never catch up. What I found so offensive was that she would think for a second that she was sparing me a lifetime of hurt if she just would get it through me so that I wouldn't have my hopes up. My son had Autism, I wasn't sure what that quite meant and yet she thought dashing my hopes would spare me? Spare me what a diagnosis like Autism hadn't? Here's the reality of Autism. It changes everything. It changes plans made, unmade, unrealistic, not so unrealistic. It alters life as you know it. Families are redefined, roles are heightened, deepened and widened. It's not easy, it is not smooth. But there is still a whole lot of humanity there. There is still a soul, and thoughts, and feelings, and life, and a whole world inside this most precious person......And it by no means signifies what can't be done....My son has abilities too. People with Autism have abilities. It's our inability to acknowledge it that makes it even more difficult for them. And to try to knock any hope away, as "helpful" as she meant to be, was cruel. Hope sometimes is the only thing that sees us through.
So, as the children came out in single file with instrument in one hand and tugging a shirt or fixing a ribbon with the other, I saw Carlos looking around trying to find us.....and then I saw Gabe come in doing the same....They found their seats and assumed their trumpet playing position....The music teacher came out, bowed, waved her fingers and there was music.... For a moment Gabe was indistinguishable. For a moment hope kissed his forehead and just let him be. No prompting, no shadowing, no covering ears, no tantrums, no anxieties....just Hot Cross Buns.....Mary Had a Little Lamb.....Every parent sat recording and taking pictures of their children, while I held back tears and watched the ordinary become the extraordinary......What we take for granted, and what we learn to appreciate......what we feel we are entitled too, what we swear we are promised..... what we learn to make the most of.....the before's and after's.....the mistakes made, the lessons learned.....nothing in life is simple....nothing in life really is ordinary......nothing in life is normal.......but everything and everyone is purposeful, and significant......The music dies down. Carlos, all smiles, grabs hold of his trumpet like a weapon and gets ready to walk off stage. Single file they retreat, all except Gabe, who turns midway and comes back center stage to take his bow....three bows, one to each side of the audience....he walks off left stage and swings around at the last second to throw the audience a final kiss.....Everyone claps and roars with laughter. Everyone who knows Gabe chants his name.....This kid knows how to make the most of his moments. He knows how to seize the day. He will be flapping excitedly down the hall, this I know....once again the difference will be apparent.....but for that one moment, he was a star.......
As the last song was sung, a mother wheeled her son up the walk way and out the door. Her son was obviously very ill and fragile. His balding head and her eyes said it all. Their lives are altered by a diagnosis. All plans made and unmade, realistic and not so realistic are completely changed. Time, family, everything has been redefined for them. Hope is subjective, I suppose most everything is......and while the moment is all we have, making the most of it is all we can do.
I am grateful I got a chance to see my children up on stage excited to be part of a school band....playing trumpets....Carlos singing in a choir....Gabe taking a bow.....My hope, subjective as it may be, is for that little boy to be able to beat the odds, get healthy and get a chance to do the same.......and for his mom to be standing in the back row, waiting for the lights to dim and the music to start..........
No comments:
Post a Comment