Not more than 10 minutes ago, I was getting the kids out the door for school and Max grabbed hold of one of his arm canes ( Mondays and Thursdays he brings them to school to learn with the PT there) and decided to use them to walk to the bus. I held his belt loops from behind, but he did a great job! He grabbed one of them and said, sort of under his breath and not really to me, “I have a disability.” I said, ” You do? ” And he said, ” just because I was born that way.” He didn’t say anything else and neither did I really, although my mind was screaming inside my head.
We had such an exciting day on Friday going into NY for Max to model for the Toys R’Us catalog. He was a superstar. He loved ever minute of it – the hair, make-up, wardrobe, the pictures, the attention. He was a supermodel ( albeit, one with a juice bag and cheerios instead of anorexia and cocaine.)
He took to calling himself, “The Master of Handsome” and it just cracks me up. The studio loved him and suggested we get him an agent. I am not sure whether to go down that path. We have enough on our plates without adding casting calls and auditions to the schedule. They took regular photos of him to use as stock pictures in the future and he looked so beautiful it was shocking.
I started to reflect on the richness of his life over the weekend and tried to remember all his chances at his 15 minutes of fame in his six short/long years. He has been photographed for several brochures, filmed for a documentary about Feldenkrais, had a part in a Sesame Street video and landed on the cover of the video box, stared in our very own movie and then part of the ABC movie, “A Place for All.” I might have even missed a few on that list that I cannot remember.
None of those things would have happened if he didn’t have CP. Of course, given the choice, I would have selected a life free from disability and heartache instead of a minute or two of fame. However, I wonder how to reconcile all of it. He has touched so many people all over the country with his smile and his story… but does that help him? Does having a beautiful face and gorgeous hair and a killer twinkle in his eye make life any easier for him? He still cannot get off the floor alone, take himself to the bathroom, put on his own clothes, or save himself in an emergency. I know he would rather be able to play with the kids on the playground than inspire others.
Nevertheless, I cannot help but recognize his power and his charisma. He can scream and yell at me and demand to play video games and eat nothing but ice cream, but maybe he will use that determination to propel himself past his hardships and find a fuller and richer life.