Sitting across from Owen at the breakfast table today, he tells me "Dad, you need to get a real job. You can be a police man, a fire fighter, a mail man, or the President. What do you want to be?"
"Hmmm, I think I'll be the President."
"You don't want to be the President, that's a boring job. You just sit at a desk all day and talk to people. You should be a mail man, now that is a cool job!"
Tears don't come easy these days, I don't know why. When I was younger, and even not so many years ago, they came easy. Perhaps I've become too hard, too unfeeling, and the tears would break that shell. I suppose only those close to me can tell me if that's true. But tonight the tears came, and I wish the streaks down my face would scar, so that I would look in the mirror ever day and never forget the complete love, and the complete fear, I feel for my son tonight.
We watched Benjamin Button tonight, a beautiful movie full of fantasy, faith, and pain. About half way through, as Benjamin started his work on the tug boat, Grant walked in the darkened room and curled up in my lap. He's a lanky 10 year old now, no baby to be sure, but he curled up as if I should swaddle him in a blanket and lay his head in my folded arm. He laid there and put his arms around me, brimming with innocence and warmth. As we watched the movie, he looked up at me.
Daddy, he said.
Grant, I said.
This repeated about 20 times and every so often it was
Daddy - Grant, he said
Grant, I said.
And Benjamin Button grew older, while his body became younger. He struggled to reconcile his new youthful experiences and his old appearance. Others struggled to reconcile his old appearance with his youthful vigor and enthusiasm.
And Grant continued to lay in my lap, and look up at me, and say - Daddy.
And the tears came. He's our little button. He doesn't fit in his body. He struggles to reconcile his 10 year old youthful body with a mind that won't let him communicate his 10 year old thoughts. Others struggle to reconcile his youthful body, full of vigor and enthusiasm, with his inability to answer questions, his desire to shy away from those who could, or would, be his friends.
What I would give to know what other thoughts were behind "Daddy". The one word, over and over, as if he was spilling his heart to me, but every word came out the same.
And Benjamin Button became old, while his body was that of a young boy. His mind stopped working as it should, and he grew into dementia. He threw curious tantrums. He became sensitive to touch. His mind wandered and yet had moments of great clarity.
Grant fell asleep in my arms, his breath becoming slow and even as the peace of his dreams took over. In his dreams, there is no break between his mind and body, his thoughts become words, or his thoughts become ours. But in the morning, the 10 year old boy with the out-of-sync mind will wake up and take another crack at trying to make it all work. At trying to get his thoughts across. At trying to corral his attention. At trying to figure out what he should do with all these people. And he will continue to do this day after day.
And Benjamin died, his mind finally making the complete break from his body in which the two had never been in sync. But he died in the arms of the one he had loved, the one who had loved him.
And my tears continue to fall.
Last week, I had tears on my pillow when I thought about today. Grant's 10th birthday - a cause for great celebration to be sure, but also a time for reflection. It doesn't take much thinking to bring on the emotions and so I try my best not too. After many years of rabid research, IEP trainings, and ongoing therapies, the last year or so has been a nearly conscious avoidance of such things. A little less knowledge, a little less hope, but a lot more acceptance.
So, back to #10. Nothing like throwing a party for your 10 yr old to face the fact that your 10 yr old has no friends, at least not in the same way we all have friends. At the same time, there is nothing like throwing a party for your 10 yr old to realize how incredibly blessed he is to have so many friends and family who love him to no end. But then when those incredible people ask 'what does he want' and you can't come up with more than a couple of things that would bring a smile to his face - well you just can't avoid the unavoidable.
But I'm really not a pessimistic, wishy-washy autism dad. My tears are only found on my pillow. My job is to be strong and lead the way for my family. And one of the true joys in my life is to see joy in Grant's life.
Today, #10, was a great joy in Grant's life.
Staci did a fantastic job planning the party. Where do you go, and how do you know he will like it? Her great idea was the local inflatable jump house place - a big room with cool inflatables. Who do you invite? His class - 10 great kids, but they don't really talk to each other. Our friends and their kids, and our family. Who knew how that would all come together, but Staci knew it would be great, and it was!
What a wonderful thing to see smiles and laughter from every kid, autistic and neurotypical. Playing together, playing alone. No uneasiness, no worry about how to act, just playing, just laughing, just friends. As he opened his presents, with the NT kids talking and the autistic kids looking around, he was grinning from ear to ear as he opened a few things he liked and threw the clothes boxes over his shoulder. And the cake... after years of not being able to eat 'real' cake, we splurged and let him eat real cake today. He savored every bite and will enjoy watching the video of it many times over.
Grant turned 10 today. He enjoyed every moment. He smiled. He laughed. Others enjoyed their time with him.
Tonight, there will be tears on my pillow, and they will be tears of joy.
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