May 28, 2005

Today Ben was watching me eat a piece of bacon. No, he wasn’t just watching me. He was staring me down, standing as close to me as possible, watching the bacon intensely.

I could see the want in his eyes as I took a bite. I know what his body language means. I’ve had to become an interpreter of even the most obscure signs as more and more of Ben’s language slips away.

Still, sometimes and perhaps less often than I used to, I remember to challenge him. So today I asked, “What do you want?” And today to my surprise Ben challenged me back. He answered, “A piece of bacon.” I almost jumped out of my pants. I had not heard a string of words like that in so very long.

I gave him all the bacon he wanted.
Addendum.

This winter Ben lost all of his words. He replaced them with crying. For a period of about three months Ben cried a frantic, frustrated cry from the moment he woke up until the moment he fell off into a fitful sleep.

I thought we had reached the point where my son, the one I loved, disappeared and was replaced by a shell containing only the disorder. It was horrible time for our family. Then one day the words returned and the smiles came back. I have never in my life felt so grateful for such a simple and precious thing – the voice of my son’s spirit. I am sure I will never experience such a feeling again.

Sit at the table with your children, have breakfast and eat up their words. Thank you for letting me share mine with you.


Ben & His Friends | Meet My Ben | Mom's Journal
Ben & His Dog | Ben's Last Day | Ben's Words
Big Ben | The Farmers Prayer