Words

jacks smile

I’m sad to report that we didn’t win the lottery last night. I’m not sure why I’m always surprised when our numbers don’t match. A feeling of disappointment comes over me when we need to reshelf our “early retirement, Block Island dream house, pay off everyone’s mortgage” plans. Truthfully, money isn’t even what our family dreams about most. Our real dream is for words.

A friend of mine posted a question on Facebook yesterday, “If you could have one free day of any illness, what would you do?” THAT is a lottery that our family would love to win! I spent only a second before answering, “We would listen to Jack’s stories all day long.”

Jack does not speak, sign or write notes. Not only do I miss hearing him say “I love you Mommy”, but his lack of speech makes certain situations particularly challenging. We were at the hospital two weeks ago with Jack. He was clearly sick and not able to tell us what was bothering him. Not knowing if it was his stomach, his throat or his ears created the need for additional tests and extra worries. Even on a typical day Jack’s silence is complicated. His inability to call out if he needs us in the night sets Jack apart from even a young baby.

Strangers often have a difficult time understanding. They assume that his speech is limited or difficult to understand. I try to be clear, explaining that the only sounds Jack makes are sneezing, coughing and laughing.

“But how do you know when Jack’s hungry or sad?” I try to explain that although he can’t be specific, Jack is able to communicate most of his needs without words. When he locks his eyes on yours he is able to be quite clear. I’m not really sure how he manages this, but people who love Jack learn quickly how to read his eyes and his silence becomes less quiet. While he might not be able to tell you when he has a sore throat, he can fill a room with stories without saying a word.

It doesn’t mean that we are content with Jack’s silence. Seven years after ALD stole his words l still dream of hearing them. Dreams so realistic I can still hear the sound of his voice when I open my eyes. It’s hard to wake up smiling only to realize that it was just a dream, but I won’t trade those magical moments for a winning lottery ticket (even the $485 million variety)!!
Love, Jess

Jack does use an iPad and (mostly at school) has some success answering questions AND Jack is able to sigh one thing — I LOVE YOU.

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