Lucy is the first child in my life to be in the “special needs” category. Oh sure, I had met other kids with special needs, but until Lucy, never really spent time getting to know them. The more I learned about Lucy and Kabuki Syndrome the more it became clear to me that she would be a child that would “stand-out” for her differences. The idea that her future would include being teased and treated cruelly by other kids began to sink in and frightened me.
One day my wife, Lorie, took Lucy to the park. While swinging on the swings another little girl, (at the park with her father) was staring intently at Lucy. Finally, she said to her father “that girl looks funny.”
Thankfully that father said, “Oh honey, I don’t think she looks funny, I think she looks beautiful.”
The little girl shrugged accepting that answer and went on with her playtime.
While this father handled the situation wonderfully, the fact is that there would not always be someone nearby to intervene at those teachable moments. I knew that this was just a glimpse of what would be a reality in Lucy’s future.
Then last year Mallory, Lucy’s mother, posted on social media:
“I have a rare syndrome,
I have a feeding tube,
I have a heart defect,
I have special needs,
But who I am is Lucy.”
And that was the inspiration.
As an actor, I am accustomed to playing a role—getting inside another person’s head. I imagined what Lucy would want to say to those people that looked at her, and all they saw was her differences. They didn’t see her, they saw the scars and what they perceived as defects. I believe she would say, “Those things aren’t me—Who I am is Lucy!”
While many people may consider this a good book for a child with special needs—and it is—the real target audience for the book is people like the little girl in the park and her father. And to be honest, people like me.
Available on Amazon: I AM LUCYPosted by Chuck Neighbors | 0 comments