"I know you've been feeling down these last few days so I thought I'd send you a story about my son,' read the email. I was pleased that my inbox read re: Hey Dave, It's Not Spam. I often worry that I erase emails that are actually for me in my rush to avoid requests for help in distributing 50 million Pounds. The email was from a regular blog reader, a woman without a blog to post stories, and she wanted to cheer me with a story. I love stories and settled back to read. After finishing I asked her if we could talk on the phone. She said, 'Sure'. During our call I got all the details of the story and then asked her if I could write it here. I am writing in her voice, I don't often do that but that's how this came out. She's approved the story. Here's what she told me:
My son is now just 14 years old. He has cerebral palsy and we've been sure from a very young age that he understands that he has a disability and we've answered every question he's ever asked. We've never said, 'You are just like everyone else'. We've never lied to him about his difference. At the same time we've let him know that his disability is just one part of him. That we still expected him to be our son and that there were expectations that came with that role. His brothers still expected him to be their brother and that there were things that he had to do to keep up his end of the bargain. Sure he has a disability, let's not kid about that. Sure his world is different than our other kids, let's not kid about that either. But he's still him and he still has a unique role in our life and in the world.
Over the years there have been frustrations on his part, on our part on the part of our other children. We've never downplayed them or pretended they didn't matter. We've never said to our son, 'Don't feel that way.' We've never said to our other children, 'You shouldn't feel that way.' We figured that we'd all best be honest and real with each other and the situations we find ourselves in. We've been criticized for some of our parenting strategies but as we were, for the most part, a happy family we let the criticism slide.
Here's the point of the story. Our son went for an appointment to talk to someone about his future. Job interests, vocational planning, that kind of thing. One of the questions that he was asked, probably to get at his interests, was 'What do you think you would have done if you didn't have Cerebral Palsy?' My son, we were told, stared blankly at the woman doing the testing and then after a long pause said, 'Nothing?' She was surprised and said, 'Nothing?' He said, 'Yes, because then it wouldn't be me.'
She talked to me later with concern because she thought he had begun to limit himself in some way. I, however, was thrilled. I asked her if she would ask a black kid what he would be if he were white and she was horrified. I told her that the question she had asked my son was equally horrible. She was asking himself to see his disability as a burden, something that he should shuck off if he could. It would be a way of thinking that would have him perpetually, in his mind, as a victim.
Later I asked my son about the interview. Deep in my heart I really wanted to know if he ever wondered, ever asked himself 'that question'. As I spoke to him I think I saw him for the first time. A young man who knows who he is. A young man who wishes to be no one else. A young man that I love with every bit of my heart.
When I told my husband about what happened he wanted to walk straight over to that woman's office and give her a piece of his mind. His son, the one with cerebral palsy, should never be put in the position of apologizing for who he is and wishing he was someone else, he said. "Don't you ever ..." I began asking my husband, and he said, 'When he was little yes, sometimes, but once I really met him, never again.'
The email and call did cheer me. In fact, writing the story brightened my whole day. There is much here. Much to think about. Instead listening to me ... I'd like to listen to you. What say you to the mom who told me this story.