My daughter will be 10 years old in just a couple of months. She has cerebral palsy (CP). Her CP mainly involves her legs, but spasticity can startle her at any time all over her body. Some days are harder than other days, and some days cerebral palsy is not a big deal.

Since March is cerebral palsy Awareness Month , I decided to ask her some questions about her disability. All italics are mine and added for clarification and commentary.

What does it mean to you to have CP?

Nothing really because I’ve always had CP.

Is it good or bad to have CP?

It’s both and sometimes nothing.

Other people say if it is good or bad I guess.

Some people say it’s bad because I’m different, and I don’t like when people think I’m different, like the way I walk. Other people say it’s good because that is how God created me and I think that’s good too.

What do you wish people knew about CP?

About how people treat you.

How do they treat you?

Sometimes they call me names or they make fun of the way I walk.

As far as we know, nobody has actually called her names, what bothers her are the questions about her disability, and she is particularly self-conscious about the way she walks. This is a result of kids asking her things like, “Why do you walk like that?” “What’s wrong with you?” or the most memorable that happened three years ago but she has not forgotten, “You walk like a penguin.”

I wish people knew how difficult it is.

What’s difficult?

Seeing other people who can walk, I cannot. They can jump rope, I cannot. They can run, I cannot. They can do things I cannot.

Do you wish you did not have CP?

Yes. No. I really don’t know. I’m curious about what it would be like to not have CP.

Curious. A word we have learned at therapy, we are curious about lots of things and feelings.

What is one thing you really want people to know about what to do when they meet someone with CP?

No pushing without asking, it makes me so mad!

She is referring to her wheelchair. Last Fall she had an experience at a store that really really bothered her. I was at the check out lane and she was an aisle over (the lane was closed) looking at the toys they usually have there to entice kids. A well meaning lady grabbed the handles of the wheelchair and brought her to me. When I looked at Nina her face was upset.

“Oh, did she ask you to bring her over?” I asked.

“No, I just brought her to you.” She smiled, she was well meaning, I get that, but still…

“Thank you, but she can do it on her own, she does not need help.”

The lady looked at me like I had grown two heads, or maybe she thought I was ungrateful. One thing is for sure, she was not thinking about how that made Nina feel. She did not once look at her face or she would have realized how upset Nina was.

On our way out Nina said, “She didn’t even ask me mom, she just grabbed me and pushed me without asking!”

That was also the day I learned that you always ask before pushing. Our agreement now is we don’t push unless she asks us to.

What are the good things about CP?

That I am different. That I am myself.

Isn’t this life, how the same thing can make us sometimes feel special yet other times feel like outsiders?

The bad thing is I cannot find a lot of people like me. But I guess the good thing too is that there are some people like me.

Nina has two mentors who have CP like her. The connection has changed her life in very positive ways.

I wonder how her answers will change as she gets older. Maybe I will ask her every year.

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I could have asked Nina different questions, and we tried, but for some of my questions she did not have answers yet. I think as she gets older her self awareness will also increase, and she will have more to say. And hey, don’t forget to connect on Facebook!