In Lili’s Own Words

Originally written for the Children’s Craniofacial Association, October 25, 2008

Hi, my name is Lili Smith. I live in San Francisco, CA with my parents and older brother, Abram, who is 18 years old and a senior in high school. For fun, I like to work out at the gym, surf the Internet, sing, watch TV and hang out with friends.

One day, my tutor (I’m home schooled) showed me an article in our local paper that said you could apply to be a member of the Youth Leadership Commission for my county. When I heard the word “youth” I was really nervous. I didn’t know how the other kids would treat me. At first I was hesitant and said “no thank you,” but my tutor did the right thing when she pushed me to do it. I filled out the application with her, wrote the essay and went by myself to the interview.

This August, when I came back from sleepaway camp for a month, one of the first things my mom told me when she saw me was that I had been accepted onto the Marin Youth Leadership Commission! I was really excited but at the same time nervous because I didn’t know how I would do with the other kids. Now that I’m on the commission, I’m having a great time. A year ago I never believed this could have been possible.

All of my life I’ve grown up with Apert syndrome, which has affected the way people think of me and the way they treat me. My years in our local middle school were some of the hardest and worst I can remember. My peers really didn’t accept me for who I was, and my teachers didn’t believe I could learn. I never thought it would be possible to do the work that I am doing today in my home school. I now know that I am equal to my peers. My teacher taught me to believe in myself, and I’m working as hard as I can at school.

This summer was the first time I came to a CCA retreat, and I had a great time. I found kids who felt exactly the way I did about life — they didn’t feel equal to kids who had no differences. I talked with the other families and realized that all of us kids have so much in common; they go through exactly the same things as I do.

One other thing: I hope that by being a member of the Marin County Youth Commission I can be an advocate for special-needs kids in our school district. It’s important to me to bring some of our concerns and challenges to the table.

And one final thing: Do not ever let someone tell you that you can’t do something — not even yourself!