I have to write because I have something on my mind, and besides, I was watching the tv this morning, and they had something on that really made me think. They had a show called Maury, and on the show were people who were born disfigured somehow due to rare diseases, or became disfigured later in life (like this man they had on; he got some sort of rare fungus infection in his sinuses, and it caused him to lose a lot of his face; he really looked odd), and some of the people went through a lot of hell just because they looked so much different.
Kind of like me. I look like a normal girl--that is, I have hair, eyes, a nose, a mouth, a FACE--, but if you were to look at my shoulders you would immediately see that I don't have any arms or hands. I also am in a wheelchair because I had been born with spina bifida, which paralyzed my lower half and left me unable to walk. To get around I use a power wheelchair, and I have a special lever I control with my chin to make the wheelchair go. If I DO have "arms" I wear prosthetic "hooks" which act as my hands. With these hooks I can pick up and hold things, and I can do just about anything other than getting dressed. (I need some help with that.)
I also wear oxygen because I have damaged lungs, and I also have asthma. My lungs aren't just that strong. So the oxygen helps me.
People tend to treat me different just because of how I look, and it hurts me inside. I don't like being stared at or made fun of any more than any other kid does; and I don't like people telling me I can't do anything when I CAN. I can draw and write, read a book, type on the computer, brush my hair and my teeth, put makeup on, control my wheelchair (with my chin, remember), and sing. I only mainly need help getting my arms on and fastened, getting dressed, and getting to and from the bed. I also need help with my toilet. (I can't really tell when I need to go, so I wear diapers and a catheter; and every so often they both need to be changed or I can get a nasty infection and end up in the hospital as a result.)
Instead of trying to get to know me and finding out that I am not a bad person people tend to judge me just because I "don't look like them". That is not right. Or they judge me because I am dark-skinned, and I don't speak like they do. I am also a former Muslim, and people have really treated me badly because of that. I didn't bomb the World Trade Centers or the Pentagon; why punish ME when I HAD NOTHING TO DO WITH IT?? Besides, I don't even BELIEVE the way the terrorists do!! Oh, I USED to, but then I found Jesus Christ. I am NO LONGER a Shiite Muslim; I am a CHRISTIAN!!!!
I wish people could really get to know me and understand how I feel. I hate the stares, the rude comments, the ugly way they look at me, like I had bugs in my teeth or something...I wish they knew how much this hurts me inside and know that I don't appreciate the comments or the stares. I am just like anyone else; why single me out just because I happen to look different?
All About how Lila chooses how to handle her "worries" about the first day of school. Another Mom's Choice Award Seal of Excellence recipient in the "Kids with Worries" book series.
