For Emma… (This story is dedicated to all 11Q children and everyone who has a disability.)
I’m strong, smart, and beautiful, so why am I sitting here in my wheelchair staring out from a broken window?
Well, the answer to that question is a bit complex. You see when I get angry I can’t communicate that frustration, so I tend to throw and hit things. I can’t talk, at least not like you. I try to say things, believe me, but the only thing that comes out of my mouth are grunts and yells.
Today, I noticed Billy and Jennifer playing outside, and I so desperately wanted to play with them. They like to tease me and say hurtful things, so my parents try to keep me away from them.
Mommy, Daddy can I play with those kids? I try to say.
My Mommy smiles warmly, “We can go outside a little later, Sara.”
I’m not sure how my parents understand me, but they do!
My Daddy walks over to me and fixes my loose hair that always tends to fall across my face. He pats my back and proclaims, “We will go outside when those other kids go home. You know how mean they can be.”
I want to go out right now!
“Ahhhhhhh, Ugh! Ugh!”
I get so mad I swing my arm as hard as I can… CRASH!
Honestly, I didn’t know the window would break like that. My parents frantically grab my arm to check for any cuts. I can see the panic in their eyes, but they never get mad at me. They are so cool like that. I break a lot of things sometimes. Did you know that I broke three big screen TVs before?
Well, I did…
You have to understand that kids like me don’t have very good motor function skills. Sometimes when I’m playing with my toys, I can’t figure out how to work them. My parents try to help me, but I just don’t understand. I get so mad that I don’t even want the toys near me anymore. It doesn’t matter what the toy is. I throw it very far away, so I won’t have to see it again.
As you probably guessed, those toys flew like Superman - up, up, and away. Before I knew it - BOOM! - the TV was broken.
Don’t worry though, my Daddy fixed the problem by hanging the new TV high on the wall.
I love going everywhere with my parents, it’s my most favorite thing in the world to do. When we go to the store everyone likes to stare at me because I’m different. Mommy tells me not to worry about the other people, and that I’m special. I like to wave at everyone, but sometimes people look at me with a hateful look in their eyes. My Daddy gets really mad at them. I think it’s super funny because he has the best facial expressions I’ve ever seen!
I honestly can’t go outside very much because I’m allergic to everything. My Mommy is always worried, so she carries a special needle in case I have a reaction to something. We have these special air purifiers all over our house, so I can breathe better. Before I have my bath, I get to breathe in steam from my nebulizer that looks like a duck. It takes about twenty minutes and when I get bored, I snatch the clear rubber tubing away from my parents and make them work hard to get it back.
I have a great big unbreakable mirror in my room that I like to stare at. I don’t know who that person is looking back at me, but I think I have a special friend. My room is awesome because it’s decorated in a beautiful Disney Princess theme. Jasmine from Aladdin is my favorite, she is so beautiful. My parents worked really hard on it, and it’s my safe place to have fun without breaking anything. Mommy calls it the safe room.
Did I mention that I have twelve different doctors that like to see me every three to six months? It’s the truth.
When I have an appointment, it takes my Daddy three hours to drive me there. I like going to see the doctors because I get to see kids like me. Special kids. They have wheelchairs too, and it makes me feel happy.
When can we see the Doctor?
“Ugh! Ugh! Ahhhh!”
“They will call us when it’s our turn, Sara,” Mommy says.
Mommy pulls out her iPad, so I can watch YouTube videos. I love the dancing ones, I can’t dance like them, but I try to move my arms to mimic them. “You’re a good dancer, Sara!” my Daddy says smiling.
When I’m at home watching the iPad, sometimes I get mad because I can’t change it. I point and point, but it just doesn’t work. I watch Mommy do it, and it works all the time like magic. That’s ok because when I can’t get that thing to work, I throw the tablet across the room. I don’t have to worry about breaking it because Mommy put a rubber case on it.
Sometimes I feel bad for my parents because they will have to take care of me for the rest of my life. They don’t seem to mind one bit about that, and I’m so thankful that they let me be me. I’ll never be able to get married, go to work, start a family of my own, or take care of myself. I’m not even sure if I’ll be able to walk one day. That makes me sad sometimes, but my parents tell me that those things are overrated.
My parents have to wrestle with me just to brush my teeth and change my pull ups. I like to have fun and make them work for things. When I’m hungry, I will point to my mouth, so they know I’m hungry. Daddy likes to feed me, and he always reads to me before bed time.
My Mommy likes making me look pretty and she always flips out when I put one of my toys in my mouth. She seems to think I will choke on something, but I just like to chew on stuff. She takes care of important things like that and keeps a close eye on me. Someone has to watch me twenty-four hours a day, even when I’m sleeping to make sure I don’t have any seizures.
My name is Sara Evans. I’m ten years old, and I’m an Eleven Q kid. If you don’t know what that is, I’m afraid I can’t help you with that. Doctor Hummel told my parents all about it, and it sounds very complicated. As far as I know there are several Eleven Q kids out there, but we’re all different. Most kids fall into the Jacobsen syndrome category, but not me…
I’ve had extensive genetic testing, and I don’t fall into that category. I’m afraid to say that what I have hasn’t been seen before. I’m the only one that has this very rare genetic disorder, and there is no documentation for what I have or how it will affect me.
I like how all the doctors keep telling my parents to hang in there. Just hang in there. I’m not sure what that means either; I don’t see any handle bars.
I told you I was special...
If you see a kid like me out and about somewhere, don’t be afraid to say hi. We know that some people might be afraid of us, but we are not afraid of you.
That’s just a brief glimpse into my wonderful life. Don’t worry about the broken window because my Daddy always has a spare in the garage. Well, I have to go now, it’s time to play catch with my Mommy and Daddy.
It was nice to meet you!
Daniel R. Hayes