*This genre piece contains a collection of fictional journal entries written by Zoe. She is a 13 year old who was born with Cerebral Palsy, and is unable to communicate through speech. Her Speech Pathologist, Ms. Lopez, and her parents, are seeking to get Medicare coverage for an AAC device via a court case. Her entries progress from the first time she learned about AAC devices, to the night before her court date.

7.01.02

It’s the ending of another day, the beginning of a new month. I can't believe it is already July. My summer is flying by. I'm not ready to go back to school yet. I get tired of the stares and laughs. I get tired of being unable to participate in activities. I get tired of having no friends. At least during the summer I don't have to deal with all of those things like I do during school.

I had an appointment with a new Speech Pathologist today. Her name was Ms. Lopez. She moved to San Diego from Huntington, West Virginia. That's all the way across the U.S. She is 26 years old, single, and much nicer than I had expected. Unfortunately, my record with Speech Paths has not been that great. I can only think of one other SLP who I even remotely liked. Maybe today was the “beginning of a beautiful relationship..” We spent most of the time getting to know each other. It was a nice break from most of the sessions that I am used to. Within the next week, we are going to discuss the possibility of getting me an AAC device. I’ve heard a lot about AAC devices, and they sound so cool! Ms. Lopez is going to show me some of the devices available, and teach me how to use some of them. She said that she hadn't decided which device was best for me yet, but I am sure her decision won't be far behind. I can’t imagine what it would be like to be able to communicate with my family. Maybe if I get a device, I can make some friends. Ya know, a girl shouldn’t have to go through life without any friends. Who else am I supposed to talk to about guys?? And trust me, there are plenty of guys to talk about. Maybe Ms. Lopez and I can have "girl talk" one day......

Anyway, only one BIG thing stands in the way of an AAC device…… MONEY. I don’t really know how much they cost, but from the way my parents were talking it isn't pocket change. They were both talking about getting part time jobs in addition to their full time jobs. I know that they want what is best for me, but I’m not sure its worth it. Let’s face it. I will never be normal. Even though it would be nice to have a device, I think my chances of getting one are pretty slim. Ms. Lopez told my parents it would definitely be an investment. I should say so. I guess we will just have to wait and see what happens.

Therapy was the only time I spent out of the house today. When we came home, I saw a group of girls sitting under a big shade tree. I so wanted to be a part of the group. I have always dreamed about being a part of a girl's club. Not having any friends makes my days drag on forever. I have way too much to sit around and think. I decided that my theme song for my life is going to be "I Keep Looking" by Sara Evans. I was listening to it the other day and I realized that it sums up my life pretty well. Here is my favorite part of the song:

"I keep lookin', I keep lookin' for
I keep lookin' for somethin' more
I always wonder what's on the other side
Of the number two door
I keep lookin', lookin' for somethin' more."

"Well, the straight-haired girls
They all want curls
And the brunettes wanna be blonde
It's your typical thing
You got yin, you want yang
It just goes on and on"

"They say, hey, it's only human
To never be satisfied
Well, I guess that I'm as human as the next
one." "I Keep Looking" (Evans, 2000, track 4).

That song is so about my life. I want what is on the other side. I want what is behind the other door. I want to be normal. I want to speak.

It's past my bedtime....this journal writing keeps me up way too late at night! ~Sleep tight~

07.15.02

I decided to try something new with my journal writings. I was looking back over my entries for the past couple of months, and most of them look like long chapters in a book. I thought it would be nice to shorten my entries. I guess since writing is my only outlet for communication, I probably write more than the average person. But we will see how it goes.....

I looked up the meaning of my name today. I saw an ad on TV today for a baby name book, and I realized that I had no idea what my name meant. I thought it would be cool to find out.

ZOE = ALIVE. How ironic is that? Most days I wish that I had never been born, especially with Cerebral Palsy, "mild" as it may be. Trust me, it's not mild enough. I can't talk. I can't express myself; yet I'm alive. I wonder if my parents knew what my name meant before they gave it to me?

Ms. Lopez and my parents are still working to get funding to cover the cost of an AAC device. I know that they are expensive, but why should that keep me from having one? Ms. Lopez thinks that Medicare is our best shot. They cover some AAC devices.... maybe they will cover mine. If those people at Medicare knew what my life was like, I bet they wouldn't hesitate to give me a device.

Well, I was having a pretty good day until I thought about those Medicare people. They make me so angry. I wish they could live in my shoes for just one day.........just one.........

07.21.02

I woke up feeling kind of sick.....my head hurt, and I had a bad case of the sniffles. Even that's not a good enough excuse to miss my speech session. I think I would have to be in a coma before they would let me be absent! But it's okay. Ms. Lopez and I have a great time together! She is the only friend I have right now, besides my family.

My session did go pretty well. Ms. Lopez tells me that I am progressing "wonderfully." I'm still not sure exactly what that means. It turns out that Medicare won't cover my AAC device because it is run through a laptop computer, but Ms. Lopez insists that the laptop device is the best one for me. Part of me says "I don't care what device it is," but I trust Ms. Lopez to make the best decision. She did give me one ray of hope, though. After talking with my parents, they decided that pursuing a court case to cover the cost of my device was the best option available. The thought of going to court makes me nervous. I don't know why, though...... It's not like I could actually plead my case or anything. Someone else will just have to speak for me.

Oh, one other exciting thing..... Dad's guest column was in the paper today! I always knew that Dad could write, but I never realized how well until today. His column was awesome! I hope that people better understand what my life is like. I am so thankful to have him for my dad. I think I am going to cut the column out of the paper, and frame it. Maybe one day his grandchildren will enjoy reading it!!

Anyway, between the cold and the thought of going to court, I am exhausted. It's time to get some beauty sleep. Just thought I would fill you in on the days activities....

07.30.02

I haven't had much time to write in this journal lately. It looks like the court case is a go.....right now our court date is set for 08.26.02. That's less than a month away. I keep telling myself that I have nothing to be worried about. There is no way that they will call me to the stand or anything. And even if they did, I would just have to sit there and look pretty! I guess I could write on pieces of paper if they asked me a question. Right now Mom, Dad, and Ms. Lopez are spending lots of time putting items together to present in court to plead our case. Honestly, I think that me sitting there not being able to talk is testimony enough. Do I really have to prove that I can't speak? Is it that nobody believes me or my family? I'm still trying to figure out what this whole Medicare thing is about. I know that they won't pay for my device, but I don't understand WHY. I think they should have to explain it to ME; not to my parents, not to Ms. Lopez. I'm at the center of this whole debate anyway. I have the right to know, don't I? I guess I could go on about this subject for days, but I'm not getting anywere.......

Today we went swimming at our friend Jaxson's house. It was alot of fun. If I'm going to be outside in hot weather, I want to be in a pool!

08.02.02

It's been crazy around our house lately. Mom told me yesterday that Ms. Lopez wants to use some of my journal writings in the court case. She thinks that they are a great way to show people what life is like for me. I'm still a little unsure about the whole thing, though. I have never shared my journal with anybody, not even my mom. It's kind of weird thinking that I would be sharing it in court. Maybe I should let Ms. Lopez read some of my entries first to see what she thinks. They are my only outlet of communication, so maybe I should go with it. I am willing to do whatever it takes to get a device. I so want to be able to communicate other than through writing. I want to be involved with my school, my friends, my community. I just can't imagine how different my life would be with a device.

08.05.02

I can't believe it....Ms. Lopez did an interview with some lady from the San Diego Sun Times about our court case. My story is actually going to be in the paper within the next few weeks. I never thought that we would get so much attention from the case. Ms. Fredeking says the interview was a good way to let people know where we stand on the issue. I sort of wish that I had been there during the interview. I couldn't have said anything, but I could have written some things down on paper. I think it would have been kind of cool to include my thoughts in the article. Oh well. I am just glad that Ms. Lopez agreed to do it. Maybe all of the attention on the case will be good luck for me! Hey, maybe if I get my device they will do an interview with me. Then I could tell people how much better I can communicate. It sounds like a great follow up story to me. Maybe I will mention that to Ms. Lopez............

08.10.02

Well the court date just keeps getting closer and closer, and I keep getting more nervous. I have noticed that my journal writings seem to be a little more upbeat than when I first started writing. I can't really explain it. Maybe it's because I keep imagining my "new" life after I get a device..... It's like I feel happier just thinking about it. I have tried not to think about how I am going to feel if the judge tells me I can't have the device. I think my world will crash in on me. That device is the only thing I want out of life right now. I could care less about clothes, jewelry, or makeup, or guys. (Although guys are second on my list ;) I just want to TALK. How hard is that for everybody to understand? I can't describe it, and I guess nobody can understand unless they have been in my shoes. It's hard being a 13 year old....I'm too young for all of the stress. I just want to have one day of life free from stress and anxiety.

08.21.02

I don't have much time to write. It's been a long day, filled high with emotions. This whole court case has gotten me in a tizzy. I'm just ready for it to be over. But guess what? The interview Ms. Lopez did was in the paper today. It was so exciting. I was so proud to call her my therapist! She did such a good job. Lots of people in our community have been saying mean things about us because Ms. Lopez recommended the laptop. So I think the article will be good for my family. Hopefully people will see the other side of the story. Hey, even the lady who did the interview wants to meet me.....I almost feel famous or something! I hope this famous girl can get some sleep......

08.25.02

Well, it's late so I probably won't write much. It's already after midnight, and I am not even ready for bed. I can't believe its the night before the court case. I feel like I have a million butterflies flying around in my stomach. I know I need to get a good night's sleep, but it's not going to be easy. I am trying to prepare myself mentally for what is going to take place in that courtroom. I wonder if the judge will make his ruling tomorrow, or will we have to wait? I don't think I could handle the waiting game. I just want to know. Ms. Lopez and my parents have worked so hard to prepare. I am so blessed to have them on my side. Either way, I know that we gave it our all. I am really trying to think nothing but good thoughts, but I also don't want to get my hopes up too high.
Aaaack, we have to be in the courtroom in less than 8 hours.........I am going to hop in bed and try to get some sleep. Sweet dreams.