7.01.02

It’s the ending of another day, the beginning of a new month. It’s a wonder that I can write in this journal everyday. What could I possibly have to write about? I rarely ever have anything fun to write about. I guess I use this journal as an outlet for my grief and frustrations. You know, it’s funny—I have only been alive for 13 years, yet most days seem to drag on endlessly.

I had an appointment with a new Speech Pathologist today. Her name was Ms. Lopez. It was almost refreshing to meet someone else who is single. My parents keep telling me that one day I will find the man of my dreams….but I guess the question really is: Will he find me? It’s funny to listen to my grandmother when I bring up “men.” She keeps reminding me that I am just a “youngin’”…..too young to be worrying about men. But what else is a grandma supposed to say? She is just looking out for her first (and favorite) grandchild! Anyway, back to therapy….. Ms. Lopez was 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..” Today 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. In the near future, 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! 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 are you supposed to talk to about boys…. I’m still dreaming about going to my very first old fashioned slumber party. My sister goes to them all of the time, and I am jealous. She always talks about how much fun she has, and how she can’t wait to go to another one.

But only one thing stands in the way of an AAC device…… MONEY. I don’t really know what the price tag is, but from the way my parents were talking, I guess it isn’t pretty. 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 new 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 chatting under a big shade tree. I so wanted to be a part of the group. I think I have figured out why my days drag on forever……I spend most of my time thinking about what my life could be like. I know I will never experience any of it, but dreaming is the only outlet I have right now. Sometimes I wonder how my parents handle the stress. I’m sure that having 5 “normal” kids proves to be stress enough, not mentioning what I add to the heap. I wonder if they dream about the “empty nest”. If I don’t find me a man someday, the nest may never be empty for them….

Well I guess that I have written enough for one day. Maybe tomorrow has something exciting in store for me…

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 wiritng 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 heard my sisters talking about the meaning of their names, and I decided it was only fair that I get in on the action, too. I had to find it on the internet, because its been a while since mom and dad had to pick out a baby name......

ZOE = ALIVE. How ironic is that? Most days I wish that I had never been born, especially with Cerebral Palsy. I don't care how "mild" everyone says my CP is......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 trying to get some money to cover the cost of an AAC device. I know that they are expensive, but why should that keep me from having one? I often wonder if anyone at Medicare understands what its like to not talk.... I bet if they did, they wouldn't be so hasty to deny 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 comatose before they would let me be absent!

My session did go pretty well. Ms. Lopez tells me that I am progressing "wonderfully." I'm still not sure exactly what that means. 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.

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 together items 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 right now 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. But I guess I am willing to do whatever it takes to get me 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 print within the next few days. 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 how we feel. 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 what my life would be like if I had that 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. 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 worry.

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.