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Living with Cerebral Palsy
The Brown family moved to Granite Hills, Montana. The family moved there because Karen's dad lost his job as a coal miner, he found a job as a granite miner. There was a mine just outside of the city. Her dad didn't know much about granite mining but he mentioned that he was a coal miner. The foreman said, "Robert, I know you don't have any experience in granite mining but you will catch on fast, I have faith in you and you will do fine."
Granite Hills was a fairly big town the population was 30,000 the town had shops and a huge shopping center, and several churches, a bowling alley, movie theatre.
Karen was 10 years old, Karen asked, "Mom why am I different from all the other children"? Mom said, "What do you mean by different?"
Karen said, "Well the kids at school tease me and make fun of me I always sit on the steps at recess because with having braces, I can't play ball or jump rope or anything the other kids do."
Karen continues by saying, "I would cry myself to sleep because I don't like to be teased and made fun of. I asked them not to tease me; they just laughed and continued to tease and to quit acting like a baby.
Mom said, "Karen I was hoping to wait a little longer with telling you what happened when you were born. I was in labor along time. You were too big to pass through and the doctors tried everything. The doctors even tried to use forceps' in doing this the doctor hit the left temple. The doctor ended up doing a C-section but the damage was already done. This affected the right side of your body. That is why you can't use your right arm and need braces to walk."
Karen told her mom, "I also blamed God making me this way; I just wanted everything to go away and make me a whole person. I felt that I wasn't a whole person because I was damaged goods."
Mom said, "I didn't know that, why didn't you tell me?"
Karen told her, "I didn't want to say anything because I felt that you would tell me that I was being silly and not to worry about it."
Mom responded, "I'm sorry you feel that way, I would never tell you that and neither will you're dad.
Karen also said, "Mom why do you treat me different than my brothers. That really hurt. I felt you loved them more than me.?"
Mom said, "I didn't realize that I was doing that, I'm just trying to protect you so you don't get hurt. I didn't realize that you blamed God?"
Mom said, "I love you just as much as your brothers?"
Karen asked, "What is Cerebral Palsy?" Her mom said, "Cerebral Palsy is a brain injury, the injury can happen before birth, during birth or after birth."
Karen asked, "Why do some people get it and some don't?"
Mom said, "I can't answer that because I don't know the answer, it can be caused by lack of oxygen, poor head position, premature births just to name a few. Even though dad and I love you we were talking and we think that you should start going to summer camp the camp is for children with disabilities."
Karen said, "I don't want to go to any summer camp?" Mom said, "We think that you should go because we think that it would be good experience for you to be with other children with disabilities." Mom continued, "Try it for one summer and if you don't like it than you don't have to go next summer."
Karen asked, "Where is this camp?" mom said, "The camp is in a small town about 30 miles from here."
Karen thought about it, and then she said, "O.K. I'll go but I am not too thrilled about it."
When Karen got to the camp she saw two girls talking, she walked over to them and introduced herself, hi my name is Karen and I have Cerebral Palsy." One girl said, hi my name is Susie. Susie said, "I also have Cerebral Palsy too. My mom lived on the streets and was on drugs, than she found out she was pregnant. She told me that she didn't want to keep me she wanted an abortion." But some of her friends told her about a half-way house for unwed mothers. They talked her into going and my mom stayed there until I was born." Susie continued, "I prayed to God, why am I this way?"
Karen said, "I used to ask God that too."
The other girl said, "My name is Carla, when I was about 7 I was in the back seat and a car came out of nowhere and ran into the backend of our car, and I was pinned under the front seat, the firemen had to use the Jaws of Life to get me out."
Karen asked, "I'm sorry to hear that." "What kinds of things do you do here like activities?" Susie said, "We sit around the camp fire and roast marshmallows and tell stories, sings songs."
Carla said, "Every summer the counselors talk to the Make a Wish Foundation and we go on an outing. "What kind of outings?" Karen asked. Susie said, "It's different every year."
The outing that they went on this summer was they went to a place that had a wheelchair accessible hot air balloon. Karen was excited she never did anything like this before. The balloon could only hold two people three with the instructor, Susie and Karen went together. As the balloon went around the designated area Karen said, "I feel like a bird and she spread out her arms like she was flying." Susie said, "Everything looks so small everything looks like ants."
The instructor said, "One summer we had a little boy that he was an astronaut and the balloon was a rocket ship." Karen and Susie laughed at that. After everyone had a turn the next stop was a farm that was designed for disabilities. The farm workers took the campers on a hayride those in wheelchairs were wheeled up to the wagon and then was carried onto the hay bales. They took a tour of the farm; they went by the horse stables. Susie asked, "Can we go riding?" the farm hand said, "Yes for those who want to ride."
Karen, Susie and Carla went horseback riding they were allowed to go on their own if they stayed in the secured area. Since Susie and Karen were wearing braces they only needed a leg up. Carla was in a wheel chair so she needed someone to lift her out of the wheelchair onto the horse. Karen asked, Have either of you been horseback riding before?" Susie said, "Yes," and Carla said, "No." Karen said, "She hadn't either."
The summer was almost over so it was time to go back home, the girls hugged each other and promised to write. When Karen got home she couldn't stop talking about how much fun she had.
Karen went to a school for children with disabilities when she got to middle school. Because of the teasing that occurred in the early years. Karen liked the school she made friend's right away she made friends with Jackie and her twin brother James. They both were in wheelchairs, Karen told them her story and Jackie said, "Our mom had complications and we were born too early".
Karen said, "Mom told me about multiple births, but I didn't know anyone that happened too." By 8th grade James had started to have feelings for Karen. James asked her, "Karen do you want to the soda shop sometime for a soda, we will be going to high school next year and I wanted to know will you be my girlfriend and maybe we could go steady."
Karen was surprised, she said, "James I think we are little bit too young to be thinking about that. I know I am too young and I have my whole life ahead of me, I am not ready to be serious about anyone yet." James was hurt but he said, "I understand,"
When Karen was in High school she was still was wearing braces but it was getting harder to walk. She went to the doctor and the doctor said, Karen I see that you are having trouble walking, I think we need to think of getting you a motorized scooter to help you get around a lot easier."
Karen agreed, "When will I get the scooter?" The doctor told her, "I can get the paper work done right now. You should have the scooter within a couple of weeks."
Karen loved her scooter she could go anywhere she wanted to go. One day Karen told her mom that she wanted to get her own apartment and start living on her own.
Her mom asked, "Why do you want to do that, aren't you happy here?"
Karen said, "Yes I am but I want to be more independent, and I want to eventually go to college."
Her mom said, "I don't know, I think we should talk to your father about this. I want to get his opinion."
Karen moved into her own apartment and it was not far from home so Karen could come over and mom could also come over whenever Karen needed something. Karen loved her apartment and the people that were her neighbors.
She loved to cook; she wasn't very good because her mom did all the cooking at home. At the apartment she met other people that had disabilities too. Everyone had different types of disabilities.
After Karen was on her own for a while, her mom asked, "Karen do you like living here, I didn't think you could do it?"
Mom continued, "Dad and I are very proud of you."
Karen said, "Yes I am very happy here, I'm glad I moved here. I found a job too working in a pet shop?"
Mom asked, "What will you be doing at the shop?" Karen said, "I will be working the cash register and helping with feeding the animals."
That's wonderful dear; I know you will do fine. You always loved animals." Her mom told her.
Karen said, "At first the owner was sure if he was going to hire me or not. I told him that he didn't have to worry. I may have a disability but I am very reliable and I won't let you down.
Mom said, "What did the owner say when you told him that?" Karen said, "He would give me a try and see how it works out."
The job worked out Karen was there almost a year. Karen's boss was very pleased with her work. One day her boss asked her to come into the office. Her boss said, "I have been thinking of hiring more people with disabilities, do you have anyone in mind that is looking for a job?"
Karen said, "Yes, my friend Jackie, we have been friends since High School and Susie since I was 10 I met her in summer camp for disabled kids. They both are in wheelchairs.
Her boss said, "fine could you get in touch with them and find out if they are interested in working for me and have them call me."
Karen called them, "They were excited about the job thanks for the information we will call him right away." The girls said.
Karen said, "You're welcome, call me later and let me know what happened, O.K. We will, talk to you later." Susie said.
About a year later Karen said, "Mom I love my job but I would like to give college a try." I know it won't be easy at first but I know I can do it."
Her mom said I know you can, dad and I will help you all we can." Karen had a hard time saying goodbye to all her friends at the apartment and at work. Karen knew that she was doing the right thing. She wanted to do something more with her life than doing retail jobs all her life.
The day came Karen said goodbye to her mom, her dad drove her to the school and helped her find her room, after getting Karen settled, her dad said, "Goodbye and call us if you need anything." Karen said, "I will."
Living with Parkinson's disease
When Karen got to the college she was overwhelmed by how big it was.
Karen was putting some of her things away when a young lady walked into the room.
"Hi my name is Pam but my friends call me peanut, what's yours?" Karen said, "Hi my name is Karen, I don't have a nickname. Why do they call you peanut?" Peanut said, "Well I always was the smallest one in school I just wasn't growing, and my friends and family started calling me peanut. No one could explain it but when I was in 7th grade I started growing and by the time I got to high school I was almost as tall as everyone else in my class, everyone was used to peanut that the name stuck. Peanut continued, "May I ask you something personal?" Karen said what you want to know." Peanut asked, what happened to you, why are you in a wheelchair. Karen said, "I was born with cerebral Palsy." I started out with braces, than when I started High School I got a motorized scooter." Peanut asked "I need to think of a nickname for you." I think you look like a kitten to me." Karen said, "Why kitten do you think I look like a cat." Peanut laughed, No you just seem shy to me that's all."
Karen asked, "What classes are you taking?" Peanut said phycology, and economics I am going for nursing, what about you." Karen said I am going to be a social worker or counselor for teens and young adults. Especially people who have some type of disability." Peanut said, "We will be in some of the classes together." Karen said, "I guess we will, I think it will be fun, and we can study together." Peanut asked, "Do you have a boyfriend?" Karen said, no?" "We have to take care of that?" Peanut said. "My boyfriend Peter's roommate's name is John, I am going to talk to Peter, and maybe we could get together Friday night for dinner and a movie." Karen said no I'm not interested in a boyfriend right now maybe never." Peanut said, "Why not." Karen told her, "Who would want me as you can see I am in a wheelchair. Peanut commented, "John won't mind, his dad is in a wheelchair."
It took Karen a few weeks to feel comfortable being alone with John. John asked, "Tell me about you, family and things like that." Karen said, "I have three brothers, Robert Jr. Thomas are older than me, they are married and have families of their own. Jimmy is in high school. Karen continued, "what about you, any family." John said, "I have two sisters no brothers. My sister's names are Judy and Sandy."
Judy and I are twins but she got married after high school, mom and dad weren't too happy. They wanted us both to go to college. John continued, "May I ask you something, I was wondering, are you a Christian?" Karen said, "yes, I am." John said, "so am I." I was also wondering if you would marry me." Karen said, "you mean now." John smiled, "no not now, I mean after college."
Karen said, I never thought about getting married because as you can see, I am in a wheelchair and I don't what anyone to feel sorry for me.
John said, "I love you for what's on the inside not the outside." John continued, Karen you are a wonderful and beautiful young lady it would make me very happy and privileged if you would be my wife."
Karen smiled, "Yes John it would be my pleasure to be your wife."
When Karen got back to the dorm Peanut was in bed, so Karen was trying to be very quiet. Peanut said, "You're back, what time is it?" Karen said, I thought you were asleep, it is a little after midnight." Peanut asked, "What did you and John talk about?" Karen said, "We talked about our families, and John asked me to marry him." Peanut said, "Sat up, what did you say?" Karen said, "John asked me to marry him." Peanut said, "Are you serious, what did you tell him." Karen said, after we graduate I would marry him."
Thanksgiving was just a few weeks away and Karen went home for the weekend. Karen called her mom, "hi mom, is it alright if I bring a friend home with me. I have someone I want you and dad to meet." "Mom said, yes its fine, is it peanut." Karen said, no, it's not, my friends name is John." "Mom said, whose John." Karen said, "John is my boyfriend and before you ask, John is a Christian, can I bring him home?" "Mom said, you may, bring John." At Christmas John took Karen home to meet his family, John's family loved Karen and Karen's family loved John. Everyone thought they would be a good match.
After graduation John and Karen got married. It was a beautiful day except for one thing. At the reception Robert lost his balance and fell into the table. Karen saw what happened. Karen said, "Dad are you alright." Dad said, "I'm fine, I just lost my balance. I have been losing my balance a lot lately." Karen said, "What's wrong." Dad said I am in the early stages of Parkinson's disease." Karen said, why you didn't tell us." Dad said, "Mom and I were going to tell you and your brothers, but we didn't want to ruin your special day." Karen said, "I know some things about Parkinson's disease, but not much." Dad said some of the symptoms are losing your balance, depression, muscle aches and pains." Dad continued, "Eventually I will be in a wheel chair." Karen asked, is there any treatment or cure." Dad said, "There is no cure, but medication will control the symptoms."
Excerpted from Living with a Disability by Rachel Starr. Copyright © 2012 Rachel Starr. Excerpted by permission of AuthorHouse.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Living with Cerebral Palsy.................... 1
Living with Parkinson's disease.................... 19
Living with Epilepsy.................... 35