My Life As Alyssa's Sister

	SEARCH 1,000 stories, 75 discussions BROWSE 75 contents pages SUBSCRIBE to free e-mail digest
ARCHIVES \| BOOKS \| CRITERIA \| DIGEST \| HOME \| LINKS \| MAP \| MISSION \| ONGOING DISCUSSIONS \| RULES

How has your disability affected your relationship with a brother or sister?

Name: Sherri Brown
Email: gypmis1@dellnet.com
Date: 16 May 2000
Time: 12:25:07

Story

Lots of people complain about life, but what are they complaining about? They have too much work to do; they need an extra hand to get everything done. Have you ever thought about those who only have one hand?

Life is very hard for those who are "different". Have you ever put yourself in the position of someone who is different? Have you ever sat in a wheelchair and watch people stare? Do you know what it feels like to be different? Do you even know what different means: "Are they normal? Can they swim? Can they eat? Can they talk? Can they draw? Can they see what I see?"

I am talking about people with disabilities. I have a sister who is 18 years old, who has Cerebellar Hypoplasia, or simply an underdeveloped cerebellum. The cerebellum is a part in the brain that controls muscles and balance. When someone is said to have an underdeveloped cerebellum, this person has weak muscles and does not have very good sitting or standing balance.

My sister, Alyssa, was diagnosed with this disorder when she was a baby. She was born this way, but doctors did not know what was wrong with her until they saw that she was not sitting or crawling at a normal age. Alyssa’s speech is not as clear as mine because she has weak muscles. She is also learning disabled, which means that she has trouble reading and writing.

As her younger sister (I’m 14 years old), I have learned a lot from her. I learned that you never judge people by how they look, how they talk, how they walk or that they use a wheelchair. I am very close to Alyssa; we do just about everything together. I can’t say that it’s just like having a "normal" brother or sister because she is my only sibling.

There are things that I can do that she can’t. For example, I can walk, and I can run. I don’t have any trouble speaking. It’s very hard for her to see me going in and out of stores wpeA.jpg (13587 bytes)

when she can’t because they are too small for her wheelchair. Alyssa can walk with crutches or a walker for a short period of time. Still she will not ever be able to walk without them, no matter how much therapy she gets. Not every store is handicapped accessible. Some stores are too small for Alyssa to get in and out of. It’s very hard because some people don’t care to make changes for "different" people.

Alyssa and I are the best of friends. She is friends with my friends, just as I am friends with her friends. She means everything to me. From Alyssa’s point of view, she realizes that she is disabled and is different and can’t do everything a "normal" kid can. I am Alyssa’s best friend. I am like her extra hand that everyone needs. I am always there to watch her do anything she has accomplished. For example, she participates in the Empire State Games for the Physically Challenged. She does many events, and I am always there to cheer her on. I also go to all of her school basketball tournaments because Alyssa is a cheerleader.

Sometimes it’s nice to get away from her - just like everyone who wants to get away from their brother or sister. She can be very annoying, just like everyone else. She loves to shop and spend money. Her favorite things are boys, pocketbooks, and makeup.

Alyssa goes to a special school for the disabled. She has great friends who I am also close to. I am a freshman in high school, and, if Alyssa went to the same school as me, she would be a senior. At times I wish that she did because, when I started high school, I was scared and all my friends had older brothers or sisters to show them around the school.

Alyssa gets physical therapy, speech, and occupational therapy. She has therapists come to the house to work with her to build her up. I see everything that these therapists do. I have decided that occupational therapy is a great career, and I want to pursue that as a career. Everything Alyssa does has an influence on me.

I once went to the mall with Alyssa, and she said that she wanted to walk, so I sat in her wheelchair and went for a ride. No one at the mall knew who I was, but they saw that I was in a wpe8.jpg (20590 bytes)

wheelchair. People stared, little kids asked their parents what it was, why I was in it, and others just smiled, feeling sorry. You don’t know what it feels like to be "different", even though you may sit in that chair for a few minutes. I got just a small feeling of what it is like. You can never know what it feels like, even if you sit in the wheelchair for days because you’re not the one living that way.

Alyssa’s friends are my friends. I talk to her friends on the telephone and on the Internet. Some of her friends have brothers my age so it’s nice because we can all get together. At times, it’s very hard for Alyssa to watch me leave the house with all my friends because she knows that she can’t go. Although she does come along sometimes, I need the break.

Having a sister with a disability gives me more responsibility. It’s worse than being an only child. I have to do more chores around the house because she can’t. I always have something to do; my life is never calm. Sometimes my mother asks me to help her with her bath because she can’t do it on her own. I have double the responsibility than a "normal" child would. Sometimes my parents will run out, and I have to stay home and keep her company. Occasionally I have to alter my plans to stay home with her. It’s like having a little sister that will never grow up. Alyssa has an aide to come and help her, but sometimes Alyssa complains that she does not need the extra help - that she can do everything herself, even though she can’t. Alyssa tries to be independent. She tries to get herself ready in the morning and do her own makeup.

Everything that I do has an influence on her. For example, I had gotten my ear pierced for the 3rd time. Alyssa had always told me that she would never do that, and two were enough. Once she saw that I had gotten it done, she went to the mall the next day to get her third piercing. I am her role model.

I baby sit every week, and Alyssa knows that she can’t do that. She gets very mad sometimes when she sees that I can go out and get a job, while there are very few jobs out there for the disabled.

I have gotten very involved in working with the disabled. I enjoy it very much. I have volunteered at United Cerebral Palsy (UCP) as well as at a sleep-away camp for the disabled and the Empire State Games. For two years in a row I volunteered at Alyssa’s sleep-away camp. I spent nine days for two summers working with the disabled. It was very rewarding and makes you feel better about yourself. I also met a lot people and learned about different disabilities. It was a lot of fun and it was a great learning experience.

I have thought about life and what it would be like if Alyssa were "normal". Sometimes I sit in bed just to think about how my life would be different. Everything would be different. I cannot change the way Alyssa was born, but I can help her to feel good about herself, and tell her that she is perfect the way she is.

Our house is accessible for Alyssa. We have a stair glide that she sits on to go up the steps, a ramp in front of the house, handlebars in the bathroom, and a special lift for the car. To me my house is normal, but that’s because I live in it. When Alyssa and I go to someone else’s house and she calls because she needs help in the bathroom, I ask why, forgetting that my house is "different". To get around in our house, she crawls or uses her walker. Her room is decorated in her favorite colors - pink and purple. She has a low bed so she can get on and off easily. She has a low nightstand where we keep her telephone so she can reach without a problem.

I love Alyssa very much. I love her for who she is. My life as her sister is very different from a "normal" kid my age. I believe in her and believe that she can do anything she wants to, even if her problems get in the way. Alyssa is "different" but is a very "normal" teenager. I will always be there to help her with whatever she may need. I am her sister and her best friend for life.

My Life As Alyssa's Sister

Story

Last changed: October 20, 2003