Brutal Side of Life

March 10, 2009
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When we left Washington Heights it was as if I was torn apart into two pieces. My parents put my younger sister in the car seat and me next to her and my brother on the other side of her. I was super quiet; no one heard a single sound from me it was as if I was dead with my eyes wide open. I can hear my parents talk about how they want the house to look, who is room is going to be whose, and how the school was the best in the county. I was unfamiliar with the area. The house was very different from the one bedroom, tiny kitchen, a large living room, and no dining room. When we arrived I could see my aunt and uncle were in a very big house and an enormous truck putting our stuff in the garage. My parents were on the steps of the house waiting for my aunt and uncle to give my mom a candle and told all of us when we come in the house step in with our right foot in first and have God in your heart. The candle was similar to a lantern, but had the holy oil in the little bowl and a piece of clothing that lays in the oil and it is lighted. In Malayalam we call it a veliaka. I did all the things she asked me to then my mom looked at us and said this is your new house go look around. It was like I was opening presents for my birthday, but felt so much more, like I was making a new discovery of things that I never saw before. My parents were so happy to see how we all liked the house so much and accepted like our own house so quickly. My mom was crying God's name and saying thank you, thank you for all the great things you have done for us. Before everyone left we had a small prayer, we all thanked God, and asked Him to guide us and make us wise enough to make the right decisions in life.

Tomorrow I start school; I am getting scared even thinking about it. My parents did not wake me up as early to go to school. I would have to wake up at four o'clock to go to school, but today I woke up at seven o'clock. I just stayed in my warm bed for an extra hour all wrapped up in my blanket. I woke up and I got dressed. My dad said that he would drop me off and when I take the bus home my mom will be standing there for me. My dad wrote our new address on my notebook and said show this to the bus driver just in case. In the car, my dad said this is your new school. It is very different from your other school. You will receive more attention here. My heart was pounding so hard. I thought that it was going to jump out and run away. I wanted to so badly because I did not know what to expect when he said that it was going to be different. My dad walked in with me I was like a rock. I did not want to move out of the car. A teacher came up to me and asked my name, I didn't say anything. I was too nervous and scared of the teacher. The school was so quiet from my other one; I would always hear a teacher yelling at a student or a bunch of students talking in the corner. She brought me into class. Everyone was sitting on the rug and a tall woman came to me and said you must be our new student. I just entered first grade in a new school completely lost. She called out the manes of a couple of students Laura and Marie and, told me they will show me around the class and school. Again no words came out of my mouth as if it was wired shut, I just nodded my head. In the background, I hear the teacher assistant yelling at some people. Ms. Strayton, my teacher showed me my desk right in the middle of the classroom, where everyone could see me. Everyone sat down at their desks. I felt more comfortable with them because they didn't ask me a bunch of questions. I felt like there was something wrong with The Boy that sat in front of me because every second he would look up then down. When we were going to special, I told Laura the Boy has something wrong with him because he would look up and down in an unusual way. I thought maybe he should go to the nurse. She told me if he bothers me then I should tell the teacher. I could hear the other students whispering to each other, but I had no clue what they were talking about. I was too busy looking around the school everything was so clean, organized, and quiet. After special we had lunch. It is very different from my other school. In my other school the meal was on a tray, we would just pick and choose. But here we were served as an individual. They would ask us what we want and they would give it to us. I got my lunch and sat in the corner alone with nobody to talk to and even have just beside me. I felt bad that I didn't bring my friends with me they told me that I shouldn't leave that they will miss me a lot, here I have nobody. The cash register woman, Barbara came up to me asked me if I was new, I didn't do anything. She handed me a candy, and started talking to me as if she knew me. I told her that I am a new student, I have an older brother that goes to middle school and younger sister and I talked about where I used to live. After lunch we all went back to class, it was now language arts. Ms. Strayton called me over; she was talking to three other teachers. I thought why everyone wants to talk to me, am I that famous. Does everyone want to be my friend? They brought me to a small room; it was like jail but with color, toys and older people. I was trapped I could not go anywhere I was force to stay with strangers. They asked me all types of questions, they want to suck all the information out of me, but I stayed strong and did not say anything besides nodding my head every occasionally. They bribed me with candy and snacks I had to give in, they asked me to write the alphabet for them, write my name and to write a bunch of sentences. Every time I did something, they would complement me and say that I am so smart. It was the end of the day. I am so tried; I could go home now and tell my mom what I did in school. The first couple of days of school were a constant routine, meeting new people and introducing myself to them. When would this ever end?

I came into the classroom and there is an envelope on my desk. I open it so excited, it is a birthday party invitation. The Boy yells out 'You invited her! She is a freak, why would you want to invite her she not normal.' Everyone froze, I had no words. I felt so nervous, scared, confused and hurt. The boy who invited me said that his mother invited me because he had to, not because he wanted to become friends, but because he was forced to. I never really realized that I was different until The Boy said it; no one really knew who I was and judged me before even getting to me. I moved to different place, different from my hometown where everyone knew me. They made me feel like I did not have anything wrong with me; I was a normal human being. I just realized that I sat in front of the meanest boy in the universe. Everyday he had something new to say about me and how I was not like him. Everyday The Boy would constantly yell out to me 'Oh my God! Don't look at me.' The laughing aloud, the giggling, the whispering, pointing at me, and calling me names, I knew everybody was making of fun of me. Sometimes I would want to cry in front of them and scream STOP! School changed from not a big deal to a death chamber. Stepping into the classroom praying when school was going to be over, why my parents had to over here? A nobody land, no friends, no relatives, no one to talk to about my problems. I am scared I need somebody. I would get off the bus and run home. In my room I would cry thinking why is everyone being so mean to me, what did I do to them to make them feel this way about me, why did people not like me all of the sudden. I had friends, family members, everyone who loved me, why did we have to move? Everyday I would question God and cry why you had to create such mean people in the world and why you had to make me go through this? Every night I would pray to God, give me strength to go through the next day without everyone being like this to me. I hid it from my parents because I would ask them what is wrong with me and every time they avoided the subject. I knew they know the answer but did not have the strength to tell me and why was I just me and no one else in the family. I could not take it anymore and I told my cousin who is like an older sister about all my problems. She told me that I was born with something that will stay with me forever. That they didn't know how special and gifted I am, how God gave me back my life to show, to tell, to make them aware of Treacher Collins Syndrome. I have Treacher Collins Syndrome and it changed my life. I finally realized that I was not normal, there is no such thing as normal, it just a word that society uses because you do not look or act like them, where they think you aren't like them.

I found out so many things about Treacher Collins Syndrome (TCS-5) also known as Franceschetti-Zwalen-Klein syndrome or Mandibulofacial dysostosis is a rare genetic disorder where facial bone is underdeveloped. Treacher Collins Syndrome is caused by a defective protein called treacle, it can be found on chromosome five. Treacle protein is a major protein for the development of facial structure. The syndrome can be genetic or it can spontaneously happen during embryonic development. Teacher Collins Syndrome can vary, there can be people where you would not even notice it and people with sever cases. I have it genetically form my dad's side; my father does not have it as sever like me. People with TCS-5 like me have vision difficulty, hearing problems, struggling with their breathing and communication difficulty. The eyes are the most recognizable feature of Teacher Collins Syndrome, like me, they have a droopy eyelid. To prevent infection from dry eyes the doctor will prescribe an ointment to use before going to bed and in some cases the child might have vision loss. The best time to reconstruct the saggy eyelids and stronger cheekbone is the age three using their own bone to avoid any artificial material underneath the skin. Most kids with TCS-5 have an external abnormality making them difficult to hear. There are different degrees of hearing loss. It is very important to do a hearing test at an early age. If the hearing loss is detected at an early age and dealt with, then the child can develop speech in the first few years of life. There are two types of hearing loss conductive hearing loss, or sensorneural hearing loss. Conductive hearing loss is often reversible but sensorneural is not. At age, five to seven would be a good time to reconstruct any external ear formalities. Children with TCS-5 usually have underdeveloped jaw so the jaw is smaller than an average child is. The smaller jaw causes the tongue to be pushed back farther block the child's throat, which causes smaller airways. Many operations are needed to lengthen the jaw during the child's school years. I feel so grateful with a big family that cares for me, for a life that God gave me. I know that God does everything for a specific reason.

Nobody could bring me down, I became so much stronger. In school now, most people treat me different and I still am stared at but this time it does not bother me. I am not pick at or bullied any more. Every operation I had changed me in so many ways, it makes me realize what God gave me in life is so much and I have so little to offer to Him. I want to use all my power, my strength, my knowledge, everything that I can give to anyone in the world to make them feel like they do not have anything wrong with them. Everything happens for a reason and it's not their fault. I've been inspired so much that my future goal is to become a pediatric nurse to help kids forget the pain and fill it with priceless memories. I am determined to do anything to achieve this goal. People who stare and make of fun other people who are not like them are just making fun of themselves because they are the ones who really have a problem.





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This article has 3 comments. Post your own now!

Binthu said...
Mar. 26, 2009 at 12:24 am
edi, u persent this in a fantasic way!!! i luv the way u said everything, its just so powerful. i'll always b there 4 u no matter wat (like always) no wonder u stand up in wat u believe n never back down. i luv ya.
 
Kavya M. This work has been published in the Teen Ink monthly print magazine. said...
Mar. 22, 2009 at 1:58 am
Wow Jaisy! I never knew you had gone through so much in life. Don't worry. If you ever need anyone, you have all of us to back you up. I promise I'll never lose you as a friend. I know what it feels like to be different. I think you presented this in a great way. You really got the reader's attention. Keep it up. Loved It!!
 
Jasmin said...
Mar. 22, 2009 at 12:22 am
Jaisy, this is such a powerful and touchy story... I love the way you wrote it, I could feel the emotions that were going throuh your mind!!! I can assure you that I will also be your friend no matter what!!!!!
 
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