It was an early Spring morning when life began to change, my mom was rushed to the hospital and was in labor . As my mom entered the emergency room, the doctors surrounded her in a big circle and they screamed "push "push" "push" over and over again. Sundenly a little baby popped out from within the womb and the mother held him closely by her side, but there was something which was unsettling about this newborn, something which was missing as the child turned his head and looked at all of the spectators who greeted him with such admiration and care, there was something unsettling about this. The mother tapped the infant on the shoulder trying to make him cry, the infant made a sound, but no facial expression. What was wrong with this boy? After observing him for a few minutes and looking at his "cantonic" facial state, the doctors decided to keep him in the hospital to run some tests on him, for the next few days several labels were attached to this infant such as "mental retardation", "down syndrome" having a "kidney imflammation" etc. A week passed without any answers as to what was wrong with this child, however within two months there would be a reveletion which would change not only the parents, but the child's destiny as well. The child featured in this introduction is me and THIS IS MY STORY.
During the early years of my developement, I was being constantly evaluated by many doctors, since my parents are cancer researchers they wasted all of their money on yours truly. It was a visit to Children's hospital when I was diagnoised with Moebius syndrome. At that time my parents were unsure of the "kidney inflammation" diagnosis which was the reoccuring diagnosis made by the physicians we went to, so they decided to visit the neurologist at Children's hospital and after observing me for 30 minutes she came out and looked at my parents who were in tears(or so they say) putting her hand on my dads shoulder and saying "He has Moebius" So the journey began, one question was answered and many more remained.
I started walking when I was 3 years of age and that too in itself was a interesting story. I never crawled or "practiced walking", one day when my brother and his friend were watching "wrestling" and my brother was running around and mimicking hulk hogan in a really loud voice, I became irratated by the loud noise and started chasing my brother, although I fell a few times, I kept getting up and began chasing my brother kind of like forest gump. I still remember being very annoyed with him and this is probrobly one reason I hate Hulk Hogan even to this day. For many children walking came naturally, however for me it did not, for years my parents and my brother crawled in front of me in order to get me to crawl, however due to the low muscle tone in my legs it was very difficult for me, instead as my brother was crawling in front of me I would pat him on the head. My parents were concerned that I would never walk, so they took me to a leg doctor, a world renown physician who wrote his own book and is recognized by many as "one of the best, his name was Dr. Tajan. Anyway after observing my boring face for 2 hours, he told my parents that "this child will walk one day, I can write it down anywhere you want me to that this child will walk". My parents still did not believe Dr Tajan, so they decided to annoy me some more with their "walking rehearsals" and I would look cute, but still not walk.
One positive side to Moebius is that since its so rare society will constantly riducule you or claim you cannot do several things, but when you finally prove them wrong, it makes you feel rather good inside. In the last paragraph, I provided walking as one example f how I gradually developed and eventurally successfully engaged in the particular behavior, however there are countless other examples. For example) Throughout my academic career I have been told that due to my disability I could not perform to the level of other students and due to this underperformance I need to be placed in basic level courses. When my dad expressed his interest for sending me to a University at a "IEP meeting", the instructors and paras alike laughed at him and asked him "if he was serious". My dad(being the determinant man that he is) fired back with 2 words I will never forget and which further showed me the extent one parent would go for their child.... these two words were "watch me". It was my dad who kept me going during these turbulent times, in high school I would become very frustrated and often times go home and cry because I felt that I was being underappreciated and not being challenged by the school system. One of my favorite hobbys was writing poetry/essays, when I would write an essay for school it would be presented at a IEP meeting and they would say that "it was too good to be true hence I plagaurized". This was the accusation made by my American Literature professor junior year, this accusation soon faded away as I was asked to write in front of her to prove that I did not plagaurize my papers. After I wrote the essay my Am. lit teacher said the following "I am sorry", unfortunately for me it was already too late for me as I was sent back to basic. This proved to be the best desicion the IEP made because I would finally find someone who would appreciate my work, someone who behind the still face saw me differently and that person was my Basic English Instructor. He would ado whatever humanly possible to ensure that I was placed back into Academic. According to my dad, this instructor told him that "Rak writes better than me", this was the hammer that hit the nail on the head and the season finale of this IEP/Mehta Saga, although I never recieved a formal apoligy from the IEP they hestiantly placed me into Academic, so I guess I proved them wrong, during the summer I recieved a very exciting letter and it was from the University of IL at Chicago after staring at the letter for a few minutes wondering how does a University reject a student, My heart started throbbing, the blood started circulating upwards as I read the entire letter and the words "you have been acceptance". Is this a dream I asked myself? Will I wake up in a few minutes just like I did that one time when dreaming about the Cubs winning a world series?... After opening and shutting my eyes a few times, it was quite evident that this was reality and my dream had finally been accomplished and to those who asked "Are you serious", You have been proven wrong yet again.
I am currently a senior at UIC and I will be graduating this may with a BA in psychology with special emphasis on Neuropsych. I plan on attending graduate school in the Fall and hopefully will recieve my PH D sometime in the next decade, I hope my beloved cubs do not jinx me. UIC has been so kind to me and during my tenure here I have developed many everlasting friendships and although I think it is pretty corny that we don't have a football team I am happy to be apart of the University. To further elborate on the English placement story that I bored the readers with, when I took the placement exam I was told that I had to take English 161(Adv composition) rather than English 101. I ended up getting an A in the course.
I apoligize for the rant, but the point of my story is not to celebrate my life, but to provide a backbone for others who have the syndrome. The ability to smile is a basic sociological construct that everyone possesses, if you lack this ability you are percieved as abnormal or deviating fromsocietal norms. This is the intial reaction, there are two things we can do as parents of those with Moebius and as children with it 1) we can accept the riducule and do not try to improve our condition or 2) we can fight the system, challenge the questions and overcome the obstacles. As a person who has done the latter I can assure you it feels a whole lot better. In order to accomplish this we need to have a stable support system and the willingness to improve. If it was not for my parents who defended me and encouraged me to achieve my god given potential, my brother who I thought was pretty cute for his "crawling rehersals", my neighbor who came to pick me up when I crapped in my pants, my grandfather who spent every hour of the day with me and even the education system who intially helped me achieve success(when I was in elementary school I could not do certain things, although we ended our relationship on a bad note IEP has some positive points to it, they just tend to undermine the students potential) I would not be where I am today.
If you have any questions at all about this note, please do not hesitate to contact me at firstname.lastname@example.org.
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