Expressive 2010 1st Place
“Beep! Beep! Beep!” As that damned mechanical rooster jolts me out of yet another peaceful slumber, I groggily drag myself out of my bed, unready and unwilling to start my day. I know I’m not alone in my contempt; many of my fellow Americans share this negative view of being yanked out of a watercolor dream and shoved into reality. However, one individual who doesn’t share my pessimistic perspective, who never has, is my little sister.
It has been just over sixteen years since Nicole was born with R.T.S., or Rubinstein-Taybi Syndrome, a condition that affects only 1 in every 125,000 people. There is very little known about R.T.S., but it is known to be caused by a mutation of chromosome 16 and is most closely related to Down Syndrome. Individuals who receive this cursed blessing are prone to mental and physical delays, moon-shaped eyes, broad fingers and toes, and an uncanny ability to touch the lives of everyone they meet. My sister is no exception; she wakes up each morning with a smile that could melt the coldest of hearts and an attitude that is best summed up by her daily motto: “Today is my best day ever.”
Memories from age four are typically blurred, faint images that are permitted to run amuck, almost never first in line for recall. However, the day of my sister’s birth is one I find myself reflecting upon frequently. It is a memory that stands out in my mind like vivid red paint splashed across a background of grey. I couldn’t understand it; I suppose Nana and Papa sitting quite literally on the edges of their seats and jumping to grasp the phone like it was their only lifeline could have been seen as eager anticipation, but even my naive senses could tell something was off. Maybe it was the hurried, hushed tones of voices they used or the way they seemed to purposefully be trying to distract me, but something was definitely not right. I felt trapped in their home that I typically adored, and angry butterflies assaulted my stomach. I was only four years old, but already I had that heated sensation of resentment that usually accompanies the years of teenage angst. I had gotten my first taste of undeserved entitlement; that gut feeling when you know you deserve what is being denied to you. And in this case I was being denied the truth. It was a foreign feeling, but already it had been marked as completely unpleasant.
It wasn’t until the next day that I was allowed to go to the hospital and things were properly explained to me. It was my stepdad, always the solid rock of our family, who sat me down and told me that my baby sister had been born with a rare condition. This condition, this thing that we knew nothing about that had been suddenly and unexpectedly sprung upon our family, was a newfound blindness. Even worse, it was the cause of my sister being held like a prisoner behind glass. She was fragile, only hours old and already a victim of life’s hardships. Her heart was weak, containing eleven defects that further threatened its already delicate state. And only years later would I come to find that the anxiety I felt back at Nana and Papa’s house the previous day was the fear that our family’s angel wouldn’t make it through the night. I’ve never been a religious person, but I still thank God to this day that she did pull through. With a strength I thought only possible of comic book super heroes, we all pulled through.
Seventeen days later my baby sister was freed from her I.C.U. prison and allowed to be welcomed into her new home. She was a miracle; we knew that much for sure. I myself was convinced of it as I got to hold her warm, miniature body close to mine for the first time and feel that faint but incredible heartbeat. “Her name is Nicole,” my mom informed me. Nicole. I thought the name over slowly with silent distaste. Fortunately, my ill feelings were short-lived. Learning that Nicole meant “conqueror” was all it took for a loving bond to form. And as time went on, we would all come to see the extent to which her name held truth.
Over the years, my family and I developed an invaluable trait: adaptability. Life would continue to throw many curve balls our way, but through it all we leaned on each other and rolled with the punches to the best of our abilities. In the beginning years of her life, Nicole was unable to tolerate food like most babies. She spent the majority of her early childhood drinking Pediasure, a foul-smelling children’s drink that provided her with the valuable nutrients that she needed to gain strength. Unfortunately, even this mild drink meant for children was often too much for her sensitive body. It became routine that with almost every meal, Nicole would get sick. The smell would be nauseating, an immediate appetite suppressant, but even worse was watching my tiny sister not even be able to get through a simple meal. But as always, we adapted. Eventually, it was like waiting for the sound of the gun at the beginning of a race; once we heard one little cough, we took off running. I would sprint to grab a towel, my mom would launch herself in my sister’s direction, and my stepdad would fetch a new outfit and whatever else was required for clean up. In less than four minutes, the situation would be under control, and we would be gathered back around the table as though nothing had occurred. It didn’t matter where we were: at home, a friend’s house, or a restaurant, we were always waiting and ready. Working together as a team was what we did best when it came to Nicole; she held us together, uniting us with a common goal.
Another struggle for all of us was the surgeries. Slicing a person open and meddling with his or her insides is just wrong at any age. Of course, the procedure is typically carried out for a reason and with the hope of a worthwhile end result, but that doesn’t make it any easier. Making it even more difficult for Nicole was the fact that all of the slicing and meddling began at age one. And from age five, I had to quickly get used to the surgeries as well. Over the years, I’ve trudged into far too many typical white, sterile hospital rooms complete with pathetic attempts to make them kid-friendly. Even the thought of their headache-inducing florescent lights and sharp scent of disinfectant makes my stomach toss and turn. It was always there that I would find my sister, dwarfed by the seemingly enormous beds and taking on the pale color of her surroundings. I still to this day can’t fathom how much pain each of those procedures caused her. Attempting to comprehend her hardships was made even more difficult by the fact that every time I would visit her, she still had that sunbeam smile on her face. Negativity has never been Nicole’s specialty. Even the bleakest of moments have a bright spot somewhere if only you’re willing to look hard enough; Nicole taught me that.
It is now 2011, and Nicole just recently celebrated her sixteenth birthday. To date, she has endured five excruciating operations, including two open-heart surgeries and most recently three reconstructive surgeries on her leg and knee. As if this weren’t enough, we recently received the news that the reconstructive surgeries didn’t achieve the desired goal. With each step she takes, Nicole continues to wear down her leg, and the unavoidable end result will be her permanent reliance on a wheelchair. Even just relaying this news to others typically results in sympathetic “awwws” and saddened expressions. But of course, Nicole would never resort to that approach. After finding out this newest update, it took awhile for my parents to harness the strength to sit their little girl down and tell her what new twist her future entailed. No one said being a parent was easy, so they did what they had to do. And in typical Nicole fashion, she didn’t even hesitate when replying to their words with, “Can my new wheelchair be pink?”
Moments like these make you realize that one person’s unique view can change another person’s entire life. Growing up with or taking care of a child with special needs can be strenuous at times. I myself have experienced that first hand. However, and more importantly, I have also learned that in such a remarkable situation, you gain much more than you lose. The experience grants you a whole new outlook and a kind of strength you never thought possible. Not that such strength is even comparable to that of Nicole’s or others with special needs, but it is still life changing to say the least.
As if I hadn’t received enough blessings from my sister’s presence alone, I have also been exposed to countless experiences that have truly opened my heart and changed not only myself as a person, but my future as well. It all began with my interest that was piqued on the very first day Nicole started elementary school. I discovered I was intensely curious as to how a class for special needs students would be run, and I also found it difficult to restrain my fiercely protective side. What would they have her do at school? Would the other kids be nice to her? Who would watch over her while she ate and played? I demanded to know the answers to my questions, and it was this fierce determination that led me to begin my work in special needs education programs. So it was in my elementary school days that I was fortunate enough to find what most people don’t find until many years later: my passion. I began helping at Nicole’s school and never stopped. How could I? I got to be surrounded by some of the most amazing children this world has to offer. Not many people get to discover the feeling of walking into a room of individuals they’ve never met before and being loved the instant their foot hits the doorway. That feeling is something truly incredible. Being surrounded by children just like my sister whose only goal is to hug you, get to know you, and be your new best friend is an experience that cannot be compared to any other. It is this passion and these influential children that have now taken me to college. With my degree, I will be able to make a career out of working with the children that I love. And of course, as always, I have Nicole to thank for this opportunity.
My baby sister stands at only 4’10”, but this has never stopped me from looking up to her. From her very first night here on earth fighting for her life, she has been my hero; this is a place in my heart that she will always hold. She has taught me a new way to look at the world, she inspires me every day to be a better person, and I am able to look to her strength when times get tough. To say that Nicole has changed my life would be a serious understatement. She has made me the strong, compassionate, driven person that I am today, and that is something for which I will never be able to repay her.