Love this story, put :(( in my eyes!! She was born on the 13th of October 2003; the day that changed my life. When my parents had first told me that I was going to have a baby sister, I won’t lie, I was slightly disappointed. Firstly, I didn’t want a sibling. I found babies annoying and there was no way my 5 year old mind was willing to share my parents. Secondly, even if they were going to have a baby, I’d much rather have a baby brother; one that could skateboard and play action figures with me. The day they brought her home, I knew there was something different about her. To start with, she didn’t look like the other babies. Her tiny eyes were too close together, her upper lip wasn’t quite right either, but the thing that caught my attention was her fingers. I looked down at my own hands and then looked at hers, repeating this a couple of times before realizing that instead of the usual 10 fingers, she had 13. “Mama, why does Safa have more fingers than me?” I asked my mom, who held Safa in her arms. “Because she’s special, sweetheart, she’s unique.” My mother replied before whisking my baby sister away. Only later did I realize how my mother’s eyes filled with tears every time I asked her why Safa was different. Back then, I accepted Safa for being different, and I loved her nonetheless. I guess you could blame it on my innocence, being just 5 years old ‘normal’ didn’t mean as much to me than it does now. Children accept people the way they are, treat everyone equally, but as we grow older, the evils of judgment begin seeping in; corroding the innocence of the soul. The first few months passed, and the trips to the hospital became regular. I would usually accompany my mom to Safa’s checkups. I had made friends with the nurses and rather looked forward to our outing. “Hi! Are you here with your Mama?” A woman sat next to me in the waiting room. “Yup. She’s there with my baby sister.” I pointed towards them, standing a few feet away from us. “Oh…um…” She stuttered, not sure whether she should be sympathetic or just pretend that Safa was normal. I started school the next year. Only then I realized how judgmental people are. How close minded they are. “Do you guys wanna see my little sister?” I asked my friends on the first day of school. “Sure!” They got up and came with me to greet my mom and Safa at the school gate. You could see the pride in my eyes the minute I saw Safa wrapped in a pink blanket, held close to my mother. My heart sunk the minute I saw the look of fear on my friends faces. They were polite enough not to say anything but their expressions said more than words ever could. From then onwards, I knew that there was no doubt that Safa was different. “Don’t invite him!” my best friend, Abdullah whispered to my other friend, Ahmed. “Why not? My mom said to invite everyone.” He sulked. “But then he’s going to bring his sister too. Don’t tell anyone, but she’s a monster!” Abdullah said, lowering his voice even more. Ahmed gasped and put his hands to his mouth, quickly crossing off my name on the invitation list. The nicknames became common. Weirdo. Monster. Scary. Creep. Although they were insulting Safa, it hurt me more than it would if they had insulted me. The pain of their insults was converted into defense. I became Safa’s guard, savior, hero. I made it a point to stand up for her, protect her from everyone out there. “My sister’s way cuter than yours.” The neighborhood bully taunted me. “No. She’s. Not.” I spoke between gritted teeth. “Yes she is. Your sister’s creepy.” His cronies nodded in agreement. I didn’t hesitate before punching him straight in the face. The neighborhood kids weren’t the only ones who had started staying away from me. My classmates did as well. I had been classified as one of the rejects, the one no one is allowed to play with. Although sometimes I wished I was just like them, I had accepted the fact that I had to give up friends in order to protect the single most important person in my life: Safa. I began researching Safa’s disease because my parents never did explain to me why she was different, they liked to pretend everything was okay. They pretended that Safa was just like all the other kids. They put on a strong face, but I knew what went through their minds every time they saw here: how much longer? It turned out that Safa had Trisomy 13. Instead of the typical 23 chromosomes per cell, she was born with an extra chromosome in each cell. Being 11 years old, it didn’t make much sense to me. I dedicated all my free time to researching on Trisomy 13. Instead of playing football or making tree houses with the rest of the kids, I stayed inside, helping my mom take care of Safa and researching why Safa was so different. Unlike most kids who suffer from Trisomy 13, Safa had survived her infancy. It gave me more hope and increased my dedication to her. She had seemed to become the reason of my existence. My world revolved around my 6 year old sister, I could have never wished for anything but her happiness and health. I remember the day she was permanently admitted into the hospital. “Baba? Why are you here? School isn’t even over yet.” I asked him as he picked me up early from school. “Safa’s in the hospital, buddy. We need to go see her.” He avoided eye contact. I knew something was wrong. “Is she okay?” I asked, my voice slightly shaking. He pretended not to hear, I didn’t push the subject, fearing the answer. We drove to the hospital in silence. My eyes still swell up with tears when I recall that day. “It’s time to say goodbye, Daniel.” My mom whispered, knowing I was too fragile to be spoken to properly. “No. No. No.” I wept in denial. Each step I took towards Safa’s hospital room was heavier and most difficult than the former. There was a weight on my chest that could not be removed. My body shook, the tears continuously dripping down my cheeks, silently falling on the wooden floor. I’m not sure how to describe the emotions that ran through my veins when I saw the tubes going through Safa, the machines attached to every part of her body. A part of me seemed to die, hope lost, purpose blown away. “No. No. No.” I repeated the same words over and over again, kneeling at her bedside. She shuddered once, giving me a spark of hope, and then the machines went silent. Only then did I realize that silence really is louder than words. She passed away on the 13th of January 2007; leaving behind only tiny traces of her existence. I would often go up to her room, lay in her tiny bed and just cry. My heart not willing to accept the fact that I would never again see her smiling face, never be able to hold her in my arms, never be able to stand up for her, protect her, love her. Years later, while I was jogging in the park, thin and pale, the pain still etched on my face, I saw a woman pushing her daughter in a stroller. My heart seemed to skip a beat; I held my breath when I saw the obvious symptoms of Trisomy 13 on her child’s face. I walked over to her. “Miss, your daughter is one of the most beautiful children I have ever seen.” I told her, my eyes stuck on the smiling child in the stroller. Tears filled her eyes, “thank you.” I got down on my knees and gently touched the little girl’s hands, memories of Safa clouding my ability to think straight. I write this now as I am sitting in my laboratory. Author of countless books on Trisomy 13, owner and chairperson of a research program and hospital tending to people with the same disabilities as my sister, dedicating every second of my time in research; I am living each day as a tribute to Safa. You see, you cannot control life and death, but you can make sure that you make the most of your time, assuring that every moment of your life is spent productively. I could not save my sister from being raised to heaven, but maybe I can save the other children out there, the other families out there, distressed over the same thing. Death, for me, is a constant reminder of what awaits you, reminding you that every memory, every moment is precious. I have seen numerous deaths over the past couple of years, each one affecting me as if it were my own sibling I had just lost, but none of them have managed to make me forget what I was doing and why I was doing it. Nothing would demotivate me from my mission. Nothing would be able to steer me away from my ultimate purpose. Nothing would ever stop me from putting in my complete and undivided efforts. I wasn’t giving up until I had found a cure for Trisomy 13, or died trying. Safa, this is for you. Xox Goodnight peeps Myra
Posted on: Wed, 23 Oct 2013 00:59:43 +0000
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