Wednesday, January 29, 2014

One moment, forever changed

Sofia Ali remembers her brother Malik as a “really athletic four-year-old, enthusiastic about learning and the best brother I could ever have. Then everything collapsed.
 Malik went in for a 15-minute surgery to remove his tonsils, had unexpected complications and suffered a severe brain injury. He spent more than a year in hospital and lost the ability to speak, walk and use his hands.

Almost 10 years later, Sofia writes about that fateful day.

One moment, forever changed
By Sofia Ali

Early one morning a faded black Honda left the garage of a quiet neighbourhood with two parents in the front seats, an anxious young boy and a stubborn little girl in the back. After dropping the girl off at daycare, the boy felt the butterflies in his stomach as they drove to the hospital with the sun glaring in his face, knowing he was in for a surgery. 

Surgery: a big word for a four year old. As they drew closer and closer to the hospital, he felt his raucous nerves start again. His parents, attempting to ease his nerves, tried to reassure him. There was nothing to be afraid of, they said, a simple 15 minute tonsil surgery.

But he sensed their uneasiness, when walking up the steps to the hospital, during the formal checkup and finally, when he was about to leave. In fact, the roles were reversed. He was the one comforting them, pecking them both on the lips and waving as he said a final I love you, disappearing behind a set of double doors.

The sun rose in the East and set in the West. A child was born and an adult died. Daycare began at 8:45 and ended at 6 sharp. These were the insignificant normalities of my life. As a seven year old, routine was my basis. It was within me to expect all the activities and events of the day to be structured by my schedule, to follow my mental guidelines. 

It was bearing this in mind that [I] got worried as I took notice of the once soothing, now irritating, ticking of the clockthe seconds, then the minutes, slipping past the hour. My routine had been disrupted. And it was on this forebodingly sweet sunny summer's day that normalities became abnormalities. That my routine changed. My life, my family's life. Transformed. It was Thursday July 15, 2004.

I was surprised at how late it was, then further startled by the [arrival] of my aunt. She picked me up from daycare, precisely 10 minutes late, and the journey to the unknown desitnation began. With the windows open and the sights of downtown Toronto surrounding me, I was temporarily distracted from the questions at the back of my mind.

Where were we going? Where was my brother? Where were my parents? Twenty minutes later, with a looming light brown building emitting a deeply unsettling feeling, those questions returned, stronger than ever. I read the weathered blue sign atop the high-rise building [and realized it was a hospital].

Curiosity took the better part of my mind and I ignored the implications...of the tears making their way down the glistening eyes of my aunt and the sombre tone of the car drive. What an unexpected destination. A hospital of all places, instead of a park playing soccer or swimming at a pool. Nevertheless, the journey continued hand in hand with my aunt. Up the elevators, to floor 2, all the while reading the signs. The last stating in monochromatic font: ICU Intensive Care Unit.

A sea of faces was waiting; crying, weeping in agony at the loss of a child, not in the literal sense, but worse. Malik, my brother, was there physically, beyond the heavy, metal double doors. But mentally, he was aloof. Unintentionally barricaded from the despair on [this] side.

Familiar, yet distant faces took up the majority of the expanse known as the waiting room. It seemed like the world had stopped, work abruptly ended, jobs unnecessary. Children, daily routines, responsibility itself were secondary to the circumstances of the day. Not one face looked up as I walked down the hall, uncertain of what to expect. Not one.

Hypoxic brain injury, they said. It was uncalled for, a mistake, a tragedy. But that did not matter to me at the time. I just wanted to see my brother. It felt like a bullet being shot direclty between the eyes with a loud boom, a ball being hurled at the face and landing with a thud. Momentary shock followed by excruciating pain and silence. It was written across the faces of the congregation of peopleneighbours, family and friendsthere to privately mourn their loss until I realized, too late maybe, that it was my loss, too.

The tears streaming down their faces were a raging thunderstorm. I sensed confusion, disbelief. It was looking directly at my parents that brought the greatest emptiness. My father, a man I once imagined could never cry, was doing exactly that. Helpless, uncontrollable sobbing. His active, playful four-year-old son suffering from hypoxic brain injury. How could it be?

And my mother, my dear mother. It looked as if her tears were gone. She had cried them all out and away they went. She was simply staring at the same insipid spot on the wall, numb and melancholic. Until a tearful spasm erupted, once again. Walking into that waiting room was like walking into a bottomless pit, tormented by emotions of hopelessness, remorse and sadness, then realizing you were going nowhere. That you had no final destination.

It was dreadful. The memory is hard to conjure. In fact, I think I purposefully hide all remnants of that day.

I remember hearing conversations among the [multitude] of people in the waiting room: some sitting on couches, others on the floor.

Doctors say only 24 hours, I heard one lady say. And from then on, it was a waiting game. Twenty-four hours for what? Was it a deadline? I stayed at the hospital late, later than my bedtime, which I'm ashamed to admit I might have been excited about. Most of that time spent in the arms of my mother, the unexpected shivers of her body still worn on mine long after I left.

I woke up the next morning in a house that was not mine, with my brother not by my side and my parents not in the bedroom next door. My routine had been shattered. 

I should have been excited about having a sleepover at a friend's house, relishing the change of events. But I was grieving. Not only for Malik, I am sad to say, but for normality. I wanted to wake up every morning knowing my brother was in the room across from me, already awake, watching morning cartoons. Knowing that my mom was downstairs in the kitchen making us breakfast and that my dad was by her side. Was I wrong to desire the past of a day ago?

Twenty-four hours passed and another 24 hours with still limited formal understanding on my part of the condition Malik was in. I take it my parents were trying to shelter me from a world I did not know, that of bland walls, needles and sickness. My questions did not receive response and only made them more depressed. I don't think I was fully able to comprehend the extent of the situation I was in. It felt like someone had snatched him away, taken him for good, yet when entering the hospital for those short visits I could still feel his undying presence. He was still there.

The event. It changed me. As a seven year old, I [would] probably describe my brother as annoying, boyish and annoying. I didn't realize what life would be like without him. Without him playing. Without him laughing. I missed the cute sound of his voice and his unconditional love. I missed the fact that he would not be there every day I came home from school, not be there when I was watching television or reading a book. His presence and his aura of childish happiness, I missed.

At the time, I thought that was the end, that my dear brother would be confined to the four walls of his hospital room for life. With the emptiness that had been carved into my family, all senses of hope were gone. Hope, optimism became non-existent and that was our great fault. 

[Throughout] our suffering, our perspective of life changed and our view on the value of the smallest moments, the tiniest memories, reversed. We have learnt to cherish the things we once believed were insignificant. A simple kiss on the cheek, a warm hug. In that [time], our bonds as a family were challenged, our abilities to endure the random, uncharacteristic events of life tested.

My brother is still with us today. He is 12 years old, three months and eight days. He lives in our townhouse with my mom, dad, younger sister and, of course, me. 

He can talk. He cannot walk. He can sit, on a wheelchair. He can eat, with some help. He can drink, with a straw. He can understand the everyday happenings of life to the fullest. 

He can laugh, he can joke. He can scream, he can cry. He can watch TV, he can listen to stories. Abilities that we take for granted daily are dreams come true for him. One would think the events that took place when he was only four years old would have an everlasting effect on his morale, his mentality. But that is not true.

He is not the same little boy who walked cheerfully into that surgery room reassuring his parents "Don't worry, I'll be back in 15 minutes." He is better.


Dear Sofia,

Thank you for sharing your story in such an open and honest manner. I hope other's will get to hear this too. If you ever get to speak to parents and other siblings or staff or students in the healthcare field it would be amazing. It helps us to better understand your experience and to know that the love between you and your brother shines above all else!!

Barbara -Social Worker

This was wonderful and inspiring to read. Thank you, Louise, for posting Sofia's story of her brother. And Sofia, thank you for so honestly sharing your brother's story and the impact his accident had on your life. I can imagine you are an inspiration to many people, particularly the siblings of those who are disabled.

What a great perspective. I really enjoyed reading this Sofia. I appreciate your honesty and your gift of storytelling. Thank you for sharing!

Thank you for sharing, i believe you have a gift, and your writing skills are amazing, and most important your brother has a gift too. He made it through, and he has his family by his side which is so important. Do you ever think of sharing this story through more then a blog? I found it very Interesting, and think it would give more hope to famiies going through similar situations.