Mama and Dad

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 clock—the 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 people—neighbours, family and friends—there 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.

Parents of children with disabilities face "back to school" with a particular kind of terror. That's because we know everything can be pulled out from beneath us. All the things that went right last year -- the learning gains, the tiny buds of confidence, our child's peace of mind -- can be erased by a change in teacher or principal, a new bus route, a missing piece of technology, a program that doesn't fit.

Like a wooden tower in the game of Jenga, our kids need just the right balance of supports to stand. Pull out a block without care and the whole structure comes crashing down.

So as the summer ended my chest knotted up in anticipation of the first week of school.

Two weeks in we're still standing, and I feel touched by grace.

"He seems much calmer, is paying attention more to when people speak to him, and he's walking sooooo much better!" wrote his assistant. "I also see that his right ear is healed -- wow! What a success!"

Most important, Ben's in quite good spirits. He seems happy.

He's able to communicate with me in his own unique code.

Example: He wants a hard-cover Avengers book we saw at the book store once, but have been unable to find on recent trips. So he'll bring me the Avengers book he has, sign "other," then sign "where?"

He likes an old education software called Cluefinders. He found it while surfing Youtube.

I just got him one about Volcanoes that's for Grade 5. But he wants a different one. So out of the blue he signs "4," then gets the Cluefinder game case.

Grade 4? I ask.

Yes.

Cluefinders?

Yes.

I look it up online and find the Grade 4 game is called Puzzle of the Pyramids. He'd found it earlier on Youtube and was most interested in that one. Now as soon as he signs 4, I know he's talking about Cluefinders Puzzle of the Pyramids. Cool eh?

He's more independent. At night he'll get changed in his room, throw his clothes in his basket, put his hearing aids and glasses in the drawer, put on a dressing gown and do up the belt (yeah! He has the fine motor skills to do up a belt!). Then he can get in the bath with the help of a bath bench.

He went on three roller coasters at the Ex.

He can add numbers up to 7. He just brought home the first book of adding 8 and he's so thrilled when he gets it right. After his last session the owner called us in to tell us how well he was doing. It's hard for him to get started, but once he does he goes through the books quickly. A staff person has been sitting with him but the owner feels he can sit amidst the other kids now.

These are all little things that would barely register when parenting a typical child. But as Anchel Krishna writes in her Today's Parent blog, one of the gifts of parenting a child on his or her own unique timetable is that you notice every development. You celebrate it. You don't take it for granted.

"Mom." "Mom." "Mom."

Instead of yelling for me Ben's using the Proloquo voice on his iPad to call me while he's doing his Kumon. No matter what I'm doing, I leap into the air and race over so that he knows it's worth it.

When we visited one of my brothers at a restaurant on Saturday he was relatively well behaved -- even though I know it's hard for him to hear in a noisy restaurant.

He wants a new PC laptop because our Macs don't play some of the games he likes. He's eager to make some money for said laptop but not thrilled with the housework options proposed.

I asked our contractor, working on our basement reno, if there was something small Ben could do. The next day he appeared with a small power screwdriver and drill -- to fit Ben's tiny hands -- and pre-cut pieces of wood tacked up together for a bird house. Ben was very interested in the tools, but not so interested in the sanding which was the next stage of the project. D'Arcy and I conferred and recognized that Ben loves screwing in nails, so perhaps we need to pull apart the pieces of wood so he can do that step first. He'll also have a role filling in nail holes in our basement floor boards and trim.

Last night we picked up a pair of safety goggles (see photo) for Ben's construction technology class at school.

On the way out of Home Depot, he insisted that he needed a coke. Then some wine gums. And finally an expensive hard-cover recipe book for creating decadent, icing-laden cupcakes. Despite his protests he put the items back when told to.

Ben is excited about his grandmother's 90th birthday party and his friend Sasha's bowling party as well. He never misses an opportunity to celebrate.

For the first time in two years, his right ear doesn't have a bandaid on it. A mosquito bite from a couple of summers ago that he wouldn't let heal has finally closed over. We still have trouble with him picking at other scabs, but it's an improvement.

Ben still loves Jessie, the cowgirl in Toy Story -- and any other female movie character with red hair (like Katniss in the Hunger Games).

If Ben could change the world, I'm sure he'd make it more Toy Story-like. People of all shapes, sizes and abilities would be included. No one would grow up and throw away their childish pursuits, sense of adventure or, most important, friends.

No, friends would always stick together. Ben would reverse Jessie's lament about being discarded -- "When somebody loved me, everything was beautiful..." -- into a way of making sure everyone belonged.

Recently I was listing off my latest worries about Ben to Marjorie. "He has his own Cinderella stories," she said.

And he does.

For a person who has experienced so many losses, Ben is one of the happiest, most forgiving and genuine people I know.

As parents of children with disabilities, we don't take anything for granted.

So when my son came shopping with me at a massive grocery superstore yesterday and navigated all the aisles on foot, I couldn't help feeling giddy and grateful.

It's easy to move on to the next worry or fear or regret, but sometimes we need to fly our flags in celebration (in this case, Tibetan prayer flags).

This is a brilliant NPR piece about an elementary school in Boston. Thirty per-cent of its student body has learning disabilities, and these kids learn alongside their peers. Watch the video!

The other night Ben told me he wanted a birthday party (his birthday is Monday) and he wanted friends to come (two index fingers interlocking then trading places).

Given Ben's lack of friends, I was stumped.

"Well, I'm not sure who I would invite?" I said, trying to mentally manufacture some friends. "You're going to be going out with Sallyanne (worker) and Matt on Sunday. Let me think about it."

I turned to D'Arcy -- out of Ben's sight line -- and signed the word 'sad,' fingers drawing down my face like tears.

Ben hasn't made solid connections at his new school and he doesn't have contact with friends he had in elementary school. He does enjoy a couple of kids who are younger than him who sometimes go on group outings with his workers. In particular, there was a boy who petitioned to have him come on the recent Niagara Falls trip.

So I called Marjorie and asked if she thought this boy might be interested.

The next day, Ben was dropped off after school at Holland Bloorview for an orthotics appointment. He shares a cab to school with another boy he met when he was at Davisville/Metro School for the Deaf.

As I opened the door, Ben burst out, signing 'party,' (two letter V hands pointing down swaying back and forth like dancers). He then turned back and gestured at the boy, indicating he wanted him to come to the party.

I was speechless.

My son was going to show me who he wanted at his party. He was going to take matters into his own hands.

"You want Liam to come to your party?"

Vigorous nod.

I showed Liam the 'party' sign.

"What do you think about that, Liam? Do you think you might like to come to Ben's party?"

"Yes."

My chest hurt, but in a good way.

Ben is isolated at school because he has anxiety that manifests itself in compulsive skin picking and nose-blowing. I mentioned his wish for his party and I received this e-mail from a teacher last night.

"Today I asked a few of Ben's friends if they would like to attend Ben's birthday party. A few of the boys said yes! They asked for an invitation. Could you send an invitation to school with Ben tomorrow?...Today after discussing Ben's birthday party together with his friends, Ben came up and hugged me and a couple of others!"

The teacher wrote that when she mentioned the party, "Ben became alive!! He was so happy! Ben mentioned that you are serving pizza and cake! All got excited!"

We hadn't talked about the pizza and cake but I guess Ben felt they were solid standbys.

I then had a call from Marjorie to say that she had spoken to the boy who went to Niagara Falls with Ben and he was very excited about attending his party. And we thought about a couple of other boys who might be interested.

Today I was talking to a colleague about how we get so hung up on what constitutes a 'friend' -- particularly during childhood and the teen years. How is it that I can have friends who are significantly older or younger than me, but when it comes to children and teens we follow an unspoken edict that they must be 'the same age.'

It got me thinking that friends can come in many shapes and sizes, and friendship can be made richer by differences and diversity.