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Joy and grief: The dance

By D. Christine Brown

Three years ago today our son Lucas’s high fever and subsequent seizures sent us by ambulance to hospital where he suffered severe brain inflammation.

Thankfully he survived and is recovering nicely, albeit with brain injury that includes significant developmental delay and autism.

Every single day I juggle the intense feelings of joy I have with my son with immeasurable grief and resistance to the difficult reality of parenting him with his acquired disability. I feel left out of the real world of raising children when I see "typical" school kids everywhere.

This last week has been especially trying on my husband and me as parents. Lucas had a few minor "accidents" that required some first-aid attention which triggered Lucas's hospital memories of being poked and prodded.

Three years ago, Lucas was forced to endure endless IV changes and needles for bloodwork, screamed for hours on end with his steroid treatment, would get wound up in his IV from trying to spin out of the discomfort, shrieked in terror as the student eye doctor checked his eyes, and the list of horrors goes on...

So his new coping mechanism to deal with daily routines that involve touching him—such as changing diapers, bathing, brushing teeth or tending to "boo boos"—is to scream at the top of his lungs, kick non-stop and squirm. This means both of us have to physically hold him down while he shrieks in distress.

He transmits such terror in his prolonged screams that I fear the police will show up at our door. I worry that our neighbours must think we’re trying to beat him. Luckily, a script from his current favourite Thomas and Friends song has provided some relief. We tell him "Accidents happen now and again, sometimes just by chance!"

We both agree that Lucas’s resistance now is more about fear than pain, but it rips at my heart strings nonetheless.

This makes me reflect on our own resistance to Lucas's new life, post brain inflammation.

As parents, I believe we’re resisting the overwhelming responsibility of parenting Lucas after his brain injury—a degree of fear, uncertainty and change that most parents don’t face.

Since leaving Holland Bloorview as inpatients, each week brings new challenges, and we are worn down. We want a break from watching our child suffer needlessly, even if the suffering is sporadic. We want just the good and to leave the bad aside.

Instead of embracing the new and heightened responsibility, we feel burdened by it. We’re so relieved when finally things start to flow again, just to get slapped down by the next cold, fever, scrape, sliver, or trip to the dentist. Every normal life event brings such trauma into Lucas's life. We don’t know if it’s because it sparks memories of his hospitalization, or if it’s his autism or just his personality.

Lucas’s resistance to our helping him cope with daily activities makes me think about our own resistance to the reality of parenting a child with an acquired disability. And just as his resistance appears counterproductive to us, perhaps fighting our “new normal” makes things harder than they need to be. Reflecting on this three-year-anniversary, it strikes me that life has ups and downs. Ours are just more extreme, in both directions!

I believe my own current favourite Thomas and Friends song says it best: Every Cloud has a Silver Lining

Life is full of surprises, full of ups and downs

And so to have a silver lining, first there must be cloud

Every cloud is silver-lined, even when it rains

So don't get too downhearted, as things are bound to change

All you've gotta do is wear a smile and you will find

Your sun will shine

When you're feeling down it doesn't help to wear a frown

Never lose hope, you're sure to cope and you can carry on.

Just as Lucas resists what is uncomfortable, so we resist the discomforts of feeling responsible for Lucas's suffering.

We know we need to accept and take responsibility for our son’s behaviour while he’s at this developmental stage. But we can't allow ourselves to feel responsible for his or anyone else's feelings. We just have to keep doing what's right and show him the path of joy.

We have to be tolerant of life's ups and downs. This will in turn teach Lucas to accept his own ups and downs, and the fact that we can only control how we react to what life throws at us.

As I sit in this restaurant today waiting to pick up my son from school, writing this blog, the two songs that just played couldn't be more timely: That's Amore and L-O-V-E. I feel that it is fate—or my late grandmother, from somewhere in the universe—reminding me that our life with Lucas is all about love. Focusing on the joy and love will get us through the bumps in the road.

Lucas's mom has written for BLOOM previously: I am warrior mom: Hear me cry and roar. Follow Lucas's progress on twitter @LucasRecovers.

This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient.

Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients.

“Holland Bloorview was like a lifeline when we were here,” Lies says. “So I wanted to give back to other families who are experiencing similar things. I want to impart the fact that you’re in this horrible situation at the moment, but it will get better. It will become a new normal.”

Once a week Lies and a family support specialist invite parents of children who are inpatients to meet in the Family Resource Centre. “We go onto the unit and knock on doors and introduce ourselves and invite them downstairs,” Lies says.

Each meeting is an opportunity to share practical information—like resources and funding available in the community—but also to talk about how families are coping with their child’s rehab and “to listen to any burning issues the parents have,” Lies says.

“There’s a sense of community and a sense that you don’t feel so alone. We try to have the topics very broad so that they address a variety of disabilities and there are nuggets parents can glean that are useful for their child. I’m also amazed with the different cultures and religions we get around the table—it’s like a cross-section of the world. And it’s useful to have all of these different perspectives.”

Lies says parents often feel comfortable confiding their concerns and experiences with a parent who’s walked in similar shoes. “They tend to be completely open with us.”

She says she needed a few years’ distance from her son’s injury before she was ready to support families. “You need to be emotionally ready,” she says. “You need to have some distance where you can look back, and your feelings aren’t still raw.”

Lies says the qualities she brings are an ability to listen to family stories and to share part of her story when it relates to a situation which a parent may bring up. “I’m very passionate about my role. And it’s a reciprocal experience. I get so much out of it.”

Lies has logged over 700 volunteer hours in her work as a Holland Bloorview family leader. In this video she talks about what it's like to cope with a child's acquired disability.

To find out more about our family leadership program, call 416-425-6220, ext. 6420.

I am warrior mom: Hear me cry and roar

By D. Christine Brown

It was the morning of our son Lucas’s 10^th EEG since his acute brain inflammation in September 2011 and subsequent autism diagnosis.

It was cold and raining so we drove to SickKids hospital instead of walking. Lucas’s last EEG was over a year ago and it was still abnormal then on the left side of his brain, only slightly improved from the previous one six months earlier. I vowed that this time, I would accept the results, whatever they were. It is what it is. What will be, will be. I was too scared to get my hopes up high.

After Lucas was sedated and the testing underway, my husband went down to get coffee and breakfast. I watched the computer monitor and burst into tears. The brainwaves looked identical to last year, and with each abnormal spike, the attendant typed in a message marked by a yellow rectangle.

“You aren’t trained in reading EEGs,” my husband reminded me on his return.

The way my husband and I have grieved since our son’s brain injury couldn’t be more different. I have been plagued with sorrow. My husband has shown no reaction. His behaviour hasn’t changed at all. I have been an “extreme caregiver,” to quote author Donna Thomson, and a mother warrior. My husband, on the other hand, seemed to return to leading his normal life.

Back in the hospital in 2011, my mother-in-law assured me that if my husband grieved differently than I did, that was ok. “You don’t have to talk to him about it to find relief,” she said. “You can talk to others. Men don’t like to talk.”

But I never found anyone to talk to. I kept going and did what had to be done to get through each day. We had countless appointments, therapies, school, my own research and my own activities.

I was in a state of adaptation and acceptance. I didn’t realize that I had grief I needed to process.

I was driving my son to his specialized school this past winter and stopped en route for a sandwich. While waiting in line, my son was restless and active, as he usually is, drumming his hands on the sandwich counter and squealing loudly as he enjoyed watching the ceiling fans spin. People looked at us. I implemented my usual distraction techniques to keep his behaviour under control: “Look! Now the lady is making Mama’s sandwich. Oh, look! She’s putting it in the oven!”

When it was my turn to pay, I said “autism” as I pointed down to my son. The middle-aged woman of a Southeast Asian culture gave me a look of sympathy and said with her accent, “I know. I could see”…pause… “I’m sorry.” Fighting back the tears, I responded with a thank you, paid, and led Lucas to the car, where I let the tears drip down my face.

By the next week I had signed myself up for family counselling at Holland Bloorview through the Brain Injury Rehab Unit where we had spent three months of our lives. Family therapist Caron Gan helped me realize that for the first time, post-hospitalization, I had had my feelings validated—by this woman at the sandwich shop.

I’ve read many accounts of parenting following trauma and it seems to be a common theme that while family and friends are well-meaning and supportive after a tragic event in a child’s life, most want to focus on the positive. They’re unable to just cry along with us. Our society is uncomfortable with tears. I had many upbeat pep talks from people who gave us a ton of encouragement after my son’s injury. And those who focused on the negative focused on “why” this had happened. Why?

People expressed their feelings about what happened to us, but not mine. This woman in the sandwich shop simply connected with me, a stranger, and validated my reality.

Suddenly it all made sense: why I was completely unable to drop my crying son off at school and leave; why I accompanied him to school until February with only practice “trips to the store” so he could adapt to school without me; why I caved into Lucas’ wants at my own expense, and, ironically, his, unable to set boundaries when he screamed at the door while I showered every morning.

Caron explained that it’s common for parents of survivors of brain injuries and severe illnesses to be over-protective with their recovering children. After all, we are desperate to prevent them from suffering more.

But my hyper-vigilance about Lucas had distracted me from my own feelings of grief about what had happened.

Last year I heard former Canadian Olympian Silken Laumann speak at a BLOOM night about her experience parenting her stepdaughter with autism. I recently had the opportunity to speak with Silken again. She told me that nothing I feel is wrong. I may have intense sadness that this happened to my son or I may be angry and jealous when I see families out and about enjoying activities that we can no longer participate in due to our son’s autism. I may feel guilty that our son’s outcome and prognosis is so positive compared with other families who have suffered similar injuries, or grateful for having our beautiful son still vibrant and with us. These are all simply honest feelings, and they are all okay.

I had just returned home from my first session with Caron, the family therapist, when I opened my email and read this blog by Tali Berman, a developmental play expert: Redefining the meaning of ‘mother warrior!’.

Tali, who works with families of children with autism, suggests that being a warrior mom doesn't mean stuffing your feelings down. “Are parents living their lives with this niggling feeling that it is not okay to stop, fall apart sometimes, cry about the worry/stress/fear and overwhelm?” she writes. “That is what I want to offer to you today. The permission to be with it, to cry, crumble... release.” The timing couldn’t have been more appropriate.

I am a mother warrior! Hear me roar! (And cry!)

As it turns out, our son’s EEG was normal this time. He can be weaned off of his anti-seizure medication at last. Hear an exuberant sigh of relief! We drove home and by now, late morning, the sun had come out. The healing begins.

Caron informed me that my crying during the EEG was anticipatory grieving and that I got something else I wanted at the EEG that day. Before the good news about Lucas’s results, I hugged my husband in silence, while crying, and he hugged back. Perhaps my mother-in-law was right.

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 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.

Mama and Dad

Joy and grief: The dance

This mom is a lifeline for inpatient parents

I am warrior mom: Hear me cry and roar

One moment, forever changed

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