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After the fall

By Louise Kinross

Today is International Day of Persons with Disabilities.

We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics.

Then a crash head-first into ice almost killed him.

The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing brain injury. The film takes us into the world of Kevin’s close-knit family, which includes four brothers, one of whom has Down syndrome, and the gruelling rehab that follows.

BLOOM: What is it like to have two children with disabilities?

Pia Pearce: What’s even more interesting is that in addition to David having Down syndrome and Kevin having a brain injury, my husband Simon and sons Andrew and Adam have dyslexia, so my whole adult life has been about special education. I have a doctorate in education. So it’s interesting how life turns out and we all get what we need.

BLOOM: How did having children with disabilities influence the way you responded to Kevin’s injury?

Pia Pearce: I think it was incredibly helpful to me. I had learned, over the course of time, a lot about patience and acceptance and a lot about understanding differences.

Even though David, who has Down syndrome, didn’t have major health challenges, we started early intervention with him when he was only three months old. I feel I was very fortunate in many ways with my background in education and experience with the medical field.

I had learned that you can take things that can be challenging and difficult and see a silver lining and a positive side to them. For example, my husband, who didn’t do well at school, was a huge success at home and his family celebrated all the things he was good at.

BLOOM: What kind of prognosis was Kevin given early on?

Pia Pearce: We were never given definitive information because all brain injuries are different and everyone’s rate of recovery and ability for recovery is vastly different. When we were at the rehab hospital there was a floor for patients with spinal-cord injury and a floor for those with brain injury. It was surprising to learn that everyone with a spinal-cord injury seemed to have a very similar recovery process but with brain injury there was a huge variation.

BLOOM: How long was Kevin in hospital?

Pia Pearce: He was in intensive-care for 28 days and a step-down unit for six days at the University of Utah and then he was in the Craig Rehabilitation Hospital in Denver for three months.

BLOOM: How did Kevin end up in Denver when you live in Vermont?

Pia Pearce: When Kevin was in intensive care, a good friend of ours said he’d help by doing research on rehab hospitals. He spent a lot of time on the Internet and making phone calls to other parents whose children had been in rehab. He determined that Craig Hospital would be best and then my husband and son Adam and our friend went to visit Craig Hospital and made the decision.

BLOOM: How were you able to pack up and move to Denver?

Pia Pearce: I was very lucky. It’s amazing how things fall into place and friends step up when you need them. One of my closest friends from my first year in college lives in Denver and she had a friend who had a house available. The house was on the market and they said that until it was sold, they were more than happy for us to stay there. It wasn’t far from Craig Hospital. So Simon and I moved there and our son Adam decided to take a year off from his job to be with Kevin every day in therapy.

BLOOM: The bond between Adam and Kevin really came out in the film.

Pia Pearce: They were very, very close before the accident and Adam knew exactly what would motivate Kevin. Because of the lack of insight that comes with brain injury, when Kevin came out of intensive care he thought he was way better. He wanted to go home. Adam was with him all day, every day, in therapy and was able to bring humour to the situation and make it bearable.

BLOOM: As a parent, what was most challenging?

Pia Pearce: We’re coming up on five years and Kevin is still working on his recovery. Kevin has always been very particular about the therapists he worked with. He either really liked them or he didn’t. One of the hardest parts was finding the right therapist that was best matched for Kevin.

Kevin’s had a terrible time with double vision and trying to find people to help him with his vision has been a major struggle. He’s hugely excited right now because he’s finally working with a doctor in Atlanta, Georgia who specializes in brain injury and has helped enormously.

I feel really fortunate that Kevin has been so motivated about his recovery. He was born a very determined little boy. He came out into the world with perseverance, determination and wanting to work hard and that’s why he got so good at his sport. He then took those gifts and talents and applied them to his rehab. I think the hardest thing for parents would be having a child who doesn’t feel motivated and who gets discouraged easily—and the amount of extra support that child would need.

BLOOM: What helped you keep a positive mindset?

Pia Pearce: I can’t say enough about family support and the hospitals we were in valuing that part of the process and including our whole family. I didn’t have any experiences of places where we as a family were pushed aside and that would have been incredibly difficult.

I was able to support Kevin because I was getting support from my family.

I think family support, in all different ways, is critical. I learned early on that it was better if fewer people were with Kevin, because he got easily overwhelmed. I come from a big family and I had to ask them not to come and tell them they were supporting me by not coming. Some of our family was front and centre, taking shifts with Kevin and rotating. To other people I said ‘This is a marathon, not a sprint, and we’ll need you later.’

BLOOM: Families here say they often receive tremendous support initially but then people go back to their own lives.

Pia Pearce: It’s hard for others to sustain that kind of support when it’s not something like a broken leg that gets better in six weeks. For other people, your situation falls off their radar. The same is true for the friends of the young person. Kevin was very fortunate to have very good friends. But I’ve talked to other parents who were desperately unhappy that the friends of their son or daughter were leading their child astray, minimizing their injury and saying things like ‘You’re okay. You can come for a drink.’

BLOOM: Some parents say they have to mourn the loss of the child they once had to accept their child after brain injury.

Pia Pearce: I have to be totally honest and say that wasn’t a big issue for me. I didn’t see any value in going there. Or maybe it’s what we talked about earlier—that because I’ve had so much experience with accepting differences, my focus is on acceptance. We’ve worked forever with our son David, who has Down syndrome, on accepting who he is.

I’m a firm believer in the importance of feeling your feelings and feeling the grief. I’m not about denial.

However, there was a lot about Kevin’s extreme snowboarding that was nerve-wracking for me. So I thought at least I don’t have to go to those events and stand at the bottom of those mountains freezing cold and full of anxiety. What he was doing snowboarding was very hard for me.

The other big thing was that even though he had setbacks, overall he kept getting better.

BLOOM: Some people with brain injury have a change in their personality. Was this the case with Kevin?

Pia Pearce: Some of Kevin’s friends would say he’s quite different now. But I just experience who he is now and in some ways he’s more open and communicative than he was before and more aware of how blessed he is and how important it is to live in the moment.

I understand the sense that the person isn’t exactly the same, and some people with brain injury change more than others. It’s good to acknowledge one’s feelings about who the child was in the past, but getting stuck on them isn’t very helpful.

My present moment is so full and busy I don’t see the value in choosing to spend a lot of time grieving what was or could have been. I was amazed that Kevin did as well in snowboarding as he did. Maybe if I had been the parent who wanted more than anything for my son to win a gold medal in the Olympics, I would have felt differently. But that wasn’t the important thing for me.

BLOOM: What would you recommend for parents who may be stuck in grief?

Pia Pearce: Support groups for caregivers are very helpful. I’m also a big fan of talk therapy.

BLOOM: In the film one of Kevin’s friends talks about how their roles shifted. Kevin used to be like his big brother and mentor, and now their roles are reversed. Have roles in your family changed?

Pia Pearce: I’m the mom and I’m still the mom and I’ll always be the mom! My role hasn’t changed. Adam’s role changed the most. Adam and Kevin were in the world of competitive snowboarding together and travelled together. They went from being brothers and best friends to one being so injured and the other being part of the caretaking team.

I think it’s important for family and siblings and friends to adjust their expectations of the person with brain injury, based on the ramifications of the injuries. I remember a therapist said it was hardest for parents when they didn’t get enough information from doctors so that they could adjust their expectations realistically.

BLOOM: What kind of brain injury did Kevin have?

Pia Pearce: He had an injury deep in the centre of his brain. He had to relearn everything—to swallow, walk and talk. It was like starting over with a baby, but on this warp speed. The major issues were memory, his balance and vision. He still has a lot of problems with double vision.

BLOOM: Kevin’s brother David, who has Down syndrome, plays a central role in the film.

Pia Pearce: A number of people say that David is the secret star.

BLOOM: I agree! How important was David’s plea that Kevin not return to competitive snowboarding because he didn’t want him to die?

Pia Pearce: Kevin and the other boys are very independent-minded and I realized that if I put on too much pressure it wouldn’t be helpful. But David could speak from his heart and Kevin could really hear him.

BLOOM: In one of the most moving parts of the film, David talks about hating Down syndrome.

Pia Pearce: David has a therapist and we’ve worked on that in therapy. We’ve always told David we want him to love who he is. Kevin, Adam and David have taken the film to the National Down Syndrome convention and other self-advocacy events and focused on the theme of acceptance. It’s had a very positive impact and David now is able to say that he does accept his Down syndrome.

It has been hard for him to make close friends—not so much in the elementary grades, but as he got older. More recently he has a close friend who he’s calling his girlfriend and that’s making a big difference in his life.

BLOOM: Does David work in your husband’s business?

Pia Pearce: He has three part-time paid jobs. He works in our glass-blowing business, and at a payroll agency and at our local fitness centre. He loves to work out at the fitness centre and they employ him in the operations department folding towels and filling soap dispensers.

BLOOM: What did Kevin find to replace the joy he got out of snowboarding?

Pia Pearce: He does still snowboard, but he does it for pleasure. He goes where it’s safer, where they have deep powder. He’s more aware of what a huge risk it is.

The biggest thing for Kevin and Adam right now is the foundation they started called Love Your Brain. They want to improve the quality of life of people living with brain injury. Their big push is offering free yoga classes to people with brain injury and their support workers. They’ve got pilot programs in Vermont and New Hampshire. Kevin has benefited so much from yoga and mindfulness meditation.

Kevin and Adam were just speaking to 900 managers at a Lululemon conference in Vancouver about partnering with them to promote yoga.

BLOOM: The film covers Kevin before and after the injury. Did you begin work on it before his accident?

Pia Pearce: No. We had a lot of family footage we’d taken and when Kevin began rehab, Adam and my husband Simon were great at having a camera around all the time. The doctor said that Kevin wouldn’t be able to see how he’s getting better, so it would be important to show him through video. We were able to give that footage to the director, Lucy Walker.

BLOOM: Has participating in the documentary helped or harmed the healing process for your family?

Pia Pearce: The process has been hugely helpful to Kevin and David. I can see how much it’s also helping other families who watch the film. That’s been a fantastic feeling for me: to take something that’s been so incredibly challenging and difficult and stressful and have amazing, positive things come out of it. One of the things I was happy about was that when we watched the rough cut I felt it was really honest. I felt it was an honest, accurate portrayal of who we are and how we dealt with it.

Sister story: Daniel makes me who I am

By Anna Penner

As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given.

I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is.

Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew used to pray that Daniel would be healed. Then he’d run to Daniel’s side, only to find that nothing had changed. I don’t remember ever praying for healing.

In fact, I was so accustomed to disability as a young child that I walked into the home of some new family friends, looked around, and asked my mom “where’s the handicapped person in this family?” Disability has always been a part of my life and it has had a huge impact in forming who I am today.

Daniel has Batten disease, which is a neuro-degenerative disease. He functions like a six to nine month old. He can’t talk or walk or feed himself, and he wears diapers. We can tell if he is happy or upset but we can't discern what he wants or what would ease his discomfort.

When I was in second grade, our brother Andrew moved away and I assumed the role of the oldest child. Soon I was changing diapers and feeding Daniel through his g-tube. By high school I was taking my parents up on the offer to babysit Daniel to earn money, rather than go out with friends.

The year I entered college, Andrew and my parents became legal conservators for Daniel but I was left out of the process. The legal team suggested that the court would look unfavourably on an 18-year-old taking on this role.

Ten years later I became a legal conservator and the weight of my responsibility for Daniel was simply made official. I feel this responsibility in different ways.

For example, when I think about where I might move for my career, I think about how that will affect Daniel. When I start dating a new guy I wonder if he can ever fully understand the responsibility we will carry for the rest of Daniel’s life. I wonder if the guy carries the gene for Batten disease and if our children could have it. When we plan family vacations we'll have to think about the type of car we rent and where we're staying to make sure it can accommodate a wheelchair. It’s just part of life with Daniel.

The few times a year that I am in town, I go visit him in his group home. Most of those visits are not what I would call enjoyable. I feel obligated to go visit him, and guilty if I don’t. I feel guilty that I don’t visit more often, but after visiting I come away feeling like he probably doesn’t even care. When I walk into his home and call out his name he often turns away and ignores me as if to show his displeasure for my prolonged absence. And yet I continue to subject myself to the torture of simultaneously feeling guilty for "not doing more" and "not wanting to do more."

But even with all of these mixed emotions and uncertainty about how to be the best sister to Daniel, I wouldn’t change it.

Do I wish he could communicate with us? Absolutely! Do I wish he wasn't in pain? Of course! Can I imagine what my life would be without him? No way!

While my friends probably wouldn’t call me a patient person, I know I'm far more patient than I would be if Daniel had developed typically. I know I'm much more understanding and empathetic to those who are overlooked and misunderstood. All of these experiences led me to enter a graduate program in Sociology so that I could look at how children are affected by having a disabled sibling.

My early findings show that in the United States, girls who have a brother or sister with disability tend to get half a year less schooling than their female peers with typically developing siblings. For boys there doesn’t seem to be a difference. While these are raw statistics and do not fit any one individual perfectly, they reveal a disturbing trend.

Every time I see the disadvantage that girls with disabled siblings face, I realize how fortunate I am that I'm even in graduate school and that I have never felt like my parents expected me to care for Daniel more than our brother Andrew—just because I'm a girl.

My parents don't expect us to be responsible for him financially when they pass away. When I browse message boards for adult siblings I realize how truly fortunate I am in that respect. While there was a lot going on behind the scenes that I didn’t know about growing up, my parents did the best to give each of us the best family life possible.

My parents also pushed us to perform to the best of our abilities and not take anything for granted. While I sometimes felt the need to make up for Daniel’s deficits, that was never something I felt my parents expected of me. They wanted me to use the gifts that I had and realize that they were just that: gifts. I could just as easily not have had those gifts. They also helped me use those gifts to be a blessing to others. If my experiences, good and bad, can help other siblings out there, then it is all worth it.

With this in mind, I started looking at how siblings fare as they grow up. Although some sociologists have studied children with disabilities or their parents, we siblings have gone largely unnoticed. We recognize that a child with special needs requires additional therapies and that often takes up the family’s time and money. But how does that affect their siblings?

When I look back on my childhood, I can’t think of anything my parents could have done differently. They did not take my commitment to Daniel for granted. They did their best to make sure we were not held back by Daniel’s limitations but also made sure we were engaged in the community as a family. My parents would bring Daniel to my basketball games and I was expected to attend his field day at his special school. This was just what family did. Daniel supported us and we supported him. My parents didn’t make a big deal about it; that’s simply the way it was.

I keep a photo next to my work computer of my family from when I was three years old, right before Daniel almost died. I look at the children in that photo who have no idea what life has in store for them. Andrew and I don’t know what additional struggles we'll face because of our brother's disability. We don’t know how quickly we'll have to grow up compared to our peers.

Next to that old photo I have a recent picture of me with my brothers. In this one we are grown up. The photo captures our personalities. We are happy people. We aren’t jaded by the experiences we did or didn’t have growing up. We easily integrate the wheelchair into our pose. It is just who Daniel is, and that is what makes our family our family.

When people ask what it was like growing up with a special-needs brother I don’t always know what to tell them. It is the only life I have ever known. While I would not wish the pain of it on anyone, I also know that Daniel’s laugh is the sound of true, unbridled joy, and that all of our experiences together—good and bad, easy and hard—have made me who I am. I wouldn’t trade them for anything.

Anna Penner is in the second year of a PhD in Sociology at the University of California, Irvine.

'No brother or sister should grow up thinking I'm the only one'

By Louise Kinross

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness.

Anjet, 38 (above left), grew up with an older brother Jalbert (right), who was born with a visual disability and autism due to exposure to an infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69.

Her goal, she says, is to let all siblings know that they’re not alone, their thoughts and feelings matter, and that they must pursue their own dreams to be happy. Only then can their adult relationship with their brother or sister “come from the heart, rather than feel like a must-do obligation,” Anjet says.

Here she shares her own story growing up. Look to the September issue of BLOOM for Anjet’s tips to parents on siblings.

BLOOM: Tell us a bit about growing up with your brother.

Anjet van Dijken: When he was born he could only see a little bit and at age 11 he suddenly became blind. He had a mental disability that made him interested in just a few things: listening to marching band music and taking the train. He was perfect at knowing all of the bus and train timetables.

When I was three and Jalbert was six my parents decided to let him live in a home. My mother felt that he would get the best help there and that she had created a safe environment for him. She was worried about the future, about who would care for him when she wasn’t there. She didn't want to put the ‘burden’ on me.

To solve the problem that he lived 70 kms away, my parents purchased a summer vacation home near him. Every weekend we would drive from The Hague, where we lived, to our summer home in Utrecht. We’d pick him up, spend the weekend with him and then drop him off on Sunday afternoon.

I felt growing up that my brother was a lot in his own world and I tried to get him out of there. I felt his disability was too often used as a poor excuse for leaving him in his own world. For example, if people visited us, he could stay in his room and play his music for another three hours, while I was expected to come down, say hello, and sit for a while, even if I didn’t feel like it.

As a child I had all these thoughts about him and his development but I didn’t think my opinion mattered. The deepest reason for writing my book is to say to other siblings that their thoughts and opinions do matter and need to be expressed.

BLOOM: How did it feel when your brother moved away?

Anjet van Dijken: It felt normal. At age three I didn’t have any comparison. I didn’t feel a rupture because we went every weekend to my brother so I always felt I grew up with him, and that was a nice feeling. I loved his home. It was on a big terrain with lots of trees and until he was 11 he could see a little, so we could bicycle around that terrain together. He went to school but it wasn’t academic so I was jealous of him. He did fun and creative things like Snoezelen and colouring, while I had to learn things in my school.

BLOOM: Was it painful for Jalbert to go to the new home?

Anjet van Dijken: What has stayed in his mind is that he got to take a bus there and that the bus was great fun. It was exciting for him. He doesn’t complicate things. He doesn’t live in the ‘I wish I could’ world. He takes life as it is. I never felt that our weekends with him were not normal or that our goodbyes were painful for him.

BLOOM: What was it like for you to live in two places?

Anjet van Dijken: My life has been divided in a lot of respects. My upbringing in The Hague was like any other child’s. I had a mother waiting at home for me after school and activities like playing with friends, swimming and skating. Yet I felt like I was the only child, so I felt guilty about sort of ‘hiding’ my brother.

In Utrecht, life revolved a lot more around my brother. The plus side was that we were brother and sister. But Jalbert living away from us wasn’t ‘normal’ and I could never explain him to my friends: the fact that he lived in an ‘institution,’ as it was called then, always got in the way.

One thing that’s different for parents and siblings—especially for siblings who are younger than the child with disability—is that the disability and the brother go together. If people thought my brother was disabled I couldn’t understand that, because he was my brother. The disability belonged to him, [it] was part of the picture. I still can’t see the disability apart from him.

But it was impossible to tell my friends that Jalbert was ‘just like any brother.’ The best way I found to describe him was to say ‘I have a brother who's blind and disabled but always very happy!’ and I would emphasize the happy part. I wanted people to see him as he was.

Of course, he was not a brother that wanted to play with me, but what I admired in him was that he always saw the positive in people and situations. He will defend anybody and that was more important to me than the fact that he had disabilities. For me it was normal to walk across the street with him on my arm. Yet people would stare at us. Other people always saw the handicap. They never looked beyond the handicap. So that made me doubt myself a lot: maybe I was the one not seeing him for who he was?

For siblings, the hardest thing is that you have this brother that you love and others don’t see him for who he is. Growing older and looking back, I was angry at other parents with healthy children: they had a duty to educate themselves and their children.

Going to visit my brother on weekends became difficult for me from about the age of 12. That’s when I noticed that my friends were having games of hockey or tennis or doing other sports on the weekend in our hometown, and I couldn’t because I had to go along with my parents and brother.

BLOOM: What happened in your teen years?

Anjet van Dijken: As you get closer to puberty, friends start to matter more than brothers and sisters. That’s the case in every sibling relationship, as I show in research included in my book. But because Jalbert was not very involved or interested in my life during those years, I didn’t know what we meant to each other.

I began to think that my brother was of no use to me. And, in fact, he was a drawback: people always saw me as ‘the girl with a handicapped brother,’ not for who I was or wanted to be. At age 14 I sort of decided ‘he’s in a home, he’s not really in my life’ and it was like a rupture in my head.

Looking back, I was starting to form my own identity. I started to separate myself from the role I’d had with him, which was being either the carer or the class clown. I had loved the role of making my brother laugh to bring him out of his world. But at around 14 being the clown clashed with who I was.

At that time I'd started a hobby, working at a local radio station. For the first time in my life it didn’t have any link to my brother. I felt such an energy doing something I liked to do, just for me.

For a long time I felt guilty though, for being so selfish, for growing up and 'mentally' breaking up with my brother. But in retrospect I feel it was very healthy for me to say: ‘Now it’s my turn.’ My mother was understanding. She said ‘You don’t have to come with us every time we go to the summer home’ and she praised me for enjoying my life. More and more on weekends, I would stay with my father or we would go up later on a Sunday.

BLOOM: When you were young, both of your parents died.

Anjet van Dijken: When I was 16 my mother was hit by a car coming home from a school meeting about me. The next day she was declared brain dead.

Three years later, after my dad and I had grown closer, my dad died of an aneurysm. I was three months into university. The only light points were that one, my brother was there—I have one family member left and thank God it’s the one who is always the same— and two, he is taken care of in a home, so I don’t have to leave university.

The first thing I did with my brother after the funeral was to take him on a train trip.

BLOOM: How did he respond to your parents’ deaths?

Anjet van Dijken: For me, it was all about the emotions, but for Jalbert it was the factual that counted: ‘I counted on my mother, and she went,’ he said. ‘I counted on my father, and he left. Now I only have you. I can’t count on you anymore.’

For the first time I really hated his disability. I was the only family member left and he was going to throw me out too?

And not only could I not share my emotions with him, and memories of what we’d done together with our parents, but I felt an even bigger gap between us. Really, what was our bond? Was my role to be his carer, or was there room left to be his sister? At that point I felt empty. I felt I was expected to be his carer, and that felt wrong.

But that’s what I did for the first couple of years. I mindlessly helped him continue with his life as he had lived it when my parents were alive. I told myself I had to take him on a train trip every two weeks, but from day one I resented it. I don’t think it was fun for either of us.

Slowly, during my university years, I began to see that other brothers and sisters didn’t see each other every two weeks. I decided I should visit when I felt like it and I could sometimes have a day off. I started to say 'this is my life too, and I don’t always come second. '

BLOOM: Why did you decide to write your book?

Anjet van Dijken: The main reason is that I didn’t want other siblings to feel alone, as I had for so long. No brother or sister should grow up thinking I'm the only one with questions, with thoughts, with conflicting emotions.

You can be proud of your brother and at the same time ashamed, and then angry for being ashamed, and then sad because you were angry. My first idea was to write my own story. But then after working at the radio I felt strongly that if I interviewed 36 siblings, readers could ‘see’ that they weren’t the only one.

The other thing is I want to make siblings think about what they want in their own life. I want to show them by reading others’ stories that everyone is wondering about their place in the family and in the future, including their role in their sibling’s life.

Dr. Tinneke Moyson, the researcher who contributed to my book, found siblings tend to put themselves in the background. Out of loyalty, they feel they have to obey their parents and continue putting the [disabled] sibling in the centre of the family.

For siblings, trying to put yourself in the background AND living your life doesn’t work: it catches up with you. Though living your own life is not easy—especially if your parents have different expectations for you—I tell siblings they have to think about what they want first, and then how they’re going to be a part of their brother’s or sister’s life. Only then can you do it wholeheartedly.

BLOOM: You spoke to 36 siblings aged six to 69. What was the most common challenge they faced?

Anjet van Dijken: The first thing I noticed was that 33 out of 36 said they had never ever talked about this to another sibling. They had never met another sibling of a child with disability.

I loved writing the book because there’s no judgment between siblings when you have been through the same experience. Even though one person has a sibling with autism and one has a sibling with Down syndrome, they don’t look at what is different, but where are they the same? What can we relate to?

The common denominator is that you always defend your brother or sister first. If you interview a sibling they will tell you all the positive things first because it’s so important to them that others see their brother or sister as a person. You want them to be accepted. Then, if you feel understood, you will share what’s difficult. But initially there’s a holding back of your emotions.

BLOOM: Were there other common experiences?

Anjet van Dijken: I go to evenings where I speak to about 100 siblings and 80 per cent or more have never heard anyone speak the way I do about putting their life first and daring to talk about their emotions. Not only have they felt alone, but they thought they were crazy for a lot of the thoughts and feelings they have. ‘Now I understand I’m not crazy,’ they’ll tell me. ‘I’m a sib.’

BLOOM: How can siblings best be supported?

Anjet van Dijken: I'm involved in a research project with the Dutch Youth Institute where we hope the Dutch government will set a base of support and information for siblings, because there is none. One of the big problems is that siblings feel loyalty, out of love and respect, for their parents. So if they disagree with something—with the parents’ vision of how the future is going to be and where they fit in—they don’t dare speak out.

The sibling relationship is different than the parent relationship. As siblings, you’re not above or below, you are equal.

One sibling said to me: ‘I can’t tell my mother that my brother acts even more disabled when he is with her. With me, he can make his own toast, but with our mother, no, he just sits there and acts like a baby.’ The other child can see progress that the parent can’t.

Siblings aren’t initially aware that they need support. What they tell me is that they don’t want to go see someone like a psychiatrist. They want to know that there are other siblings and to get in contact with them. After one of our sibling group evenings they will say: ‘Wow, we all have the same thing.’

There are a few sibling groups for young children, but nothing for adults, and that’s my main focus.

Things get complicated when siblings are in their 20s and they have a relationship, or children, or a job. Many sibs spend every Saturday, or every other Saturday, caring for their brother or sister to give their parents relief. So young caretakers become adult caretakers.

But there's more: Our brothers and sisters are, due to advancements in health care, the first generation of people with disabilities who are outliving their parents. In America I read about the 'sandwich generation:' We are the ones raising our children, looking after our parents and taking care of our siblings. The how needs to be addressed, because we're not 'super' siblings.

Anjet can be reached on Twitter @DutchSib or at the Facebook group for her book. She has a Dutch Facebook group for siblings at Lotje@coBrussen. Her book is available in Dutch but she would love to hear from families and professionals who'd like it translated into English. Watch this captioned video of her book launch. The Brothers and Sisters Book is published by LanooCampus: EAN 9789401408844. This is the book cover and a photo of Anjet and Jalbert as children.

Everything you want to know about siblings

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness.

Anjet, 38, grew up with an older brother Jalbert, who was born with a visual disability and autism due to exposure to a parasitic infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69. Her goal is to let all siblings know that they’re not alone, their thoughts and feelings matter, and that they must pursue their own dreams to be happy. Only then can their relationship with their brother or sister as an adult "come from the heart, rather than feel like a must-do obligation," Anjet says.

Look to the September issue of BLOOM magazine for a full interview with Anjet. Here, we include her advice for parents raising a child with disability and their siblings.

BLOOM: What advice would you give parents?

Anjet van Dijken: My general advice is: Accept the situation with your child with a disability as it is, as soon as you can. Don’t stay in the fear and guilt. Very, very easy to say, but really—there are no other options. Fear is the worst guidance in life. It is toxic for the whole family. So try and work on acceptance every day, and do not hesitate a second to ask for assistance.

Look for ways to help yourself. You have to fill yourself up in order to be able to give to your children. Acceptance is also accepting that you can’t do something anymore, or that it’s hard. Your family needs support, some outside eyes, to make sure you’re doing enough for yourself. Connect with other parents of children with disabilities or find a therapist who has worked with families like yours. You need help to learn how not to be so worried or so hard on yourself, so that you can be open to your other children.
Try not to be too hard on yourself with choices you make for your child with disability. You’re always being judged, no matter what you do.
Isolation is the biggest threat to a mother and father. If I had a baby with a disability, I would phone my friends and say: ‘We’re making a date in six months and we’re going out. Even if I don’t want to, you’re taking me out.’ Understand that because having a child with a disability is like learning to adapt to a new culture with new rules, your friends who don’t have this experience will not understand you. Try not to blame them.
Accept help. Maybe a neighbour who loves your child and sees your child for who he is will offer to babysit. Parents always say ‘No, I can do it on my own.’ ‘I can do it on my own’ is the worst thought you can have, because at some point you won’t survive your child.
Future planning is important. I’m very proud that my mom made the decision for my brother to go to a home and she stuck to it. Having a decision gives the whole family an ease.
Know that at different times you won’t always be the best person for your children to talk to about their relationship with their disabled brother or sister. Look for ways to connect your children with other siblings (support groups, books, through your children’s rehab centre).
If your child goes to a school or daycare for children with disability, ask the school if they can do a day for the classmates’ siblings. Maybe there’s a girl that your daughter clicks with and she writes down her e-mail address and they keep that bond.
Be aware of how much you ask of your other children. If you ask a sibling to do something, they’ll always immediately say ‘yes.’ After the birth of my son I couldn’t figure out why I didn’t enjoy feeding him. And then I had a flashback to when I was little and I always had to help my brother finish his plate. I’d forgotten about it, and I’d never told my brother that I hated it. I was taught not to talk about my emotions and it only came out after I was 30.
Try to have open communication. When writing my book I noticed that the positive life stories for siblings were when the parents would sit down after dinner and talk about things openly and everyone had a right to speak their own mind. But you can’t have open communication when a father or mother is overcome with fear or guilt. That’s why parents need to get support for themselves. Dr. Tinneke Moyson, who has researched quality of life in siblings, says that open communication in the family is the most important thing.
Help your children develop their dreams. When your son does something out of the ordinary, or says ‘I really want to do this,’ and it has nothing to do with the disabled sibling, be proud.
I loved music and when I came home from school my mother would be ironing and she’d have my house music on. She’d be enjoying it and I felt that I had inspired her. Not because I was such a good carer for my brother, but because I had picked up something I liked and it made her happy.
A lot of siblings say they’ve had so much praise for their good behaviour and that’s part of the problem. They feel they can’t live up to that standard, so they feel a bit of a failure. Other than being given the role of the good child, they’re often not stimulated in other areas. They never learn to diversify. Emphasize other things in your child’s character, not just that they’re attentive or helpful. Sometimes they don’t like helping!
Siblings mimic how their parents deal with situations. They react not just to what you say, but what they feel. If you’re sad, but you’re trying to hide your emotions, the child will try to do the same. But the child comes to believe ‘My emotions don’t count.’
Think about what other people would do in your situation, or ask a friend or your child’s teacher for advice regarding your children who don’t have disabilities. ‘What is your view of my son? How do you think he’s doing?’ If you’re absorbed by problems, it’s hard to observe what’s happening in your other children.
A researcher said that a lot of parents of children with disabilities think that the normal rules of parenting—like giving each child the attention they need—don’t apply anymore. But it’s not only the disabled child who needs to be observed. It’s the other children too. It’s good to get back into that normality. It’s not so much the amount of time you spend with your other children, but thinking about them, observing them.

Anjet can be reached on Twitter @jetalerte. Her book is currently available in Dutch but she would love to hear from parents who would like it translated into English. Anjet runs a Facebook group with almost 100 siblings aged 14-50 called Brother and Sister.

Other resources:

Sibling Support Project

Sibling Leadership Network

Filmmaker Kelly O'Brien on grief, siblings and honesty

A recent BLOOM night focused on filmmaker Kelly O'Brien and a screening of Softening, her film about raising her son Teddy, who was born with brain damage and a grim prognosis.

Softening is a candid story about a mother's love and pain, a sister's magical bond, a father's joy and devotion and a little boy's experience of the world. This Youtube clip is a portion of an interview we did with Kelly following the film.

A condensed version of Softening that focuses on Teddy and his sister Emma was posted on The New York Times. Thank you Kelly!

'Why do you love Jacob more than us?'

The Boy Who Can is a story about my friend Marcy White’s perseverance, creativity and courage in the face of her son Jacob’s life-threatening genetic disorder. The book begins with this “Letter to my Daughters,” Marcy’s twin daughters Sierra and Jamie (all above) who are not affected. It describes the natural hurt siblings can feel when so much of their parent’s time is taken up attending to the child with disability. An important message for all of us. Thanks Marcy!

Dear Sierra and Jamie:

You are too young for me to share this with you now but one day, when you are older, I will tell you how my heart hurt when you asked me why I loved your brother more than you. Your questions caught me off-guard and I’m not sure I expressed myself properly. I desperately need you to know that it is not true.

Being a parent is a constant juggling act, there are always so many balls in the air at risk of falling down and crashing to the floor. Parenting in a household with a “differently-abled” child like your brother is even more of a challenge, simply because his needs are different.

Jacob can’t speak so he doesn’t ask me to play with him. You do. Sometimes I feel guilty for spending more time with you, my mobile and verbal twins, than I do with your brother, who is dependent on others for absolutely everything.

I struggle with balancing my time between all my children. I am constantly asking myself how I can meet your needs without feeling that Jacob is constantly left out. At eight years old, you know so much about disease, more than any child your age should have to comprehend. You are aware that Pelizaeus-Merzbacher disease (PMD) is carried on the X chromosome and that you have two healthy Xs but Jake has a sick X that causes his PMD.

You understand how PMD affects your brother, how he can’t ask me a question, sit by himself or walk. You know that he can’t eat like you do, and needs to be fed with the tube that was surgically implanted into his stomach when he was a few weeks old.

Everything is so hard for him, while you girls can ride your bikes, dance and eat the things you help me bake.

Although it may seem as if Jacob and I spend a lot of time together, relatively little of it is “fun” time, and in fact, we have little time alone during the week. We have our special allotment on Saturdays, but as you know, that it never starts off as a fun morning.

As Emily’s overnight nursing shift nears its end, I try to make sure your breakfast is prepared and a supply of bibs is packed in a bag for Jacob, all his things organized and easily accessible as soon as the front door closes behind her. I run through my mental list of things that need to be done before the craziness begins in earnest.

From the moment Emily walks out of our house until your big brother is fastened in his car seat, you listen to Jacob crying and screaming. Our neighbors must wonder what awful torture I am inflicting on him. And I see you sitting there with your hands over your ears, trying to block out the noise. When you realize that won’t work, you begin to dance around in front of your brother in an eager attempt to console him and elicit a smile. You probably don’t realize this, but I stop what I’m doing and watch you. My heart swells with pride when I see you trying to help Jacob but I also feel like crying—I wish you didn’t have to watch your brother struggle so hard to make himself understood.

You should be able to enjoy a lazy weekend morning at home in your pajamas, cuddling in bed with your parents, not watching us run up and down the stairs, organizing your older sibling’s medical paraphernalia. Unfortunately—for all of us, but especially for Jacob—this is not what our life is like.

In order for me to hang out with Jacob, we have to leave our house. He screams incessantly when I try to play with him at home while you are present. As soon as we leave, he calms down. I have his full attention and together we can enjoy the outing. Maybe Jake knows that I can’t tune everyone else out at home and that he is forced to share my focus with you, the cats, and all the other millions of things that distract me. Regardless of the reason, when we are out, alone, we have fun. It’s “Mommy and Jakey” time.

And we have our weekly swimming. You know how your big brother loves the pool and has learned to swim somewhat independently, surprising the lifeguards and making us all so proud of him. If I’m nearby and not in the water with him, Jake complains and is unable to enjoy the activity; however, if I am in the water, reminding him to move his arms and kick his legs and encouraging his effort, he beams. He giggles and I feel his arms tighten around my neck in a delicious and intentional hug.

After our 45-minute swim, as we are getting dressed and ready to leave, my back aches. Holding him, walking with him on the ramp into and out of the pool, is taxing on a body that has endured more lifting and twisting than it can handle. But watching Jake swim the length of the pool, seeing his little legs break the surface during a kick and listening to his squeal of delight when his hand touches the wall at the end of a lap, is worth every pain.

After those outings, I return feeling like I have spent some quality time with my first born, the child I often believe does not get enough of my undivided attention.

It is so much easier for me to play with you, my beautiful darlings. You express your thoughts and questions so eloquently, and you don’t need me to help you move your leg if it slides off the footrest of your chair. I am in awe of your intelligence and imagination. I love watching you play elaborate games with your dolls as you create different experiences for them. I can sit and listen to your stories for hours. I marvel at the various masterpieces you create for me, each one an incredible work of art.

I drive you to and from your school while Jacob is bussed to and from his. I bathe you and help put on your pajamas. I tuck you into bed at night and comfort you when you wake with a nightmare. A caregiver bathes your brother because he is too heavy for me to carry. I am terrified that I might drop his wet and slippery body during the short transfer from his special shower chair to his changing table.

The same caregiver puts Jacob to sleep while I’m with you, listening to stories about your day. I crawl into bed with Jake for a few minutes of cuddling before he falls asleep. And it’s the nurse in his room who administers his medication and helps ease him back to sleep in the middle of the night when he wakes up with a fever.

But, when I put you into bed this evening, your question sliced through me like a jagged edge of broken glass: Why do you love Jacob more than us?

The answer, quite simply, is that I don’t love him more than you. And I don’t love you more than him. I love all of you the same. I just have to show it differently.

All my love,

Mommy

Marcy is speaking about her book at a Toronto event run by Three to Be's Parent Advocacy Link on May 28 from 7 to 9 p.m. at 452 Wilson Ave. RSVP to brenda@threetobe.org

'I loved my grief because that was my brother'

By Louise Kinross

Family Life by Akhil Sharma is a semi-autobiographical novel about a family’s journey to two new worlds.

In 1978 the Mishra family from Delhi, India moves to New York, a place that’s fairy-tale like to the Mishra boys with its hot-water taps, elevators and wall-to-wall carpeting.

Then, just as the older son, Birju, is accepted into a prestigious school, the family is upended by a catastrophic accident: Birju survives a near-drowning, leaving him with severe brain damage. He is unable to move, speak or see.

The story is told from the perspective of the younger brother, Ajay. While his mother becomes a round-the-clock caregiver who can’t give up the dream that Birju will "awaken," his father becomes an alcoholic.

Ajay stands alone in his grief and guilt, raging against this new world in which the brother he knew is gone. “Seventy per cent of it is true,” Akhil told me.

My interview with Akhil began with his responding to a question I asked about what kind of internal life his brother had after his injury.

Akhil Sharma: I was thinking about your question about how much sentience remained in my brother. He could laugh, and I’m not sure what he was responding to, whether it was our tone. My mother said he could hear us and she believed he could understand us.

I remember right after we brought him home I spent hours talking to him and trying to get him to laugh and climbing on his bed and making noises so he would grimace. I do have the sense that something was there. An earlier draft of the book had more of the brother laughing.

My experience was that there were two horrible things that occurred. I began to feel that I could get him to make little grimaces but I didn’t know what this meant. I was only 12. And I found it frustrating, not only because the response was so little, but because my mother was forcing an interpretation upon this which made me unhappy. She said [Birju] was still inside, he was still the same. This made me really angry.

The other thing going on was I felt I had to do everything. I felt I needed to sit with him for hours every day and all day. At some point I began to not do so and my mother would shout at me and tell me I was selfish and that gave me further incentive to not interpret his reactions as meaningful. For me, and the character, his grimacing didn’t signify much, because there was no emotional satisfaction for me.

BLOOM: Because the brother you knew was no longer there.

Akhil Sharma: Correct.

BLOOM: Why did you decide to write the book?

Akhil Sharma: I want it to be useful. I felt something really bad has happened, let me make something good out of it.

BLOOM: I think the book beautifully captures the love and resentment that exists between siblings. Before Birju’s accident you describe him as the person who’s most valued in your family.

Akhil Sharma: In the end what matters is not what the parents actually do, but how it’s experienced by the children. The child views the parents focus on the brother, whose studying to get into a special school, as sort of ‘Thank God they’re bothering him instead of me.’

BLOOM: Yes, but after the accident Birju becomes the focus because of his severe disabilities and you’re completely overlooked.

Akhil Sharma: They say the way deprivation works is you don’t know what it is. You don’t know what you’re missing. It’s like a vitamin deficiency. For me there are two things. It’s reasonable for parents to focus on the sick child. The character and I to some extent choose to make ourselves small. We realize that there’s this enormous need and we shouldn’t be in competition for resources. At some point Ajay begins to hold his breath and asks God to give the extra breath to his brother. The child chooses not to be a problem and chooses to win attention in other ways.

BLOOM: Initially you spend a lot of time praying with your mother and trying to behave.

Akhil Sharma: After the accident it was a hopeless situation, so you do the one thing you can do, which is pray.

BLOOM: But in one scene you’re bathing your brother and you begin to cry because you say ‘We’re not good enough people.’ This resonated for me because I’ve often found that my son’s disabilities seem to show up all of my inadequacies, all of the ways in which I wish I was a better person. At other times, if a negative thought about your brother enters your mind you immediately chastise yourself.

Akhil Sharma: That is exactly right. Another way you are constantly aware of your inadequacies is that there’s this enormous need and you can’t behave in a perfect way, so you’re constantly getting angry. You’re always aware of your inadequacies and also of not having enough money, enough resources, of not being smart enough. You’ve got an insurance form to fill out and why does it take three hours to fill out? All of these things make you aware of being a failure.

BLOOM: You talk about wanting others to see that Birju mattered. Why did you feel he had been stripped of his value?

Akhil Sharma: Because I didn’t understand what this thing meant. I felt that because this thing was so enormous for me, I wanted everyone to value it in the same way I did, and other people couldn’t. They couldn’t comprehend it. They didn’t know what it meant to spend all of our time in hospitals. I felt that since our world had ended, other people’s world should have ended also.

BLOOM: Did no teacher or health professional ever tell your parents that you, as the sibling, needed special support?

Akhil Sharma: No. We had none of that. I had an aunt who is a doctor who is an utterly useless woman. A colleague of hers said ‘Hey, this thing occurs to the entire family, and they should go to talk to a therapist about it.’ And my aunt said: ‘Oh, all you do in therapy is talk and in our families we talk all the time anyway.’

BLOOM: But that kind of conversation would have had to be facilitated by professionals.

Akhil Sharma: I remember how shocked I was when I read in Shakespeare where a king tells a mother ‘You grieve too much for your dead child’ and she says:

Grief fills the room up of my absent child,
Lies in his bed, walks up and down with me,
Puts on his pretty looks, repeats his words,
Remembers me of all his gracious parts,
Stuffs out his vacant garments with his form;
Then, have I reason to be fond of grief.
(Constance, in The Life and Death of King John)

I remember reading that and thinking holy shit: I loved my grief because that was my brother. If Shakespeare can do that to me, I hope when people read this book they feel that they’re not alone. When I was growing up it felt like I was the only one.

BLOOM: The feeling of shame comes up quite a bit in the book. At first you don’t tell kids in your school about your brother. Were there other students in your school with disabilities?

Akhil Sharma: There were not. The shame was vast and it was survivor’s guilt and it was attached to everything. It took on whatever form there was to take on. There was the shame of racism. That maybe I deserved to be shouted at or cursed at because I’m actually a bad person. Or the shame could be because I got good grades but really, I had to work like an animal, so basically I’m a loser because all I can do is work like a donkey.

BLOOM: One of the saddest parts of the book, I think, is when your dad gets treatment for alcoholism, and then starts telling people about it as a way of proactively helping himself stay dry. And instead of supporting him, the Indian community shuns him.

Akhil Sharma: Who would want their father to go around telling people ‘I’m an alcoholic?’ In middle class Indian culture it matters a lot how you appear to others and a lot of the status this family has was attached to it being considered holy. The father’s behaviour destroys all of that value.

BLOOM: The injustice of Birju’s accident, and how you come to see yourself as the lucky one in the family, leads to a lot of grief and guilt. There’s a line in there where you talk about how ‘Birju needed to be okay to be okay ourselves.’ I think that’s a common feeling for parents and siblings.

Akhil Sharma: For me there were two things going on with survivor’s guilt. There was survivor’s guilt relative to my brother. I remember walking around my school field and crying and having a conversation with God and in one conversation he asked if I would switch places with [Birju] and I said no. And I immediately thought I can’t be trusted. I’m selfish. It wasn’t that I survived, but that I would choose to survive over him.

And the other type of survivor’s guilt was with my parents. When [Birju] first came home from the nursing home there’s a scene where I leave my mother behind to go to school. And while it’s okay that I have a life different from my brother, it’s not okay having a life different from my mother. I didn’t want a life like that, that allowed me greater privilege than my mother.

BLOOM: You never got a chance to express your grief because your parents were so devastated. The one time you tell your dad how sad you are he shuts you down by saying he wished he could hang himself.

Akhil Sharma: The line, and I’m proud of this line is: ‘If you were half as sad as I am you would hang yourself every day.’ The father is tired, he’s unhappy, he’s hungover and he wants to push his son away. ‘You’re sad?’ is almost like a punch. And then he moves to ‘If you were half as sad’ because he doesn’t want the punch to land. He acts from anger and then he tries to correct it.

BLOOM: Your mom wants to ‘try everything’ to cure Birju, even when some of the treatments are wacky. This makes you feel lonely and disconnected from your mom.

Akhil Sharma: I viewed my mom as crazy. He was not going to get better, this is crazy. And some of this stuff costs thousands and thousands of dollars which we didn’t have.

BLOOM: I think it’s common for parents to go overboard with treatments even when there’s no evidence that they will be helpful.

Akhil Sharma: But the [healthy] child can see it. And the [healthy] child feels alienated.

BLOOM: If your parents had been more able to accept Birju’s accident, would that have made a difference for you?

Akhil Sharma: I think the sort of person who doesn’t go overboard would be a different person than my mother. Like someone who doesn’t go overboard might also not be the person who calls me selfish for not doing things for my brother. For my mother, it was ‘I will do anything and it doesn’t matter to me what I say or do to you because in the end my words won’t kill you. I’m willing to apply all the pressure in the world to get what I want.’

BLOOM: Every member of your family had an immense need for support and understanding and never got any of it.

Akhil Sharma: I’m sure professional help would have been very useful. But really, what would have been best was seeing other people in similar situations and not feeling so alone.

BLOOM: I couldn’t get over the scene in the book when you and your mom come into the nursing home and find Birju propped on his side and tears streaming down his face because he hadn’t been turned during the night. Did that make you feel that he had more of an internal life than you thought?

Akhil Sharma: Yes. But I didn’t know what that internal life meant. Even a dog can suffer. For me I was always comparing him to before the accident. The pre-accident brother was the real brother and he was always absent. What was left was a thing.

BLOOM: Your mom comes to the conclusion that to ensure Birju’s dignity you need to care for him at home. Was that the best solution for your whole family?

Akhil Sharma: When I was there and it was occurring, it was so horrible, the nursing home, that it seemed like ‘Let’s do this. Let’s bring him home.’ But in retrospect I think we should have left him in the nursing home and let him suffer and get sick and die. The best solution would have been a painless death. Bringing him home destroyed my family and me.

BLOOM: It seems that you were never given the opportunity to process your emotions in a way that would allow you to move forward, or to at least carry them in a different way.

Akhil Sharma: We don’t really move forward, we carry it with us, but viewing it in a different way, that seems to be a valid way of thinking about it. ‘Oh, that kind of thing happens to human beings. I’m a human being so why shouldn’t it happen to me?’ There are also wonderful things that have come out of this. It’s made me very attentive and loving.

BLOOM: What advice would you give parents in terms of how to treat siblings when a child is healthy but then has a catastrophic accident?

Akhil Sharma: I think one thing to keep in mind is that the healthy child will spend a lot of time trying to protect you, the parent, and that that is a bad thing. Our very best qualities end up damaging us. I would say be engaging with your child. Talk regularly about how whatever the child feels is okay. You have a right to love the sick child and you have a right to take care of him, but part of the healthy child's right is to receive his share of love and attention and we need to honour that.

BLOOM: Do you feel there are parallels between your immigrant experience and the experience of entering the world of severe disability?

Akhil Sharma: It’s a very strong parallel. It’s like a country of the sick vs the country of the well. When we left the nursing home we felt like we were escaping but we were not really escaping because we were going out into loneliness. At least at the nursing home there were other people who had similar experiences and understood what we were doing. But now we were all alone.

BLOOM: What did you learn about yourself while writing the book?

Akhil Sharma: I think I learned most of all I have to love my parents for who they are. And the other thing is I have to take care of myself and my first loyalty needs to be to my own happiness.

BLOOM: What do you hope people who haven’t experienced the world of severe disability take from the book?

Akhil Sharma: Until someone you love has a stroke, and suddenly you’re in that world. I think most people will experience something like this. I think what they gain from any fiction is that it takes away the loneliness and sheds light as to what you need. That this is okay. That you’re going to behave badly. That you’re going to have weird thoughts. That it’s going to be okay.

Photo by Bill Miller

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.

Tips Parenting

After the fall

Sister story: Daniel makes me who I am

'No brother or sister should grow up thinking I'm the only one'

Everything you want to know about siblings

Filmmaker Kelly O'Brien on grief, siblings and honesty

'Why do you love Jacob more than us?'

'I loved my grief because that was my brother'

One moment, forever changed

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