A sister asks 'Do you see me?'

By Cristina Breshears

Dear Mom and Dad:

Even though I was born into the chaotic aftermath of my big sister’s diagnosis, I wasn’t born understanding it. I saw how difficult things were for you: how hard you worked, how hard she worked. I saw the different people come to our house to help. I saw your tears and heard your prayers. But I couldn’t know what was wrong. I didn’t know what to expect or what I should do. It was my everyday normal, it was all I ever knew, but I didn’t know. 

I need you to help me ask the hard questions so I can better understand.

Although I could be scared of some of the things that happened in our house, I didn’t know I could come to you for comfort. Sometimes I was sad and sometimes I was angry. And sometimes I really didn’t know how I was feeling. You were so busy helping my sister and you were tired; and I saw how sad you were sometimes. I didn’t know that it would still be okay for me to come to you and tell you all that I was feeling. 

I need you to invite me to share.

Because I was the little sister, I didn’t know it was expected that I would someday surpass my big sister’s abilities in walking, in talking, and in school. It felt wrong when I could read the book to my big sister, and sometimes I thought I could see your sadness at those bittersweet milestones. I thought I reminded you of what might have been, and sometimes I felt guilty. I didn’t know it was okay and good for me to grow bigger and stronger and smarter. 

I need you to encourage me and celebrate my milestones and accomplishments.

Because my sister needed so much of your time and attention, it sometimes seemed that she was all anyone could see. I didn’t know that my efforts to stay quiet and still, to be good and not make trouble, would eventually lead to me feeling invisible sometimes. I didn’t want to take attention away from her. 

I didn’t know it was okay for me to be noticed. I need you to come find me.

Because your two hands were so often full of what needed to be done, I offered my own two small hands to help. It was a way I could be close to you. It was how I could be part of our family whose clock and calendar revolved around my sister. 

I need you to remind me that my efforts are appreciated but never expected and that your love for me is not contingent on my always being helpful.

Although standing up for my sister against bullies and discrimination was second nature to me, I didn’t know how to stand up for myself. I could hold her hand and help her hold her head up high, I could fight against injustices and lobby for change, and still feel too inconsequential to stand up for myself. 

I need you to show me we are all worth fighting for.

Although you and my sister taught me how to be compassionate and speak out for those who are marginalized, I didn’t know how to show myself that same compassion. 

I need you to help me understand that everyone deserves compassion, second chances, a hand-up, a shoulder, an ear, a hug—even me.

I was born three years after my sister’s brain damage. Her diagnosis and its effects were all I ever knew, but I didn’t know.

Love, me

Cristina lives in Portland, Oregon and encourages parents to check out the resources at The Sibling Support Project. 'All the feelings parents experience and share with their therapist, best friend, support group or spouse are also felt by their typical child. But many siblings have nowhere to go with all these feelings.' Sibshops are groups where games, new friends and discussion help siblings see that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. None of this support blames parents, Cristina says, and all of it can be life-affirming for a sibling.  

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Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.”

That early indignity fuelled Steve’s desire to shoot portraits where he’d give adults with spina bifida “a choice about how they wished to be looked at and what they wanted to show.”

The result is Front to Back, a series at Strange Beauty, this year’s Tangled Art & Disability Festival at 401 Richmond St. W. in Toronto. “The idea is that these are whole people,” Steve says. “They have a whole story to tell, just like a book, which you read from front to back.”

The back has particular meaning for people with spina bifida, because it’s the spot where surgery is often needed to push part of the spinal cord, which doesn’t grow properly in utero, back inside and close the opening. Due to nerve damage, many people with spina bifida use wheelchairs.

In addition to a traditional portrait, each subject in Steve’s exhibit has a second image of their exposed back, which in some cases includes surgical scars. “It was an opportunity for them to show off their back and for me to light and photograph it as beautiful,” Steve says. “It’s stark and out there. These people were brave. Front to Back is a path to a sense of dignity and control over what happens to us. Audiences will see people first.”

The exhibit includes moving comments from each subject on why they participated.

“This is the scariest thing I could ever do. I had to do it for myself. It was time to expose something that all my life I had found ugly, embarrassing, humiliating. That’s the gift we’ve been given with this project—the opportunity to completely expose something that all our lives we have been hiding.”

Make sure to visit both Gallery 44 and Abbozzo Gallery in 401 Richmond St. W. Steve will be giving a talk on the exhibit on April 25 from 3:30 to 4:30 p.m. The building is full of Strange Beauty exhibits and is well worth the visit. Click on these images to see them larger. And you may recognize one of the models at the exhibit!

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Note to self: Protect my mind

By Louise Kinross

A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.

The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.

Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”

Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.

The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).

Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.

This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.

I classify all of these things under the header “self-compassion.” In her new book Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?

But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.

So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?

Today I heard Gretchen Rubin, author of The Happiness Project and Better Than Before: Mastering the Habits of our Everyday Lives, give a talk at the University of Toronto’s Rotman School of Management.

Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.

Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.

So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?

Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.

One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”

This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.

In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.

For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.

I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?

Gretchen also shared other habit strategies.

For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.

Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.

When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.

Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”

Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.

If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.

I know I'm going to!

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How a family that shares a genetic condition creates a vision

By Kenneth Springer

I’ve been pondering what to write for BLOOM given that I’m a parent with a disability and have two children who have inherited the condition from me. It’s not often a parent can tell their child that they completely understand what it’s like to have their diagnosis and mean it. After all—unless you share the condition, how would you know?


When told your child “isn’t normal,” parents may react differently, whether it’s shame or fear of the unknown or guilt or even disappointment and resentment. What will others think? Does having a child with disabilities reflect back upon us parents? Whose fault is it? Will we be judged and mocked? What happens now?

In my case, I skipped the above and was faced with one question: should I have children? I already knew firsthand some of the challenges they’d face. I’d tasted the pain of being different before they would even discover what being different means. In essence, I would see myself mirrored in my children.


The arguments for having or not having children went around in my head like some complicated paradox question that has no answers. To not have children because I feared passing on the condition meant I was denying my life’s existence and concluding that my experiences weren’t meaningful or valued. That is nonsense, because I’ve been lucky and blessed in many ways: I have many happy, cherished moments and I found and live with the love of my life. Yet to pass on a condition that will fill my children’s lives with challenges might be considered unfair, particularly since I hadn’t fully accepted my own differences at that time.

In the end, I trusted that if the children had a life similar to mine, walked a similar path and found love, then it would be worth it. I convinced myself that if I shared my own experiences with my children then they could leverage my past and do more than what I have done. Perhaps it was that I believe in hope or fate. 


For the record I’m legally deaf and have an extremely rare congenital condition called Craniometaphyseal Dysplasia. CMD is a skeletal disorder that can cause mixed hearing loss, vision impairments, facial changes due to bone thickening, and other complications. In some extreme cases a shortened lifespan is expected. I wear hearing aids and rely on the little hearing they provide and lip reading to communicate.

My children, first Elleleen and two years later Huey, inherited CMD and both are hearing impaired. Their early development progressed well thanks to my wife Eileen who ensured their learning included social and educational development. This was a plus for me because although I’m a high achiever, I was a shy person when young. Being shy was often a bigger obstacle for me than having the disability itself. I didn’t want my children to face that obstacle. Shyness is a symptom of being uncomfortable with who you are. This is made worse when it becomes a habit. As parents, we need to ensure that our children are confident with themselves as individuals. Having confidence is necessary to excel in life.

At the age of four, Huey became extremely sick. Huey had pain as a result of fluid buildup in his head. The doctors questioned how he had such a high tolerance for pain and why he was even alive. Immediate surgery was required with no guarantee that he would survive. If he did, the surgery might leave him with a brain injury.

But doing nothing meant death.

Miraculously, Huey survived the surgery but lost his eyesight in the process: he became totally blind in one eye and legally blind in the other. Memories of that time still feel raw and painful, especially the realization that Huey would be hearing impaired and legally blind. Given the massive lifestyle changes required to cope with blindness, my wife quit her job to care for our son.

For the first time in my life I was fearful and worried for Huey’s future. What would his future employment prospects be like? Would he be able to earn a living and be independent? All of the hopes that I had for him were dashed.

Naturally, my wife took this setback very hard. This made her more determined to ensure that the children had a strong foundation that would enable them to do what they wished in life. She encouraged them to stand up for what they believed in and to participate in activities and enjoy life. 


Gradually, Huey put the family back on track with the return of his bubbly personality. Yes, life had changed, but the process of facing challenges and finding a way through them hadn’t. Huey learned Braille and how to adapt in a world he couldn’t see. As a family, we learned with Huey and supported each other.

One of the disadvantages of having a disability is that you’re constantly underestimated. People expect the worst from you and conclude, for the most part, that you are hopeless, have no value and won’t amount to much. I’ve always hated this attitude. As a result, I never wanted to quell my children’s ideas or feedback.

Rather than stomping out weak ideas or rejecting others based on a difference of opinion, I found it better to be open-minded. I encouraged my children to explain their way of thinking and to debate ideas fairly. As a result, I found I was always learning from them. When I don’t understand their logic or reasoning, I try to understand why. I think this was pivotal in our children’s development. 



For example, Huey was interested in learning to use the computer because he wanted to be like his older sister. Unfortunately, because he can’t see he struggled with web browsing accessibility.

The web is very visual in nature. Sighted people generally develop skills to skim over information of little value and quickly extract what is relevant. This improves with the familiarity of the web page layout.

We all have different ideas as to what works best.

A blind person prefers information structured in a way that enables them to find it quickly. The aesthetics offer no value and may make things worse if they can't find the button they need on that page. People with autism may prefer to have information presented in a simple way so that they aren’t overwhelmed with a flood of information and colour.

One day when Huey was nine he got frustrated and listed everything that made it hard for him to use the Internet. Then he suggested how it could be improved. He wanted to be able to control, categorize, filter and select just the information he wants. In reality, Huey was suggesting an idea that I considered to be impossible: the ability to display websites in a way that match a user’s preferences for how information is displayed and interacted with. This would make web browsing easier, smarter and even fun, with you in control.

I’m a computer engineer, but Huey was explaining the Internet to me in a completely new way that was eye-opening. It seemed impossible, but I couldn’t dismiss his ideas. I was compelled to learn more. I researched within the community and found that accessibility issues were prevalent and Huey wasn’t alone: many people were struggling with this.

It soon became evident that to overcome the problems we needed to be more visionary than the current accessibility standards.

So we started a project called Hueyify. Hueyify is a software that allows you to control the way web content is displayed and the way you interact with it.

We’ve been working on the Hueyify project for more than two years now and every day we tackle the challenges and work through the stages of moving towards the goal of helping those who need it. Hueyify will be free for anyone who is legally blind or autistic worldwide.

Being a key part of this project has helped my children feel valued. They’ve each contributed ideas that have built their self-worth. From my experience, having self-value counteracts the negatives from disabilities.

In raising my children I’ve found that learning is a two-way street. I learn and develop along with my children.

I’m always sharing experiences with my children, whether it’s the way I was confronted with a new challenge or how someone reacted to my condition.

Often my children will suggest what I could have done differently, or tell me something isn’t worth worrying about and that I need to see the funny side of things.

My children’s acceptance of CMD taught me to find my own peace within myself. My children are truly my teachers.

Kenneth Springer is a computer engineer who lives with his family in Victoria, Australia.

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Who, and what, is perfect?

By Louise Kinross

Icelandic photographer Sigga Ella created a series of portraits of children and adults with Down syndrome to question whether a future without genetic diversity is desirable. Her exhibit First and foremost I am has been shown across Iceland and is moving to the Warsaw Festival of Art Photography in Poland next month. Please click on the photo above to see it in full. We interviewed Sigga.

BLOOM: What did you hope to convey in your portraits? 

Sigga Ella: To see the beauty of mankind we should celebrate the diversity. The reason I did this project was because of [a] radio interview I heard. They were discussing the ethical questions we now face—that we can choose who gets to live and who doesn’t, as the aim with prenatal diagnosis is to detect birth defects such as Down syndrome and more. Where are we headed? Will people choose not to keep an embryo if they know it has Down syndrome? I had an aunt with Down syndrome, Aunt Begga. It is very difficult for me to think about the elimination of Down syndrome and her at the same time.

The title of the project comes from an article about these ethical questions written by Halldóra Jónsdóttir, a 30-year-old woman with Down syndrome. She is a student, works at a library, is an amateur actor, musician and much more. She is one of the people featured in the project, as is her article.

BLOOM: The facial expressions and body language are each so unique. How were you able to capture the essence of each one?

Sigga Ella: I spent some time with each person so I could show, as much as possible, who they are. Each of the photoshoots was unique, lasting from one to three hours. Some of the models I met before the shoot, but some I met for the first time at the studio. I wanted each photograph to show us a person with his or her own special characteristics. I wanted to bring out their uniqueness as individual human beings and the fact that by no means are these people all the same, even though they share the same syndrome. For most of the sessions I was alone with the model, so we talked, but the subjects discussed were as diverse as the models themselves. They are all different ages and at different places in their lives. My goal was to show diverse personalities.

BLOOM: How did you find your models? 

Sigga Ella: I contacted the Icelandic Down Syndrome Association and through them and some friends (and friends of friends—Iceland is a small country), I managed to find 21 people of every age (nine months to 60 years) [with an even] gender ratio. Everyone I asked agreed to participate and working with them was really enjoyable and rewarding.

BLOOM: What was the reason for photographing them with the same wallpaper background?

Sigga Ella: I was looking for simplicity and I wanted the project to be as one whole but make the subjects stand out. I wanted to [emphasize] that all flowers can grow and flourish together.

BLOOM: Can you describe your experience having an aunt with Down syndrome?

Sigga Ella: My aunt Bergfríður Jóhannsdóttir was 29 years old when she died of a heart defect. I was 12 years old when she died. She was the youngest of 12 siblings. For most of her life she lived with my paternal grandparents and my aunt Herdís Jóhannsdóttir. When my grandparents died, only three months apart…she moved to an assisted living home. She spent every other weekend and summer vacations with Herdís who was like a second mother to her. Herdís always reminisces about Begga's sense of humour. They used their summer vacations to travel the country and visit their siblings. Begga loved spending time with her relatives. Begga enjoyed travelling as well as working with her hands and she did a lot of cross stitching. We were good friends and I have a lot of good memories with her. We did puzzles together and could watch a video about the legendary twins Jón Oddur and Jón Bjarni endlessly. She was the youngest of 12 siblings and I was the youngest of seven so I guess we related to one another in that way.

BLOOM: How do you feel about testing for Down syndrome and the high rate of termination?

Sigga Ella: I am not against prenatal genetic testing for abnormalities but I think we need to stop and think [about] what’s next. In the years 2007 to 2012 there were 38 fetuses with a heightened risk of Down syndrome in Iceland and in every case the pregnancy was terminated. I think it’s necessary to open the discussion and educate people more about Down syndrome. It’s not a disease or a flaw. Parents of children with Down syndrome, just like parents of healthy children, wouldn’t exchange them for anything in the world.

BLOOM: Why is diversity valuable, including differences in ability?

Sigga Ella: We are all unique, that is valuable, and we can all learn from each other.

BLOOM: Where is the exhibit on display?

Sigga Ella: It is currently open at the Reykjavik Museum of Photography. The next exhibition is at the Warsaw Festival of Art Photography in Poland from May 15 to June 15.

BLOOM: Why did you choose to call it “First and foremost I am?”

Sigga Ella: The title of the project comes from an article I found on the Internet which Halldóra Jónsdóttir, a woman with Down syndrome, wrote. I contacted her and asked if she wanted to be part of the program. She said yes and she's one of the people featured in the project, as well as her article:

“Hello. My name is Halldóra. I read this article in the newspaper the other day that caught my attention and at the same time made me angry and sad. There was this woman who wrote something about how people with Down syndrome should not exist. Therefore I would like to share my opinion. I have Down syndrome but FIRST AND FOREMOST I AM Halldóra. I do a million things that other people do. My life is meaningful and good because I choose to be positive and see the good things in life. I go to work, attend school and have hobbies. I enjoy spending time with my friends and family and I like being around people.

“In my world there are all kinds of people, both old and young, disabled and non-disabled. It has taught me a lot and I can see that many of us have some kind of difficulty that we are battling, both physically and mentally. That’s just how life is—it’s not more perfect than that. And it doesn’t matter if you are young or old, rich or poor.

“So I thought: Who is perfect? Who can say that we who have Down syndrome are worth less that anyone else? We are all different and would it be so great if we were all alike?

“My opinion is that it is much more fun that we aren’t all alike, because we can learn so much from people who are different from ourselves. I like learning from others and you are free to learn from me. I choose to enjoy the life I was given, to be happy with what I have and make the best of what I’ve got. It’s not a bad life, or what do you think? This is my opinion.”

BLOOM: What reactions have you had to the series?

Sigga Ella: First and foremost has had amazing reactions. For that I am really grateful. It has been featured in Icelandic newspapers, magazines and on radio. I have put up this exhibition six times in different parts of Iceland. It has also been featured in international media like CNN, Huffington Post and Fstoppers, [a photography news website]. I’ve had amazing feedback from people all over the world. That means a lot to me.

Photo below by Daniel/Visir. 

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Disability is part of my 'normal' life

By Jessica Geboers

When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.

My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it's normal for parents to worry about their children’s future, regardless of their physical or mental ability.

I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.

In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.

It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.

I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.

It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.

Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.

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Letting in the light

This piece made me tear up, reminding me of what it feels like to give birth to a healthy child while caring for your firstborn with a random genetic condition. It's hard to make room for "normal" parenting with number two, emotionally and practically, but so worth it. Thanks Jennifer! Louise  

By Jennifer Philp Zakic

It takes most people a few minutes of conversation before they realize my giant stroller is actually holding two children. My older son, Branko (above left), is always in the front, and he’s the one people tend to stare at. I’m perfectly okay with that, because I would also probably stare at a four-year-old attached to an oxygen tank.

If I’m talking to a stranger, I like to choose a perfect moment to reveal my 11-month-old daughter (right), informing them that there is, in fact, a baby girl tucked away in there. Ta-da! I love pretending that it’s really no big deal, like getting them out of the house safely was just so easy and natural and why would it be any different for me?

Of course, it’s not easy. It’s never easy, but I’ve come to redefine my definition of “easy” over the past year.

When I first discovered I was pregnant with my second child, Nina, life was slightly less complicated. We were aware that Branko had a genetic bone condition, but it hadn't quite manifested itself yet. He had only broken one bone so far. He hadn’t been intubated yet. He hadn’t yet been prescribed supplemental oxygen. We hadn't even accepted “special needs” into our lexicon of medical terms.

At first, I was happy. The pregnancy had a normalizing effect on me. The mammoth amount of energy I used to invest in worrying about Branko—his acute health, his long-term happiness, whether he would eat dinner that night—was quickly diverted into thinking about the new baby. Would she be as funny as he was? Would I be blessed this time around with a sleepy, snuggly, chubby newborn?

As the pregnancy progressed, Branko’s health slowly declined, culminating with a cardiac arrest when I was about five months pregnant.

During the hardest moments, I would forget about Nina. I was so consumed with all the negative thoughts—ones that every parent who has ever spent time in a children’s ICU has conjured. These dark thoughts would quickly fade away for a moment or two whenever I touched my belly. My daughter. I liked that someone was with me at all times.

I worried about the effect this would have on her. I was sleeping very little, eating whenever I remembered, and I would jump about seven feet whenever my phone rang. Once we were out of the ICU, Branko insisted on being held exclusively in one position: his bum on my baby bump, his head on my shoulder. Any attempt to change this position was met with crying, labored breathing, alarms going off, and nurses rushing into the room.

I remember a nurse who casually asked, “He’s not sitting on your baby, is he?” I lied to her, of course, the same way that I would lie to my husband about how much I had eaten that day.

I lied because I had started feeling guilty. I wanted to be pregnant, but I also wanted everything to be perfect, or at least, moderately okay. I was hardly able to take care of myself, and now, I was in the process of squishing a brand new baby's head. I really hoped she was okay, but at that point, I would have done anything to make my sick son feel even the slightest bit better.

In addition to my guilt, there was the pernicious elephant in the room, its presence magnified every time a doctor glanced at my stomach. A handful of people asked if I had genetic testing, and if so, did I get the amnio? Most asked out of concern, a handful asked with the faintest flicker of discernment, an expression that would come and go so quickly I could almost ignore it. I would usually rise to the occasion and offer the explanation that his mutation was “de novo” or spontaneous. As in, very random and not inherited, thank you very much. Can I offer any other non-relevant information on the health of my children?

When I told Branko's pediatrician I was pregnant, I was expecting the same sort of response. She instead provided something unexpected: Lightning doesn't strike twice.

I tossed and turned over this statement for days.

Lightning doesn't strike twice.

I wanted to take comfort in this, and I tried my best, but I couldn’t get over the fact that lightning, or in our case, a random genetic mutation, could absolutely strike twice. In fact, it could strike over 2 trillion times, one for each cell in the human body. Was I an irresponsible, misguided fool for simply believing that I could be one of those other parents, the ones who have babies with arms and legs that move properly, who have lungs that work, who have voices that aren't diminished by their lack of breath? At this point, the word luck wasn’t in our vocabulary any more. It was hard to stay positive.

I wanted so badly for everything to stand still, especially when it became time to think about the future. It was hard to dig out Branko’s old newborn clothing, so I simply chose not to do it. I was like a teenager hiding an assignment in the bottom of my knapsack to temporarily avoid it. I couldn’t even imagine having to leave Branko for a few hours to—you know—actually give birth to this baby.

With the days leading up to Branko’s birth, I tried all the tricks to make him arrive sooner. With Nina, I did all those things, but in reverse. I tried to keep her in there, safe and sound, as long as I possibly could, meticulously avoiding long walks, spicy food, and pineapple. My midwife was getting frustrated. She kept hilariously telling me to “relax,” even offering to induce any time at my request. But that was unnecessary. The labour was short and sweet and to the point, and we arrived back at the house just as Branko was finishing breakfast. He never knew we were gone.

Nina is now almost a year old, and she does not have a squished brain. She makes Branko—and everyone—absolutely and purely happy. I can't believe I was afraid to meet her.

Watching her over this past year has been bittersweet. She’s so incredibly normal; it’s both overwhelming and unfamiliar to me. I try to avoid keeping a mental list of some of the things she can do that Branko still can’t: pull her own socks off, hold a sippy cup with one hand, move from sitting to lying without heavy breathing or floppiness. It’s really hard not to compare, but I’m also thankful that I’m now the type of parent who wants to crack open the champagne whenever my baby throws toys across the room.

I don't believe that Branko came into our world for a reason. I don't believe that we were chosen for him. We aren’t “special,” and for the most part, this disease he has ravaging his body is no gift. It just happened, the way some people get sick and some people just don't. But I believe Nina gave us exactly what we needed during a very sad time. She cries along with him when he gets a needle; she makes him smile when no one else can. I don't say much about Nina, and I don't often brag about her. I like to think of her as that bit of perpetual light in our darkness. I like to think that she somehow provided that warm, comfy seat for Branko on purpose. I think that part was meant to be. 

Please follow Jennifer on her blog Branko Has Funny Bones.

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