Article Category Archives: Creative Nonfiction

You Call This A Life?

This entry was posted on by Renate Lindeman.

I have three children. April is my oldest daughter. A delicate figure, feet barely touching the floor as she moves, she resembles Tinker Bell. But April is deceivingly tough — like nails. When she rides her horse she transforms into an amazone, galloping through the fields wild and untamed. Her younger sister, Hazel, is a “real” princess. She prefers to stand in front of a mirror admiring her pink tutu and her flexibility. Hazel thinks she is great. Hazel thinks everyone else is great, too, and she expresses her fondness by greeting all who cross her path, generously handing out more than a few kisses. April and Hazel are Olav’s big sisters. They love to tease Olav then smother him with love and affection. April and Hazel have Down syndrome. Olav does not.

While no one will deny that people with Down syndrome are individuals, just like people without Down syndrome, when it comes to prenatal screening and diagnosis, they suddenly belong to a group. Parents who have just received news that their unborn baby has DS are handed collective statistics and predictions as “neutral” information. Suddenly, it seems crucial that these parents are made aware of the average life expectancy for their child. They’re also informed of the likelihood their child will develop a health condition, such as allergies or leukaemia, the chances their child will learn to read or swim or ride a bicycle, and the typical age their child will eat with a knife and fork. Simple dreams like “Will my daughter be handy like dad or adventurous like mom?” and “Will my son be best friends with his two-year-old brother?” are replaced with a much bigger question: “Down syndrome: Would you call this a life?”

I declined testing when expecting April and enjoyed a carefree pregnancy. Hazel was diagnosed with DS prenatally and although I worried I’d learned that this information, these statistics, are not neutral at all. Who can really predict if a child will develop a disease or, for that matter, get into an accident? Who knows if an infant will grow to be a bully, or a victim of one? Maybe the child will abuse drugs or spend too many hours staring at a screen.

Scientists believe that within a few years the entire genome of an unborn baby will be analyzed from a drop of blood from a pregnant women. Expectations of parenting perfect offspring will grow and so will the illusion that these perfect genes will reduce suffering. Yet life is full of opportunities to mess things up and full of more opportunities to make things right again. You can eat a bucket-full of ice cream or go for a jog. You can park at a handicapped space or help an elderly woman cross the street. You can expect perfection from others or love them for who they are. Health and happiness, I’ve learned, are not set in our genes.

If you asked April and Hazel what life is like (with Down syndrome), they would probably give you their undivided attention for a few moments. Hazel would likely start telling you about her friends in school, her little brother Olav, and her favourite foods and activities. The story might get increasingly hard to follow and probably end in laughter and a high five. April will gaze at you solemnly from behind her glasses. Searching her brain for the proper words to express her feelings, she will be pensive for a while as in meditation. You will start to notice her delicate features and the freckles on her cheeks and tiny nose. Then, as she wraps her small arms around your shoulders, a smile will radiate like a ray of sunshine from behind that earnest look.

My daughter’s lives are not defined by the presence of an extra chromosome. While the road to fluent speech, flawless writing, and coordinated bicycling is often filled with obstacles larger than Mount Everest, planting our flag on top makes it all the more worthwhile. Of course, like any kid, mine can drive a mother insane. Hazel can be stubborn as a mule and April can take an hour to get dressed. But they also have the ability to simply accept their flaws and those of others without judgment and to fully enjoy life. In my opinion, that makes my daughters perfect.

Parents often say nothing could have prepared them for their role as a mom or dad. Perhaps this holds an even greater truth for parents of children with special needs. But to describe parenting a child with DS through brochures and statistics is like trying to understand the weather by watching the Weather Channel. If you really want to feel the weather, you go outside where the wind is tugging your hair, the rain lashes your face, melting snow creeps inside your collar, and the sun warms your skin and bones.

If you really want to make sense of a prenatal diagnosis it might be a good idea to go outside and meet a family living with Down syndrome. Join them in daily activities, talk with them. You might find that limitless joy, hardship, worry, sleeplessness, celebration, and love cannot be pinned down by medical facts. You might indeed call this a life.

Mother & Child by Eva Butowska

Star’s Echo

This entry was posted on by Kristin Procter.

I am a competitive person. In school, I succeeded not for the sense of mastery, but to get a higher grade. When I joined sports it was for team camradery, but mostly to win. Developing internal motivation is an ongoing struggle. I live my life out loud, listening for the echo. When I became a mother, I imagined my children as little echoes of me. My first, a boy, talked circles around me. Then, almost three years later, I birthed a daughter who I assumed would join our rowdy chorus. She found her place in our family, though perhaps not as I had anticipated.

Three years passed. Addi’s brother started kindergarten. She asked when she, too, could attend school and my stomach clenched. It was the feeling of your baby reaching for the stars before you are ready for her to fly. It was the feeling of being on a visa that doesn’t allow you to work, and wondering what you would do with the time. What really rattled me, though, was something I had not yet found words to express. Instead, the cells of my body, this body that once held her body, thrummed.

Something was different about Addi.

Our family is geek chic. We appreciate that people are unique, quirky even. Addi’s brother adores freshwater fishing and crochet, hobbies he picked up at five years old. Addi’s dad is a semi-conductor researcher who drives a Volkswagen Beetle. I celebrate Pi day and wear lopsided hand-knit hats. In many ways, Addi is the most “normal” one. She races her trike through puddles, collects caterpillars, screams, climbs, and twirls, like adventure ignited. She also struggles with anxiety. There are times she becomes so overwhelmed by the intensity of the world that she implodes, crumbles, inconsolable, to the earth.

In these moments, I struggle to connect, to walk into her fire. All I want to do is scream, settle down – it is no big deal – but the more I talk, the further she contracts.

When her requests for school became persistent, I signed her up for a preschool screening. She spoke excitedly on the walk to school, counting buses in a row. Then, when we entered the testing room, she closed her mouth and didn’t say another word. Not her name. Not her age. Not her ABCs. Not her colours, all of which she knew. As we left the testing room, I joked I had a little mute girl, tossing the term casually around.

How long are you going to stay quiet? I joked.

She didn’t respond until we re-crossed the threshold of the testing room door.

About five minutes, she replied.

Once school started, life caved in on Addi. Every day was a struggle. At home, she would get up, determined to go to school. On the drive to school, her volume would drop, but would pick up again along the sidewalk, counting buses. When it came time to hug good-bye, she held on, tears forming, but she would always walk into class. I assumed like most kids, once inside, she would be fine. Except she wasn’t. Terror held Addi’s limbs and breath. She didn’t speak. She didn’t eat. She barely moved from one square of carpet, silent heaving sobs her only interaction – and no one told me for weeks.

I try to forgive myself for the missed clues and the mistakes, though it is tempting to search for what I did to “cause” my child to be different. Was it the time I left her overnight with her grandparents whom she had just met? Or when we moved her critically developing ears from her familiar Australian accent, to Boston’s strangely absent Rs? Questions multiply, but there are never really answers – just the sound of doubt and guilt.

Recently, Addi and I watched her baby videos. In one video, Addi gurgled and babbled as her chubby thighs cycled the air. In the video, I moved closer until, surprised, baby Addi spotted me. Her mouth closed. Her squeals stopped. Silence. Sitting on the couch with four-year-old Addi and watching baby Addi stop speaking, shock shifted my bones. Did it really start this far back?

Sometimes, I imagine myself fully absolved. Solution found. Genetics. Not my fault, at least not in a way I can easily change. I relax. But in the morning, when Addi screams unintelligibly over what seems to be a misunderstanding about which fruit she wanted or which cup is hers, it doesn’t really matter how we got to this breakfast table. All that matters is that we are here. Here, in a space where Addi sometimes talks, where panic throttles her from the inside without warning, and where I struggle to close my mouth and listen.

So, what is it like to be four years old living with selective mutism? If you asked Addi, she likely wouldn’t answer. Direct questions are hard. New people are hard. Any perceived judgement is excruciating. Even when I ask her, she is likely to say, I am not a sometimes talker.

When pressed to recall that day at school, or two minutes earlier at the shops, she purses her lips and walks away. It isn’t easy to get an answer from Addi.

But sometimes, when Addi feels strong and I feel brave, we find ourselves in this space where she talks and I listen. It is a beautiful liquid place, quiet. Here, she explains her turmoil: I don’t know why all the other kids can do it but I can’t. I try my hardest, and I still can’t.

She tells me panic is a dizzy chest, a wobbly belly and jelly knees. She presses my hand into her sternum, to experience the pounding rhythm of her terrified heart. My own heart shutters, but I stay with her. We float.

Two Gals Dancing by Carole Glasser Langille

What is it like mothering a child with selective mutism? I only know what it is like to mother Addi. It is both the hardest thing I have done and my biggest accomplishment. I was reminded of this recently when Addi enrolled in art class. I provided information about selective mutism to the instructor, and at the first class I reminded the teacher that Addi is a sometimes-talker. Addi smiled, relieved her teacher knew.

Then one day her regular teacher was absent. I peeled her screaming body from the corner of the art room, embarrassed and disappointed, but not surprised. I pulled her into my arms and perched on a stool. We breathed. Addi grabbed a crayon and started drawing. I moved her to her own stool. She continued to draw. I left to check on her brother. She drew. From the waiting room I heard the class preparing to play a game. The teacher encouraged the kids to call out which animal she was drawing. I cringed. Then, the child, who half an hour earlier was a heap of flesh on the floor – my Addi – yelled, Bunny! Then, she took her place at the front of the room. It was her turn to draw.

Other parents collected their children and commented on the beautiful colours and complexities of the elephants they had drawn. I had tears in my eyes as I hugged Addi and told her how proud I was. She said, I don’t know why. I did perfectly well at art class right from the start.

I couldn’t argue. In her way, she did.

Addi has her own way of living out loud. It is quieter at times, but no less vibrant. I recently read that stars are born when clouds of dust and gas collapse into themselves, and I see that in Addi. Her strength is not trying to beat anxiety. Addi’s strength lies in the way she inhabits anxiety, the way she folds into herself, and emerges illuminated. Now, I try not to waste time waiting for her sonic boom; instead I find a quiet corner of her universe where I wish upon her star.

Thomas and May

This entry was posted on by Debra Reynolds Banting.

I was lost for a moment, phone in hand. Who is this woman? A mother? Oh, a mother of May’s classmate. Why are we talking about her home renovations? A … birthday … party…. May is invited to a birthday party!

May, whose inaugural school year was spent in a classroom for students with “special needs,” had just a month before entered a general kindergarten class. No social invitations as yet, though.

“We’re doing over our kitchen,” the woman explained. “Our son, Thomas, who’s turning five, asked the contractor if he could throw in a wheelchair ramp so that May could come to his party.”

Tears welling up now. Thomas’s mother wouldn’t, couldn’t, have known how breath-taking this was for me to hear. After sucking in some of the air that had fled, I attempted to switch my tone from stunned to appreciative.

“Not a problem,” I almost gushed. “We have a fold-up stroller. I can carry May up the stairs.” Then softening, “By the way, that’s just about the sweetest thing … I can’t wait to meet this boy.”

There are a few things that I remember about Thomas’s party — I met some of the mothers from the school neighbourhood, which was not our own. And I remember a classmate, a little boy named Leonard, crying in the foyer because he didn’t want to stay without his mother.

Later that year, May and her friend Josh, who has Down syndrome, were at the centre of the social whirl, at least in part due to the tone set by their knowing teacher. Thomas came to some parties at our house, but he and May weren’t particularly close, less so as time passed. A few years on, as the Mother Who Always Stayed (at parties and everywhere else), I had had the opportunity not only to eat more cake than a person should, but also to observe May’s peers as they grew into eight- and nine-year-olds.

Grade Three was the year that nine-year-old May excelled at spelling tests. In early spring, she attended a joint birthday party for Leonard and Josh and their friends. It was at a gym at a local university, with a few students to direct the fun. When organizing for a game of floor hockey, the birthday boys were asked to captain two teams. Leonard, having overcome some of his kindergarten shyness, stepped up. Josh, a reticent one himself, declined the role of captain and by some means Thomas came to take his place.

Now, one thing I had noted about Tom was his keen interest in sports and his competitive nature, a jock in the making I was sure. When another class mother, a flight nurse, spoke of her job in medical transport, I heard Thomas try to outdo her: “My mother jumps out of planes to save people.”

So when Thomas was lucky enough to have first pick for the hockey game, I had every expectation that he would choose one of his larger, more athletic buddies. But he picked May … my little May, who, while fiercely competitive herself, could barely hold the stick, never mind hit anything with it. I turned away so as not to embarrass anyone with my tears.

Many of May’s typically developing friends fell away on the long march to high school, with its clubs and teams and career paths. Thomas became a hockey player. That’s about all I knew of him. I’d like to say that he asked May to the prom. She didn’t go. Or that he took her for a ride in his first car, lifting her gently into the passenger seat. She never dated. Still, I believe that Thomas is a different man because May was in his kindergarten class, because his teachers and parents encouraged and normalized his enjoyment of a unique friend.

Thomas, May, and the other students lived inclusion until it became second nature. Team work and creative problem-solving were abundant when these kids were in charge. They expressed and acknowledged the special in themselves and each other. May’s classmates attained a level of comfort and empathy that those who were driven or bussed from the neighbourhood to less inclusive private schools or French immersion programs missed out on. I have ached for those young people in their awkwardness as I have for the times that May was left out. And now, when the impulse arises to apologize for expecting more, I think of Thomas and I know what’s been won.

Kathleen by Carol Morrison

Auf Wiedersehen, Pluto

This entry was posted on by Su Rogers.

Bursting in through the front door of our apartment, I see my mother and father in the kitchen straight down the hall. My mother is crying hard. I have never seen her cry. She wears her brown and white polka-dotted dress. The dots look like they are adrift like on a shivering, dark sea, and I start to feel dizzy. Her Tonied hair is pretty and wavy, but she is bent double over the cupboard, sobbing. Her tears gush like in the picture I saw of Alice in Wonderland. I am afraid my Mom will drown. I stand in shock. Then my own tears start to flow.

One of my father’s handkerchiefs, which my mother washes, irons and folds for his pocket every day, is wet and soggy and wound around her long fingers. The sun hits her in the small of her back as it bends through the window over the kitchen sink. My mother is like a broken thing. It is getting hot in this small space. I am frightened.

My mother squeaks out that there has been a fire in Canada—at the storage place in Camp Borden where our belongings went to live in cardboard boxes while we travelled the North Atlantic through November storms to come to rest in a small, walled German town. This fire ate everything.

I begin to think about my toys and realize that Pluto, my glove puppet, is gone. I cry harder now as it dawns on me that he is burned to a crisp, like bacon. We are all crying now, except my father who grinds his teeth and folds his arms across his chest. I can hear his teeth rolling over each other like boulders pushed on a beach by a storm. His cheeks bulge from the effort. I wish he had on his red serge uniform with the high, tight collar and medals pinned on it, because he always looks so calm and handsome in it, just like a prince. He never grinds his teeth when he has his dress uniform on.

Safekeeping (detail) by Heather Lawson.
Photo courtesy of the Harvest Gallery in Wolfville, NS.

Mom said the security guard in the storage place had been leaning back in his chair having a cigarette after lunch when he just fell asleep. The guard burned up, taking our past, all ashes, with him. Coughing a little myself, I imagine big flames licking my eyelids. Then I think of the hot gases finding Pluto and setting him on fire. That tiny loose thread at the bottom of his hem must have flashed first with a sizzle. I see his hard, wooden head, his velvety, long ears and his shiny coat scorching in that blaze. My fingers itch to fit into Pluto’s paws again so I can make him talk to me.

My mother does not cry over the new swivel TV chair, the TV, or the rabbit-ear antennae that are now all burned and twisted. We don’t even have a TV in Germany. The army didn’t give us one. Mom doesn’t remember Pluto was in the fire. She can’t hear me tell her about Pluto. She talks between sobs about her parents and losing her mother’s china, and her own wartime uniforms. She sees the last few strands of her old life disappear. Mom talks about losing the photographs of her mother and father and how she would never see their faces again because they are dead and now the photographs are gone too. She touches her own cheek where she said her mother had a long, jagged scar from flying glass when the window came in during the Halifax Explosion. Her mother had been looking at the harbour and everyone was running. She couldn’t run because she was pregnant with Mom.

The tears keep coming. I can tell that Mom’s guts are in a knot. She leans over and then she talks about her father who died from lead poisoning from working on the letterpresses at the Herald newspaper. How he was everything to her. This makes her cry more.

Why doesn’t anyone else care that Pluto is missing? I think about when I first got him. He was a present from Jenny Genge, my best friend, and arrived when I was sick at home with the Asian flu. Jenny’s hair was the colour of Pluto’s, yellow. When the last crate was packed for storage, I cried. Pluto could not come with me. He was not allowed to go on our family adventure. Dad might have let me take him but he was already gone with the other fathers on a big boat rocking on the waves.

Dad told me he was going back to Germany where he fought in a war. He told me he had been hit by a bullet that went through his chest right there, right where that thick white scar is under his arm. It passed right through like it was on the Autobahn. It went so fast he didn’t know he had been shot at first—until he keeled over. He said he was going back because of the Cold War. He was going back, too, to visit graves of his infantry comrades in Italy.

When it was our turn to go to Germany, my mother, brother and sister and I had to take a train, and then a boat. My brother had a nose bleed on the train. Like always. My sister and I threw up all the way across the ocean. My mother lay in her bed with a wet cloth on her head most of the time, groaning. When we did leave our cabin we were tossed from side to side, and we had to hold onto a railing to walk.

Pluto would have liked it here in Deutschland. Now he is dead, just gone up in smoke. If my mother had let me take him he would be alive today, living on Wienerschnitzel with a squeeze of lemon. He could have played marbles with me in the playground behind our building, helping me sink the glass eyes and crystals into smooth holes I made in the dirt with my hands. I always go home with dirt under my nails.

Pluto could have gone on the swings with me. Maybe he too would have gotten some splinters from the wooden seats. We would have gone so high our feet would have touch the rooftops and blue skies over our apartment building, and Pluto would have screamed with a little thrill sound only I could hear. I think about how my bride doll was with Pluto in the fire box, but I don’t care about her. Her hair was all shiny and plastic. I don’t know who she was going to marry. Her bride clothes were glued to her.

Mom is crying still.

Pluto is nothing but ashes. I feel alone, but I can’t take my eyes off of my mother’s face. It is all twisted up and her lips are dry. She doesn’t even look at me. Her eyes are all swollen. Her nose is red. She talks only about her mother’s dishes and how hard it was to get these few things from her stepmother, who took everything that belonged to her family. She says how she only owned one threadbare uniform, which burned to cinders too. She says how she lost her dresses that my grandmother had so beautifully made for her. And then “ohmygod” and repeats how she lost the photos.

My mother holds the metal edge of the counter top so hard her hands turn white at the knuckles. The sound I hear coming out of her throat is low and moaning—and then she just lets loose with a big howl. I am scared. For a moment I forget about Pluto, and I think about my mother’s scrunched up face and all her tears. Auf Wiedersehen, Pluto.

Stars Did

This entry was posted on by Mo Duffy Cobb.

Starfish, copperwork by Marie Jardine.
Photo courtesy of the Harvest Gallery, Wolfville, Nova Scotia.

Faith has always had a place in our family, even when it has waited at the backdoor….

We lay in the back of our Westfalia camping van. My daugher, Leila, was six years old and had jumped down from the pop-top bunk to snuggle between Mitch and me. I’m sure my eyes were closed.

“Mommy, how did God make the world?” She rolled toward me and yawned, pushing her blonde hair out of her eyes. Was Mitch going to say something? Was I? Seven a.m. seemed too early for a godless world.

“Did he just… create it?” Leila asked again.

“Honey, well…” I began, fumbling toward an unknown destination.

In the fog that had enveloped our camper and all of Maine’s Acadia National Park, I saw my whole Catholic life drift by: The dark, dreary church that filled with music and candles at Christmas. The Gregorian chant my dad loved. Our family pilgrimages to St. Anne de Beaupré, to Lourdes in France. The catechism classes I attended to grade nine. Then my teenage investigation and raging disapproval of the Church’s methods of indoctrination. My turns away from a Christ who would cast me off for disobeying his rules, another man to tell me what to do.

I often think back to a childhood friend whose parents never brought her to church. She compared her family with mine and thought her parents were lazy, just bad Christians. When we pushed towards twelve and thirteen years old, my friend thought she was going to hell. She continually asked to come to our church youth group meetings, the retreats, and the pro-life rallies my parents made me attend. I’m not sure where my friend’s religious flare ignited, but I wonder if our viewing of The Exorcist had something to do with it—or maybe her Ouija board and our séances. Perhaps she needed an extra layer of protection.

I felt bad for my friend; she was confused and scared. She asked me to recite prayers so she could learn them. She scoured my house for icons, crucifixes, and rosaries to borrow. I told her she could have them. She could have them all. That constructed spiritualism was already cramping my teenage style. I told her not to be taken in by the glam, but she wasn’t the scrutinizing type.

I didn’t want this to happen to Leila, that she grew plagued by constant fear of the unknown, by a god she neither knew nor understood. She might blame us, her parents, for not teaching her the religious basics. Yes, offering her the gift of openness to all spiritual texts, hand in hand with evolution, seemed the only dignified thing to do.

But I was already talking.

“God didn’t make the world, Leila, but that’s an important story.” There was no need to diminish that particular narrative. “The universe was full of heat, it expanded, and a huge star exploded. It blew the whole galaxy into millions of pieces. It was called The Big Bang.”

I tried to make the story compelling and dramatic. She wasn’t buying it. We’d told her over and over our beliefs in evolution, but they just didn’t stick. The universe didn’t stick. Nature didn’t stick. God stuck.

“The Big Bang, “ she repeated. “That’s not what Nanny says.”

“People have their own stories, Leila, and the Bible is the story that Nanny likes best.” I rubbed the sleep from my eyes. I was losing.

I pulled the covers up and looked over at my daughter. She stretched her arms towards the roof, the sky, and wiggled her fingers. “So God didn’t invent the world?” she asked. “Stars did?

In my late teens, I moved to Montreal for university and began kinships with Muslims, Buddhists and Hindus; I casually left Catholicism behind. My parents knew this exploration would bring me the most peace in life, and they were happy to hear about my travels to meditation centres and to mountains and oceans, places where my heart was home. They had passed along their family values, kindness and equality and structure. They had done what all parents do—their best.

Sun peeked through the fog of Bar Harbor forest. Water bubbled over rocks in streams. Momma birds brought baby birds to safety. The universe seemed in perfect balance, and to me, that was enough. As an adult, I’ve come to expect unanswered questions. I light a blue candle in the morning when I begin to write because I read somewhere that blue candles make better writers. I hold the healing powers of rose quartz and yellow citrine in high regard and wear these stones on necklaces and in rings when I need energy. I’ve become familiar with the flexibility of quantum mechanics, a science that bends information depending on stances and light. I accept that; I even like it.

But maybe kids need more. Faith.

There’s a Baptist gospel church in Florida that my parents now attend when they fly south for the winter. Mitch, Leila and I visit each year and sing and clap our way to the end of a brilliant service. We shake hands with the pastor and thank him for welcoming his northern birds. Afterwards, there are hats and shined shoes and donuts served under tents in the small parking lot. Leila loves it. My parents don’t mind that it’s not a Catholic service. And Mitch and I are, for that moment at least, at peace. Our universe is expanding.