The Word I Don’t Use Anymore

Published as an Op-ed in the Toronto Star, Saturday, February 24th, 2024:

“One Commonly Used Word We Need to Release into the Abyss of History” https://www.thestar.com/opinion/contributors/one-commonly-used-word-we-need-to-release-into-the-abyss-of-history/article_995dc748-d042-11ee-8cb5-df145c3cbe26.html

Twenty years ago, the ‘R’ word (“retard”) was used prolifically on school playgrounds, on the radio in people’s homes, and even during work meetings. With dedicated public awareness campaigns, disability advocates have been able to change the narrative, public attitude and perceptions of the ‘R’ word over the last decade, to the point that I rarely hear it spoken anymore. The connection between people with intellectual disabilities and the ‘R’ word was made explicit—you couldn’t say the word without punching down at the person. Societally, I like to think that we do have a conscience, and when the connection was made, most people didn’t want to be punching down at people with intellectual disabilities.

Fast forward to 2024. In almost every book I read, I come across the word ‘idiot’. I once used that word in the same context I still hear it frequently: I’ve done something stupid, therefore, I am an idiot. Insult based on a low IQ. The original meaning hasn’t changed. But where does that word come from and why don’t I use it anymore?

We have to go back to the early 1900s at the turn of the twentieth century. With the opening of large-scale institutions, doctors and medical professionals routinely recommended that babies with Down syndrome were removed from their families and placed into institutional guardianship. The institutionalization of people with Down syndrome went on for over a hundred years—shockingly, into the 2000s.

My family and I are still experiencing the reverberating negative effects of this separation and institutionalization of people with Down syndrome from their families, and one such way is the damning language of institutionalization that persists. In case you don’t know what went on in those institutions, suffice it to say degradation, torture, violence, and full-scale dehumanization that included drugging, hosing down, and forced sterilization of residents.

I first read extensively about this history of violence in Dr. Catherine McKercher’s book Shut Away: When Down Syndrome was a Life Sentence, which chronicles the history of institutionalization in Canada.

At the time, medical professionals had a language, a particular vernacular, to refer to people with intellectual or cognitive disabilities. This is the language of the institution: “People with IQs between 90 and 70 were considered dull or borderline, and anyone whose IQ was below that was classified feeble-minded. There were three types of feeble-minded people: morons (IQs of 50-69), imbeciles (IQs of 20-49), and idiots (IQs below 20).” (Shut Away)

If I tell you, when I was a classroom teacher 15 years ago, that these terms were still hanging around as a classification system to describe IQ for students with disabilities, these exact same terms, would you believe me?

If I told you, that my own daughter with Down syndrome’s intelligence was assessed under the guise of using the results to get her the school support she needs, and we were presented a graph with a flat line,

“Okay,” I said, “where are her results?” And the results were the flat line. A line yawning just above zero, as in, my daughter, who makes me smile and cry and laugh hysterically has zero intelligence.

Would you believe that would make her an ‘idiot’, to use the outdated terminology that has only recently—very recently—been updated.

When a term becomes an insult it becomes a weapon of dehumanization. When someone is viewed as less than human, they get treated badly. We use “idiot” as an insult, and when we do, we unwittingly call forth the language of the past. The language of institutionalization. A language that dehumanized people with Down syndrome in the past and continues to dehumanize them in the present. A language that would harm my daughter. A language that harms me, as her mother.

Once I made the connection, I couldn’t unsee it.

We can’t undo the past, but we can be mindful of the words we choose moving forward.

Some words we reclaim. Others we need to release into the abyss as relics of a sad and awful history.

 

52 Writing Prompts

In 2023, I decided to offer up one little nugget of inspiration for writers per week (at LEAST) in the form of a writing prompt. Here they are. Numbers 1 to 52 for each week of the year. I hope you find some inspiration and write on!

1. Write about a New Year’s Eve party, or a resolution gone wrong
2. Look out the closest window and write what you see
3. Open the book closest to you and use the first sentence that catches your eye as your prompt
4. Google ‘Random Word Generator’, select the ‘five words’ option, then include those five words in your piece of writing
5. What is peeking out of a hole looking at you? Write that story
6. Focusing on the senses, describe what you see/hear/smell, etc. right now
7. Tell your greatest love story or the story of the lover who broke your heart
8. What is ‘family?’
9. What do the snowflakes say to one another as they’re falling from the sky?
10. When the women start a revolution, it will be because…
11. You’ve found a pot of “gold.” What is that gold and what does it mean to you
12. The birds sing because…
13. Only fools rush in
14. Surprisingly, the chocolate egg hatched…
15. Write something you’ve never told anyone
16. Imagine your home on Mars
17. Write a list poem, beginning each sentence with, “I will try…”
18. Write your earliest memory
19. Who or what are you the mother of?
20. Create a scene by writing about a moment in time as though you are watching a movie
21. Write about the object closest to you. Tell its story
22. Write from the perspective of one of your emotions
23. The situation is that you are hanging from a cliff. But what’s the story here?
24. Write using your father’s voice or an imagined father’s voice
25. Tell the story of the one who lifts you up
26. Write the story of the sky, the river, the stones
27. Find a poem or short text in a language you don’t know and “translate” it as best you can through guess work to create something new
28. Use a colour as the central point of meaning in your story
29. Create a piece of playful writing with the sole purpose of delighting a child (after Dr. Seuss or Eric Carle)
30. Go outside on a sensory field trip. Take notes, then find a place to sit and write about your observations
31. Freewrite. Don’t stop and think, simply let the words fall down and out onto the page
32. Play the last song you listened to, and either use it as inspiration or pull a lyric to use and start writing
33. Google ‘Random Picture Generator’ and write a piece to accompany the first image that pops up
34. If you were a phase of the moon, what phase would you be?
35. All good things must end
36. Write a back-to-school memory
37. Write a letter to a specific person, who has upset you or brought you joy, to unburden those emotions
38. Write about a moment of change in your life
39. In Bird by Bird, Anne Lamott writes: “You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” Who has behaved badly?
40. You peer down into the lake, and see…
41. What are you grateful for?
42. “A life doesn’t happen in grand narratives,” says Peter Babiak. Write into the small
43. Tell a story using only dialogue
44. Write a spooky story
45. What brings you peace?
46. What keeps the flame burning?
47. Write two opposing ideas coming together, a juxtaposition
48. Write about your character’s desire
49. The five things your therapist told you
50. Never write a story with talking animals. Most publisher explicitly write on their websites: NO books with anthropomorphised animals—except maybe this once? 😉
51. On the coldest night of the year…
52. Write about receiving a gift that surprised you

SMILE

The girls’ school photos came home in their backpacks. My oldest has a closed-mouth smile, she’s wearing her navy school uniform sweatshirt and has her hair pulled back so that it appears she only has poofy bangs, nothing else. She says she likes her picture, that this year’s school photo is her favourite one, which for a preteen—or for anyone, really—is a win. Her lion eyes shine. The youngest’s portrait is a sly cheeky smile, round baby cheeks, with her chin slightly tucked. She’s feigning shy. Her pearly white teeth flash, and a turquoise flower she chose from the drawer is pinned to her mane, couched in a bed of curls that pulls her whole look together. She is a picture of innocence. And then our middle child, Elyse. Her smile is glittery, glasses mostly straight on her face, and she’s leaning back slightly, her shoulders pulled up by her ears as though bracing herself. Her beautiful smile is punctuated with holes where teeth still need to grow and oversized teeth in the places they already have. Her smile is perfect. She’s plucky and super cute, and behind that grin there’s a spark. Each of their photos brings a genuine smile to my face. They each smiled for the camera in their own way, in a way true to their individual personalities.

It’s a quiet and sunny Sunday morning, a chill in the air, and I’m walking my dog with Dan down the street in a huff, ranting freely about something I care deeply about, but that doesn’t pertain to the folks in my neighbourhood—so I’m really letting loose. I am angry, genuinely angry, and expressing my genuine anger to my husband, my confidante. The idea of expressing the anger on the walk is to process and eradicate it in a productive manner, i.e. non-violence. Well. At the peak of what was supposed to be my private diatribe, an older woman across the street happened to appear from her car, catching me off guard, and immediately picked up on my saltiness.

            “Smile!” she calls out, with an easy laugh, hands on her hips. Smile.

            Smile. I repeat the word under my breath with venom. Did she just tell me to smile?

Words cannot adequately express the rage I felt billowing out of me like a thick cloud when she goaded me on with that word, and told me how I am supposed to act. Smile. Women, especially women, are told to smile. Conceal your discontent, your ill-will, your heartache, grief, rage, sense of injustice, fear and just…smile. Well.

I threw the dog leash to Dan and stormed down the street, afraid that if I paused to look back I might say something to the woman about minding her own goddamn business that I would instantly regret. After all, she was only trying to be nice, right? WRONG. She was enforcing the rules. What rules? The rules of engagement. Society’s rules that hold women to a certain impossible standard. The rules of female decorum. She wasn’t telling me to smile for me. She was telling me to smile for him. She wasn’t listening to my true feelings like Dan was perfectly capable of doing on his own, she was telling me how to feel, to BE NICE like her. To be fake. Smile. Keep those messy feelings inside of you, tidy them away with the stupid grin on your face. Be a good girl. She was looking at me through the eyes of the patriarchal gaze, the one that seeks to control women and how they behave both publicly and privately. She was likely brought up under the male gaze and is only enforcing and preaching what she knows, what’s been stamped into her without her even noticing the pressure.

Would it ever occur to her that maybe I don’t want to smile if I feel shitty inside? That smiling would only make the feeling ten times worse. That smiling a fake smile is for the people on the outside, not the person within. That men are never told to smile, especially not when they are raging. Did it occur to her that my actions and behaviours are purely my own to dictate? That I’m pretty sure, when it comes to smiling, I was an early bloomer, and that I don’t require reminders on when a smile should occur. That being told to smile rises violent thoughts inside of me. That being told to smile makes me want to rage.

My girls know it’s okay not to smile if they don’t want to, if they don’t feel like it, if they’re having a hard day or whatever the reason may be. No reason or explanation needed. I tell my girls they don’t have to pretend to like someone either, but I do ask them to be respectful. I try to avoid asking them to “be nice” except, please, with each other, and I focus instead on “be kind,” which I would teach any child of mine. And while I may have asked them to smile for the camera in the past, I don’t anymore, or at least I’m working on it. Not because I don’t want them to be happy­—I do, I very much do want them to be happy. On their own terms. Real smile, real happiness.

By the time I rounded the bend, and Dan caught up to me, the number of swear words in my head was already diminishing. I could see the whole situation for what it was: ridiculous. I will not be told how to feel. Especially not by some stranger on the street. As the walk continued, the physicality of movement and fresh air calmed me, as I hoped it would. By mid-way home, having adequately expressed my vehement disgust and other feelings of anger at being told how to be in the world, I let out a laugh, in spite of myself. A feeling of joy erupted; it was the sound of being listened to. I felt heard, which allowed me to genuinely smile and enjoy the rest of my walk with my husband.

I didn’t even need to fake it.

Summer’s Embers: On Getting A Book Deal

Summer’s embers. What does that mean? It means summer is burning down, petering out, ending (it’s done)—but what do we know about embers?  Embers smolder, they keep burning even when the fire is mostly out. Embers glow in the night, in darkness, hot coals in relief. Embers hold on to their fire.

This summer, I had my ember moment.

For ten years, I have been writing a book in one form or another. Ten years of lighting the pages and then burning myself down. Ten years that resulted in the completion of an unpublished memoir and a second memoir, I DON’T DO DISABILITY AND OTHER LIES I’VE TOLD MYSELF, a complete new book, in the form of a collection of essays. Art feeds on art, and so fanned the flames.

In the dying days of my summer vacation in Greece I knew this: my manuscript of essays was complete. I read the book twice over before I left, having written and polished the individual essays over years. I spent two weeks prior to the trip feverishly sending out queries to desirable publishers. Their responses could take months, years even. I wasn’t sure if I could wait. But of course I could wait; I’ve been waiting for ten years.

The email came in Greece as I was sitting in a chaise lounge on the beach reading a book, the day late, the sun winding down, the waves calm and rhythmically lapping the shore. I reached for my phone, opened my emails, and saw the new message at the top, the one from the publisher. I read the first two sentences and burst into tears. I could barely contain my emotion to read through the rest of that email. What did it say? It wasn’t a book deal, no, not yet—but the editor’s words held the real promise of one. And I knew, full stop inside of my being, that I DON’T DO DISABILITY AND OTHER LIES I’VE TOLD MYSELF was going to be published. I felt this truth burn inside me.

Several months prior, I was talking to a literary journal editor about my book. I was so certain about the need for my work on disability parenting and motherhood and being a woman, and my determination to make myself and my daughter seen, that when I paused, the editor looked me in the eye and said, “It’s already done.” I didn’t have a book deal or a connection or anything tangible to know for certain that publication would happen, but I believed in the work. I believed fiercely in my work.

What that email on the beach said was I SEE YOU. Not in those words, but in how the publishing editor described my book, in how she wanted to take my project on, in how she wrote, “Can we talk?” And isn’t that what everybody wants? To be seen and heard for their ideas and who they are? To be understood?

And so in this quiet and intimate way, I am sharing with you the story of how I came to get my first book deal. I DON’T DO DISABILITY AND OTHER LIES I’VE TOLD MYSELF has found a home with Dundurn Press, a Toronto based publisher I deeply admire. Release date to come, stay tuned.

I am no longer that ember, close to burning out.

I am pure celebration; fireworks, shooting across the sky.

Poseidon’s Handmaiden

I want to tell you something about Greece. I’m here for two weeks, and this place has made an impression, taken hold. I will start with right now, this moment I’m in.

I’m sitting outside in a bamboo chair on a white linen cushion, my feet rest on the cool stone slab flooring of my white adobe style home. Bamboo shoots create a thatched roof overhead, dappled sunlight filters through. It’s 1:00 p.m., seven hours ahead of home time, which means it’s hot, too hot to be out walking around on the scorching sand that forms the dusty road that leads to the beach, only five minutes away on foot. I’m listening to “Summer” (The Carters), the happy cries of nearby children float in on the persistent breeze that blows through the open patio. My view is of Agios Prokopios, Naxos’ most famous beach, arguably one of the best beaches in the world. My hair is damp and dry salty strands fall in my field of vision as I type. A yacht and a handful of sailboats hover on the horizon. Mostly what I see is blue blue sea. Fifty shades. A scattering of umbrellas along a golden stretch of sand that reaches 1.5 km. Directly in front of me, bunches of green grapes with a blush of red attached to a sprawling vine rest on the seriated roof of my neighbour below. Two bright blue towels, hung with care on the chair behind me, flutter like beating hearts. Our door, painted a pale blue the exact colour of the sky, hangs open. If I were to invite you in, we could admire the marble countertops in the kitchen and bathroom commonly found in Greece, and feast on the rich colour of the bougainvillea bush outside my bedroom window or gaze longingly at the sea. I could explain how long it took me to understand that nothing but human waste goes in the toilet—no, not even toilet paper.

Come back outside with me for a moment, back to the Aegean Sea and the pale blue sky. Not 20 minutes ago, I had the best swim of my life. Ariel and I walked the length of the beach, about 25 minutes, to eat at a creperie in town, and then Ariel, who didn’t feel like swimming, took on the role of porter for our things while I turned in the direction of the sea.

Coarse sand balances my weight; the first step at shore’s edge, toes submerged, sends a chill up my spine, which is a relief because I’m sweating from the blazing sun. I pause momentarily, then a few more steps and I’m in up to my chest. I can see down to my toes. As I propel myself forward, an open expanse of crystal-clear water unfolds. If you are a person who loves swimming, as I am, then I don’t have to tell you there is no greater joy than the ‘good part’ of a body of water, the place best for swimming without obstacle. Here, the good part doesn’t end. No debris—seaweed or rocks or visible wildlife or otherwise. The water cool, but not cold—refreshing. No waves, save for the occasional gradual swell, a joyful rising, not unlike the feeling inside my body as I make my way down the coastline, waving to my daughter on shore who cools her legs in the gentle breaking surf. I swim and swim and swim, passing the occasional Greek or Italian, and swim some more for over a kilometer. A more gorgeous swim, I cannot imagine. The person who designed infinity pools has visited a Greek beach, perhaps this one, I am sure of it.

My eyes have grown accustomed to the salty water, and I submerge completely and stroke my arms one, two, there, four, five, six. Resurface for breath. Ariel beckons me back to shore. I depart, having completed my journey along the wide horseshoe. The sea’s fingerprints trace down the length of my body, leaving its salty residual, my hair crispy and clumped and wild. I walk to the outdoor shower to rinse off, slip on my flip flops, then clop the five minutes home.

I am Poseidon’s handmaiden now, lured into the sea’s cradle like men drawn by the sirens’ whispers. Poseidon, mighty Olympian who presides over the sea, I aim to serve. Even apart, the wind, its saline brine, carries reminders of the sea.

Likely I will make it back to Canada—likely. But if I do not, blame the gods.

Magic Tokens

I‘m writing this in Toronto, sitting at a picnic table bench, on a patio behind a modern café. Two magic tokens are tucked somewhere in my bag. Last night, I stood on a stage in front of a room full of people and read from my essay “Navel-Gazing, a Revolution & a Love Story: The Importance of the Self and Stories of the Marginalized” recently published in the Humber Literary Review where I argue for the importance of personal narratives. I point out that the dismissal of those narratives by the literary community, with insults such as “navel-gazer!”, is just another way of silencing marginalized groups. In the piece, I weave in the narrative of witnessing a female friend fall in love with another woman, and I mistakenly insert myself into their narrative. This is perhaps my way of saying just because you don’t identify or see yourself in a story doesn’t mean the story isn’t of value. Quite the opposite. The morning of the reading, I was paddling the 5 km perimeter of my cottage lake, my writing friend a distant paddle board dot. We spent two glorious days together writing, and during that time my friend received some difficult news.

The cottage lake was still. The air held its breath. And paddling in my kayak, I could see the rows upon rows of trees layering the hills, and I could see a specific cluster of towering white pines reflected in the water in front of me. That reflection, I thought, it’s real. The reflection in my computer screen less so. Real in the sense of nature; nature that is true and good and right and calming. No artifice. No tricks. Yet, infinitely more magical. I could see the benefit our surroundings were having on my friend. I could see that being together, when receiving difficult news, is better than being apart.

I believe in the magic of the natural world, but I also believe in other forms of magic, too. I believe in magical thinking. I believe in the magic of each other.

A long-time friend of mine showed up to my reading, along with her three kids—her youngest being three. When I posted the event and invited the world to attend, it somehow didn’t occur to me that I’d be reading in a bar. Bars generally being unwelcoming places for small children of which my friend has three. When she asked me if she could bring them beforehand I didn’t hesitate, “Looking forward to seeing you!” I texted back, oblivious. The alternative being that she didn’t come. My own kids wouldn’t be there. The bartender is thankfully gracious and inviting, the literary crowd friendly, the kids well-behaved, my friend a trooper.

Right before my reading, her youngest, hair combed and pulled into several adorable buns, gives me a thumbs up and an eye wink. “Is this the show?” she asks me. “Yes,” I tell her with a smile as the land acknowledgement is read. “She’s going to be so disappointed,” I whisper laugh with my friend.

But as it turns out, my friend will text me the next day that they had a great time and “even the kiddos enjoyed themselves.” As it turns out, you can will an experience to bring you joy, even when it risks not being so, just by being together. As it turns out, there can be magic in a room, on the stage, and I’m talking about the magic of other people and their willingness to love you.

I read alongside a Giller Prize-nominated writer and spent a long time later talking to another writer whose short story collection was nominated for the Danuda Gleed Award. Both prestigious literary prizes in Canada. Maybe their sparkle will rub off on me? Does literary magic work that way? I hope so. Later, on my Uber ride home back to my friend’s where I will stay the night, I tell the driver all about the evening. I will then recall that I talk quite a bit, and that my writing friend and I had laughed about this at the cottage on our drive home. The driver will encourage me, “It’s okay, writers should talk a lot.” And that, in itself, will be a sort of magic. “Yes,” I agree, “writers need to have an opinion, something to say.” I recognize the difference between talking too much and having something to say.

And perhaps the thing I have to say is that when I’m done writing this post, I will be heading to the hospital with my daughter—again. This time, planned. This time, welcome. As much as a hospital trip can ever be. Dental surgery overdue. Dental surgery that we hope will bring her and us much needed relief. And there is a magic in the doctors who are magicians of life and there is a magic in relieving my daughter’s pain, which is real, as real as my own that transpires on her behalf. Because she is a part of me.

Before the reading, at my writer friend’s gorgeously renovated high park home, she will descend the staircase in a flurry and hold two tokens up in front of me. “These are for you,” she says. I am awestruck by the gift of these good luck talismans whose dulled shine have passed many hands. How thoughtful. I look to her, grateful. “For my reading?” I say in earnest, “for good luck?”

“No,” she says, “for the subway!”

My magic tokens, I will call them, clutching them both in my hand. Talismans of good luck. And when we arrive at the subway gates, on the way to my reading, the tokens are no longer accepted and the security guard magically opens the gates and lets me pass for free with a wave of his hand.

The night is a success; the reading goes off without a hitch. The children are mesmerized. The crowd a delight.

Simply by believing they would, the magic tokens hold their promise

Tractor Dust

I’m visiting a good friend, a fellow writer, on her farm. The visit serves many purposes, but the main one is to meet her newborn daughter, and to spend time writing in the tiny house on her property where I stay. The two of us walk together inside the fenced-in enclosure of her backyard; she pushes the stroller, and I hold a glass of red wine. The fertile fields stretch out far behind us, all the way back to the distant treeline. A lone tractor crawls through the dirt, up and down the rows, laying seed or plowing, or we’re not exactly sure what. The dust makes it hard to tell what piece of farm equipment is attached to the tractor. I would have no idea anyway. I point to the tractor moving steadily through the field, kicking up a fine red cloud as it goes, and I say to my friend, “There’s a metaphor there.”

I arrive at the farm riding the electric waves of energy that come with receiving good news. I am admitted into a competitive writing program, awarded one of six spots. One of the essays from my collection-in-progress is a finalist in a Canada-wide competition out of 489 submissions. Job prospects are opening up. Requests are coming in. “Congratulations to you and your forthcoming book,” a respected literary friend writes, “it won’t be long now…” I am the tractor kicking up all kinds of dust in the field, sowing the seeds for a fruitful writing career.

But, if you have an idea of how stories go, and what happens once you reach the peak, perhaps you can predict the direction my life goes next.

Maybe I am not the tractor. Maybe I am the dirt.

A simple text arrives as I’m laughing with my friend, perhaps even holding her baby snuggled in my arms. The fine dust aroma of sweet earth that covers everything fills my nostrils. “Just spoke to Sick Kids, need to talk to you.” My husband texts, and my stomach drops.

“I have to call Dan, it’s Sick Kids.” My friend gives me a knowing look, takes the baby.

“Go.”

I’m outside, shooing the pesky black flies and mosquitos, trying to reach my husband by phone who suddenly seems so far away. He answers, but can’t hear me properly, so I make my way to the front of the house where reception is better.

If I was the one to write the narrative for my daughter’s life, some things I would rewrite, others I would edit out completely. My narrative for her wouldn’t include Down syndrome (in short, it’s the low societal expectations, the lack of supports, the prevalent ableism in our society, the associated health concerns…) If I was writing her story, I would take away her dental troubles that have caused her pain and infection, and spared her the need to be sedated, and the impending dental surgery. I certainly wouldn’t give her Crohn’s disease, as no one ever wants to be told their child must have a high tolerance for pain, because their insides are raw, let alone go through that experience. E has endured horrible pain. But like every story, at some point, the narrative shifts, turns, and for her it has indeed. She is being seen by some of Canada’s best and brightest physicians, for her G.I. issues and her teeth. Her Crohn’s is being managed by a team of medical professionals, we have a dental surgery date, and she’s on her way to healing. I would like to end the story there.

But that text.

My life is the field, peaceful and calm, and then the tractor comes and shreds the soil to bits. What seems known and certain is turned, mixed up.

E was born with a congenital heart defect and a leaky valve. Two small holes between the chambers of her heart that shouldn’t be there. She’s been followed by cardiologists for her heart since birth. Fifty percent of kids with Down syndrome need heart surgery, and so we felt lucky we’d dodged that particular bullet. Covid contributed to delaying E’s heart appointments by several years, but we weren’t overly concerned. We got caught up last week with a routine cardiologist check-up, and when the doctor looked at her echocardiogram, the message was what we wanted to hear: “The images are the same as four years ago.”

The cardiologist felt confident we could safely do nothing regarding the holes in her heart at this time. “But I will present her case at rounds and see what the whole team thinks.”

I forgot about holes in hearts, rounds, cardiologists, and let the entire pulsing mess slip from my mind.

Dan doesn’t mince words. “The team was unanimous in deciding that they want to go ahead with heart surgery.”

“What?!” When?

“In five to six months. They want to do it coming from the side so they don’t have to cut through her chest wall.”

And now that tractor is tearing along my chest, shredding my insides, throwing dirt up in my face.

Wait—Why?

The time has come for the holes to be fixed. She is big enough. The holes did not fix themselves over time, as was originally hoped. Surgery was always on the table, the question was when. Why hadn’t I realized this? Why is this news coming as such a surprise?

I am stunned.

I walk laps in the backfield with my friend, clutching my glass of red, and listen to the low rumble of the tractor in the distance. Dust flies up and I shield my eyes, but there’s no avoiding the sandy-soil that stains my shoes, settles in my mouth and coats my notebooks in grit through the tiny house windows. I squint against the sky to watch as the tractor plods closer, and what I feel most keenly is my inability to control its movement, to make it stop. I am helpless in the face of such machinery.

I turn my back to the mustard horizon, the roar of the tractor’s engine in my ears, away from the dirt clouds blood-red. My heart pounds and pumps in my head as I think about E.

And for now, that is where the story ends.

Cottage Dispatches: On Making the Dock Whole

We’ve only owned a cottage since Covid, and after replacing the original sinking dock with a brand spanking new one, we’ve had to figure out how to manage the moving parts. The first winter, we were dismayed to find a part of our dock frozen close to the shore—not where we left it. The dock comes in three pieces: the weighted ‘island’ floating dock, which is supposed to stay in place and freeze into the ice; the ramp (middle section), which gets removed for the winter; and the stationary platform permanently connected to shore.

Last spring, we simply arrived at the cottage and voila, the island was rescued and the ramp was magically set back up thanks to the help of a rescue crew who retrieved the wayward floating dock, and put the whole thing back together for us. A hired rescue crew. I naively thought the rescue was part of the initial package we paid for because of how casually the owner responded when I phoned to tell him what had happened. “No problem,” he said, “we’ll come fix that for you.” Whatever demented part of my brain believed that a company of men would drive an hour to rescue a dock, install it, and drive an hour back is now forever cured by the hundreds of dollars we paid, rightfully so, in labour. And so this year is the first time we are on our own for dock reinstallation.

The chasm between the floating dock island weighed down by 1,000 pounds that freezes into the ice through the winter and the stationary permanent platform seems woefully far, standing back at the shore. Dan and I scratch our heads. Our job is to install the ramp, which consists of a metal base with a massive 250-pound floating device that sits in place with the careful insertion of four sturdy pins. Once the metal ramp is in place, we have to lay down four sections of wooden planks on top to complete the installation. Which end to attach first? How to not crush one’s finger or fling oneself off the edge of the dock into the frigid rocky depths? How to avoid slamming hundreds of pounds of expensive equipment and damaging said equipment essential to cottage life? How to avoid going into the lake?

Well, as it turns out: brainstorming, trial and error, problem solving, meticulous planning and generosity of spirit.

One of us would have to go in the May water. That person would be Dan.

After debating dropping the 250-pound platoon attached to the metal frame of the ramp off the edge of the stationary platform, we rescinded. The idea seemed both foolish and dangerous. We would have no way to control the beast from smashing off the platform and huge boulder below. Instead, Dan’s idea, we ferried the ramp out from shore, and this worked quite well. Point, Dan and Adelle.

Dan has a better sense of how things work than I do, so I listened as he problem solved. Sometimes his lengthy pondering can rub up against my let’s just do it! attitude, but I see the benefit of carefully thinking things through here.

The wind seems to be picking up, and while we do ferry the heavy ramp out with success, our attempts to line up the unruly ramp to install the two metal pins on each side is another story. The oversized pins serve as the dock’s hinges. We go along with Dan’s proposed solution first. Attach the two pins closest to us, shore side, then attempt to manoeuvre the other two in. But the dock won’t quite move that way. No matter how much we pull and prod, we can only get three out of four mental pins in place.

The floating dock is immobilized by four 250-pound weights. Each of those weights is attached with heavy rope to an anchor accessible by unscrewing its respective wood panel. We hate messing with the ropes. That’s how we lost our floating dock the first summer, the ropes came untied in the waves and loosened all the way. This past winter, we added a heavy metal chain from floating dock to land for extra security.

Three out of four pins in place. What to do? What to do? The partially installed ramp is getting hammered with waves, the wind is matting my hair, the black flies making their presence known. We are now two hours into problem solving Dan’s way. We’ve tried installing the pins in from both sides first—same problem. “We have to loosen the ropes,” I say, “The water level’s raised; it’s got to be that.”

Dan isn’t quite sure, but it’s my turn to problem solve. He wades through the cold water, past his hips, with a drill in hand, and carefully removes the wood panel to access the rope to one of the weights. He loosens the rope all the way. There seems to be some give. He opens up another panel. Loosens the second rope. Now the dock is malleable and receptive to our manoeuvring, and Dan easily slides the posts into place to install the pins. Success!

“Hey! I was right!” I cannot resist gloating somewhat over having figured it out.

“You were. You were right, good job.”

From there, the four sections of boards fit on top, no problem. Dan didn’t even need me for that.

And while I wasn’t the one who went in the water, and I did not use the power tools, and I did not do the bulk of the lifting, and I definitely would not say I could have done the job on my own—it was my solution that achieved the desired result. Dan couldn’t have done it on his own, either. He would have figured it out eventually, but the job was done faster with two heads instead of one. So much of our life together is like this. One person taking the lead, and then the other stepping up to fill in the gaps. To make the dock whole.

Beers and cheers at the end of our finished dock? Definitely. We christened our work as the sun sank lower in the sky and kneeled down on the shadowed hillside.

Next up, time to fix the water line…

Curiosity Over Fear

What is it that your heart desires? I think about this question often. I check in with myself to see what are my goals and am I on track to reach those goals with how I’m living my life?

I am convinced that saying what we want for ourselves out loud is one of the hardest things to do because then we have to decide whether to follow up on those desires. We have to act to lead ourselves toward the life we want. To follow up on our own dreams can mean to risk disappointing the people we care about. But if we don’t follow up, we risk disappointing ourselves. To act can also mean to risk failure. We might not make it. Nobody likes to experience failure. The alternative is to do nothing, say nothing, and live the life that comes not necessarily easily, but the life that already stretches out before us. The life we have curated for ourselves, either deliberately or by default. It’s easier to continue moving forward on the set path than it is to admit the life we really want, and risk failure. But in the same breath, if we continue on the set path then aren’t we also risking growth? Self-fulfillment? A meaningful life?

After a late night spent watching an episode of The Last of Us, Dan and I jog Atlas on the nearby cinder trail. On these runs and dog walks, we talk about our family life and our children, but more often we find ourselves discussing our professional lives, conflicts, aspirations, and fears. On this particular morning, I was talking about job prospects with him. I’m a teacher and a writer, but how to hold space for both of these work identities? Which opportunity is the right one to pursue? Which way is the right way to be, I am perhaps really asking. “I know what I want,” I suddenly say to Dan. And I pronounce the words out loud. He nods his head; he already knows.

That afternoon, I’m running late taking my kid to a friend’s kid’s birthday party. We burst through the gymnasium doors hand-in-hand, her and I, my hair soaking wet and dripping onto my florescent pink sweatshirt. I squeezed in a quick shower after the run and was predictably running a few minutes behind. My daughter runs off to play with the other six-year-olds. I squeeze my friend tight, mother to the birthday girl, and she introduces me to another parent, a mom of four kids whose daughter attends ballet class with mine. The mom and I fall into easy conversation, and she tells me she’s an employment counsellor. She helps people find jobs. “I’m talking to someone about a job this week,” I tell her, and we talk about building careers after motherhood and stay at home parenting, and the sacrifices and the getting to what it is you really want. “I basically had to shut out my family life for two years to do my Masters,” I admit. Building a career does not come without sacrifice, and I’m striving for balance. I tell her how I know, from talking to hiring managers and listening to TED talks, that men often apply for jobs for which they are underqualified, and women often won’t apply at all unless they have every qualification listed. “But why not just go for it?” I offer.

“My uncle once told me,” she says, “that you should apply for jobs where you only have 50% of the qualifications listed. That way, you leave yourself room for growth.” Wow, yes. Room for growth. I find this to be true of myself. I’m rarely interested in jobs I already know how to do easily; I seek a challenge. Leave room for growth.

That day, I come across a reel posted by novelist Gwen Tuinman who says, “Creative living is any life that you live where your decisions are based more strongly on your curiosity than your fear.” As she arranges stripped-down, windswept sticks and feathers in an interesting pattern to be photographed, Gwen suggests that when we make decisions “based on curiosity rather than fear, you will be engaging with creativity; your life itself will become a work of art.” I do want to live my life guided by my curiosity, that which I do not yet know how to do, rather than by my fear. The fear of getting it wrong, of losing what I have, of not being enough. The fear of failure. And it’s a decision and commitment I have to make over and over; curiosity over fear.

What is it that my heart desires? A creative life.

Moving On

Come wintertime where we live, once the temperature drops and stays firmly in the minuses dads from the neighbourhood come together to build a skating rink in the park behind our house. Last winter, when Elyse was nine, we were skating as a family on that rink, and Elyse was ready to go home.

            “Okay,” I said casually. She wasn’t wearing skates. Elyse could leave any time she wanted, walk home, punch in the code, and voila, find her iPad or something else to do until the rest of us joined her. One of us wouldn’t be too far behind.

            One neighbour, a dad, skated up to me as Elyse walked off on her own.

            “Wow! That’s incredible,” he said. “I didn’t know she could do that.” I realized he meant walk home on her own. My daughter’s independence was a revelatory moment, and he was looking at me in awe. He didn’t know it was possible for a kid with a disability to be left out of sight, even for a short period of time and with parents in proximity. I let my position on the matter be clear, that you must know your kid.

            “We’ve been working up to this point for years,” I explained. All those trips to the bus stop and walking to school, guided, but occasionally kid-lead. Leaving them to their own devices while we sequester ourselves in our offices to catch up on work. Allowing Elyse’s older sister to be in charge while my husband and I left for short periods of time to walk the dog. Giving the girls incremental pieces of responsibility, commiserate with their maturity and responsiveness. That time to manage oneself adds up.

            Could Elyse navigate herself back to her own home safely across the park on a good day? Heck, yah!

            Families have different goals and realities. I have met many families, moms and dads, with or without kids with Down syndrome who have never (ever) left their kids with someone else, let alone solo. That is not me as a mother; that is not our family. My goal for my kids is independence. Though occasionally, I forget to let go.

On World Down Syndrome Day (March 21), of all days, Elyse and I take a meandering walk together. And when I say meandering, I mean, let’s stop at every snowbank (the snowbanks are unabating) and kick the melting snow for five minutes. Me, the dog, Elyse: our trio crawls forward. The dog pulling me ahead, while Elyse kicks the snowbanks behind. The dog sits. We wait for Elyse to catch up. I try to appreciate the gurgling sound of the sewer water coming through the grate, the way stream rivulets cascade down the concrete sidewalks, the robins doing their dance of hopping from branch to branch above me. I try to appreciate the melodies of spring. But slow is rarely my speed in the middle of the workday. Though today isn’t about me, I remind myself. Elyse is taking herself on her own walk, and I’ve simply been invited to tag along. The bright sun, welcome, makes both of us squint.

            We cross through the park behind our house, and as we near home I suggest she might like to stay out longer. I’m going inside to eat lunch.

            “Open the garage door,” Elyse commands. And so I do.

            I sneak glances through our front door window and watch my girl work on clearing a patch of icy snow away from the neighbour’s driveway. And while I feel the need to check on her incessantly, I know that in this separation we are both growing. My daughter needs her own space; to feel she is capable of holding her own.

            Calmly, I wait for the kettle to boil and make my green tea. I pick up my salad bowl, fork, and drink, and head out the front door. I find a nice warm patch on our concrete walkway and settle myself where I can see Elyse.

            She’s unimpressed with my appearance.

            “I’m done,” she says, giving me a look. She puts away the shovel and heads past me back inside.

            “Okay!” I say brightly, in the overture of the overeager, calling after her over my shoulder, as I scramble to stand back up, “Thanks for the walk!”