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.

 

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.

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…

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!”

Snapshot of Grief

When your child is sick, nothing else matters. Literally, it’s as though the world stops.
I don’t mean sick with a cold, though that presents its own challenges. I mean sick and you don’t know what’s wrong. Sick and you think you’ve cured the problem, but then you haven’t. Sick and they drop further and further away from school and family life. Sick and you don’t know how to help them. Sick without a way to comfort or make them feel better. Sick and the appointments keep piling up. Sick and the medical procedures mount in severity and invasiveness. Sick and you’re not sure when they’ll get better—IF they’ll get better. Even for sick children, there are no promises.
Dealing with a sick child feels akin to dealing with grief.

THE FIVE STAGES OF GRIEF:
(from psychiatrist Elizabeth Kubler-Ross’s book On Death and Dying)

DENIAL:
October: Blood in her stool. Oh my god, it’s cancer. No, no, the walk-in doctor calms and soothes. Anal bleeds are common enough in children and can be caused by anal fissures, small tears in the rectum. Put some Anusol on it. Nothing more than a little dry skin.
December: The sharp acrid smell of urine on the carpet, mixed with the unmistakeable stench of shit. The sewer aroma hits my nose as I rise up the staircase before I see the pile on the floor. She ran to the toilet but didn’t make it—couldn’t make it—in time.

BARGAINING:
January: We will change her diet. A “special” diet is more work for our busy family, puts a strain on the enjoyment and spontaneity of life—no more going out on a whim until we have lived this diet change and know where and what is safe. Family dinners to grandparents are altered, one more load we exert on our support network. But the changes will be worth it, because then she will feel better. And, there, everything will be fixed. We will give up gluten, but in exchange, she will feel better. That was the deal. That was the fucking deal.

ANGER:
Why this kid? Why the kid with Down syndrome? I don’t want it to be someone else’s kid, or one of my other children, but why THIS kid? Hasn’t she been through enough?
Why our family?
Why me?

DEPRESSION:
February: I feel less anger and more sadness, a tingling in my chest, pinpricks behind my eyes. We’ve been here before, ten years ago. This procedure and that surgery and once she recovers, you can take her home. With the help of our village, we took her home. I don’t want to have to send her back. Watching your child be put under involves an alchemy of insanity and sightless hope. Time exists outside of ticking clocks on the wall. Nothing else matters but that they should wake back up.

A line from a prayer my grandma used to help me recite at bedtime when I was a little girl: And if I die, before I wake…

ACCEPTANCE: I’m not there yet.

What Did She Say?

two kids wrapped in blue towels wearing sunglasses sitting in lounger chairs

WHAT did she say?
I will preface these stories only by saying that Penelope is a six-year-old with doe eyes and a mop of curls.

The other day, I notice Penelope’s on her way to the basement.
“What are you doing?” I ask her, friendly-like.
“You don’t need to know that.” She answers in a way that stuns me into silence—then laughter.

Atlas is our male dog. Out of the blue, Penelope asks me, “When is Atlas going to have babies?”

We’re in a period of deep learning.

While I was attending Kelly Thompson’s book launch in Toronto for her newest memoir, STILL I CANNOT SAVE YOU, Dan was home with our three girls, running the show, as one does. I want to take a second to acknowledge the dads who do the work of childrearing in the same way mothers are expected to do the work, which is to say, without expecting any praise or accolades. Of course, gratitude is always welcome and appreciated by either sex. All to say, Dan does the work because the work needs doing. And, as a mother manager, I’m learning (unlearning) that whatever that work looks like, however the job gets done, when I’m away, that’s not my concern. I do not need to micromanage my children’s father’s parenting, and I certainly would not appreciate him micromanaging mine. Who has time for that? We consult with one another, but whoever is in charge ultimately takes responsibility.
After Kelly’s event, I got in my car feeling satisfied from a fun, busy evening with friends and writers. I checked my phone.
This is the text Dan sent me. A candid exchange between him and Penelope:
Penelope: can I go for a walk by myself?
Dan: Sure. Have fun.
Penelope: I’ll walk to bus stop and back.
Dan: Sounds good. Don’t cross any streets.
She leaves and returns shortly.
Dan: That was quick!
Penelope: I turned the corner from our street and it was creepy. It scared the fuck out of me, so I came home.

Now, there’s a lot to unpack here, but I think the first most important piece of information to point out is that Penelope knows that the “F-word” is a “bad” word. But she does not know that the F-word is “Fuck”. Now she does.
Dan had a nice, civil, follow-up conversation with her about language and what’s appropriate for a grade one to say.
Penelope suggested she heard the word from kids at school—perhaps.
We’ll never know.

The Deliciousness of Bodies

Dan, my husband, is away. Forget about what this sometimes does to me: mentally, physically, emotionally. What I’d rather discuss is the impact on my daughter Elyse who has Down syndrome. I should preface this by saying Dan has no choice as to whether he travels for work or not. It comes with the territory.

In Dan’s absence, Elyse’s behaviour changes. The change is remarkable to the extent that her school has requested I notify them of any dad departures in advance, so that they may adjust her day accordingly. They incorporate more rest, smoother transitions. In short, they demand less of her. She is a creature of habit, and her daddy is an integral part of her day. She relies of him for obvious help, but also subtle cues, subtle cues I’m not necessarily even aware of, which Elyse makes clear to me in our interactions.

Elyse sees us as a family of balloons, a colourful bunch, and with her dad away, it’s as though she is cut adrift, left wandering up into the sky of beyond. I reach for her string, try to grasp it, bring her back down, but she’s too high, too far gone.

But I have my tricks, by necessity. What mother doesn’t?

She is floating high high up in the sky, away from me, and I remember how to get her back down. I lay flat on the ground in the living room, cheek planted on the plush carpet looking right in the direction of our new windows, clear and shiny. In my field of vision, I see the bright glare of sunshine through the glass, clouds passing by, the bare winter branches reaching high, and our tropical plant, Urma, with her lush leaves in the foreground.

I lay there, ribs compressed, prone, and attract the living creatures.

Elyse is the first to take the bait. When words fail with her, I’ve learned to communicate with my body. This laying flat is an offering, you see.

I hear the pounding of her footfall approaching. Elyse straddles my torso and peeks her little face down into my field of vision. Her hands work across my back like a kneading cat.

The dog arrives next. His big wet tongue trails across my face, and Elyse defends me, bats him away. My youngest lounges across the backs of my calves. The laundry will have to wait. I am the one being draped with bodies.

I stay there, motionless, pressed into the earth, without talking, and Elyse claims me. I surrender myself to her completely. She lowers her little body completely on top of mine, squeezes me tight, and flashes her shark teeth close to my face with another big cheeky grin. She lets out a laugh. She is delighted to have me in her grasp.

Got you.

Back to School Cool

What it’s like to be a parent to a child with Down syndrome on the first day of school after most of summer camp didn’t go particularly well and you were regularly summoned from your work—pulled, wrenched from your work— when the phone rings because there is some problem with your child, “problem child”, that needs dealing with.

Most commonly: “Can you come and pick her up?”:

It’s the first day of school, and I’m sitting at my eldest daughter’s desk, out of my element, because I’m keeping our new kitten Marvel company. She’s a marvel. The phone rings unexpectedly and I jump from my chair—I leap from my chair. Where is it? Where is it? Where’s my phone! How dare my phone escape my peripheral vision, my direct vision. My hand. The watch on my wrist is the thing vibrating telling me I have a call. I have a call! Where is the physical device, the talking piece. I need it. Now. NO CALLER ID is flashing at me. I know what that means! That means it’s got to be the school, it’s got to be the school. Elyse. She needs me. They need me. The school. Where’s the phone? Where is it? I need to answer this call. I have to. I need it now.

I run, go barreling, stompy-footed down the stairs, hand bracing against banister railing and then pause. Hold breath. Listen. Hear the vibration of phone shimming on wood table. Eyes dart across the room. The kitchen table. There it is! Must reach phone. Arms outstretched legs moving too slowly too slow this cumbersome body. GOT IT! Hold breath. Answer the damn phone.

            “Hello?” Calm, courteous, polite. Calm. CALM.

            “Hi Adelle, it’s the dentist’s office calling, are you able to switch your dentist appointment to this week instead of next week, we have an opening.” Breath slides out like a deflating balloon, but my heart swells.

            Yes, if that’s all that this is, then no problem. No problem at all. I’ll take any appointment you’ve got. Just, keep my kid, and make sure she’s happy and learning, will you?

Two Truths

women crouching down on dog to pet her puppy

“Two things can be true at once,” a friend said to me recently. Her words, meant in consolation, have helped me immensely.

I’m reeling, sobbing, sharp intakes of breath. But mostly, it isn’t like this. My tears arrive silently, unannounced, from the corners of my mind, floating to the surface like the answer on a magic eight ball. Are we really rehoming our dog, our family pet? Is this really happening? Yes.

Happy memories with Louie arrive, and then even when I don’t want them to, the tears shortly follow. He was a good dog. The best dog. So what happened? How did this happen?

My friend told me that two things can be true at once. That you can love something and have to let it go. That you can try your hardest, get the best trainers, spend all your free time, time you don’t have and more; that things can get better and then worse and then much better and that ultimately, it still will not matter. That you can hold sadness in your heart for the dog you lost, while holding hope, promise and love for the new puppy you’re preparing to bring home. Because you love dogs. You’ve always loved dogs. You’ve never not wanted a dog since the time you were a baby. “Duke”, a dog’s name—not yours—was your first word. But what you don’t want, what you can’t have, can’t keep, is a dog that bites your family. That was it. That was the line crossed. What you can’t have is a dog that endangers your children. Once that happened there was no going back. No matter how much you love him, he loves you; no matter how much of the love there is and always will be between you.

And even though time, that great healer, will pass, every morning you will wake up and hold two thoughts in your head: I can’t wait to get our new puppy and I wonder what Louie is doing? And the sadness and the joy intermingle, tap dance over my heart and I wrestle with this bit of truth. That I am holding the joy and the sadness in my two hands. That I can’t have one without the other. That my love is as infinite as my sorrow. That I will continue to hold space for both.

 

“Who’s excited to get our new puppy?” I ask. Everyone is excited, but it is Penelope who says, “I am the most MOST excited!” And then, as though recalling from somewhere deep in her little soul, she says, “I gave lots of love to Louie, and I can definitely do it again.”

 

*Louie update: Louie is currently being trained and cared for by his breeder where he is making good progress.