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.

 

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.

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?

What Could Be: On Poetry

Something happened to me this summer. My writing is morphing into something new, taking a different shape, being swayed and pulled in new directions. Perhaps it is my emotions that are demanding the reshaping, orchestrating this coup? Whatever it is that’s happening, I’ve been writing poetry, and learning about poetry, and meeting poets, and reading poetry, too. Poetry is gathered language that evokes a strong sense of beauty and feeling. This is one definition of poetry. One that I’ve been thinking about a lot. I’ve been encountering and striving to put myself in the way of other definitions and interpretations. I’m keeping an ear out for them. Feel free to send your definitions, found or otherwise, my way.

“Poetry is not a luxury,” Audre Lorde wrote in an essay by the same name, “it is a vital necessity of our existence.” Maybe poetry is helping me to feel real, to embody the fullness of myself. And maybe poetry has been my way of surviving through a time of change, uncertainty, and upheaval.

Poetry is the song of everyday life humming. It’s my dog pawing against my husband’s closed office door for food; the soft warmth of his muzzle tucked into my hand, as I feed him. It’s a place and space to find the words to set down against experience. A re-creation of moments, a cyanotype image.

In Bahar Orang’s meditation on beauty, Where Things Touch, there is this:
“As Helene Cixous puts it: I, too, overflow; my desires have invented new desires, my body knows unheard-of songs. Time and again I, too, have felt so full of luminous torrents that I could burst—”

Maybe poetry is the expression of those luminous torrents? Of my fragile heart bursting shards of light onto the page? I say my heart, because it is my heart doing the work, the heavy lifting.

Here’s a poem that sort of fell out of me when I let my guard down. I was meaning to be doing something else. Does poetry form in the annals of our periphery?

I’m thinking of patches of dappled light I saw on the floor of Algonquin forest. How does the light even get there, in those hard-to-reach places, beneath the canopy of all those leaves? But it does. Light finds a way.

I don’t want to explain my need for this poem. So I won’t.

What Could Be
Dedicated to my daughter’s extraordinary former educational assistants: Mme. Claudia, Mme. Joanne and Mme. Catherine (“Keegan”). Also, Mme. Suzanne. Vous êtes le soleil qui brille dans le ciel. You embody everything that could be.

The best ones
Never have to tell you
How good they are

That they know
Your child
Because they’ve worked
With one hundred of them before

The best ones
Talk
To the child
And look at
Whomever
They’re speaking to
Address the
human whole
Without
Needing to
Point out
The parts
that are broken,
Perceived
broken.

The best ones
Check in
After you’re gone
To see your shine
Light up the room
Engage you
In conversation
Conjure
Your magic
Evoke colours of the rainbow
That exist beyond the visible
spectrum of light

The best ones
Call you by your name

Hold a place for you in their hearts
Find pockets of space
Where you fit in
Foster the friends
Your hand will hold

Remember
You like it best
When the music is playing
And they let it play
As you instrument yourself
A fine tune

They sway to your every scale
Past when
The final note
Rings
Because they believe in seeing beyond
What isn’t necessarily there
to the naked eye
But what
could be.

How to get Your Kid With Down Syndrome in Trouble

Okay, I should tell you right now, there isn’t going to be anything serious about this post. When I say “get in trouble”, I don’t mean like, tell her to climb on a portable roof and then call the police, I mean it in the sense of discipline. Dear reader, I think you knew that. If you’re looking for useful tips on disciplining your child—please—turn away. If anything, what I have to say is pure entertainment. Humour. Funny, yes, because parenting Elyse is a constant reminder not to take myself so seriously.

I’ve shared this story before, but it bears repeating here.

I’m playing outside with the girls. Dan isn’t home and Elyse heads inside. She promptly locks the sliding glass door behind her effectively locking us all out. She then helps herself to treats. She flaunts the fact of the treats in my face, as I kindly mouth, “Elyse, please open the door.” She wiggles her hips side to side, sliding chocolates into her mouth, one right after the other. OPEN THE DOOR.

In the aftermath, a good reprimanding is in order.

I’m trying to be serious, to be taken seriously. Locking your mom out of the house is dangerous. “Elyse, that was very dangerous. You can’t do that again, okay? Don’t ever lock mommy out. What do you SAY to mom, Elyse?”

Elyse, eyes downcast, chin low, tries to embody the seriousness I’m calling for, but then, in her defiant way, she mutters under her breath: “Sorry…poopy.”

Sorry, poopy. Sorry, poopy? How do you not die laughing right there? How are you supposed to parent that?

Another time, this time with Dan. It’s dinnertime, and Elyse decides to knock her sister’s empty cup onto the floor. After some prolonged negotiating, Dan grows weary and attempts to be firm with her. Her outright refusal to pick up the cup and his refusal to give in is a comedy sketch in itself. Dan feels like this is a battle he can’t lose. He uses his strongest fatherly tone.

“You’re going to pick that up!”

“Fine,” Elyse says in a flat monotone voice. She initiates the slightest movement.

“Elyse. Let’s go, pick up the pace,” Dan requests. But already, he’s softening. And at this, Elyse swivels in her seat on the bench, inching her body at a devastatingly slow pace, exaggerating each small gesture like a mime under water, punctuated with a look of utter indifference. He tries hard to keep a straight face. And fails.

In the midst of moving, we’ve been making forays to ice cream parlours and friendly backyards while showings take place in our home. On one such outing, Elyse decides she’ll stay in the car eating her pizza while the rest of us pile out to grab a cone. The next thing I know, Elyse has abandoned the vehicle and is standing next to me across the parking lot. No big deal, I could see her the whole time, but the next day she does it again, crosses a road without looking. This time all kids are to wait in the vehicle parked across the street while Dan and I have a quick meeting with our real estate agent. Out of nowhere, Elyse is suddenly on the road disrupting the meeting. She comes flying at us, running across the street, arms flailing, full of vigour, yelling, “I’m BAAAAACK!!!” Dan and I look at each other, trying to keep our composure as our agent natters on.

“I guess,” I say to Dan later, “we didn’t explicitly tell her to stay in the car and not run across the road.” I guess we can’t really get her in trouble for doing it then, can we?

But maybe the whole point of this post is just to say that sometimes there’s a better way. Than anger. Than yelling at our children. Than outrage and frustration. Than parenting until we’re blue in the face. Than trying to make our kids act in a way that we consider to be just right. We have to keep them safe. Of course, we have to keep them safe. Conversations need to happen.

But maybe, sometimes, our kids know something we don’t.

Dear New Parent Whose Baby is Hospitalized

You are not alone. And if you’re reading this, you’ve come to a good place.

Two wonderful moms, Jess and Kayla, have created a space, Beyond the Beads, for families to share their hospital experiences and to come together and support one another. They asked me to share my family’s story by answering a few questions posted in a word document on their site. I used the questions as a guide, but the existence of the form itself prompted memories of my hospital experience.

Forms. In the hospital, there were plenty of them. After my twenty-week ultrasound, which showed a soft-marker, or indication, for Down syndrome, I sat in the genetics clinic at McMaster Children’s Hospital filling out the same form for the second time that day with my family’s medical history. With my husband Dan by my side, we waited for the results of my ultrasound and bloodwork. The high-risk obstetrician arrived, test results in hand: positive.

Then, in the NICU, after Elyse was born, I was handed a from with a checkbox and the word disabled. I wondered: aren’t all newborns disabled and dependent on their mothers?

When a fetus is diagnosed with a chromosomal difference doctors consult their own forms and checklists. In the case of Down syndrome, the two most common health concerns involve the heart and the gastro-intestinal system.

Elyse was born with duodenal atresia—an atresia meaning a blockage in the duodenum—a section of the small intestine. She would die without surgery, no food able to pass through. I’m thankful we knew about the need for immediate surgery beforehand because I’m a mom who likes to prepare. I read what I could, but ultimately, nothing can fully prepare you for your child’s hospital experience. It’s just something you have to get through.

Our eldest daughter Ariel was 18 months old when Elyse was born. The forms to fill out were minimal with her birth; she was a textbook baby, mine a textbook pregnancy. The contrast between my first and second pregnancy experiences was one of the most difficult aspects of our hospital stay. I had to push away surreal thoughts of this shouldn’t be happening and embrace the idea of this is happening and you will get through it.

Elyse underwent surgery to fix the atresia at one day old. Dan says waiting for the surgery to be done, and knowing our baby was okay was one of the hardest parts for him, as well as the days of her being in critical condition that followed.

We made the best of our hospital experience, and I encourage other parents in our situation to do the same thing. Take mini breaks. We were fortunate to have family and friends babysit Ariel so Dan and I could visit the hospital together in the evenings when he was off work. After singing to Elyse in the NICU and reading her stories, we’d head down to the café on the main floor and grab a hot chocolate. I cherished those brief reprieves. And somehow, miraculously, we’d find ourselves laughing between tears, enjoying each other’s company, and I’d think who else that has a newborn and a toddler at home gets to do this? We made the best of a difficult situation as a coping mechanism for survival. In many ways, I found myself completely cut off from the outside world. What mattered for those four and a half weeks was to check off the doctor’s boxes: get through surgery, intubation and heavy sedation, ditch the NG tube, build the strength for one breastfeed, then two, until Elyse could successfully breastfeed eight times in a day and we could bring our baby home.

Another difficult stage was right before the finish line. Dan recalls when Elyse was moved from the NICU to the “ICU lite” as he called it, also known as the PICU (Paediatric Intensive Care Unit).

“I was like, okay, well can’t she just go home then?” he said. From my end, one day I showed up in the morning for my daily vigilance over my baby and she was gone. The team moved her to the PICU overnight without telling me. I quelled panic, and in the end, the news was good, our baby was getting stronger, closer to home, but the scenario brings up an important point. Good communication. We were greatly comforted by the physicians’ plans. We felt like our baby’s life was in good hands because the team at Mac took the time to explain what was going on (notwithstanding the occasional blip or two). As the parent, make sure you’re included as part of the team. You establish this relationship by showing interest, asking questions, and being involved as much as possible with your child’s care.

Before we were in the hospital, I talked to another mom whose son had been through heart surgery.

“During that time,” she said, “you will be a mess.”

It’s going to be tough. Things are going to be hard.

“But now,” she said, “those days feel far behind us. I almost forget they ever happened, and one day—I know it’s hard to image now—but it will feel that way for you too.”

Elyse is eight years old now and, in our case, these words ring true. Life goes on. Acknowledge that what you are going through is hard. And know that it will pass.

Our hospital experience was part of our journey as parents, and we’re forever grateful to the professionals who saved our daughter’s life, and in a way, saved ours too.

Elyse has been back to the hospital for follow-up appointments, a few minor surgeries, but we continue to approach her life as we did those days in the hospital: with joy and one step at a time. And with love. When we sang to Elyse or read her stories in the NICU, the nurses in the room would lean in because they could feel our love and they wanted to be a part of it. I believe, above all, that love healed our daughter. Please, if your baby isn’t doing well, or they take a turn for the worst, know that isn’t your fault either and not because you don’t love them enough. If you’re even thinking like that then I know you do carry an abundance of love inside of you. Sadly, sometimes no amount of love can make a sick baby better and I see those parents; I’m sending you all the care and love in the world.

Our love for each other and our baby got us through our time in the hospital and there is no form for that, just a whole lot of feeling the way with your heart.