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dropping the 250-pound platoon attached to the metal frame of the ramp off the edge of the stationary platform, we rescinded.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.

Give Me Change Worth Celebrating

An abridged version of this piece originally appeared in the Opinion section of The Toronto Star, October 27th, 2021.

The last week of October is Canadian Down Syndrome Week. To the average Canadian, that might not mean very much, and likely for most, the cause for celebration has not registered at all. But what about for the average family who has a child with Down syndrome? What does Canadian Down Syndrome week mean to families like mine?

Yesterday, our kids were supposed to wear red to school and last night there was an email from the teacher reminding them to wear purple today.

“Why are we supposed to wear purple?” My youngest daughter asked, confused. I take a brief moment in our busy morning to look up the teacher’s email and explain the significance to my girls. If nothing else, that brief moment is the reason we wear special colours, choose days and weeks to commemorate. By coming together, we are highlighting a need to recognize and raise issues that otherwise, in the hubris of the everyday, go largely unnoticed except by those who inhabit those experiences. By flagging days and weeks and months we are finding a way to hold space, to question and hopefully, better understand.

And I want space held for my daughter. I want others to know that Down syndrome is characterized by a tripling of the twenty-first chromosome in every cell of her body. That this genetic difference has always existed across race and place and throughout history and that people with Down syndrome have unique personalities. That my daughter needs support in many facets of her life. That her life holds value. That she is loved. That she is funny and smart and challenging. That she speaks two languages and if she spoke none, our love wouldn’t change. Of course I want you to know all of these things. But knowing, on its own, doesn’t really seem to change anything; to make the world a more welcoming place for every person in it. Knowing is only step one on the continuum of care.

I knew about people with Down syndrome before my daughter was born and that didn’t stop the ache in my heart when she arrived. And part of that ache was about my own ableism; holding onto learned beliefs, rampant in our society, that one type of body or cognition or way of being in the world is better and ‘right’ over other ways of being. And part of that ache was knowing what we would be up against.

And what is my daughter and our family up against? The list is long. Wait times for essential services, such as speech therapy, that trail into years, not days or months; services that are essential to her growth, development, and wellbeing. And when services are made available, they are scarce and so families are forced to pay out of pocket to supplement, and if they cannot, they go without. Daycare settings not equipped to support children with Down syndrome who often need one-on-one support. Any form of childcare, extracurricular activity or camp that would provide the same quality of life that every child deserves are simply not accessible or have limited spaces. If a child needs support, they either aren’t welcome or they can come as long as they can get by on their own, which often my daughter can’t, not really. Or she can, but her big sister ends up being her support person. My ten-year-old daughter does not deserve to be her little sister’s support person.

Most public schools across Ontario lack adequate support for children with Down syndrome. The supports are either not in place by the beginning of the year, and so students miss out on their schooling, or the resources available are limited and divided between other students who also need full-time support. The assumption is that kids with Down syndrome are provided with the services they need to be successful and the reality, in Ontario, is that they are not.

None of this is the fault of the therapists, or teachers or daycare workers. These issues are systemic.

Ableism is also a systemic issue. Why do we hold onto beliefs that some people’s lives are worth celebrating—truly celebrating—while others’ aren’t? The notion that ‘an abled body is better’ gets my daughter at every turn. The assumption is that because she has Down syndrome, she is incapable. I have to do the work of educating every new person who enters her life and it’s exhausting. Elyse first learned her letters at three years old. Thanks to a sesame street app on her Ipad, she took an interest in identifying her letters (make elmo sing!) before even her older sister did. In kindergarten, she learned her letters in French, and I gently, then more directly, encouraged the educators in her life to move beyond the alphabet. At age 7, when a speech therapist celebrated that my daughter had learned her letters that session, you may understand why I did not reciprocate her enthusiasm. She now reads simple sentences and at age nine, you can certainly understand why I would insist any letter work be removed from her education plan. It’s tiring for families to have to constantly educate others and insist that our children are capable and worthy. I am so over it.

Wearing coloured t-shirts is a good first step. Certainly, I applaud the determination of schools and educators in their advocacy and awareness efforts. Education and awareness is an incredibly important first step in celebrating the lives of Canadians with Down syndrome. I would encourage everyone to visit the Canadian Down Syndrome Society’s website; to read books written by disabled individuals such as Count Us In by Jason Kingsley and Mitchell Levitz who write about growing up with Down syndrome. I will forever champion books and t-shirts, but—it’s not enough. Not nearly enough to truly celebrate the lives of individuals with Down syndrome. It’s only the first step. Simply draping a t-shirt over these issues doesn’t fix the problems.

To truly celebrate, we need to provide the essential services these individuals and their families need to succeed. When children with Down syndrome aren’t being turned away from daycares because centres don’t have the supports; when kids aren’t being left out at school because of ableist attitudes or lack of funding; when adults with Down syndrome have opportunities for meaningful employment and independence because businesses have an obligation to do so; when families no longer have to carry the emotional and financial toll, that will be worth celebrating.

 

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.