Category: Parenting

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.

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 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?

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.

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.

On Monday after the holidays, Dan looks after our three girls while I sit upstairs in my bedroom office writing a class assignment due in the next few days. He’s being incredibly flexible and generous with his work time, and I am grateful for that, beyond grateful. We had many intense discussions all through the summer, when the kids were home for six months straight, and then the announcement came that the kids would be home at least an extra week after the winter holidays, which felt, to me, like a punch in the stomach. How would the kids feel about staying home again? How would I get all my work done I had to do that week before my residency the second week of January? Most importantly, who would be in charge of the kids and the kids’ schooling that week?

Later that Monday afternoon, I received a call from the girls’ school. The totality of words exchanged is a blur and unimportant, all that matters is the final outcome: Elyse can come back to school for the week. I almost cried.

I’m going to speak for myself here, but maybe sometimes in the parent disability community, we are too afraid of acknowledging that we need help because we’re afraid that somehow makes our kids look bad. Like, all those times we advocated for how capable they are and how they can do so many things (and they CAN), but there are also so many things they need help with, and my god, parents, we can’t do it on our own. I really can’t.

When the school called me and said they would take our daughter, I wanted to weep with relief. I almost did. Why? It’s complicated. She needs the help. She needs one-on-one. We don’t have the time. We don’t want to teach her one-on-one; it causes conflict and inter-personal drama between members of our family. There are only two of us, my husband and I, and we have three kids and a needy puppy. We both have full-time work. Having to homeschool our kids puts a strain on my relationship with my husband and our marriage. I’ve written about it in a few essays you will one day get to read (in my next book!), but I will write about it here too because it needs to be known. Having the kids home for six months put a huge strain on our marriage. We were pushed to our personal limits. And part of that is our kids’ ages. We have a four-year-old, she was three at the time. And part of that is, yes, I fully admit it, having a child with Down syndrome. I’m ready to fully admit it. In the case of my family, and of course I don’t speak for other families on this one, given my daughter’s personality, and by virtue of being our middle child, and because she has Down syndrome and her brain works and processes somewhat differently, there are additional challenges we face in parenting her. There are additional challenges we face in meeting her needs. At times, these challenges are not small. These challenges aren’t insurmountable, either, but it depends what you have on your plate. These challenges aren’t nothing.

But here’s the part where I get mad, because some asshole is going to say, “see—there! Having a kid with Down syndrome is harder, that’s why we aborted.” Or give some terrible excuse about why kids with Down syndrome should never be born in the first place. To which I would like to respond: Who named you god? Who crowned you king of the species, decider of who lives and who dies? Why do you think you are so special that you get to decide? And why in the hell would you think that just because I find there are challenges in having my daughter with Down syndrome that that would mean I don’t want her here? Why do we discount family? Why do we discount love? Why do we always discount love? Kindness? Goodness? Nature?

The problem is that the laziness inside of each of us wants to simplify the narrative. Down syndrome parenting = hard, therefore, something I would not want. But that story is much, much too simplified. Yes, at times parenting my daughter with Down syndrome is hard, but, hear me out, it isn’t that simple. What I would like to be able to do is to tell you that sometimes it’s hard without you judging me or my child. What I would like is for your support. Not pity or charity. Never pity. Don’t even try me with pity. We are a family endowed in privilege, so please do not give us material things. Just love, please. Emotional support. These are the things every family needs right now and always, but especially families who have kids with disabilities.

And since I’ve mentioned the word privilege, I want to point out that having typical children is a sort of privilege. Don’t use that privilege to look down on others. Use that privilege to help people with disabilities and their families rise up.

And what I would like to say is THANK YOU. Thank you to my daughter’s school for understanding that educating our three kids at home, in front of screens all day, was never going to work for our family. THANK YOU for caring about our daughter with Down syndrome’s education by offering us a better way. Thank you for the choice. Families deserve a choice. Thank you to her teachers and educational assistants for making this work. Thank you to her board for heeding the minister of education’s advice. Thank you to whoever made that recommendation to the minister, that kids with disabilities should have access to one-on-one face-to-face education during the shutdown. Thank you for not making me feel like my child is an after-thought.

Thank you for knowing our daughter well enough to see that, to her, the Zoom platform is really just a giant made-up stage where her actions have no consequences, and so butt dances all day long are perfectly acceptable. And funny faces up close to the screen. Picking one’s nose on camera. And that making loud noises when her sister is trying to learn is fun, and so is shutting the computer screen down when it’s her turn to learn even when there’s a real-live person on the other end trying to teach her, and she’s making mom and dad pull their hair out.

THANK YOU, a huge thank you, to her special education resource teacher who knows that, in the week leading up to my MFA residency, I have a shit-ton of work to do, and that my husband and I might explode if we have one more discussion about responsibilities (Okay, they didn’t know about that last part). Thank you for that feeling of joy bursting from my chest when we got off the phone that somebody cares about us, about our daughter, about me and my work.

Because I know, and if you don’t know this you should, but I know, that it is the mother who will get blamed. If school doesn’t go well, if the kids aren’t on time, don’t show up, it’s the mom’s fault. She is the one who is supposed to be doing everything. And guess what? I’m done. I’m fucking done being fully responsible. My husband has stepped up in the hugest way. HUGEST way. And I want to thank him because he knew and accepted when he married me that I am a person with my own ambitions. I am not a wife who has dinner on the table at 5:30 p.m. sharp, like my grandmother was expected to. That was never the agreement. I am the human who works feverishly, following her passions, as long as I can, then comes down in time to eat the dinner he’s prepared for me. At least right now, that’s the wife and person I am. I’m in an intensive program. I’m building a career. I’m also doing what I love. And when his work got tough, you better believe I was there for him. Let no one forget I stayed home to raise our girls for years. I breastfed our babies. I stayed up through the night. I cooked passable meals. I made school lunches. I am not saying he owes me, but I am saying that he can do it too. Men can care for children too. They can take care of the home. Even when they are working. Women do it all the time. Nobody is saying that’s ideal. My husband is doing it, downstairs, right now. He knew that was part of the deal when he married me, that we are equal domestic partners.

But all of this? Virtual learning. A global pandemic stretching into almost a year. A constant underlying threat to you and everyone you know and love. Nobody was prepared for this. And so we’re just doing the best we can, together. But he’s giving, there is no doubt he’s giving, more of himself than he ever wanted to, and for that I am grateful. And thank you to the school for keeping us a healthy family and for giving us this support. And if you didn’t know this was what we were going through, what many, many young families, in some version or form, are likely going through, then now you do. And if you didn’t know that for some families of kids with disabilities, the challenges can seem to stack up higher, now you know that too. Just don’t judge me or my daughter for it.