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.

Don’t Judge Me

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.

 

 

Mom Guilt

When I look outside my window, the rain is falling sideways, leaving wet streaks, not unlike tears, against the glass pane. Pane or pain? I had a rough morning with my daughter. She got up at 6:30 a.m., brushed her hair for an hour, yelled down at me from upstairs, demanding that I put her hair in a ponytail, while I’m frantically putting together three lunches and breakfasts (plus my own, but mothers don’t really count, do we?) I run up quickly and gently pull her hair back, “there you go. Now, please get dressed.” Another hour goes by, most of that time she spends eating, which is great. I need her to eat. I take out the garbage, recycling, and green bin in the rain, continue to serve breakfasts, put away dishes. Clean new dirty dishes. Now I’m chopping up veggies and serving bunny mac and cheese into three thermoses and by golly, she’s still not dressed. I’m feeling less kind, less gentle, the frustration that has been building up over the past few days of solo parenting is about to boil over.

To aggravate the situation, I have a nagging cold that seems to have gotten worse, with each passing day, instead of better as I hoped. Bring on the Hydra sense and Kleenex box. Saying you have a cold during Covid times is like saying you have the bubonic plague. I’m fairly certain it’s a cold, but still. Nobody wants to be sick right now. I’m trying to avoid breathing on my children, desperate for them to stay healthy.

As the minutes tick by, 8:30, 8:37 – Ariel’s friend arrives on her bike – 8:42, oh now it’s 8:50 a.m. and we really truly have to go. Everyone has eaten breakfast, three lunches are packed in backpacks, agendas are signed, masks have been changed, water bottles washed and filled, hats, mitts, raincoats and rainboots sorted. Children have used the bathroom; some even brushed their teeth. And we could leave and be on time except that one child is buck naked.

That sounds funny, but I am not laughing. Not laughing at all. These moments aren’t about the specific incidences themselves, but about the dozen or so other moments of annoyance in the past few days that have boiled me down to this point. No water left in the pot.

Two hours after I first handed her – handed her – the outfit (why isn’t she getting it herself?) my daughter looks at me at 8:55 a.m. – we’re now to the point of being late – and she says, “No! I don’t want these pants.” She sits on the ground, wearing only her underwear.

ARGHHHHHHHH

I scream. I rant. I act like a terrible mom. I fail.

The truth is that I can’t handle being ignored. And I refuse to relinquish control. These are not flattering qualities, in case you were wondering. The truth is that time presses into my side, making me uncomfortable.

I listened to an interview with experienced broadcaster and author Howard Green and his advice when interviewing was clear: “There is a great, basic, human need to feel understood.” Listen, listen, listen, and listen well, he stated.

When I feel my child understands, that they are listening but that they choose not to hear me, I find that infuriating. The problem is, and it’s always obvious to me afterwards, it is I who is clearly not listening. I who has misunderstood. When I get angry and scream at a child to get ready, what I’m really asserting is my intense need to be in control. To be the A+ parent. I know this about myself. I am competitive, I want my kids to do things “right”, be their best selves, but in addition there’s an immense pressure on parents to be the best parents too: get kids to school on time, make healthy litterless lunches, take an interest in their day, check their agendas, do homework, and follow-up with the school as necessary. Prepare healthy meals, spend time with your kids, sign them up for extra-curriculars, make sure they have everything they need (hats, coats and mitts – winter is coming!), Halloween costumes. Pressure, pressure, pressure. Get it right, moms. You have a full-time job? Good – then maybe you’ll be able to afford family travel, the ultimate status symbol, and that overpriced house you live in or lifestyle you want to afford. Do you have interests? Good – those you can pursue when the kids are sleeping and you’re exhausted. Don’t forget to plan time for exercise, self-care, and a wedge of time for yourself! Gosh, not sure when you’re going to fit that in…guess you won’t. Balancing these ideals is impossible. Yet, I buy whole-heartedly into the rederick of having it all.

 

The problem is at times I schedule my day so tightly so that I can be the A+ parent, self, student, wife, colleague, etc. that there is little margin for error. For humanness. For the needs of needy children. Children always need something. At bare minimum, love. Let that be the rule and not the exception to the rule. I should have learned better by now.

The truth is also that I’m a bit of a perfectionist.

I scan my email first thing in the morning. I know, I know, nasty habit, but the other day, there was an assignment from my Master’s program sitting there. The email came in at 6:20 a.m. my time (my instructor makes full use of his days, too).

I open it and scan for my mark. I cannot tell you how much I enjoy receiving a grade because it’s shameful. I like it way more than I should. And this has led me to the conclusion that I’m a total pleaser.

Another truth. After the first assignment we got back, it wasn’t enough for me to know I got an ‘A’, I had to know what grades my peers received. How did I compare. One friend got the same as me, and another scored well, but slightly lower. I felt sick at myself for asking; I regretted the words the moment they came out of my mouth. My intention was not to make someone else feel bad, but to make myself feel good. I am a hedonist. Pour pleasure over my body, please, send good grades my way, fill my pot until it overflows and I’m good and wet. Now boil me back down with the work that it takes to get me to that point. I’ll take sick pleasure in the repetition of striving for success.

And that’s what it is, isn’t it – “success”? To reach success takes grit, determination. Pain. Refusing to quit. The willingness to boil oneself down again and again until there’s nothing left or the pot is full to overflowing.

When I do quit, and by quit, I mean cease to be the “good” mom, the “nice” mom, the mom who doesn’t yell at her kids, then as hard as I am on my kids, I am that much harder on myself. Don’t ever feel the need to shame a mom; no one can shame her better than she can.

I drop my kids off, then sit inside my house on the steps, feeling like a failure when the doorbell rings. Knowing I am sick, a friend decides to stop by with a treat. She sends me a text to let me know the treat is on my windowsill. She has left my favourite drink and a dessert. What act of grace is this? I feel completely undeserving. Isn’t that what mothers do best? But I allow myself the first sip, anyway, pour pleasure into my body. Nothing bad happens, the kids are at school, this time is my own. I sit in silence. I slow down. I acknowledge gratitude for my friend, I acknowledge I will try and do better next time with my daughter and I forgive myself. I sit down at the keyboard, latte by my side, and begin to type.

I acknowledge parenting isn’t easy, and I’m not perfect, and truly, I don’t want to be.

The Chimera

I’m back at the cottage. The chickadees are here – we call back and forth to one another – so is the rain. But I don’t mind the rain; I’m here to work. The brightly coloured ground is wallpapered with leaves. Inside, the whirl of a heater, a light sucking sound – or is it blowing? Last night, standing outside in the dark, complete silence. This is my definition of a retreat.

I do have a friend, a fury companion. I take him outside for his walk this morning and he refuses to budge from the doorframe. It’s raining, he communicates with his eyes. My pretty, prissy dog. Instead he suggests we play inside, nudging his rope toy into my leg, coyly letting his teeth graze my skin from time to time, just enough to goad me on. I am reminded of the fox from The Little Prince.

“You are pretty,” the prince tells the fox, “who are you?” The fox explains he is a fox and that if the little prince wishes to play with him, the little prince must first tame the fox. Louie is mine, I have tamed him. And now he is unique to me in all the world. But the fox’s words are almost a warning: once you tame me, I will be sad when you leave. The fields of wheat will remind me of your blond hair. We are responsible for that which we tame, and so it is between my vizsla and me. I am here to write, to work, to run a retreat, but I am also responsible for the things I have tamed. We can never completely leave the world behind, can we?

Later, we walk along the driveway and something inside Louie lets go, unclenches. He tears around, digging in the earth, then runs up a storm. Whatever it is that is wild inside of him has broken free. This is who he is, I think, this is instinct. I take him outside to be free, to be who he is. A wild animal. He runs at me full speed, his muscles uncoil as he jumps up at my chest, mouth open, gnawing at my arm.

“NO!” I am firm with him, grab his collar. It’s as though he’s forgotten himself, the dog we’ve tamed him to be. Oh, right. He sits politely, looks at me with those puppy eyes. “Okay,” I tell him, “go play.” Released, he’s off like a shot. Then a minute later attacks me again, playful but rough. Both my pet and a wild animal.

On another day, Louie and I are running together, and something miraculous happens. The moment is like a chimera, an illusion or fabrication of the mind, an unrealized dream, except it comes true.

Louie runs alongside me wearing a black fifteen-foot leash. If I see another dog or human coming, I can easily step on his long rope, or catch up to him and reign him in. I’m teaching him to come back to me when we see other people, but he isn’t perfect at it yet. Remember: taming, wild animal. He’s in training. The leash trails behind him, and bumps and shimmies across the ground like a snake. Louie and I are often close enough during our runs that I have to avoid stepping on his leash, which otherwise causes him to roll and tumble to the ground (sorry, boy). The leash’s movement makes it seem as though it is alive: it’s a trick of the mind and the eyes, and I constantly remind myself it is not so, the leash is an inanimate object being trailed along the ground. One minute I’m running along, the next minute the leash turns into a long black snake, slithering along in the shape of an ‘s’. The chimera becomes real.

I am running along and the end of the leash does turn into a real snake. I have to hop over the reptile to avoid stepping on its long body. The snake was likely sunning itself on the dirt path, when down comes my wild animal, clopping along, barreling full speed along the trail, disturbing the snake from its rest. The snake scurried off in my direction, appearing to materialize out of the end of the black leash the same colour as its body.

“Oh!” was all I could manage as I hopped over the snake the length of my arm.

This has to mean something, I tell myself, jogging along. Leashes don’t just change into snakes for no reason. Maybe it’s what is real isn’t as it seems? Maybe it’s about creating something out of nothing? Maybe it’s about life materializing? Maybe it’s about being at the right place at the right time to witness a miracle, or the wrong place at the wrong time, depending on how you look at it? Maybe the snake carries no meaning at all, the three of us just passersby in the grand scheme of the universe? But I think I know better than that. Maybe it’s about watching where I step, about learning to see what’s in front of me? Literally, what I am almost stepping on. Maybe the snake was a warning, a sign to turn and run, or a gift of the inanimate being made real? Of my worst fear, that of the leash or rope, actually being a real snake? Isn’t that one of those things many of us fear when we’re outdoors. That that stick over there is a snake that might curl around our arm and bite us? It’s funny how the snakes we encounter in Canada really have no interest in doing that, but my dog, the one I’ve tamed, he’s game.

The gift of meaning was in seeing the leash come to life, in beholding the real live snake, and then jumping over it. I did not scream; I did not feel in the least bit inclined to. I’m no longer afraid of snakes, because I’ve taken the time to get to know them a bit better. When we know something, we fear it less. And of course, as I jogged along further, I came to see the snake as representative of my little girl with Down syndrome. The end of the leash could never become real, just like how as a twenty-eight year old woman, I could never give birth to a baby with Down syndrome. That would be my worst fear. Then she was here, and I held her in my arms and saw that fear was only a fear of the unknown. That everything is knowable, and that it is fear that drives us apart. And that my little girl would become unique to me in all the world. She would tame me. It’s not that I wasn’t surprised, that I didn’t jump or that I would act perfectly, as her mother, all the time, but what once seemed scary, no longer held its power over me. I would see the world anew, and I would jog along just fine.

The Real Thing

September’s pace hits you in the belly, takes the breath right out of you. Perhaps the greatest indicator are the sounds coming in through my bedroom window from outside at six in the morning. The squealing breaks of large trucks, engines turning over, wheels pressed against pavement. These are not weekend sounds, rumpled sheets, the hot sizzle of oil in the frying pan or the smell of bacon and maple syrup. Another car drives by this morning. Even the sky is screaming with jet engines. Busy, busy, busy. All going somewhere.

Sometimes I want to turn it all off, make the noise go away. I check my phone and my day begins listening to a video of a friend crying. On a phone call with a friend last night, discussing writing, she reminds me that our brains don’t know the difference between real trauma and trauma we relive through our writing, in terms of the toll trauma takes on our bodies, our wellbeing. We feel trauma at a visceral level when we remember it and we actually reexperience it. Does my brain understand the difference between my friend recording a video of herself crying last night and that my friend is likely sleeping soundly when I watch the video today? Probably not. I feel sad when I watch the video because I see her pain, no longer real, but that once was so and were she to be reminded about it, she might be sad all over again too. But maybe not. Perhaps that was a particularly sensitive moment and she’s moved on. Without being there in person myself, I’ll never know the full context.

Online, even when we aren’t there, we are there. Through video and Zoom, we are everywhere now. I’m not sure if my brain knows the difference: that I am not actually going everywhere, it just feels that way. My body, my mind, have travelled into the city, across the country from one side to the other all in one day, and it’s tiring. We feel exhausted, fatigued. Burnt out.

I do have a remedy for this. My dog is my lifeline. I HAVE to walk him/run him/play with him. He gets me outside. Outside this time of year is the sound of crickets chirping, the hot sun beating on my bare arms, fading colour and fresh air with a whiff of decay. In town, it’s the cries of children in the school yard and the barks of dogs greeting passersby. Out of town, it’s trees and dappled light, stretching shadows, dusty footsteps along a well-trodden path.

My dog, my children, they are in the present moment. They are my real life. There is no such thing as past traumas, only the right-here-right-now of the moment. I am filling in a form for the school before I go back to the email I was in the middle of typing before I had to pick the kids up, before I phone that person back, before I join my next Zoom call, before, before…

“Mommy,” says Penelope, my youngest, “come play hockey with me in the backyard.”

“Okay.” I drop the pen and the form. This time they can wait, my four-year-old can’t. Or rather, she can, but real-life beckons.

While Zoom may take me to far-off places, my children keep me right where I am, right where I am meant to be.

Outside we go and the sun is blazing, the grass needs to be cut. Penelope hacks away at a tennis ball with her plastic stick. I teach her to always keep two hands on your stick, see, like this? the way my dad taught me. She hacks at the ground. Lower, quick, like this – see? She pauses to look at me, her eyes hold me and she smiles, delighted to have her mom all to herself. In the flesh. This connection between us cannot be replicated on any screen, or rather, it can, a scene in a movie perhaps, the mother dropping what she’s doing to make time for her youngest, a heartening scene that evokes emotion. The listener feels something, real emotion, love even, that approximates the real thing. But do not be fooled. My phone doesn’t love me. My computer screen does not love me. Exchanged in that glance was authentic real-life, an in-person exchange that cannot be replicated again. The exchanges of real-life are the fabric of the universe, not what happens on a screen. I’m trying to remember that. To tell my body to slow down, step away, get outside and into the folds of the universe. We pass the tennis ball back and forth between us; she hits it really far and we cheer. Our happy cries ring out and there is no replacing this real thing.

 

Not One Excuse

Editor’s Note: Our daughter’s school and educational team are extraordinary. We feel fortunate and grateful to have such dedicated educators in our corner and thank them for all their hard work to prepare for our children’s return to school.

It is my expressed wish that not one student with a disability will experience barriers to receiving an inclusive and full educational experience this year.

I’m addressing this piece to no one and to everyone who will listen. This is a projection of my fears as a parent to a child with a disability, magnified, but not unjustified. This piece is not to assign blame or elicit shame or to drag up the past or point a finger or a projection of any behaviour I foresee. The honest sentiments that follow are about how I want to move forward this school year, no excuses. I know I am not alone in having these feelings.

 

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education this year. Parents who have children with disabilities, we are worried about this. I do not want even one excuse. Not a global pandemic. Not a new teacher, a new year, not a new anything. Not my needing to be polite, or to give people time to figure it out on their own that my daughter is able. Not any litany of excuses: we’re getting to know her, she’s tired, we’re just getting back into the swing of things, or list of things they didn’t know about her, because here are the things they need to know about her: …that she should be doing group work, that she should be writing tests, that she should be keeping notes in an agenda with all of her peers; that she can read, that she can write (albeit large – large is okay!) that she can LEARN. That she is an intelligent girl. She may learn differently and at a different rate, but learning differently at our own pace is okay too. People who learn and think differently have drastically changed the world – for the better. Nobody ever questions how long it took them to get there. Different is not an excuse.

I do not want, one more time, to have to go over all of the things that my daughter can do, to have to elucidate her capabilities, one at a time, but my god I will. Because parents of kids with disabilities, if you don’t, if we make assumptions that others understand, if I assume that the teachers’ assumptions are the same assumptions as mine, that Elyse’s educational assistants who spend the day with her know what our expectations are, then, well guess what? Somebody is going to be misinterpreted, and then somebody is going to be left feeling disappointed, and more often than not, it is my daughter, my exceptional daughter, who is going to miss out.

I do not want to hear the excuse of “so-and-so didn’t know.” I am the one who makes that excuse, on behalf of well-meaning individuals, but I’m not going to do that anymore. Because they will know. Because I have told them. Here is what my girl can do. Because they can ask me.

I do not make demands and expect that the school is an island. I set expectations that the school and our household will help meet together. We will read with Elyse at home, no excuses. We can review concepts she’s struggling with at home, no excuses. I will sit down and plan how she can be properly included in her classroom, how to help her participate fully, and I’m happy to do this if it will help my daughter, but what I will not accept is any excuse for why it is not happening. No excuse will do as a substitute for full and proper inclusion and education. Insufficient funding – nope. Insufficient knowledge – nope. A lack of empathy and caring – definitely not.

I will not let my schooling get in the way of my daughter’s schooling. My husband will not let his work get in the way of our daughter’s education. My daughter’s education is not just my responsibility. Mothers are not solely responsible for their child’s education. I repeat: mothers are not solely responsible for their child’s education! No excuses, fathers. No excuses, men. I will not do all of the heavy lifting, but I will carry my fair share of the load.

I do not want one thing to get in the way of my daughter’s education. Not one bias. Not one prejudice. Not one more ableist assumption. Not her sister being in her class, or her glasses fogging up, or wearing a mask or needing to go to the bathroom. I do not want to hear it. Find a way. I will help, and so will my husband, but find a way. There is no excuse for denying a child their right to an accessible and meaningful education. Excuses are a waste of time.

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education.

Genuine situations, honest mistakes, empathy, compassion and kindness, always. But any excuses have got to go.

 

Living On A Cloud

I spent the summer after third year university inhabiting une petite village in Quebec as part of a cultural exchange program through Western University. I was joined by students from around the world, but mostly other Canadians like me. The summer was rife with love affairs and love triangles, some that lasted months, others that lasted five weeks (the duration of the program). I meant to leave after five weeks but was having so much fun immersing myself in Quebecois culture, I planned to stay the entire summer break. I spoke in French every waking minute and when my parents came to visit late in the summer, English felt heavy on my tongue, stuck in the back of my throat.

At one point, while visiting a campground where my host family had a trailer, I was riding on the back of a golf cart with a friend. My friend turned to me,

“You know this isn’t real life here, right? We’re living on a cloud.” We laughed; he was right. Our love affairs here didn’t really matter, because this wasn’t real life, right? Real life was where we towed the line, where our decisions impacted our actual reality. Quebec life was…elsewhere.

This summer, once again, I am undoubtedly living on a cloud. Life at the cottage hasn’t been perfect or without its dramas, but it’s been safe, sheltered, illuminating, often peaceful, infused with beauty, nature and life. The proximity to the lake, mere meters, is my greatest joy. I swim every day. Living here has felt more real than my real life.

The realities of school and Covid and returning home to rebuild our past life feel heavy, stuck in the back of my throat. I feel like I’m heading toward a different kind of life on a cloud, a storm cloud, not the kind of cloud you want to be on at all. No love affairs, only the heavy fog of disease that surrounds us. The reality of children being sent back to school, only to be exposed to illness; the slight sign of their humanity, a dripping nose, sending them straight home again anyway. Is there even going to be school for families who have young children, especially families, like mine, with a child who is more susceptible to getting sick? I can’t help but feel the words, “only the strong will survive” like a punch in my gut.

On the storm cloud, it rains every day. It rains down responsibilities, broken promises, false hopes and dashed dreams. While the school system in place isn’t perfect, I feel like I have to try, working parents, parents who are full time students, we feel like we have to try to send our kids back. What’s the alternative? Who’s going to look after them at home? Apple tv? Their iPads? Yup and yup. Technology is both a blessing and a curse. And we’re lucky, LUCKY, to have access to that technology that is both a blessing and a curse. What about those kids who don’t have access? Who aren’t so lucky?

Normally the start of a new school year is like the sight of a rising sun ahead, all blustery blue skies and white fluffy clouds. The sun-man is wearing cool black shades and a big smile with happy sunrays shooting out of his head, a backpack on his smoldering shoulders. I feel like Covid killed the sun-man. I picture my children, their cute faces hidden behind masks, sequestered at their desks all day long, afraid to touch one another, just hoping to be able to attend school because their parents are so tired of looking after them, of trying to be everything to everyone that they can’t keep it together anymore. School is what they desire; that’s what we’ve come to.

Nobody chose this, I know. I also know I will be one among many mothers who are pulling out their magic markers and drawing a squiggly sun-man in their kids’ skies, trying to keep things together, to keep those clouds above looking glossy and bright. I will simultaneously draw a happy face across the squiggly line of my own mouth, because that’s what mothers are expected to do.

But I won’t be happy, and my kids will know that.

I will not be happy to give up my time to write. I will not be happy to put my future on hold. I will not be happy to do half a job. I will not be happy with having people in my workspace. I will not be happy with a disgruntled, stressed out partner. I will not be happy to see my kids at home when they should be at school. I will not be happy if someone in my family gets sick. I will not be happy when there is an outbreak in my community.

My unhappiness is but a drop in the bucket, but I wanted you to know. To the mothers and parents feeling stressed, you’re not alone.

The Curious Incident of the Frog in the Night

I’m a sentimentalist, it’s true.  I am guilty of romanticizing life at the cottage, both to myself and to others. I tend to focus on the good feelings and not so much on the bad experiences. And there’s merit to this, to being an optimist, to seeing the glass half-full, to finding the positives and looking on the bright side. To letting one’s self get swept up in the moment. But we all know that darkness lurks somewhere in the shadows.  I can’t remain clouded to what is difficult and unseemly to write about or I risk only telling half the story – that which is saccharine, sickly sweet. (See Leslie Jamison’s essay, In Defense of Saccharin(e) from The Empathy Exams for a further examination of this topic).

There’s the fairy tale version of our summer stay and the darker elements – the truth of our existence here lies somewhere in between.

Let me tell you a sinister story, reminiscent of brothers Grimm.

Once upon a time there was a princess named Penelope who loved to pick up frogs and toads. All day long, she caught the frogs, watched the toads and cradled them in her hands. At four years old, the little princess was not the best at washing her hands.

Her parents, the king and queen, were very busy running the cottage kingdom, managing three children during a pandemic and working full time. Life in the palace was not always a bed of roses. They argued over responsibilities and often left the children to their own devices. Princess Penelope spent her days down by the shoreline with her frogs.

Now, if this were brothers Grimm, the little princess would likely drown at this point in the story, but stay with me here.

One night, after the royal family hosted visitors for the weekend, the little princess began to vomit. The queen panicked. Was this the dreaded Covid plague?  Her poor baby! What had they done! How could they have been so foolish as to allow others to enter the protective bubble of their cottage kingdom?

Mysteriously, the next morning, after having vomited all night, the little princess recovered. She seemed absolutely fine – better than fine. Life returned to normal with princess Penelope catching her frogs down by the shore. The king and queen stopped worrying about the little princess and fell back into their work.

A week later, the vomiting happened again. This time, there had been no visitors. Was this some sort of evil spell?  No – poison.

The king happened to remember something he once read in a book of potions about toads excreting toxins.

Little princesses aren’t very good at washing their hands. 

Busy monarchs seldom have the time to enforce proper hand washing after every single held toad.

When a toad is squeezed, they excrete a milky poison from their eyes toxic to their enemies. In addition, many water frogs also have bacteria and can carry salmonella, which can lead to some serious intestinal upset. Through further research, the king and queen also discovered that the substance coating certain frogs and toads can be hallucinogenic.  So the story of the princess kissing the frog who turned into a prince – who knows?  Maybe that’s what she thought she saw, high as a kite.

Furthermore, because a frog’s skin is so porous and takes in its environment so readily, holding it in your hand is akin to having someone hold onto your lung. That cannot feel comfortable, and so, perhaps it is best to leave the frogs and toads be.

Now that the case of the curious night vomiting has been solved, his and her majesty have gently, but firmly, instructed the young princess to limit the number of frogs and toads she holds and to wash her hands after handling every single one. Every single time.

According to latest reports, “I’m holding a toad in my hands!”, not much has changed.

And so this story – and her nausea – may continue unhappily ever after.

But, honestly – what can you do?  She’s a kid. Kids are disgusting. And to those who would judge: if you think your kid hand-washes after doing something as dirty as wiping their own ass, check next time, use a magic mirror or whatever you have to do. And when you watch them walk out, hands dry, wipe their nose and pass you by with a grin, maybe then the frog vomiting won’t seem so bad.

Accompanying every bit of life, every piece of beauty, there’s a darker side.

“Oh, I just love the loons!” I told one neighbour,

“Yes, well, they’re not as great as you might think.”  The loons eat the native ducks’ eggs, effectively almost abolishing them from our lake. And the ducks that do survive, another neighbour informed me,

“The ducklings – the snapping turtles pull them under by the legs, one by one.”  One webbed foot at a time.

Nature is murderous, cruel, relentless, toxic. Leeches that suck your blood, wasps that sting beneath the eye. Toads that poison little princesses like a blood-red apple.

At the end of the summer, I’ll hold a picture in my mind of our sweet four-year in a pink tutu bent over the toad in her hand. All eyelashes and a mop of curls. The remnants of salmonella on her small hands.

I’ll try not to get all sentimental over that picture, over the notion of a tiny girl cuddling with her toads, enjoying her warm summer days, the sparkle of the sun reflected in the water, dazzling, under a bright blue sky, the apple of the frog’s eye.  That kind of romanticizing, especially in writing, is enough to make you sick.