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.

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.

 

 

Leave

I want to be upfront about something. I love my family; I am grateful for my quality of life and the joy I get from spending my days writing. I love my husband who keeps me particularly happy and understands my humour when I call him “pony” and tell him to “make it rain” a pros pos of nothing, at least not something I could explain out of context (or in context). I love having my kids in school and I feel an extra abundance of affection for their teachers this year who educate them during the day. After Covid, maybe all parents of school-aged children are feeling this way? I’m having these fond feelings while simultaneously repeating a silent mantra in my head. One that keeps popping up. Leave, the voice whispers. Just go.

I’m completely happy in my work life. I love my Master’s program, engaging with other writers, having my work reviewed and receiving feedback and criticism and giving that gift back to others. And attending literary events. I’m mostly new to the scene of book readings, workshops and panels and it’s been such a rich experience. But I’m missing something. Something Covid has taken from me.

Freedom.

The freedom to connect with others in person, to gather over the holidays and, especially, to travel. I miss travelling. I miss traveling the way you miss an old friend, deep in my bones, like a visceral ache, a phantom limb. The world was there to explore, full of enjoyment and novelty, and now it’s not.

The other day, I was in the middle of an online poetry reading session, one that I was truly enjoying, when my eye caught the bottom of the Zoom screen window. The word ‘LEAVE’ stared back at me in bright letters. Leave. LEAVE. Yes! That is exactly what I want to do. That voice inside me screams louder.

I want to go away; I want to leave right now and be gone, away from here. I tell my husband, “My brain is sick of this place.” I am fine, physically, but my mind, my mind is not. I spend most of my day in the same room where I work, sleep and often eat. My mind is craving something new. An adventure. An escape. LEAVE.

I want to plan a trip, NEED to plan a trip. I pull up travel advisories and wow, that’s just a whole lot of red. The world is bleeding.

I’m in the head space where I want a vacation to look forward to, a means of escape to break up the dreary winter months ahead. I regularly feel that pull this time of year, but this time, no amount of planning is going to make any difference. Covid will decide when and if I go anywhere.

And I know, I know, this is a small loss in a sea of loses. Only a drop into the pool of our collective tears. But it’s how I’m feeling. I’m feeling the loss of experiences I would have had. I’m feeling the activities that have been taken from a chunk of my kids’ childhood. I’m feeling like my home has become a box, or so the story goes at bedtime, “The mommy lives inside a box and the walls keep getting smaller and smaller.” Penelope’s eyes grow wide. “Oh no!” she says, “what happened to the mommy inside?” It isn’t good. For one, she feels squished, which makes her want to lash out.

Space. What an interesting construct. Physical, as in measurable dimensions, but more so, mental, parameters of the mind. Having my husband work from homeis wonderful in so many respects, but before, pre-covid, he travelled extensively, and I was used to his absence, to filling that space. Now there is no space to be filled, instead there is overlap. And even when he was around before, he drove on the daily to his office. I had days without children that were to myself, when I had to cater to no one’s needs but my own and the needs of my work. Not so in the days of Covid.

“Don’t take this the wrong way, but I’m a bit sick of you too pony,” I tell him, not unlovingly. But it’s more than that. I’ve been a ‘stay-at-home’ mom for the past nine years. Finally, FINALLY, and I have been waiting a few years for this, I was getting to the place where I no longer felt like the mommy-in-a-box, caged in. I chose to be home looking after kids and then chose for that time to end. I was regaining my freedom and autonomy. I signed up for my Masters that included two weeks away, AWAY per year and I was so SO excited about that prospect. A break from my family AND the chance to hang out with writers and just write? With the bulk of my time spent at home with my family? Perfect. I was euphoric to be accepted into the program. The trip out east. The New York City getaway. Both since gone virtual. That low-residency piece was the cherry on top. Covid has eaten the cherry, and some of the cake, too.

This isn’t just about me needing time away for myself, but it is that too. I’m better for my family when my own needs are met. And I care about them receiving the best version of me, a mom and wife in a healthy head space, not the mommy-in-a-box who feels claustrophobic and desperate. At this point, I don’t even know if what I need is to go somewhere else, or if just knowing that I could go somewhere else would be enough. I suspect the latter. Call me spoiled, but I don’t do well with being told I can’t.

Over the last few years, I’ve gone on trips by myself. These might be for a conference or to visit a friend, but they are scheduled time away. That space worked its way into my life because I needed it. We all have different needs. Mine involves space and time to myself and in Covid-era, this has become impractical, unsafe and in many instances, impossible. Even going to the library has become perilous.

I am not oblivious to the rest of the world’s needs, but I am acknowledging this one small loss, because maybe, just maybe, you feel your own version of stuck-in-a-box. Covid has pushed the walls of our world smaller.

While instant gratification is nice, I do seem to have a knack for the long hall. Writing a book. Long trips. Marathon training. My marriage.

Waiting for Covid to go away is my least favourite activity, but in this case, I want to be around for the long haul and so I will hold off on the gratification piece. Other than solitary dog hikes in the forest, I’m mostly staying home. Sometimes sitting on my hands, watching my mouth, pulling at my hair. But I’m staying home to keep my family safe. I’m staying home to keep your family safe. I’m working through my personal frustrations and dissatisfactions because it’s the right thing to do. I’m pushing back against the walls closing me in created within the confines of my mind. I’m especially holding onto memories of past travel, allowing myself to dream about a near future where everyone is vaccinated, the world is safe again, where I could go somewhere if I wanted to and hoping this small grievance and annoyance is all I will have to face.

For the time being, I’m relying much more on a cheaper method of travel. Leave, just go, the voice whispers. And so I pick up a book and fall inside, and that world has never been more appealing.

 

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.

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.