Hold on Tight to this Earth

The hiss of the tea kettle steaming its siren call rattles me awake.  There’s a small lever on its spout to flick back the lid and once, only once, instead of touching that nubby rubber extremity, I put my finger on the steaming metal.  Only once.  Accidents happen.

Is it a curse/burden or the wild imagination of women, of mothers, to constantly worry/fear/have daymares about the horrible way their loved ones may die or be injured?  Do men have these same fears?

Safety is the illusion, the comfortable narrative we tell ourselves as we hum our way through our days – a hum that can easily turn into a scream.

My brother and his family visit on the weekend.  We go on a day trip to Algonquin park.  Our cottage is situated about forty-five minutes from the east gate.  On our way, as we careen down another steep incline, the speedometer reaching over 100 km/h, I see the sign warning for deer, then I see the sign warning for moose and I can’t help myself, “please slow down.”  I can see the moose appearing from nowhere, hear the crash; I think I’m going to be sick.

On our hike, we spot a stack of boulders with snakes happily coiled up in the sun.  My toddler leans her face in close.  What if a snake were to simply recoil and SNAP.  She isn’t afraid.  She pokes him with a stick, and he slides away.

On the last evening of their stay, my brother and my husband set off to fish in a leaky tin boat at sunset.  Our lake is quite small, but it has pockets of depth, some say up to ninety feet.  Mostly the whole lake is visible, except for a few hidden bends.  As the sun dips further, I walk away from them, turn my back on the water, and walk up the steep incline of our gravel driveway with my dog.  I think, I hope they brought the lifejackets.  We are new to cottage life.  It’s easy to forget your own safety underneath the camouflage of bliss.

I walk back down the driveway with the dog and scan the horizon.  No sign of them.

They had a few beers, I remind myself.  What if they tipped?  The water is calm and secretive.  The lone eerie call of a loon rings out.

Back in my kitchen, as the tea kettle wails, I return a large knife by sliding it into its holster.  What if I missed?  And instead sliced into my hand.  Instead, I am careful, deliberate.  The throaty call of a crow caws out somewhere overhead.

They are around the bend, my brother and my husband, and as the sky fades to black, the stars twinkling overhead, they come back safely to us with fish stories to tell.  The baby fish that ate their worm and caught the monster pike, will someday turn into the monster fish that caught the whale, but there’s no danger in that.

“You don’t have any snapping turtles up here by any chance, do you?”  My sister-in-law tells me a story about the snapping turtle that bit her toe as she dangled on a pool noodle in a lake.  Her turquoise nail polish was to blame, she thinks.  She shows me the scar and I try not to think about it as I swim alone, far from shore, cutting across the lake.  I also try not to think about what if, at this moment, my heart stopped beating.  We do happen to have a lovely snapping turtle, the caretakers of the lake, who likes to visit the fish underneath our dock.

The kids fish and catch fish.  The fish go into a bucket.  The kids and other adults go up for lunch; I am the last one to pull myself from the lake.

“What about these fish?” I call up.

“Leave them, the boys want to eat them.”

I hesitate.  The fish don’t look like they’re doing so well.  One is floating up sideways near the top.  I push aside my instincts.

Over lunch, we ascertain nobody knows how to clean or prepare the fish.  And it seems especially clear that no one is volunteering to kill them or deal with the mess.  Another time.  My brother is the first to head back down to the bucket and the news is grim.

“I think they’re all dead.”  He dumps the bucket of water into the lake in a panic and then realizes he’s just dumped a bucket of dead fish beside the dock.

“No, look!” they’re still breathing, they are just in shock.  Fish swim so that water will pass over their gills.  The bucket provided not enough space, not enough air.  No room to breathe and live.

I am outraged on behalf of the fish.  I can tolerate fishing, but I cannot tolerate cruelty.  That our carelessness has caused the fish distress near death is unacceptable.  Take only what you need.  Still.  One by one they eventually swim away, they live.  Lesson learned.  It’s clear to me who poses the greatest threat and it’s not the snapping turtle.

“How do you keep them safe?” Elyse’s speech therapist is asking me a pointed question, the pointed question, about life at the cottage on the water’s edge.

“Strict rules,” I say.  There’s no going outside without letting an adult know.  No going on the dock period without an adult.  Still.

There’s a sort of marsh on one side of the dock and a beach for swimming on the other side.  The edge of the water is shallow, its deepening slow, only up to four feet by the very end of the dock.  We allow the kids to play at the beach by the marsh.  Still.

One day Dan and I are finishing our dinner.  We sit in the screened in porch with a view of the water and the girls are playing outside.  For one moment, they forget themselves and step onto the edge of the dock.  One peers over the edge into the water, probably looking for minnows, another leans (pushes?) into them and SPLASH!  On one side, our dock is lined with rocks, likely the remnants of an old dock.  Her head avoids the rock by inches.  Dan and I hear the splash, jump to our feet, in time to hear one complaining about being soaking wet, but not hurt.  Not this time.

Louie, our rambunctious pup, weaves through children at warp speed, occasionally deciding to take one out.  We know he does this.  We prepare for this exact scenario.  Keep him on a leash we can grab onto at any time.  Our children, who cling to his neck and pull at his skin and love him dearly, have learned to brace themselves when he gets into this wild state.  Still.

My youngest nephew is but a wisp of a child.  Small for his age of three, which is in itself small; I worried about him the most with Louie.  Sure enough, with our vigilance, which is not vigilance enough, Louie at some point over the weekend, knocked him down two stairs, bulldozed him over in our driveway as we were all saying goodbye, and narrowly missed knocking him off the dock, more than once.  Louie charged full speed right at him on the dock, having escaped an adult grasp, in a frenzy of excitement, and my nephew’s little life flashed before my eyes.  The lake in relief, Louie swerved to the left at the last minute and I scooped my nephew up safely into my arms.

Later, the two of us, just the two of us, took Louie for a walk up the incline.  My nephew didn’t say a word, but held my hand tight, trusting me, as I warded off the dog who wanted sticks thrown for him.  A dog that comes in hot.  I felt like with my hand, I was tethering my nephew’s small soul to the earth.  I daren’t let go.

 

Unable to Perceive the Shape of You

What an odd yet strange and wonderful thing it is to tether oneself to another human being through the act of marriage.  To say, “you’re the one!” with the intention that they’re the one forever.  Until death do you part.  Even after death, we comfort ourselves by imagining our dearly departed waiting for us behind those pearly gates, just on the other side.  Well maybe that’s not exactly how we each envision it; from accounts I’ve read from the other side there are bright lights and an energy, a sort of life force that’s difficult to describe.  A place we go back to from whence we came.  I believe in this energy, in the light that glows within us – ‘our spirit’ – that is extinguished once we’re gone.  It’s a romantic notion, but I have to, I have to believe in living on in some form after death, the way I have to believe in marriage and love.  Both forces are equally dubious yet unmistakeably felt.

I began writing this blog yesterday with the intention of dedicating it to Dan in honour of our upcoming eleven-year wedding anniversary, but the piece took a turn when I remembered a line I heard recently in a reading – a poem, The Country of Marriage by Wendell Berry.  Poems apparently have the power to control your thoughts and fingers typing on a keyboard.  Once I began traveling to the country of marriage through my writing, the piece evolved and transformed itself from the lighthearted voice and tone of my blog post writing into a more lyrical, deeply felt, literary piece you would call an essay, which is, as Cynthia Ozick puts it, “A stroll through someone’s mazy mind.”  Pieces of Wendell’s poem became part of the essay and the basis of each scene construction, forming my own ideas about what constitutes a country of marriage.  You can’t just throw a phrase like ‘country of marriage’ out at a writer and not expect them to pounce on it.  I wrote on that idea with a rabid fervour.  Anyway, you’ll have to read about it in my next book.  I promise tears (mine), steam rising, oppressors, ex-boyfriends, rugged terrain, the torn skin of a scalp, the taste of alcohol, knees pressed together, Down syndrome, and a belly (mine) as full as the moon.  We have gone some places, my husband and I, in our country of marriage.

But this post isn’t all lost causes, because today I remembered another line that I happily dedicate to the man who walks alongside me.

Unable to perceive the shape of you, I find you all around me. Your presence fills my eyes with your love. It humbles my heart, for you are everywhere.

~ The Shape of Water, adapted and translated (likely) from 13th century Sufi mystic poet Rumi

When I heard this, I thought it was one of the most romantic notions conceived, unable to perceive the shape of you.  Rumi is, of course, speaking of God.  Love may be the closest facsimile of divinity I’ve encountered in my life, and so I think these lines are just about right.

Eleven years in our country of marriage, unable to perceive the shape of you, I find you all around me.  Your presence fills my eyes with your love.  It humbles my heart, for you are everywhere.

A Rustling

I’m lying in bed.  My mind is swimming with thoughts about circumstance and what I’ve been writing, keeping me awake.  Never a good thing when you’re planning to get up at 5:00 a.m. the next morning.  And how did that go, the getting up at 5:00 a.m.?  This morning – it didn’t.  I sat down at my computer close to seven.

Time to take stock.

I smell like campfire.  My hair, pulled back in a messy ponytail, is falling loose and I have an itchy bug bite on the skin over my left ribcage.  I can’t re-read that sentence without wanting to scratch the bite.  I touched it again, just now.  My face, which has grown darker in colour these past few weeks, feels a bit oily (I haven’t washed it) and I’m groggy with sleep.  It’s colder outside, yesterday and today, a surprising yet also obvious factor of living further North; the cold seeps up through the floorboards as we sleep.  We are not insulated here, though we’re nice and cozy in our beds under down comforters.

There’s a giant pot of water standing on the stove that Dan boiled before bed, which I used to rinse off the Ontario strawberries and blueberries for my cereal this morning.  Our water comes from the lake and it’s unsafe to drink.  We’re having our mail forwarded here, to our cottage address this summer, and when the mailman came out to assess whether we could have a rural mailbox or not, he reported back that it would not be safe to do so along the stretch of road above us.  And so we will fetch our mail from a communal location, much farther away, the same as we did at home, only different.  Only the UPS guy is crazy enough/forced to drive his big truck down our laneway.  Our internet hub arrived this way, in the middle of the day, seemingly out of nowhere.  A young uniform-clad man in sunglasses delivered our package with a knowing smile, bent down to pet our puppy, then made four attempts to peel back up the steep incline of our laneway.  He made it out on the fourth attempt and for that I was glad.

The previous paragraph is not entirely true.  The septic system guy also made his way down our laneway, but having experience with such properties as ours, he parked at the top and walked down to assess the situation.  The mark of a pro.  Then, in a human feat – and with a driving ability I never hope to master – he reversed his large truck down our laneway (backwards!) and made it out no problem.  For those who plan to visit, don’t worry, managing the driveway isn’t as hard as I’m making it sound.  You will arrive safe and sound.  You just won’t want to leave.

Wildlife surrounds us.  Wolves come here in the winter, bears abound (though we’re unlikely to see any), moose – so we’re told – and deer, definitely deer.  I’ve seen several deer already.  And a miraculous thing:  when we arrived to look at our cottage late spring, I noticed the ring of trees around the lake all sat neatly trimmed at their bottoms.  Somewhere along the line, I made an assumption that treelines around lakes looked the way they do because of rising and falling water levels, the way rock is eroded by water over time.

“No, no.  It’s mother nature’s hedge clippers,” our real estate agent informed me.  The deer trim the trees by eating them.  That’s as high as they can reach, craning their necks, while standing on the ice.

The people who owned the cottage before us put out birdseed on the balcony to feed the blue jays, and so we do so now as well.  They left nuts they used to hand feed a chipmunk, and while we’ve been dallying, getting our bearings around here, the chipmunk runs around twittering and swearing at us; I imagine something along the lines of “Give me some F*%$ing nuts!”  Ariel is keenly working on repairing that relationship and building the trust that has been broken back up.

I will probably do laundry today.  We have an old washer here, a top loader – a luxury for a cottage – that can process small loads.  There has never been anything light about our laundry loads before, and so we adapt, we do less laundry more frequently.  We re-wear the same clothes like they’re going out of style.  And we check the weather.  Thunderstorms coming.  Better get the laundry washed and hung up now.  It’s a windy day, loads of time for our clothes to dry.

And yes, there are bugs you must prepare for.  The blackflies are particularly pesky as the sun is setting.  Those little vampire bugs are relentless.  Our children’s’ necks and behind their ears are mottled with scars, entry wounds that itch, but they don’t seem to mind too much.  Bug spray helps, so does a windy day like today.  Overcast days with clouds make the bugs all too happy and so we lean toward the sun.

On the day of their arrival, I took the kids to the dock with the sun shining down.  They dipped their toes into the mushy sand of the beach.  Penelope was the first to dive forward and swim with Ariel close behind her off the dock into dark waters.  Elyse came in once with me, dangling her legs off the water mat we bought for them, but proclaimed the water to be too cold.  They’d just spent a few days enjoying the luxury of my parent’s pool and I sensed Elyse’s reticence involved more than just the temperature.

Cottage life involves a rugged wildness, an embracing of nature in all its glory and horrors.  On the day Dan and I arrived here, I had been walking through the muck of our beach, picking up sticks and leaves, clearing the sandy path and then swam out into the deep.  I felt a tingling between my big toe and as I treaded water on my back, I held out my foot to take a look.  There was a slimy black thing.  At first, I thought it was a leaf, but then, as it shimmied to the bottom of my foot, I could see it was no such thing and I proceeded to remove it, which I did with some difficulty.  If you ever happen to get a leech on your foot, for future reference, look for the small end of its body – that’s where its mouth and main sucker is located – then gently use your finger to lift the sucker to the side, thereby ensuring its tiny jaws do not remain lodged into your flesh.  I had no such issues but was certainly put off by the incident.  I asked our new neighbours on both sides, “Hey, have you noticed leeches around here?”  Both sets were surprised.

“I’ve been coming here my whole life,” said a woman with grown children, “and I’ve maybe ever had two.”

“Nope! None over here.  I guess it’s just at your leech beach!” another man teased me.

Well, I’m glad I got my leech experience out of the way, and even if there’s more, now I know what to do.

But what can I see right now, as I write this.  I see my children catching fish with their father, one right after the other, off the end of our dock.  Just beyond, the two loons, the true owners of this lake, are gliding, diving down for their breakfast.  I see an entire glass window filled with waves; their lapping seems almost to reach my feet from where I’m perched above.  The waves stretch far across to the shore on the other side where they are greeted by trees lining the shoreline and thick up over the hilly terrain that reminds me of a roller coaster ride.  Even on an overcast day, brightness lights up the periphery of my workspace.  On days when the skies and the water are clear, it’s hard to tell the lake from the sky, the reflection a heavenly mirage.  Frogs croak, the loons croon – their eerie calls echoing into the night – blue herons fly overhead while the crows caw out in their raspy voices.  The air around here is thick with dew and I often think this is what fresh smells like.

Someone’s fish just got away.

The pines and the birch branches on our piece of land are blowing, swaying in the wind, the leaves high above rustling, irrespective of whether I’m here or not.  But bearing witness to this all, it’s quite something.

 

 

Loss: Tending to the Rose Garden

Loss.  The idea came to me in hazy form one afternoon, but I had no time to jot down notes, to ease into the topic and now it’s five a.m. and while my body needs time to boot up, so too is my brain sluggish at this time of day.  I’m becoming accustomed to early mornings; I’ve been rising early all week and attempting to make the change both mentally and physically.  It’s the time I have, so I will use it well.  And that is the idea of this blog: that what has been lost, will be found, though often regained in some other form.  We are here to talk about roses.

For every loss I’ve experienced in my life there has been something I have gained from the experience.  I can’t say this is true for everyone, but for me, this has been the case.  The key to accepting my losses and moving forward to find the good has been perspective – finding the roses.  There is no doubt gaining perspective has cost me dearly.

There are the losses I’ve experienced lately:

The loss of time; I’ve learned to appreciate the time I do have and be more flexible.

The loss of routine; we have had to reconstruct our new normal and in the process are able to appreciate the relative ease of life before when casually picking up a few items from the grocery store was no big deal.

The loss of peace; we are working on nurturing each member of our family and ourselves.  On addressing each of our needs.

The loss of space; this one is a hard one for me.  I’m still working this one out.

In the past, I’ve dealt with the loss of a loved one.  While loss isn’t easy, and even when we do gain something from that loss, that does not mean to say the pain is diminished.  Since losing my maternal grandmother, I have found new ways to connect with her after she is gone.  Through cross-stitching – an art she taught me – and thinking of her, to sensing her spirit in the rabbit outside my window.  Though she is gone, and while her loss is real and felt, our relationship has not been broken, it has been transformed.

Loss is relative.  While it is true, we will all lose our lives eventually, we have today to gain in the meantime.  Focus on what you can do today.

I once thought I had lost the child I was expecting.  I experienced a loss of normalcy and I was devastated.  Down syndrome was not what I had planned.  But over time I was able to see I had more to gain than I had ever lost.  The power of that perceived loss transformed me in ways unimaginable, has pushed me to travel and see the world, to be more accepting of those around me and to become an advocate for those of differing abilities; to be a writer and become the person I was meant to be.  I can’t say I saw all that coming when I was pregnant though.  I can’t say I saw any of it coming.  I can’t promise you that your losses will bring you great things.  But hold it in your heart that it is possible that what you perceive as a loss today, may one day be your greatest blessing.

I’m thinking about loss after finishing listening to Still: A Memoir of Love, Loss, and Motherhood by Emma Hansen.  In Still, Emma Hansen relives for us the painful experience of losing her son Reid who is stillborn at 40 weeks.  A body, a life, so fully formed, to never experience the light of day or the feel of the breeze on his skin.  There is no reconciling this loss, but Emma does survive it.  She goes on to have another baby, after much difficulty, and then at two days old this second baby turns blue and is rushed to hospital.  If you want to know what happens keep reading, if not, and you think you’d like to read the book, skip to the * below.  Because of losing Reid the way she did (he was born with a true knot in his umbilical cord) Emma and her husband had felt helpless and they were determined to be prepared for this next baby.  They had taken an infant CPR course and once home from the hospital after giving birth, Emma had been watching her baby like a hawk.  She acknowledges that the experience of losing her first child enabled her to act quickly and save the life of her second.  The beauty of Everett’s big brother Reid looking out for him from above and beyond is not lost on me here.

*Oh, hello.  We’re back together.  Loss seems irreparable, and likely the pain will dwell with you for a long time, perhaps forever.  There is no promise that the pain will recede, just that there will be more to come; there will be an after.  There is no replacing the pain, just as there is no replacing the loss of a loved one, but over time, and perhaps with a shift of perspective, there will be beauty once more; there will be new hope and transformation.

Ariel and I finished reading The Secret Garden together last night.  As two forgotten children learn to care for a forbidden garden, they form a connection, with one another and nature, that nurtures their souls.  The act of being in nature heals their broken spirits and slowly their surly dispositions turn golden as the sun they play under, and as fair as the flowers they tend to.

There is a line that stuck with me, that reminded me of loss and perspective.

“Two things cannot be in one place. “Where you tend a rose, my lad, A thistle cannot grow.””

Where you tend a rose, a thistle cannot grow.  We must, deliberately then, sprout and give rise to those thoughts which bloom into delicate ornaments.  Those are the flowers we must tend to.  Pull out the weeds, and in times of difficulty, look for the rose buds to appear.  Someone or something may come along and cut the head off those roses – that’s life – and eventually, we know the last petal will fall and we will lay to rest alongside our roses, but while we are here, why not put everything we have into minding and making our gardens bloom?

As I stare out my window right now, I see buds on the trees.  Because I got up so early, I saw the sun rise into the cloudless blue sky I’m now witnessing, and into the promise of a new day.  And I smile, having tended to my roses, and feel grateful.

Keeping the Peace

My husband and I have agreed on a common goal for our family during this time of pandemic, which is to keep everyone happy, healthy and above all else:  keep the peace.  Keeping the peace is not as easy as it sounds.  KEEP THE PEACE.  I want to shout it out loud, but that feels counterproductive.  The challenge is to keep the peace when there is just so much each member of our family could be arguing about.  It’s your turn to take the dog out.  Don’t let the dog out!  Don’t run away from him.  Stop biting me!  It’s my turn to work!  Whose socks are these?  Who didn’t flush the toilet and WHY IS THERE A FULL ROLL OF PAPER TOWEL IN THE TOILET?  Who’s fault is that?  Why does it matter?  Who’s in charge here?  Why are the kids on their ipads?  Why aren’t the kids on their ipads?  Get them outside – bring them in!  What’s for lunch?  What’s for dinner?  I don’t want this!  I don’t want that!  It’s my turn.  It’s NOT my turn.  I wanted THAT.  Here, take it – no!  Who’s doing the dishes? Who’s watching the kids?  Who’s watching the dog?  What’s he eating now?  Have they eaten?  Who’s looking after the house?  Where did this literal pile of dirt come from?  Who’s making plans?  What are the plans?  I don’t like those plans.  Who’s sleeping? Who’s awake? No one?  BE QUIET.

The noise, these days.  There is an abundance of noise in our house and in my head.  The temptation is to S-CREAM…then everything goes quiet, momentarily, but that only leaves you feeling worse.

In the past week, I’ve begun my Master’s work.  I am now officially a full-time student of creative nonfiction for the next two years, during which time I will produce my second book-length work of nonfiction, a collection of essays with a disability theme.  I’m bursting with excitement over my course work and about my project.  The challenge is finding the hours in the day to focus and let out that creative energy and get to work.  I’ve got my eye on the wee hours of the morning.  A writer’s life is truly one of solitude, and while as a mother and primary caregiver I’ve always had to balance my need for alone time to create with caring for a family – now, even more so.

I’ve been drawing strength from a remembered line of Brene Brown’s:  we’re doing the best we can.  Brene Brown eventually comes to this conclusion after being hired for a speaking engagement out of town, and then asked to share a room with what ends up being the world’s worst roommate.  Her roommate smokes INSIDE the non-smoking hotel room in the face of Brene’s protest and manages to burn a hole in the curtains; then she pulls out her snacks and after getting chip crumbs all over the couch, she wipes her greasy, chocolate-coated, hands down the armrests to tidy herself up, to name a few of her unseemly transgressions.  Yet even she is doing the best that she can, Brene Brown comes to realize.  We must allow each other grace.  Not be a pushover, but allow grace.  Brene Brown comes to understand that the way to allow others grace is to set boundaries for herself.  She no longer accepts speaking engagements where she has to share a room; that is her boundary to set.

When I want to throttle the being who put a full roll of paper towel in the toilet or the being who walked through the house with their muddy boots on after the floor’s just been mopped, or the being who sucked up all of my time to work, or who sunk their teeth into my calf or whatever it may be; I’m trying to remember my own deep breaths, while balancing the deep sighs of those around me.  Each living creature in my home has needs, every day – surprise! – not surprised – and the responsibility of these needs boils down to two people, which actually then boils down to me as manager/CEO of household affairs.  The temptation is to drop the weight so I no longer have to bear it; allow our lives to crumple at my feet.  Fend for yourselves, I’M WRITING!  I would snarl, but that isn’t really who I am or aspire to be, so instead, I pick my moments when and where I can.  I will turn to dawn for solitude.  On the day Dan and Louie have a day-long errand to run, I just let the kids be without the snarl, and they’re okay, and they learn absolutely nothing from me, other than that I have needs too, and I am completely, 100% okay with that.  Nobody died.  And nobody yelled.  We each revelled in the here and now and the ‘just be’.  We were quite content to leave each other alone for a day.

I found myself raising my voice a few too many times this past week, and not just at my own family.  We are owed an exorbitant amount of money for a cottage rental cancelled this summer and by the time I’d reach my fourth phone call with the company, after waiting an unreasonable four weeks for a clear-cut reimbursement owed to us, I lost my composure.  My argument essentially boiled down to, “Not my problem.  You do what you have to do to GET ME MY MONEY.”  This woman had no power to do any such thing, and I knew this.  We both knew it.  Even as I raised my voice to express my frustrations, I knew this.  The woman on the other end stammered her apologies and then finally transferred me to someone higher up who was able to tell me exactly what is going on with our money.  I took a deep breath and would later recoil at my own ugliness.  To be rude or emotional over the phone with a complete stranger was totally unlike me, completely out of character.  Though I can be pushy, this was beyond pushy.  This was an emotional outburst.  Well it worked.  I’m getting my money back – but in exchange for what?  I lost my inner peace.

There have been signs around me to slow down, take stock, find my way back to our mantra for peace.

In searching for publishers, I came across a promising one named Guernica.  Intrigued by the name, I looked it up, and there was the painting, Picasso’s Guernica, named after the town in Northern Spain that was destroyed by German bombers in 1937 during the war.  The painting has become a monument, a constant reminder of the tragedies of war, an anti-war symbol, and an embodiment of peace that has been dubbed ‘a plea for peace’.  I also came across the book title Are We Done Fighting?  Building Understanding in a World of Hate and Division by Matthew Legge, and I thought I could truly relate.

The feeling of peace being disrupted comes from the greater scenario at play in the background, but it also comes from my lack of solitude and the feeling that something is missing.  Sometimes an odd sensation will come over me, that feeling of looking for something misplaced, like I’ve lost something important to me.  The feeling comes over me most strongly when I’m online or scrolling through social media, trying to find what it is that I’ve lost; the irony is that it’s time and solitude, at a time when the others are sleeping and I am alone; I’m wasting what precious time I do have.

“Where is it?  Where is it?” my scrolling finger and senseless wandering seem to demand.  But I never find what I’m looking for.

I allow for one last sign to catch my attention beyond battles with the world and Picasso’s Guernica, my plea for peace.  The sign appears in my day planner, of all places.  I flop open its pages and there, staring back at me, is a simple inscription for the month of May.  Five little words: Bloom where you are planted.

And here I am.  Both feet planted firmly on the ground amid five other beings.  There is plenty of love on which to grow here, it just needs to be cultivated and harvested.  That takes grit and hard work.  Our garden needs plenty of attention, and I’m not the sun, I’m just one measly watering can trying to cover as much ground as possible, watering our patch of earth to the best of my abilities, doing the best I can.  Others are stepping in here and there, doing what they can, but I miss my full gardening crew and I bet you do too.  Many hands make light work.  We’re in a bit of a draught, but we’ll get by.  I still hear the robins chirping; I know the gardener that holds me, and he’s okay.  He’s better than okay.  Our flowers will bloom, we will tend to one another.  And the sun will shine high above us.

The Opposite of Loneliness

While tying my shoelaces up for a run, a thought popped into my head, I am not lonely.  I came to a shocking realization: I don’t experience loneliness anymore.  My family is around me 24/7, I don’t have time to feel lonely, even if I was.  It’s not that I’m particularly lonesome in my regular everyday life; my days are full and I keep good company, it was just an interesting observation that at a time when socializing is at a minimum, while there are those I miss, I am not forlorn.  My crew is solid.

To follow up on last week’s post, sorry to disappoint those readers who were actively looking for me to fall in poop (you know who you are and you know what karma is), I thought I would fall up (follow-up) with how the poop joke has played out this week.  Keep things light-hearted.

Elyse was on a virtual chat with her speech-pathologist reading sentences posted on the screen for both parties to see, when I arrived home.  While I was out running an errand, Dan reported Elyse was participating well in her session.  The minute I popped my head into the kitchen to check on things the read-aloud sentence that should have been, “Elyse went for a walk,” became, “Elyse fell in poop.”  The speech pathologist pressed their lips together and I did the same, but then as I’m much less professional, I burst out laughing.  Elyse smiled her cunning, knowing little smile and laughed at her clever joke.  She knows how to work a room, my girl.

That evening we were outside in the backyard playing as a family when Elyse tired of the game and went inside.  The first time she locked the rest of us out, I coaxed her to unlock the sliding door with a promise of fruit snacks.  Don’t judge me, it worked!  The second time, I was smart enough to grab my house keys for the front door.  After a stern talking to, I headed back outside.  We were quickly locked out again, and as we have rigged a makeshift shield to block the bottom of our fencing to protect our pup, the backyard gate can’t open so I had to hop our fence to make it to the front door.  I ended up hopping our fence three times.  Once Elyse helped herself to leftover Easter chocolate.  She held up the bag for me to see behind the locked door.  Another time, Penelope got trapped inside with Elyse.  Neither of them can open the sliding glass door, but Elyse can unlock it.  But that doesn’t help when she locks the screen door as well, because then I can’t access the glass sliding door even after she unlocks it. Oh lalalalala! (this is an expression Elyse’s EA uses in response to her comedics).  The third time Ariel had to use the bathroom, and so I made one last scramble over the fence and gave Elyse an even sterner talking to.

“This is not okay, Elyse.  Locking us out is dangerous.  You need to say sorry!  What do you say to mom?”

Looking somber and down at her toes, properly ashamed, finally having learned her lesson she said,

“Sorry, poopy.”

And I couldn’t not laugh.

And we laughed and we laughed and we hugged and I dragged her outside barefoot into the backyard and made her repeat to her dad what she had just said to me, because it was so well timed and unplanned, and it was just so damn smart.  Elyse has a wicked sense of humour and through her antics and one-liners her intelligence shines through.

Then she pulled another one over on us.  She tried the poop joke again, while chatting on the phone with her Educational Assistant, but nobody was biting.  (Oh lalalalala!)  Apres lunch, she shifted tactics.  We took an hour-long family forest walk, and upon returning Elyse took herself upstairs to her bedroom, tucked herself in, and promptly fell fast asleep.  She slept for three hours.  Being a seven-year old jokester is exhausting work.

I haven’t slid and fell in poop – yet – we’ve established.  In the past, I’ve certainly stepped in doggie doodoo, been rained on by a bird, and experienced the projectile range of a baby’s excretions while diaper changing, but I have yet to fall in poop.  Sorry to disappoint.  I did once, however, offer to close the open shed in our backyard on our way out the door to a family dinner.  The conversation from the front of our van went like this:

Me: “Shed’s open.”

Dan: “Oh.  I’m not closing it, called it.”

Me: “I got it!”  Flying out the car door.

In a mock sprint along the side of our house, I flew from the front driveway, onto the grass toward our back shed.  I was just picking up speed when I hit the grass.  One step, two steps…on the third step, my right foot gave way to the soft mud, which I slid through with all the grace of a baseball player sliding into Homeplate.  How had I not seen this coming?  The mud rode all the way up my leg, imprinted on my backside and onto my back.  I managed to avoid my hair.  Dan half hid his laughter while asking if I was okay.  I couldn’t breathe, I. Could. Not. Breathe.  Oh, lalalalala.  Laughter is the best medicine.

While I generally abstain from watching tv, in favour of reading books in the evening, lately I’ve made an exception to carve out some adult time.  And what have us adults been watching?  Comedians.  All I want to do right now is laugh.

I want to laugh and I want to be inspired.  Not in the cheesy, “you can do this!” kind of way, but in the life offering lessons and grace that awaken my writer senses.  On today’s forest walk, it was Penelope, my youngest, making me think.  She pointed to a puddle, “Are those piddows from the rain?”  But ‘piddows’ sounded more like ‘pillows’ than ‘puddles’ and so I thought about rain pillows, originally rain piddows – whatever you prefer – a wet and restful place to lay one’s head tucked into the earth.

The mispronunciation and misunderstanding of language provided by children is a source of never-ending entertainment.  My niece, around age six, once congratulated me on getting something right. She told me I “mailed it”.  My nephew, at two, called quesadillas “tasty ideas”.  These utterances came out over ten years ago, but we’re still talking about them, asking for ‘tasty ideas’ when what we really want is ‘quesadillas’ and congratulating each other with ‘mailed it’ instead of ‘nailed it’ and there has got to be a reason for that.  These memories make us smile and a smile’s just a guffaw away from something more…something uproarious and not at all unpleasant.  Something essential.

Elyse understands the value of comedy; she knows what is essential.  And she’s not afraid to let a punch line drop.  She says the thing you’re not supposed to say, but that everyone is thinking.  Her EA told me there was a student wearing overalls and some other fancy get up to school one day.  Though she’s supposed to be speaking in French at school, Elyse cut to the chase in her native tongue,

“Why are you dressed like a farmer?”

Everyone had been thinking it, her EA told me.  I think a farmer’s dress is practical and pretty snazzy, myself.

Elyse will be the one to stick her tongue out at strangers (much to our dismay), especially if it gets a laugh from the crew.  This morning it was replacing the lyrics to “move it, move it”, with “poopy, poopy” as she booty shakes her behind.  Ariel often raises her eyebrows and looks to Dan and I in response to Elyse’s pranks.  But it’s hard to make out our expressions – the harsh, chastising features that should be there, doling out parenting advice – with our faces turned away from view, shoulders hunched and bobbing, eyes squinting with tears, mouths stifling until we burst.  Let it all out.

This is the opposite of loneliness.

How the Light Gets In

There’s a shapelessness to these days that’s fatiguing.  In my dreams, the ones that I remember, I’m always elsewhere, never at home.  I’m out at a bar with my friends from high school, but something isn’t quite right, we aren’t supposed to be there.  I’m visiting a cottage with my husband, children and extended family, but an angry bear interrupts the proceedings.  Ariel races up the steps, away from the bear, I grab Elyse, as Dan goes for Penelope, and as I turn my back to flee there’s the unmistakable scream of my youngest child, but I can’t bear to look.  There’s a recurrent theme of menace and imminent danger ever-present.  Even my dreams are like nightmares.

And so we go through our days.  I texted a friend to say that I have moments of positivity and bursts of productivity and the rest of the time is like trudging through mud.  I feel bogged down, slow-moving.  I’m not alone.  Friends’ Facebook pages are filled with feelings of hopelessness and despair; it’s there, right below the surface of their posts.  The sense of idleness is maddening, and this comes, in part, because every day feels the same.  “Groundhog Day” my husband calls it.

Still, every day’s a new promise.  I retain hope and gain strength with the rise of the sun.  I try to focus on the idea, and write it down, that how I act and react during these uncertain times serves as a model for my children.  I am mindful of the idea, but I am not so virtuous as to keep the premise in the forefront of my mind and act accordingly.  My behaviour is less than ideal.  Sometimes I’m just getting by.  And getting by may mean I succeeded in planning dinner by asking my husband to order food by text while I ignore our children inside the house and go outside to play with our puppy by myself.  The kids can come outside if they want, but they don’t always want to and I’m not inclined to force them.  I’m not inclined to force anything, at the moment.  At times work feels impossible – at others – life sustaining.  There are ups and there are downs.

I am no longer competing in an ironman race this July.  I trained hard for 115 days, and I wanted to look forward to the experience at the end of the tunnel.  I deserved that; I earned it.  But even if the race goes ahead as planned, and I fear it will not, I just don’t think the vibe is going to be the same.  This is not what I wanted for my first Ironman experience, and so I’ve decided to push it to next year.  I keep training…day 116, day 117, we’ll see what happens.  I’m tired of the number of factors out of my control.  When and whether I race or choose not to race was within my control and so I took action before someone else took that decision away from me.  The training camp I signed up for is cancelled.  Our cottage stay refunded.  A summer of sameness lies out flat in front of me in the months ahead.  Unless…

Unless.  Are you familiar with that famous line from Dr. Seuss’s The Lorax?  The Onceler tells readers that, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”  Drudgery, misery, hopelessness, stagnancy…this is the easy route that takes us to no-man’s land where nothing ever happens.  Nothing good, anyway.  Those who are happy get pegged with making it look easy, but it isn’t.  Happiness takes work.  I’m not saying that everyone gets to choose; depression and mental health issues are real, but a person like me, an average person like me in good health gets to choose.  I can choose happiness, which in difficult times takes work, or I can choose the easy route.  I can choose despair.  A pandemic and the loss of normalcy seems like the perfect excuse for despair.  To do nothing.  To be nothing.  I dip down into despair from time to time.  But I don’t want to stay there.  My happiness is too important; it’s life itself.  Everyone thinks that being miserable is hard, and yes, if you’re depressed or have experienced a significant loss be it physical or financial or emotional, then yes, it is hard, life will be hard for a while, but for the rest of us misery isn’t hard, it’s easy.  You just let it happen.  Happiness is hard.  Happiness in the time of a pandemic does not arrive without grace and effort.  You have to seek out happiness, you need to find it and hold onto it tight.  You have to make it, break it, and create it all over again.  There’s also a bit of luck involved and stumbling blindly in the dark.

I find happiness waiting for me down on the floor.  I stretch out onto my back and a fifteen-pound pup comes bounding onto my chest and licks my face.  Joy bubbles forth.  I find it tucked into the pages of my course book, The Business of Becoming a Writer by Jane Friedman, or in my course work when I use my mind because I’m learning and I’m growing and I’m doing the things I love.  I find happiness in a warm embrace with my husband.  As I curl into his chest, and my fingers graze the skin of his lower back beneath his t-shirt and I feel his warmth.  Our connectedness makes me feel happy and alive.  I scribe conversations between my children, much to my own delight, like this one:

Ariel, the big sister, speaking to Penelope, the little sister who is highly attuned to any form of praise from her big sister: “You’re a genius!” This, in response to Penelope’s chosen painting methods. (Subtext, Penelope has long been referred to as our ‘genius baby’ – hard to explain the whole family backstory inside joke.  You had to be there, I guess.)

So Ariel calls Penelope a genius.

Penelope’s response is genuine: “Am I?  Because I would like to be a genius.”

Ariel: “You aren’t.”

Penelope: “I’m not?”

Ariel: “No, you’re not.”

Penelope: “Well, not anymore.”

I feel like Penelope got the last word on that one.

Then there’s the words, on repeat, that Ariel coached Elyse to say over and over.

“Mommy.  Fell.  In.  Poop.”

Never have four words in the English language elicited more laughter.

I could succumb to sadness and pity and misery.  So far during this pandemic, personally, I’ve had residencies and retreats relinquished.  Speaker engagements eradicated.  Time to write, erased.  My family has had to change our vacation plans, cut trips short after driving across an entire country, and had future travel plans cancelled.  We have dealt with lice and worms.  My children had lice and it took multiple cleanings of our house, trips to the drugstore for lice shampoo, shampooing my own hair with the foul oily mess just to be double sure I didn’t have it, and weeks of effort to rid ourselves of the tiny beasts.  Our puppy had worms.  Ringworms.  The kind that children can get that can lead to permanent damage, ravaging their little bodies.  I saw the worms with my own eyes, wiggling in the mucousy feces freshly excreted from my beloved pet.  What the hell!  I want to rage and succumb to misery.  Instead, I give my dog the dewormer pill we have on hand.  I make a few trips to Shopper’s.  I wash everyone’s hair and brush it with a fine-tooth comb that removes the eggs.  I keep an eye out for bugs from the corner of my eye.  I pick up poop the second after poop arrives so my children will not contract ringworms.  I do NOT fall in it.  I’m a mother-fucking warrior in my own home.  Fighting back not only against bugs and worms, but the dark cloud that hangs over the living room.  I do my best to push back the clouds and let in the light, like dusting away cobwebs from a forgotten corner.  I think this is what every parent is doing right now or trying their best to do.  And some days it just rains and rains.  Other days we practically have to wear shades.  I harness every bit of sunlight I can get, when I can get it.  We are healthy and we are grateful.  We are also a tiny bit lost.

I find happiness in the forest and in celebrating Earth day by reading about it with my kids and talking about conservation and making recycled crafts.  I find it in the painted rocks left along the trail by strangers.  I find happiness in making plans for the future, even as the future remains murky and unknown.  There are certain factors within our control.  While my family has picked up lice and worms, we’ve also gained a new member, our sweet puppy Louie, and who knows what else may come our way?  Haven’t we all gained a new perspective on life?

I find happiness wedged into the deep crevice of possibility; with some exertion, hard work and struggle, I break it free, hold it up against the light, and take a closer look at my prized jewel.  I see myself in the reflection; my well-being and that of my family.  My greatest treasure.  I do not have to look far to find what matters most.

I see myself reflected and I find hope and strength in the lyrics of a Leonard Cohen song:

There is a crack in everything, that’s how the light gets in.

Blog Post: The Girl Who Climbs Trees

I’m free – I’m FREE!  Fourteen days of quarantine complete!  Then it hit me.  It hit me hard.  I’m not free.  None of us are.

All of my favourite restaurants and cafes are closed.  The library and other favourite public places I frequented before, like our local recreation centre obviously have their doors shuttered.  Conservation areas are long gone.  I won’t be going on an all-day hike.  This isn’t news.  Even the basketball courts behind our house and the park – literally, the green blades of grass – are off limits. You can be fined $750 for not taking heed.

So I’m free to go…nowhere.

I found this slightly depressing the other day.  That, and that all is not well in paradise.  The children are fine, but they need caring for – constantly!  Can you imagine?  Excuse me while I exhale loudly, but it’s tough when you’ve built a life around working to suddenly have to halt that existence and become a teacher and full-time parent.  I left classroom teaching because I wanted to write.  Dan never became a teacher or professor, unlike his wife, mother, father and two sisters, because that wasn’t his jam.  I’m sure he misses life on the road (though he tells me otherwise), but what he surely does miss is a full workday without interruption.  The time and space to work.  He was awake in a panic the other night, stewing.  He couldn’t get back to sleep for a while.  Those who know my husband, and know him well, know that he can sleep ANYWHERE.  While sitting up facing you mid-conversation.  During an intake meeting with his child’s therapist.  While working, during a colleague’s presentation or mid-conference speaker.  Dan is the king of cat naps.  Him staying awake in the middle of the night was like a wakeup call for me as to the seriousness, and potentially long time, we are all going to be snuggled in bed tight, lying awake together.  Dan enjoys spending time with his kids, like I enjoy it, but there’s the stress and nagging feeling that he’s supposed to be working.

I get it, because I feel it, too.

If you think I should be the one to teacher our kids all day so Dan can work unencumbered as usual, and poo poo to building my career as a writer, then you’re not only sexist, but I don’t like you very much (and there aren’t many people I don’t like).  I’m sick of being told what I should or shouldn’t do by not only men, but other women too.  The sad truth is, for many women during this pandemic, this is their reality.  Like so many issues coming to light in society right now, the inequalities between men and women are certainly one of them.  Who do you think is more expected to be taking care of the children now that we are all home?  Many women are not only expected to work full time from home, but to also simultaneously take care of their families and be their child’s teacher.  I’m having a hard-enough time trying to cook and organize lunches and dinners every day, and mostly Dan is making the dinners, let alone trying to do it while teaching my kids and holding on to a semblance of my past life.  One thing at a time.  I’ve done this circus shit before, and I thought I was done with it on the 24/7 schedule.  Juggling balls all day long is exhausting.  We’re all new mothers again with newborns that need constant care.  And my kids aren’t even being that demanding, they’re just – there.

I have two solutions to all of this.  This is what works for me – this is how I’m dealing with things.  To each their own.  The first is to climb trees. WHAT? am I talking about?  I saw a perfect tree the other day and it called out to me, try and climb me.  The tree beckoned.  I looked around – no one – and decided to give it a whirl.  But here’s the thing about right now: I feel drained of strength.  Every task, big or small, requires momentous effort.  The slow leak of stress is muscle-deflating.  Nevertheless, I did a half jump, and pushing off the trunk with one hand I was able to grab a branch with the other – but that was it.  I couldn’t make it any further.  My legs remained weighted to the ground.  Huh, tree climbing was harder than I remembered.  I think I was hoping to get my feet up off the ground – is it just me or does it seem like there are germs everywhere that could hurt us?  I wanted to get my feet up off the ground and sit perched up there in that tree where I could look out, scan the horizon, get the lay of the land.  We are so clustered in our homes at the moment, and I get the whole staying safe at home – I advocate for it – versus stuck at home.  But there’s no way around sometimes feeling stuck at home.  I wanted to climb way up high, up and away from this mess toward the bright blue sky above me.  But I didn’t make it.  I’m still stuck feet on the ground.

The second solution I have is to give in, to succumb.  And to do so, for me, involves getting a puppy.  A PUPPY?  WHAT??!! How is that less responsibility, you ask?  Why is that the right answer?  Well, here are my reasons.  Our kids have been bugging us for a pet.  I miss my dog.  I have wanted a puppy since Oreo died and we are now all home.  It seems like a perfect time to puppy train.  We won’t be flying anywhere for a while!  Taking a dog out on walks gets us out.  Eventually, god knows when, everyone will go back to school and I’ll be left to my own devices and then I’ll be terribly, terribly lonely.  I like the idea of a pet we can all bond with as a family.  Of bringing more love into our family and our lives.

With more love, of course, comes more responsibility. And who wants more responsibility during a pandemic?  Not my husband.  Me, I’m just looking for an escape.  Take me to the land of puppies, please!  Yes, that is where I’d like to go.

Getting a puppy will be a beautiful distraction.  A messy, big-responsibility, huge and beautiful distraction.  I’m worse than the pigeon who wants a puppy (book by children’s author Mo Willems – look it up if you haven’t read), WAY worse.  I’d gladly accept a walrus at this point.

Anything to shake me out of the reverie of this nightmare.

To you and your family, be well.

Puppy pictures to follow, fingers crossed (my husband is shaking his head).

Update: We got our boy!  Meet Louie, an 8.5 week old vizsla puppy.  I have three happy girls, and Dan is thrilled.

 

Blog Post: We Will Get Through This

Ten days.  My family has been in quarantine for ten days.  That’s less time than many who began physical distancing at the start of the March break, and longer than the last stragglers making their way back into the country.  While my family is not struggling in the ways some are struggling, we each have our own internal battles, in the backs of our minds, taking hold.

I am an extrovert who NEEDS time to herself.  In the presence of others, I’m like a windup toy, bouncing off external energy, then slowly I begin to leak power until I come to a standstill.  The only way to wind me back up again is to give me peace and quiet.  Alone time.  Being around my family twenty-four seven is draining for an extroverted-introvert like me.  I’m constantly being wound up.  Too much touching, too many hands.

Being around my husband all-day long can be trying.  We often categorize children as taking most of our time and energy, and true-that, but adults demand more attention than you think.  The drain is more mental.  More than once, I’ve had to remind myself to be nice.  Like a caged animal I want to lash out, “Give me space, get away from me!”  And, I love you.  We face contradictory truths.  In our past life, pre-Covid, I would notice how quiet my evenings were when Dan travelled for work and wasn’t around.  I would miss our dinner banter then, and of course miss him when it was time to turn the lights out, but I got used to fending for myself and my kids.  Together time 24/7 takes a whole new level of getting used to.  Luckily, we have some practice under our belt.

This period of intense together time we are experiencing now is not unlike our experience traveling the world together; then, as now, we were confined to each other, but now we’re doing so at home instead of out in the world.  It’s a good thing we like each other.  Love is one thing, but those who don’t like their partners are likely facing additional hardships right now.

For the record, this trip atmosphere stinks compared to the last one.

Don’t get me wrong, I have moments, as many do, of feeling like this whole mess is great fun; I pretend like we are actually travelling the world again – my husband is around all day, we work through our days as a team and get to talk and play with our kids.  We take turns working from home.  Many families are for the first time enjoying endless hours of together time – and what could be bad about that?  If only these hours weren’t underlined by a global pandemic and mild panic that lies there, just below the surface.

Some days, I have fleeting thoughts of revolt and flight.  Case in point, what I really want to do when our quarantine time is up is go on a massive eight to ten-hour hike in the forest.  By myself.

We all must find ways to recharge our batteries.  Friends of ours who rarely fight had a ridiculous blow out the other day because one person just could not sit still.  As he is not in quarantine, he finally found a food bank where he could volunteer for a day just to get out of the house.

While my personal boundaries feel breached, stretched and distorted, I know others are dealing with concerns of a higher order:  with sickness, isolation, financial hardship, the loss of livelihood, anxiety and even death.  So my writer’s retreat had to be rescheduled.  So my Masters residency was moved from a week in Halifax to online (sigh, I’m still grieving that one), there are WAY WORSE THINGS.  I am not the person to trivialize another’s plight, be it a hangnail or a barely hanging on, but I’m comfortable speaking for myself in saying, “yes, Adelle, there are some things in your life that suck right now.  Sometimes it feels like each of the four other members of your family are breathing down your neck (because sometimes they literally are) and that they are climbing onto your shoulders and sitting on your head (that too), squishing your very soul (a bit of an exaggeration), but as long as you are healthy and together, you will get through this.”  Truly, I could not imagine spending quarantine with a better crew.

There’s a beautiful poem by Jack Gilbert called A Brief For The Defense about continuing to find delight in our world anyway, even, especially, in the face of hardship.  His words are apt in these times:

Sorrow everywhere.  Slaughter everywhere.  If babies/ are not starving someplace, they are starving somewhere else.  With flies in their nostrils, he begins.  Later comes my favourite lines:

We must risk delight.  We can do without pleasure,/  but not delight.  Not enjoyment.  We must have/ the stubbornness to accept our gladness in the ruthless furnace of this world.

And so I continue to train for my triathlon that might get cancelled anyway.  I have elastic resistance bands attached to my banister so that I can simulate swim training.  We adapt.  I will continue to mail out my book manuscript even though there are no publishers in the office to receive it.  I will take joy in the signs of spring outside my window and I will share that joy with my three children who bring me hope every single day.  We will celebrate – risk delighting – in the twittering robins, the first mosses, patches of grass, under grey skies and heavy rain.  I will not let one day go by where I bemoan my life, this great gift I have been given.  I will allow myself frustrations, true pain as it arises, but I will not deny myself delight.  We cannot allow ourselves paralysis indefinitely.  Or you can, if that’s what you need – you can – but why would you want to?  The world goes on.  Those who can go on, must.  We will get through this.

Not Coronavirus: What? Syndrome

Author’s Note: I wrote this as mounting tensions over Covid-19 were rising.  I don’t want to appear insensitive or unaware of the current pandemic situation, but when life goes on – and regular life will go on – there will be other things to discuss and what follows is part of a dialogue from a conversation I’d like to have.  Grab a chair and lend me your ear.

Why is it that certain service providers and businesses act like people with disabilities don’t exist?

If my daughter with Down syndrome wants to go to camp, and she needs some support to be there, whose responsibility is it to arrange and pay for that support?  Without getting into the legalities, who do you think should have to do this?  What feels right to you?

Written into the Ontario Human Rights Code under The Ontario Human Rights Commission:

“…service providers have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.  Accommodation is necessary to ensure that people with disabilities have equal opportunities, access and benefits.  Employment, housing, services and facilities should be designed inclusively and must be adapted to accommodate the needs of a person with a disability in a way that promotes integration and full participation.”

I am no legal expert, but when I read that, I think, ya, businesses are supposed to be designed in a way that anticipates the range of human existence.  The needs of people with Down syndrome should not be an afterthought.

I am no legal expert, and that is why I’m talking to a lawyer – who is – and will hopefully be able to give me a definitive answer to my camp question, regarding support, but I know what feels right and what doesn’t.  And being told I would have to pay for a support person to accompany my daughter to camp definitely doesn’t feel right; it feels like a slap to the face.  Like the person making the statement doesn’t know my daughter at all (because they don’t).  Like the person is making assumptions and generalizations without asking any questions (because they are).  Like society doesn’t care about inclusion.  Like inclusion is a myth.  There’s money I can access to pay for this support person, but then there will of course be less money for other more essential services, like speech therapy for example; but this is about more than money.  My question isn’t just about who pays.  The costs are much higher than that.

For a child with disabilities to be able to participate in a camp setting or community program, I view putting all of the onus on parents to provide that support as a lousy thing to do.  If you send your typical kid to rock climbing camp, you aren’t expected to bring your own ropes and harnesses, which is what it takes to be able to participate in rock climbing camp.  If we say we are an inclusive society, or if we truly want to be (which we should) then camps should hire extra staff to help meet the needs of kids with varying abilities.  The best part of this approach is that every camper would benefit, and this my friends, is called ‘Universal Design’.

When I approach a new program for Elyse, I want to know what the business is doing on their end to accommodate my child, but I am also sure to ask what can I do?  I don’t mind meeting halfway; I view any setting between a child and a care provider as a partnership, which means both sides have responsibilities.  My responsibility is to help that setting get to know my child; their responsibility is to do the rest.  Elyse does need some degree of support; but it’s all in the way an organization goes about offering it (or not).

Here’s a great example of a partnership that worked.  Before the start of summer gymnastics camp, we signed Elyse up for a regular gymnastics class session so that she knew the staff, and they knew her.  We then enrolled her in that same gymnastics club’s summer camp during a week that was less busy, because we had that flexibility, and in return, the club matched Elyse with a coach whose style and personality jived.  The club was flexible in making sure Elyse’s needs were met without impacting the group dynamics or causing undue harm or hardship.  She did not need a one-on-one support person, but what she did need was a mature coach and a group effort and consensus to keep an extra eye on her.  The coaches did this because they are doing their very best to uphold the values of inclusion and the principles that when we support our most vulnerable and we are a community that looks after each other, then everyone benefits because everyone belongs.

Likewise, our community swim program has been phenomenal.  Year after year, I contact them in regard to registration and mention that Elyse has Down syndrome.  I then discuss Elyse’s specific needs, because – hello – not all people with Down syndrome are the same!  I explain her needs, am flexibly on timing and then Halton Hills recreational staff make sure Elyse either has one-on-one or that there is a volunteer extra staff available to help her in a group setting should she need it.  This has been at no extra cost to us.  This inclusive set up makes us feel welcome and valued in our community.

But not every community program is so wonderful and not every camp knows Elyse and wants to help us out.  The consensus across Ontario is not always a ‘we’, but often still an ‘us vs. them’ mentality.  Friends of ours have mentioned they were turned away from daycares, for example, because their child has Down syndrome.  Why is this happening?  It shouldn’t be.

I now have the correct label for this phenomenon.  I wrote about discrimination in another recent blog post, but that’s not exactly what this is.  The proper term is ‘ableism’ and ‘ableist attitudes’.

From the Ontario Human Rights Commission (OHRC):

“Ableism may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.  Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.  It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities.”

This, all of this, yes.  Unfortunately, though steps have been taken to try and help bridge the gap, there exists a chasm between the abled and the disabled; the gaping hole that remains is in our attitudes towards those with disabilities.  Sure, throw some money at us – the families who have children with disabilities – we will take it, but it is outdated attitudes and stereotypes that are weighing on us heavily and truly holding our children back.

Expectations, and the expectations we hold for individuals, matter.  There is a slew of research on the impacts of our expectations in regard to outcome and performance, but what you need to know is this:  when we believe that someone can do better, they do better.  When we set our expectations high, individuals tend to perform better.  When we set people with Down syndrome and their families up for success, by putting supports in place that do not cause undue hardship to families rather than just worrying about businesses, then society wins.

Do I want to see a business collapse under the weight of supporting my child?  No.  But that is so far from the case, regardless.  Do I want to see a service, such as a camp, act surprised when I come knocking at their door with my child with Down syndrome?  1 in 800 Canadians are born with Down syndrome – why should anyone be surprised?

Again, from the OHRC:

“Ableist attitudes are often based on the view that disability is an “anomaly to normalcy,” rather than an inherent and expected variation in the human condition.”

People with Down syndrome have always existed.  In every race, gender, socio-economic status and across time.  For those who haven’t already, it is time for businesses and service providers to wake up and plan for the diversity of the children who will arrive at their doorsteps.  Do not put undue hardship on families.

Maybe this is all too impersonal.  Too preachy and utopian.  I don’t think so.  I know we can do better.

And here’s why we should.

Emily and I are giving a talk in a school.  The kids absolutely love her and want to be around her.  Emily is a former Special Olympian rhythmic gymnast with a sparkle in her bright blue eyes and a wit to match.  After our talk is over, a kindergarten class fills the gym and the teacher pulls out a parachute.  While I’m busy chatting, Emily, without missing a beat, joins in with the Kindergartens, shaking and lifting the parachute much to their delight.

On our drive home, I ask her why she did that – joined in at the parachute.

“Because,” she said, “I like to do that, and it’s been a while.”

How many adults do the things they really want to do when it comes to play?  I aspire to be that person, but I don’t always succeed.

There are so many lessons to learn in the breadth of humanity.  We need to be bringing more people in, hearing what they have to say, rather than keeping people out and turning them away.  I have learned more from the experience of having my daughter Elyse than from any education a higher institution could provide.  Some things – love, for example – cannot be measured or quantified or taught.  Some things are mostly felt and there are certainly those individuals more equipped to teach us.

When it comes to supporting each other, building inclusive communities, and the attitudes that pervade, businesses and service providers shouldn’t be worrying about whether they’ve done enough to meet the status quo or minimum standards (though they should make sure they have done at least that) – but whether they can do more.