tightly wound since 1993

IMG_4817I know where I belong, and it is 11 hours and 25 minutes from where I reside.

I live in Edmonton, a dusty, but frantic, prairie city in the middle of Oil Country, Canada’s Texas.  We holiday in Naramata, a hippy village perched on the east bank of Okanagan Lake in beautiful British Columbia.  Naramata sparkles with a patchwork of vineyards, fruit orchards, and the clear water below.  My youngest son, age 11, announces:  “this place has a nice view, Mom!”  And so it does.

Naramata has been proclaimed a slow city, including all 2,000 inhabitants who are a motley mixture of peacocks, dudes in pickup trucks with big dogs, young French Canadians with dreadlocks, old left-leaning types (aka the locals), and the tony folks who own the million plus dollar houses on the Bench that nest over the tiny village.

We spend a chunk of each summer here.  We rent a friend’s mom’s place.  We housesit for my old boss.  We stay with my father-in-law across the lake in Summerland.   We will do anything to spend time in Naramata.  This year, we have rented a perfect little cottage in the flats, a two minute walk to the weekly farmers’ market and the pier, where Aaron climbs to the top railing and cannonballs into the smooth, clear water.

The cottage is obviously a grandma’s old house.  I wonder when she passed away.  The new owner has put in new lino and laminate.  The walls are painted a beachy light blue and yellow.  When we drive up, we shout with glee at the unexpected hot tub and fire pit.  I’m enamoured with the clothesline in the back, which isn’t allowed back in my Edmonton suburb.

There is an elderly lady living next door.  Rae is originally from New Zealand, and spends her days puttering in her garden.  She leaves baskets of warm freshly picked cherries on our back table.  One day she knocks on the door with two handfuls of raspberries in her garden-dirty hands.  These are only for you, she whispers.  I know how much work it is to be a mom.  My eyes tear up in gratitude.

Aaron laps up being unscheduled.  He gets up and watched Rio 2 on his iPad.  He sets up his ziplock bag of Batman and Shrek figurines and coordinates a dance party to Pitbull music.  He sits in his bedroom and reads anatomy books.  He wears his goggles in the hot tub and snorkels for invisible fish.  He gets dressed on his own, with no nagging from me at all.  He’s proudly figured out how to open a Fanta pop all by himself. He has me post pictures on his Facebook, all with a similar caption:  “I am the most awesome dude in the house.”  And that he is.

My newly-graduated daughter and her boyfriend arrive for a week.  We go floating on inner tubes in the river canal and shriek when we get seaweed stuck in our feet.   We take them to Salty’s in town for fish tacos.  We watch the salmon jump off the dam.  They go go-carting and spray each other on the bumper boats.  Ella and I go to the spa for leisurely massages.  Mike and I escape for twinkly-light and wine-filled evening with Joy Road Catering at the aptly-named God’s Mountain.  When the older teenagers leave for their own camping adventures, I feel the pang of missing them.  Ella has written, “Yay!  Holiday! Bye family!  Love you!  Have fun!” on the chalkboard in the kitchen.

We even have friends here.  We consume a goat-cheese and basil trout, charred vegetables and strawberry and rhubarb crumble feast with a food writer friend, her husband and their lively house guests up the hill.  My husband goes mountain biking with a work colleague, and he and his partner come over for a vegan spread of carefully chopped medley of watermelon, raw corn & mango and potato salads.  Our Edmonton pals have a boat and we zoom around a southern lake with them in the hot sun, while the kids jump off the boat and the moms supplement their coolers with extra vodka.

Here, the furrows leave my forehead.  My shoulder migrate from under my ears and settle back in their natural place.  I stop fretting about the next meal, or the cleanliness of Aaron’s face, or the sticky floors in the cottage.  My biggest concern becomes what should we pack for a day at the beach.  I’m only right here, in the moment, because that’s all I have, in this limited, precious time.

I’ve been tightly wound since 1993.  In Naramata, I finally, finally relax.  My only question now is this:  how do I bottle this vacation nirvana and transport it back home?


weekly love, july 18

Here’s what I liked this week:

This Babble piece by Ellen Seidman is about raising kids who care about people with disabilities.  It is a good one.

I’ve been following the journey of Jacqui and Dan on Instagram.  Their little boy Ryan died tragically in June, and their story is one of sorrow and grace.

Kate Baer wrote a perfect essay about being tightly wound.  My kids are now 11, 17 and 20, but I’m STILL tightly wound.  I think that I became this way when they were little, and it is time that I figured out how to unlearn it.  Keeping focused on the moment really does help.

Woman Stuff
I love this Australian campaign called Embrace, to fund a documentary to promote women loving their bodies.  I think that it is never healthy for any woman to hate her body.   For those of us with daughters, the interviews of women describing their bodies is especially chilling.

Similarly, Calla Thomson Wright wrote an essay about loving Thunder Thighs.  This is an impressive piece of reflective writing from a writer of any age – but even more so because Calla is only 21.



The Down Syndrome Talk


Aaron in Grade 1.

Aaron in Grade 1.

When Aaron was in grade one, he was having troubles with some of his classmates.  The teacher witnessed a group of the other boys egging Aaron on.  They’d encourage him to do silly things or make weird sounds, and then laugh and laugh.  My son happily participated, thinking that the boys were laughing with him.  The sad fact was that they were laughing at him, not with him.

This was the beginning of his social exclusion.

Luckily, Aaron had a great teacher in grade one.  She was seasoned but open to learning more about Down syndrome and most importantly, she believed in Aaron.  She’d seen this Lord of the Flies behaviour before, and suggested that we have the Down syndrome talk with the students, hoping that encouraging understanding of Aaron would foster compassion.

I worked with the school board’s behaviour consultant to come up with a plan for THE TALK.  I had a book that was perfect:  It’s OK to be different by Todd Parr.  This is a super book.  It isn’t specific to Down syndrome, but it talks about all the ways children are the same and different.  I’d recommend it for any classroom that is thinking about having a discussion with their students about any differences.

The day came for THE TALK. I stood at the back of the classroom, sweating and fraught with anxiety.  I spoke to Aaron about Down syndrome earlier in the day.  He was only six, and I wasn’t sure how much he understood.  I told him that he needed a helper in class because he had Down syndrome, and that he was born that way.

The consultant read Todd Parr’s book.  Then she asked the kids how they were different.  Now, this happened to be a very multicultural class, so many kids proudly answered:  I was born in Africa!  I was born in India!  When it came to Aaron’s turn, he said:  I love hockey!  Then the consultant gently said:  another way that Aaron is different is that he has Down syndrome.  She asked the class, ‘what do you know about Down syndrome?’

The first answer came from a boy (who I will call kid #1) who had history of treating Aaron with disrespect.  He said, with great distain:

Down syndrome means you cannot control yourself and that you make weird noises.

I almost passed out in the back of the room.   My worst nightmare had came true.  I had witnessed this boy mock other kids who played with Aaron, asking them:  why do you want to play with him, anyhow?  Of course he had something negative to say about Down syndrome.

But then, something wonderful happened.  Another boy, kid #2, put up his hand.

Having Down syndrome means that you learn differently, and you just need some extra help and patience.

Tears of gratitude sprang to my eyes.  This young boy had hosted Aaron at his house for playdates.  He knew Aaron as a boy, not as just a diagnosis, or someone different to be afraid of.  The consultant jumped on his comment, and finished the discussion in a positive way by explaining that Down syndrome was something you were born with, that it wasn’t contagious, and yes, that people with Down syndrome need extra time and help to learn.  And that was that.

We survived THE TALK.  Aaron didn’t seem worse for wear.  But the kid #1′s comments upset me for a long time.  We pulled Aaron from that school two years later, in part because of a lack of support from the families in the community.  Kid #2′s family ended up moving away, and that was a big loss for Aaron.

I realized a few things from the experience of THE TALK:

  1. Better to explain differences than to just leave them unsaid.  That way you can address myths or misunderstandings head-on, and not let them fester in negative behaviours.
  2. Use a book like It’s OK to be different for the younger grades.  That way you can gently introduce the fact that ALL kids are different, not just kids with disabilities.
  3. With a group of young children, I wouldn’t just throw out an open question about disability and hope for the best.  I think guiding the conversation is less risky – explaining Down syndrome in simple terms, and then asking if kids had questions might be a better tact.
  4. I believe in involving Aaron in THE TALK, but that’s a personal family decision.  Some people don’t tell their kids about their disability, out of concern that they don’t want them to feel different.  Having a kid with a visible disability forces that conversation a bit – we’ve always chosen to be open with him about his difference.  One day, in a discussion about differences, I hope that he can pipe up:  I have Down syndrome as proudly as a kid might say:  I was born in India.  That’s part of who he is, and I want him to embrace his identity.

My most important lesson came from kid #2.   I realized that kids learn their attitudes from their parents.  Kid #2′s mom was an Occupational Therapist and his dad was a physician.  But more importantly, his mom had an uncle who had Down syndrome, so disability was just a part of their family lives.  They had obviously spoken to him about patience and compassion for people who had differences.  I talked to his mom later about her son’s response at THE TALK and thanked her for raising such a kind boy.  Empathy was taught and encouraged in that family.

Kid #1′s comments still haunt me four years later.  Although we moved neighbourhoods and schools, we still run into this family.  Both parents won’t make eye contact with Aaron.  Ironically, the mom is a physician, too, and the father is in a high profile position at the university.  Achievement and status is what’s important to them, not compassion.  I’ve spent many hours of wasted energy thinking about them, and after writing this post, I’ve finally decided to let it go.

Let’s channel our energy into people who believe in our children.  The others simply aren’t worth our time.  Thank you to all families like kid #2′s family who teach their children how to be compassionate and accepting of people with differences.  Those are the kind of people who are going to make a positive impact on this world.

weekly love

The Internet has become an unwieldy place since I first ventured into it in 1997.  That’s why I like Twitter, blog readers, and weekly round-ups – these tools distill a lot of information and curate the Internet for me.

Two of my favourite blogs have regular weekly round-ups of links on the Internet: Dooce’s clever and Twitter-profanity-filled Stuff I found while looking around, and the more subdued Weekend Reads from Becoming Minimalist.

Here are my choices for some Weekly Love for you.  Yeah, it is going to be mostly links about motherhood, and loving someone with differences.  But I also like posts about food, slowing down, patient centred care, and the simple life, too.  So here goes:

Mom stuff:

A leak in the system from Mary Evelyn Smith’s What do you do dear? – a poignant piece about how society views kids with disabilities – through the eyes of a little girl.

If healthy pregnancies were treated like special needs pregnancies by Wifeytini’s Sarah Watts.  This baby has gone viral in our community – a funny and stinging commentary about the medical system.

Watching the shadows by Louise Kinross, editor at the Bloom blog.  I love this piece about the joy of a simple walk with her beloved boy.

Fun stuff:

I cannot stop listening to the Heart and the Head.  Once upon a time I wrote song lyrics for a band, and this music makes me pine for those days.

This John Legend video made me weep and wish hard that my daughter loves herself, just the beautiful way she is.  And that my sons love their women in the same way.

I want to see this, badly. Will be patient until December 5.


Elf and the System

All My Puny Sorrows is the latest novel from Miriam Toews. My two degrees of separation from Miriam is that she is friends with my good pal and writer Melissa Steele. I met Miriam once when she was playing pool in a bar on Corydon Avenue in Winnipeg. (It’s a tenuous connection with fame, but that’s all I have).

Corydon Avenue is featured in her newest book, as are a number of Winnipeg landmarks like the Assiniboine River, and a thinly veiled hospital on the French side of the river. It is at this hospital that Miriam’s protagonist, Yoli, visits her sister Elf. Elf has been admitted to the psychiatric ward after a stint in the ICU following a suicide attempt.

This is a sad book, touched with desperation and humour. Yoli wants her sister to live, or at the very least to die in peace and surrounded by loved ones. Elf is determined to die by suicide. Elf’s will is strong.

I was struck by the passages in All My Puny Sorrows that recounted experiences in the psychiatric ward. The encounters with the nurses and psychiatrists were, for the most part (and ironically), dark and depressing.

There are restrictive visiting hours for families and a ban on food. The nurses at the desk serve to stand guard to grill visitors. The only reprieve from the hardened staff is one psych nurse named Janice, who wears light pink track suits and tangos on her days off. She also doles out important hugs to family members.

Otherwise, the time and the people in the psych unit are bleak. The attending psychiatrist refuses to treat Elf and her ‘silly games,’ nurses are experts at avoiding eye contact with pleading family members, and finally, it is the uncaring system that lets Elf and her family down in the end.

This is a work of fiction, so it is fair to question if the treatment of the mental health experience is accurate.   But All My Puny Sorrows is also a deeply personal novel for Miriam Toews, as her own sister Majorie died by suicide four years ago.   So yes, I would assume that there is more than a glimmer of truth in her words.

Half way through the book, Yoli issues a plea for what her sister needs from the mental health professionals entrusted in her sister’s care:

“Imagine a psychiatrist setting down with a broken human being saying, I am here for you, I am committed to your care, I want to make you feel better, I want to return your joy to you, I don’t know how I will do it but I will find out and then I will apply one hundred percent of my abilities, my training, my compassion and my curiosity to your health – to your well being, to your joy.”

Isn’t that a beautiful sentiment for all health professionals? But that never happened for Elf, or a multitude of other patients who slip through the health system not feeling cared for.  For Elf, that crack in the system leads her to her end.

All My Puny Sorrows is an examination of a sister’s bond, a family’s love for each other and growing up Mennonite. It is also a mournful commentary of our broken mental health system. I am grateful for those who apply their compassion and training to their patients’ well being. I personally know of three exceptional nurses who work in mental health – Lisa, Heike and Laurene – how do we bottle their passion for their patients, and share it with their colleagues?

For those who don’t, or can’t, demonstrate compassion – can we educate people to care? Can we teach empathy? Is there a way to open up a heart to understand the perspective of who may be the toughest patients of them all – those with mental health illness?

I don’t know the answers to any of these questions, but I’ll keep preaching about kindness and compassion to students, health professionals, and anyone who will listen.  All My Puny Sorrows is a stark reminder that we need to keep trying to find the answers: for all the Elfs of the world, and for the thousands of patients in Canada who struggle with mental illness every single day.


the eldest son has returned

myboysMy eldest son has returned home from a five week band tour of 26 cities and 30 shows.  He zigged across America to New York City in his black van crammed with band members then zagged back to LA and then zoomed up the west coast to Canada.  In the pictures I saw on Facebook, he grew a fuzzy beard and appeared to wear the same slowly deteriorating sleeveless t-shirt for several weeks at a time.  As I wrote last December, he’s still far from my tree.

He’s in between tours, so he’s living in the back of his van, sleeping on a futon mattress shoved between the seats.  He’s parked in a friend’s alley, and uses their kitchen and bathroom for a weekly fee.  When he was 14 and had a faux-hawk, he used to tease me and say that when he grew up, he wanted to live in a van by the side of the river.

I realize now that he wasn’t kidding.

I pick him up for our lunch date at a prescribed street corner.  I’m happy to see you, I say, as he folds himself into the car.  He turns to me and a wide grin spreads across his face, I’m happy to see you too, Mom, he says.  He’s relaxed, tanned, and in wiry shape.  His little brother Aaron is with us, and he’s greeted with a rousing ‘Hey Goose’ and a high five.  (Goose is his pet name for Aaron, as in, Silly Goose). There’s some friendly razzing, arm punching and an impromptu burping contest.

Let’s do Indian food, my eldest exclaims and we are off to an all-you-can-eat buffet, where we happily tuck in plates of garlic naan, vegetable pakora, dal and chickpea curry.  He and Aaron slurp mango juice and wrestle in the restaurant booth.

How was your tour?  I ask, not able to fathom a road trip of such epic proportions.  He’s 25 years my junior and has been to more American cities and towns that I can ever hope to see in my lifetime.  His eyes are brightly shining – it was pretty consistently exciting, he says.

Most of us live our lives small, and in fear – all in the name of being comfortable and stable.  My son has not taken that route.  He lives life large and out loud.  He’s worked steadily at a job since he was 15, saving money to buy drum sticks, a dilapidated van (which he can’t even drive since he doesn’t have his license – it is instead the band’s van) and gas money to go on tour.  He works to tour.  He’s the most ambitious and driven person I know.  He is unapologetic about doing what he loves.  And he lives free from fear of judgment.  I’ve realized that fear of judgment is what keeps the rest of us small.

After our lunch, I drop the two brothers at a movie.  My eldest, 6’2″, ambles beside tiny Aaron.  They have a pocketful of change to play video games.  My musician son has his arm draped casually across his youngest brother’s shoulder.  My tears well up seeing this tender gesture, and afterwards, I sit in the car for a long time.  I have one adult son – wild, unencumbered & resistant of authority.  My youngest son, born with an extra chromosome,  is persistent and full of life.

Here I am, a suburban mom, closing in on fifty, and I’m learning life lessons from my young, diverse sons.  Here’s what they’ve taught me – they nudge me subtly and gently towards this question:  Mom, what would you do if you weren’t afraid?   



thanking teachers



Today is Aaron’s last day of Grade 5.  Every school year is a bumpy year for him, and my emotional pendulum from September to June swings from feeling totally despondent to feeling incredibly grateful for Aaron’s school experience.  I’m on the incredibly grateful side of the spectrum today.

Last week, we had the ‘transition to Grade 6′ meeting with his Grade 5 teachers and the administration.  As is my way, I wept at that school meeting, but this time I didn’t cry out of frustration and anger.  I teared up out of deep gratitude for the teachers and the Assistant Principal for the effort they poured into teaching Aaron this year.

They never gave up on him, even during his darkest days in December, when a cold snap resulted in no outdoor recess, he had to share his Educational Assistant with a new student, he had increased academic pressure and way too many Christmas concert rehearsals.  These factors, along with excitement over Santa’s impending arrival, threw him totally off-balance (and was reflected in his behaviour).   I knew the teachers were feeling frustrated, but after a meeting to talk proactive strategies for success, things brightened in the new year.

Are things perfect at school for Aaron?  No.  Most of the imperfections come from troubles in the system:  large class sizes, lack of time for teachers to adapt curriculum, better education about how disability can affect learning and behaviour.  Is school ever easy for Aaron?  No, but he’s learning how to be a good student.  Sitting in a desk and ‘behaving’ does not come naturally to him.  But he will give it his best effort if he senses that he has teachers who set high expectations for him.    And this year he did.

I took the time to write long letters to each of his teachers, his Educational Assistant, and his Assistant Principal this year.  I believe in the Thank You Project for educational professionals too.  After all, their impact on Aaron is profound – they spend six hours a day with him, ten months out of the year.  I really wanted to express my gratitude to them, in a more substantial way than a ‘thank you’ and gift card.

For his Educational Assistant:

You teach him, you care for him, you give him confidence, you make him laugh, and you help him be as successful as he can in school. You always have a beautiful smile, even if I know you must have had a frustrating day – I never see it show – you have such grace in that way.

For his teachers:

I so appreciate your efforts to assess his ability, and to modify the curriculum for him – particularly in math, which has classically been a trouble spot for him. I have never seen him express his own enthusiasm for math before!

You are one of those exceptional people who see the good in others, and make people feel like they are all special. That is a very powerful gift, particularly for young students, whose sense of identity is just being formed.

Thank you Anne, Robyn, Terry, Scott and Terry for being a part of Aaron’s team.  Thank you for never writing him off or giving up on him.  Thank you for believing in my boy, nurturing his spirit and keeping his love of learning alive.

adventures in birthing

We keep our birth experiences secret.   One of the reasons is because of Moms Judging Moms.  If I say I had no interventions during Aaron’s birth and it was awesome or I say I had an epidural with Isaac’s and it was awesome, I’m going to get killed either way.  So I just keep my mouth shut.

Motherhood is a very defensive profession.  The fact is that my experience being a mom does not reflect upon your own experience being a mom.  Prenatal testing v. no prenatal testing!  Breast v. bottle!  Cloth v. disposable!  Stay at home v. work! Public v. private schools! Inclusion v. segregation!  Even the terminology around our choices is war-like.

I’ve been reading the Twitter responses to Andre Picard’s recent piece in the Globe and Mail, It’s time to stop treating pregnancy like a disease.  I happen to agree with his sentiment:

Similarly, put a perfectly healthy pregnant woman in a hospital and she becomes a patient – someone to be monitored, sedated, drugged, “assisted,” operated on and so on.

But if you do not agree with this, or this has not been your experience, THAT IS OK.  Everybody calm down.  Picard has swirled up a Twitter storm with both parents and physicians, who cite cases of women who needed interventions to save the lives of their babies.

My work at the Stollery showed me that this is true.  Medicine does save lives.  I was honoured to meet families who had very premature or sick children, and were grateful for the good work done by health professionals in the Labour and Delivery Rooms and NICUs.  Their birth experiences did not go as planned.

A percentage of moms do require monitoring, sedation and surgery in order to give birth.  This is true.  But I believe that any interventions that happen to women prenatally and postnatally are traumatic on mothers’ bodies, and on their hearts – and this includes how a diagnosis is disclosed to families by physicians.

Sometimes the birth experience you expected is not the birth experience you got. Sometimes the baby you expected is not the baby you got.   New mothers who have unexpected experiences are in desperate need of maternal mental health services to help heal.  This recognition is sadly lacking in our health care system.

Picard’s piece speaks to the vast majority of moms who do not require intervention to have baby.  I wrote an essay about Aaron’s birth in a book of essays called Adventures in Natural Childbirth many years ago.  There I expressed my gratitude for having birthed him with no interventions.  I feel that doing it all on my own helped put me on a path of strength to deal with his Down syndrome diagnosis.   But that was just my experience.  My experience does not negate your experience.

For those women and babies who needed  interventions, I’m glad that the health professionals were there for them.  I believe that for most women, the health system should get their sticky fingers off the steering wheel.  Please, let’s all get off our pedestals and stop judging other women and their experiences.  There is no one right way to have a baby.

don’t forget the light

light 1I am admittedly angry a lot.  I’ve been pissed off by systems who cut services for people with disabilities.  I fume about biased language in publications.  I am disappointed by health organizations who say they engage patients and families, but who use them in a tokenistic way. I’m livid at the families who stare at Aaron in the park, and who haven’t taught their children about diversity and kindness.  I’m in a rage at all the people who asked me why I didn’t get prenatal testing.  Steam comes out of my ears every time I see a prominent family in our city, as I vividly recall how their son treated my son with such distain at school.

My shit list goes on and on.  I’ve always assumed that change is going to happen through outrage and a subsequent call to action.   And sometimes it does work – the All Kids Deserve Health Services campaign was born out of a great family rage when our own children’s hospital (and my employer at the time) tried to shut down our Down syndrome clinic.

But, eleven years into our journey, I wonder if there is also another way.  Yes, let’s continue to fight injustices in the world for people with disabilities.  But for me, I wonder if all my anger and frustration directed at society, systems and ignorant people is taking over.  I’ve often said that I don’t want to be a mean and bitter mom.  But I can see how this anger will eventually consume me.  All my anger is starting to block out the light.

A few weeks ago, my husband was manning the bench for Aaron’s floor hockey team.  Another dad was chatting with him, catching up on news with our boys.  As is always the case, they ended up talking about struggles with school, with waits for specialists, and our frustrations in securing speech and language pathology services for our kids.

Afterwards, my wise husband said:  Why, if we say that Aaron is a boy first and the Down syndrome comes after, do we always talk about the Down syndrome first?

I was struck by his words.  Maybe us parents concentrate too much on differences, too?  Maybe we can also make change by showing the world our children’s light?  Maybe the idea of having a child with a disability wouldn’t be so terrifying to prospective parents if we weren’t so mad all the time.   And I think quietly to myself:  maybe I’m the one missing the awesomeness that is Aaron in the small moments – when we are reading bedtime stories in bed, when we play Trouble outside on the deck, when we bake cookies together – because the volume of my rage is hard to turn down.  I need to learn to mute my anger to make space to practice kindness, compassion and whole-heartedness too.

I’m not going to stop calling the media out for their biased language, or sharing our family’s perspective with health and educational professionals.   And while I’m not telling folks to not be angry or frustrated, I’m suggesting that we give ourselves permission to be happy too.  And with that thought, I am going to hit publish on this post and take my son for a walk to get Slurpees on this beautiful summer day.