my great nordic breakdown


Illustration by Lindsay Campbell

Just for something completely different, here’s an essay that I had published in the Globe & Mail’s Facts and Arguments this morning – My Great Nordic Breakdown.

You know when you are at a meeting and they ask the ice-breaker question:   tell us something nobody knows about you?  Well, this is my answer to that question.  After my first marriage broke up, I lived in Norway for five months with my two eldest kids when they were 7 & 4 years old.  While I have a journal I kept during that time (buried deep in a box), I have never written about our odd adventure.

The writer background is this:  an editor of another prestigious newspaper was interested in the story, but when I submitted it, she said:  this isn’t a good fit.  So after a couple of days of feeling hurt by this, I dusted myself off and submitted it to the Globe.  Who accepted it.  There’s a great amount of rejection in this line of work.  But this is a good lesson in not giving up.

The Globe and Mail has been good to me.  This is my third Facts and Argument essay that I’ve had published, and I had another one accepted that I had to withdraw because of a long story that I can’t tell you.  So to all my writer friends out here:  try the Globe!  They don’t pay, but the byline is nice on your CV!   And they are friendly to mama writers.  An editor there once told me:  if it makes me laugh or cry, I’ll publish it.

ps:  Don’t read the online comments.  Never read the online comments.  I sadly forgot to take my own advice this morning.  Ugh.

precious cargo

I hotly anticipated the release of the new book by Craig Davidson called Precious Cargo. The sub-title is My year of driving the kids on school bus 3077, which sums up the premise of the book:  in desperation, struggling writer takes a job driving a special ed school bus in Calgary.  As a mom with a kid with special needs, I’m not super happy about the ‘in desperation’ part, but I do understand the writer’s need to set up dramatic tension as he begins his story.

I wanted Precious Cargo to provide a little crystal ball into my son’s life – being 13 and having Down syndrome, we’ve been told he’s eligible for the ‘special ed’ bus pick up and drop off next year – and that’s new for us.  I once heard a prominent researcher in the disability world give a talk on abuse and children with disabilities.  An audience member asked him, what’s the one piece of advice you’d give to parents to avoid abuse for their kids?  And he answered:  never ever put them on a school bus.  That scared the crap out of me.  Hence my extra-fascination with the premise of this book.

I also wanted to read Precious Cargo to gain some insight into the thoughts of a person who had never been exposed to kids with differences (e.g. the writer) – I wanted to see if he had any epiphanies about why the hell general ‘society’ shuns and excludes our children.

What I ended up getting from the book was this:  a hope that others who have never had experience with people with differences read this book.  Me reading this book is akin to preaching to the converted.  While it was interesting to ponder some points about inclusion (do kids want their own special ed bus?  Is inclusion about us and not them?) and to validate that the ‘wide berth’ given to people with disabilities is rooted in a very primal fear of difference:  it is 2016, yes, I know we haven’t evolved that much, particularly in regards to people with intellectual and/or visible differences.

For a richer analysis of Precious Cargo, listen to this wonderful CBC interview on The Current.  What stuck me about this interview was the immense respect that Anna Maria Tremonti offered to the panel participants and the subject matter of disability and stigma.  As always, Ian Brown knocked it out of the park with his thoughtful commentary (read his Globe and Mail review of Precious Cargo here).  I so appreciate the author Craig Davidson for introducing the stories of these young people on his bus to the broader world.  During the interview, I learned the most from Ing Wong-Ward, Associate Director, Centre for Independent Living in Toronto.  She spoke eloquently about us all being aware of always ‘calibrating our fears’ about people with differences.

Ing helped me realize that my world as the mother of a person with a disability is not the same as my son’s own world of living with a disability.  The older he gets, the more I’m working hard to unravel myself from him, to create environments where he can express his own feelings and make his own choices.  His story is his story.  My story is my story.  Craig Davidson’s story is his own story.  I believe there’s room in this world for all these stories.  

The more we talk about stigma and people with disabilities, the more we chip away at that stigma that has been built over the decades with the bricks of secrets and silence.  I truly hope that Precious Cargo becomes a best-seller, transcending the world of those who have a personal interest in ‘special needs’ like me.  I’ve often wondered whether having someone follow us around with a video camera as we go about our day-to-day life as a ‘special needs family’ would either terrify people or calm people down.  If nothing else, all these stories illuminate, and shine light on people and families who are just doing the best we can (just like you are) in this messed up, beautiful world.

pay attention to where the suffering happens…

...for that is where the healing begins.

I felt very fortunate to attend Dr. Rita Charon’s lecture at the Vancouver Institute last night with two wonderful colleagues from my children’s hospital workplace.  Dr. Charon’s talk was entitled The Power of Narrative Medicine and it was a beautiful marriage of literature, art and medicine.

I hung onto every eloquent word she said.  It was as if Dr. Charon had heard me preach about active listening, storytelling and reflective practice over all these years, but then she took my simple thoughts and draped a complex intellectual layer over them.  Her lecture was very smart and I can’t stop thinking about what she said – I cannot recall being that mesmerized by a presentation before.

The premise of her lecture was this question:  how do we be totally present with another human being?  While I talk to medical students about simple things, like eye contact and not appearing rushed when they meet with patients, Dr. Charon goes even further by teaching health faculty students how to read and to listen to stories written in the literature so they understand how to pay attention and to recognize that every single word counts.  This human skill of careful attention can be applied to work with patients, who often crave one simple thing: to be heard and understood.

Once we understand how unified we are at the human lived experience, then our troubles (in health care) are over. 

She spoke about boundaries, and how the artificial borders we place between each other as ‘professionals’ and ‘patients’ are actually permeable.  She wondered what methods she could use so she did not have to be a stranger to her patients, and concluded that this can only happen when she was listening closely to patients with a mixture of curiosity and wonder.

Pay attention to where the suffering happens.  This is where the healing begins.

Dr. Charon spoke for just over an hour.  I could have listened to her forever.

I thought about my English degree and how I bring the ‘soft’ right-brained stuff into my scientific, technical work environment.  I’m often dismissed and misunderstood, but I keep my head down and continue on.  I don’t underestimate the influence of initiatives like new art on the walls, a book club, TED Talk showings and inspirational quotes that I tack onto the hospital bathroom walls. I’m interested in nudging my colleagues to think and feel in different ways.

The conversation on the way home with my two work friends (one a clinical librarian also with an English degree, and the other a leader with a graduate degree thesis in storytelling) was the most interesting.

We all wondered if the work of health care was meant to be purely embedded in math and sciences.  Isn’t caring for patients in itself an act of humanity, and not a function of  science?  

(Here’s a snippet of Dr. Rita Charon’s wisdom.  Take the time to watch it carefully.  She does not have a sound byte-like style of speaking – and that’s what was so refreshing about her talk last night.  You have to work to listen and understand her words – they will not be spoon fed to you.  It made me realize what a rare gift Dr. Rita Charon is in our rushed and frantic world).

my story, your story

sylvia plath

About eight years ago, on a news segment about peer support for families who have kids with disabilities, I talked about the grief that families feel when their child receives a diagnosis.  A journalist who had cerebral palsy took me to task, saying that I was against people with disabilities (!), and that by expressing the sorrow that comes with a diagnosis in the early days, I disrespected my son.  I felt great shame for feeling the way I felt, and for also expressing it in a public way.

I have conflicting feelings about this.  As a wise spiritual care leader at my work said – you have your story others have their own stories.  It is ok if these stories are not the same.  So I have my story about being Aaron’s mom, and yes, Aaron has his own story about being Aaron.   As he gets older, I hope to support him to tell his own story. (If he wants.  I also live in fear of becoming a stage mom).  When Aaron appears in my presentations, or even on my Facebook page, he is aware I am talking about him.  He helps me pick out his photos.  If he doesn’t want a particular picture used, I don’t.  Is he truly giving informed consent?  I guess that’s a controversial question for a kid with Down syndrome.  I trust that I explain what I am doing in a way that he understands, and that I give him a true opportunity to say ‘no’.

Since the fall of the website The Mighty, (see this Washington Post article for an explanation) I’ve been even more reluctant to write about Aaron.  There have been various edicts floating around the Internet that say that parents should not be writing about their kids with disabilities.  I’ll tread carefully here, as with any ethical issues, the answer isn’t black and white.

If you are a writer who writes about your experience having a child with a disability, I’m not going to tell you what you are allowed and not allowed to do.  This type of reflection is personal, and we all figure out this whole parenting thing in our own time.  Passing grand judgments on what everybody must do seems in itself judgmental to me.

Being aware, participating in regular reflection, and being open to listening to my kids is what I promise to do.  My eldest son asked that I not publish about him anymore, so I don’t.  I check with my other two kids before I share pictures or stories.  I try to express my own story (including feelings and reactions) as a mother without compromising my kids’ privacy or dignity.  Such is the delicate balance of figuring out what is my story and what is theirs. I don’t believe that shaming or muzzling people is the answer – surely there are more respectful ways to give people pause to think?  We all have our own answers about what’s the right thing to do, and our answers reside in our own hearts. You figure out your right answer, and I’ll figure out mine.

an extraordinary morning

Today started as a regular enough Saturday morning.  I heard Aaron get up at 6 am, but I managed to stay in bed half-awake for an extra 45 minutes, listening for evidence he had not left the house.  I could hear his iPad playing Pitbull very loudly in the kitchen.

I put on my robe, shuffled downstairs and started my coffee.  I opened the door, happily noted it was not currently raining, and fetched the papers off the front porch.  It smelled like Christmas outside, as it does every day of the year on the west coast.

“Why did you get up so early?” I asked Aaron.  “Because I’m excited for Santa,” he replied.  Of course.  It is only six sleeps until the big man comes.  

Slowing paging through the Globe and Mail, I came across the Globe Focus section.  On the front page is a piece by Ian Brown called, “What we have to do is find the places of hope.”  It is about Jean Vanier’s L’Arche communities.  It would be silly of me to provide commentary about this exquisitely crafted writing that reflects so many things that I believe in, as the mother of a child with a disability and as a human being in this world. I would just end up quoting the whole thing.  Just read it for yourself.

I tweeted out the link to the article, as I’m apt to do.  I noted that Jane Philipott, Canada’s Federal Minister of Health had also tweeted out the piece, too.  I tweeted that her tweet gave me so much hope (stay with me here; I know this is a lot of tweeting) and she retweeted my words and added this:

There is hope. I’ve been a huge fan of Jean Vanier since I read Larmes de Silence in ’79 French class.

Then she shared Jean Vanier’s words:


All this tweeting business happened a bit later while I was bumping around in a rented white pick up truck with my husband and son, to get firewood from a nursery in an obscure part of Vancouver, down by the Fraser River.  We had a 9 am appointment to meet the firewood guy, and my husband was vibrating that we might be late.

What struck me on this ordinary Saturday morning that had suddenly become extraordinary was that we are all connected, all of us…from a mom in Vancouver to a journalist in Toronto to a physician & Health Minister in Ottawa.  What connected us up was a handful of beautiful words.  The Internet helps with this, of course.  Twenty years ago, this whole transaction would have taken an number of weeks in the form of stamped and mailed letters.  Today we are much zippier.

At the nursery, the firewood man noticed Aaron in the pick up.  “Would you like a ride on the bobcat?” he asked.  “SURE,” Aaron responded very enthusiastically.  They zoomed around the grounds, and Aaron laughed and laughed.  I was worried he’d fall right out, but he hung on tight and emerged grinning from his adventure.  Later we went to a dairy to pick up local eggnog, and Aaron & I shared a glass while we watched Master Chef Junior on the couch.  I was sandwiched between Aaron and Tommy the orange cat.  Aaron made his own hotdog for lunch, filling the pot with water, dressing his hot dog bun with excessive ketchup and mustard (as he usually does).  “VOILA!” he said when he was done. Then another Saturday morning was over.

But every morning is extraordinary, isn’t it, when you wake up alive and you feel loved.  Not just the mornings when you read words in the newspaper that make you weep with their beauty, and then the Health Minister sends you a poem. On other days, the ones that seem mundane, the most important thing is to pay close attention, or you will miss the extraordinary.  And I’ll quote Ian Brown’s article, but only this once:  “In that setting, in that moment, the thought of waiting for the beauty of the world to come to me felt right.”  I can promise you that the beauty is always there. Just wait and watch for it my friends.

the less-invisible-mom

Screen Shot 2015-01-02 at 9.45.20 PMMy favourite (and most supportive) editor, Louise Kinross, at Holland Bloorview’s Bloom blog, asked me for a piece that gave an update about The Invisible Mom.  I wrote Looking Up over the holidays, and it was published on Friday.

The comments have been kind, but to be truthful, when I wrote the Invisible Mom a year and a half ago, I was MAD ALL THE TIME and not in very good shape.  This kind of permanent outrage bled into other parts of my life, and I was in a constant simmering rage, waiting passively for the world to become more tolerant and accepting of my young son.  The stark reality was that change wasn’t happening on its own.

This kind of anger is exhausting.  I was fearful of becoming a mean, bitter mom.  I cannot tell you how much better I feel because I examined my own role in Aaron’s exclusion.  I found something I could actually do about it – help start a Family Inclusion Group at the school and finally connect with other moms – and this is a such big relief.  Of note:  I have not done this on my own.  There are five of us ‘founders’ – each bringing our own energy and diverse perspectives to the group.  We also partnered with the school administration – one Assistant Principal in particular has been collaborative and responsive to us  Also, our school trustee is a champion of inclusion and attended our first meeting – how great is that?

I read this super quote somewhere a long time ago.  It is from a dad who had a child with special needs:

When my son was born, I wanted him to change so he could be accepted in the world.  Then I wanted the world to change so they would accept him.  Now I know that it is ME that has to change.

Isn’t that lovely?  Words to live by.  Let’s keep chipping away at change in this messed up, beautiful world.  Let’s also borrow from the Serenity Prayer, and accept what we cannot change, and have the courage to change the things we can.  Let’s do it together.  xo.


ella frances, age 4

IMG_5921Ella is a highly emotional and volatile little person! Can hold her own – strong-willed and passionate. Creative – can draw and draw for hours. Loves singing and dancing and being silly. Excels at printing – she will read early. Knows who she likes and who she doesn’t.  

Big screamer, very dramatic, particularly when her brother bugs her. Very warm and affectionate. Does not run with the crowd or a best friend – goes about her business, doing what she wants to do. Likes to follow me around, ‘hanging out with you mama.’ A beautiful girl.


I found this little blurb about Ella written in a journal that I kept when I was a single mom in 2001.  That’s when I started writing in earnest, to try to make sense of my own messed-up world.  I am so grateful that I wrote these words down, to remember what my little girl was like at this point in time.


Fourteen years later, I’m stunned how similar Ella is now to when she was four.  I wonder if our values and character have settled into place by this young age.

Now Ella is 18, and although she is reserved, she is still (quietly) passionate.  She was an introvert when she was four, and she’s still one now.  I think she’s very creative – she doesn’t believe so, but she can out-doodle anybody, and has an eye for art and beautiful things.  She loves all sorts of music – pop, hip hop, blue grass, and Johnny Cash. She did used to follow me around when she was little, and that was when we started baking together.  Now she works as a baker’s assistant at a local bakery.  She’s oblivious to peer pressure, and has always gone her own way – choosing to take a year off before school, finding a little garage suite to move into with her boyfriend, adopting a sweet little kitten.  I’d add two other words to describe her now:  she’s resilient, and she’s very funny, too – these are qualities that have evolved as she’s grown up.

Here’s yet another good reason to keep writing and telling your stories:  to remember. Zooming back in time has reminded me of how that sweet little girl has blossomed into a beautiful young lady.

Today, one of Ella’s co-workers gave her a handmade painting that says:  In a gentle way, you can change the world.  That’s the perfect sentiment for my girl fourteen years ago at age 4, and now at age 18.  She’s gentle, but she’s also a force – watch out world, here she comes.  xo.