make the space for the listening


I’ve learned so much these past ten years in my work in patient and family centred care.  My lessons come from this funny learning loop: my naivety is shattered, I feel deeply humbled and then I recognize how much I don’t know.  Working in the world of pediatrics, the clinicians tell me how family centred they are, but then many families sadly shake their heads and tell me otherwise.  This is disheartening.

I’ve come to believe that the care is generally child-centred, but health professionals aren’t sure what the hell to do with these crabby, stressed, fearful families who come along with their sick children.  Us families are self-professed pains in the asses, as that is our primal job – to protect our children at all costs.

There’s so much talk and very little walk about truly involving patients and families, except by a few lonely champions.  This needs to change.  I believe that the core of all work in health care is compassion.  And compassion comes when you take the time to understand another person’s perspective.  And people share their perspectives, not through data (which is so loved by clinicians) but through stories.  Real people communicate by telling stories.

Nobody has time for stories at the bedside.  Bureaucrats create policies to limit access to programs. Wait lists never end. Once you are finally in the health system, people rush in and out of patient rooms at great speed. Technology takes over for the human touch. Efficiency is held up as king. The bottom line for administrators is costs, not care.  With the explosion of knowledge, health care is fractured into more and more specialty areas and people are categorized by a pecking order of diagnoses instead of by vulnerability or individualized need.

The antidote to all this mess is to make the time to slow down, sit on the edge of the bed, put your hand on the patient’s hand, look them in the eye, ask what matters to you and then sit back and listen.  Simply listen to understand, openly and without judgment.  As a wise physician friend told me, find out what keeps people up at night.  What is their hidden concern?  It is then, and only then, will the care in health care begin.

Listening can happen at both the bedside and at the organizational level, too. But nobody has time for patient stories in rounds or during meetings or at conferences either.  The deep irony is that it is the patients and families who know how to make health care better – you just have to give us a chance.  But you must make the space for the listening.

Yesterday I was given a great gift.  It was the gift of time with thirty pediatric residents.  One of my champions is a beloved pediatrician.  Her heart is fully with the children and families she cares for and serves.  There was a window in the schedule for these residents and she grabbed it – creating a rare half day teaching opportunity for families.  I was honoured that family leader and mama bear extraordinaire Isabel Jordan collaborated with me at the podium.  We talked about partnering with families and best practice in sharing the news/disclosing diagnosis.  The residents – who I’m sure were exhausted from the pace of their training – listened raptly to us moms standing at the front of the lecture room.  They were good sports to participate in our ice-breaker, they asked respectful questions throughout and then at the end, they graciously thanked us for our candor, our passion and our time.  Afterwards, amongst themselves, they talked about ways they could improve the hospital experience for families – by caring for their own hearts, revisiting how family centred family centred rounds actually are, and making more time in their frantic schedules to talk about disclosing diagnosis well.

I cannot how thankful I was for this time with these young clinicians.  I cannot express how impressed I was by the calibre of this new generation of physicians.  In the sanctity of that lecture hall, we were all just people, no longer ‘doctor’ and ‘mom’ – the residents, eager to make the world a better place than when they found it, recognizing our desperate need for improvement, and us moms shining the light to show them the way.

Health care and academic leaders, let your guard down and allow yourselves to be vulnerable enough to let patients and families into your hearts. Vow to never have another patient centred care conference (irony alert!) – or any conference – without patients fully involved.  Invite families to share stories at staff orientation.  Add us to the curriculum to teach health faculty students. We want to help you.  We are ready – just give us a chance.  It all comes down to this:  simply make the space for the listening.  (Bonus points if you actually make positive change based on what you hear). This listening space is the spot where the great transformation of health care will begin.

a mama bear’s prayer


This is from Elizabeth Lesser’s brilliant book called Broken Open. She was referring to the anger that activists carry around with them.  That whole if you aren’t outraged, you aren’t paying attention thing?  Well, what happens if you are outraged all the time?   It is hard to turn it off, but we must try to in order to save ourselves.

So my heartfelt Sunday wish for you is that you find that quiet joy today.  I’m sitting on my couch with a coffee and a stack of newspapers by my side.  Miles Davis is playing on the record player.   That’s at least a good start.

the hospital world according to aaron


The Journal of Paediatrics and Child Health in Australia – a publication of the Royal Australasian College of Physicians – has an awesome feature for patient/family stories called The Patient’s Voice.  Yes, this is an academic journal that accepts stories.  They published my piece The Hospital World According to Aaron this month, and I’m pretty chuffed (as I think the Australians would say).

Even better – it is not hiding behind a firewall and open access, which is rare for these types of journals.  Kudos to these progressive folks Down Under.

Ps:  I’m aware that I’m not Dr. Sue Robins.  I only have a BA in English.  This amusing error is being fixed – and a symptom of a journal that generally only publishes the work of physicians!

your sign for today

An interesting thing happens to me when I’m going through change.  Little signs pop up everywhere – signs that perhaps were always there, but I wasn’t ready to see them.

I lived in Winnipeg when my first marriage crumbled.  One day I was driving over the Assiniboine River and I happened to look up.  There was a flashing neon sign that I had never seen before.  It advertising a church, and it said:


Now, despite not being an organized religion kind of gal, I really needed to see that blinking sign at that vulnerable juncture in my life.  These words gave me great comfort, and I went out of my way to drive past that sign in the weeks to follow.  Then one day it was simply gone.

Two years ago, before we made a decision to move to the west coast, I happened upon this sign near Fisherman’s Wharf on a trip to Vancouver.  It was faded, but I could still read it.  I took this sign to heart, too.


Sometimes the signs come from people.  These are your angels.  Listen to them.  Just this morning, a treasured colleague said to me:  the work you are meant to do is the in between.  She explained – my talents were in bridging organizations and families, connecting up people – the broker in between.  Instead of struggling that I don’t fully belong to one organization or group or the other, I should simply embrace the spaces in between, because that is where I belong.

Later this afternoon, I was leaving our condo to pick up Aaron from school.  My brow was furrowed, my face bent into a frown.  Across the street a tradesman was getting into his van.

You look like you are suffering from a long day! he shouted across the road.   This instantly broke my frown. I smiled and nodded.  Don’t let the bastards get you down!  Then he popped in his van and he was gone.  And this wise sentiment, my friends, is my sign for the day.

ps:  Never forget that angels come in all shapes and forms.  It is only if you stay very still, you can hear what they say.



moms gotta chillax

Last night, I watched the first episode of Speechless.  I chuckled uncomfortably at the Minnie Driver character, Mama Bear of a kid with CP.  My husband laughed considerably louder than I did.  I looked around nervously to see if there was a hidden camera in our apartment.

Some highlights from the ‘mom’ character:

She’s intense and a bit wacky
She lectures people on the correct language of disability, disabled parking spots and appropriate accessible accomodations
She’s burned through many schools and moved houses trying finding a good fit for her son
The teachers have a meeting about her before she shows up to the school, to figure out how to ‘handle’ her
Her husband is long-suffering
Her other kids are long-suffering too

This all felt eerily familiar.

I turned to Mike afterwards and asked:  what did you think?  He replied:  I think she even has the same hair as you.  Oh.  Got it.   I thought to myself:  I gotta learn to relax.  

This morning I was sitting on the couch, drinking my coffee.  Teenage Aaron stumbled out of his room and stood in front of the fridge in his underwear.

Moms gotta chillax, he said, talking into the fridge.
What did you say? I said, unable to understand his mumbling at the best of times.
He turned to me and said clearly and definitively:  Moms gotta chillax.  Massage, day spa, books, sushi, baths, he added, counting things moms can do to chillax on his fingers.

Got it dude.  Mama Bears, promise me this weekend you will pick one thing to do to chillax.  Personally, I’m going for a pedicure at the day spa.  My Yoda has spoken.

so much lemonade

See, when it starts to fall apart
Man, it really falls apart.
-The Tragically Hip

Today I’m digging around for all the books that give me comfort my time of need:  Anne Lamott’s Travelling Mercies, Elizabeth Lesser’s Broken Open.  I ate some carbs.  I went for a crunching walk on this sunny fall day.  This helped too.

I’m recovering from yesterday’s crying hangover.  This morning I painstakingly typed out a letter of resignation from my paid work position, after a particularly hard meeting with my boss.  I even watched this deodorant commercial for inspiration, but it didn’t help me one bit.

I’m moving back exclusively into the freelance-consulting world.  In hockey terms, I’ll be a free agent as of November 4.  There was a slippery slope starting with my husband leaving his working-from-home position last March for a ‘must show up in person’ one, and my subsequent leave of absence this summer.  This led to the difficult decision that I need to transition back to working from home to be a support for our youngest son, who happens to have a disability and who happens to be 13, too old for childcare, not able to get special needs childcare funding, not able to be left alone, in a school district that has significantly shortened teaching hours for kids with disabilities (pick up at 2:30 pm because they don’t have funding for Educational Assistants?  REALLY CHRISTIE CLARK?).  Well, I’ve ranted about all this crap before.  My boy needs me and that’s enough.

In my resignation letter, I added this punch:

The reason for my resignation is that I require that my work be flexible and based from home to support my youngest son. This is directly due to the lack of family support that exists in British Columbia for parents of children with disabilities.

This made me feel marginally better, although I know that nobody cares. It really bothers me that my choice to be in the paid workforce has been taken from me.  However, this also makes me acutely aware of my own privilege. I am in a relationship where my partner makes a decent income, so I have the option to move back into freelancing.  What of people who don’t have this luxury?  This is how the government forces people who have disabilities or those who are caring for people with disabilities into poverty.  How is this ok?  This is not ok.  What am I going to do about it?  I don’t know.  I guess I will have some time on my hands to figure that out.

But for a while, I am going to hang up my supermom cape.  Someone else can take over changing the world because that turned out to be rather short-lived this time around. I still hang tightly onto the belief that we will change the health care world only through love and compassion.

I’m working on a long-awaited book project.  I’m slowly getting more known in BC health conference circles, and have a number of scheduled speaking engagements.  I might eat more sushi and take more baths.  Importantly, I’ll pick my boy up from school, and we will stop at Tim’s by the high school for iced caps, where the ladies remember his order.  He’ll talk to me about his day as we zoom back home up the mountain before he catches himself chatting with his mother and announces to himself:  SILENCE AARON.  We will catch up on Born This Way episodes on PVR and eat popcorn in bed while we wait for his dad to return from his work. We’ll putter around in the kitchen, listening to soul music and preparing supper, where he has been crowned my capable sous chef.

The system has thrown a number of hard, rotten lemons at my head and I’m bruised and worn. But from that, I’m trying to make some pretty sweet lemonade.  I believe with all my heart that our best revenge for daring to have a kid with a disability is to orchestrate a happy, well-lived life – systems and society and governments be damned.  Love to all the families out there struggling to gain the same balance.  Know that you are not alone.

you must go on


Today I left my son’s doctor’s appointment under the crushing weight of disappointment.  This was a follow up appointment to discuss a number of referrals for Aaron.  Here are the various statuses:

  1. On a wait list for an indeterminable amount of time.
  2. Another referral is ‘being reviewed’ – he isn’t even on the wait list yet.  (A pre-wait list?). Once he hits the list (if ever), the wait list is many months long.
  3. One service is $190/hour.  Another is $100/hour.  Yet another is $85/hour.
  4. The recommendations from the health care professional report won’t be funded by the school.
  5. We can’t get him into a publicly funded service because the ministry won’t open a file for us.
  6. Our doctor recommended we take the private, expensive options because the public system is of such low quality.

I slunk out of that appointment, my head hung low, my heart heavy.  Aaron was excited about a promised Dairy Queen lunch, so I stood taller, put a smile on my face and did my best to be a good mom.

I’m feeling raw and uncensored.  In response to this Maclean’s article (sure enough, alluding to the ‘risk’ of Down syndrome, a chromosomal ‘abnormality’), I tweeted:  Stop saying this shit.  I’ve been revisiting Aaron’s experience with inclusion (or lack thereof) when we were interviewed for this Globe and Mail article.  Frankly, those memories of Grade 1 bullies, dried up birthday party invites and general exclusion have been a real bummer.

The school informs me that his new special ed program doesn’t begin until mid-September, drop off time is 9 am (except for Wednesdays when it is 9:30 am) and pick up is 2:25 pm.   I’m not sure how I’m supposed to work – from 10 am to 1:45 pm?  I asked the teacher what other parents did before/after school (since our kids are over 12 and not eligible for daycare – not like we were eligible for that anyhow since the wait list for supported childcare is so long) and she told me:  well, most of the families have autism funding.  Well, sadly my kid has the wrong diagnosis for any sort of funding in this province.  Another fail.

NONE of this is Aaron’s fault.  We might blame the system, but the system is made up of people – living, breathing people – who make decisions that affect the real lives of families. I work inside that system.  This first hand experience makes me feel full of shame, for I am the system too.   I catch myself inching towards the mean and bitter mom category when I remember this:


Oh right.  It is September 1.

After the doctor’s, Aaron hung out with a lovely young university student who was taking him to play basketball, so I went for sushi.  I went for a walk.  I sat in the library. We might not have respite funding, and we can hardly afford this, but dammit, I’m pulling out all of my self-care strategies and feel a bit better, surrounded by books and pounding out all my troubles into my keyboard.

If you are having a hard month too, my friends, you are not alone.  We must solider on, as Samuel Beckett says:


In the quiet of the library, I remember last Saturday night.  Our next door neighbour invited me to a yoga class on her terrace under the setting sun. Afterwards she and her husband hosted a party, and Aaron and my husband wandered across the hall, bearing antipasto.  Aaron sat on the couch and patiently listened to the adult talk, for he was the only kid there.  One of our neighbours, new to Canada, said to him:  I have a present for you…and gave him a bear whistle.  Take this with you, she whispered.  If you see a bear, or if anybody is a bully to you, blow it loud.  Aaron nodded, cared for by this sweet sentiment.

Later, Nina Simone played on the stereo.  Our hosts got up to dance, their arms comfortably entwined around each other after 40 years of marriage.  Aaron watched them carefully, and then another neighbour asked him to dance, and then another.  He accepted, shyly.  I’ll never forget how pleased he looked, dancing with the ladies in that little living room.  This memory is like magic.  If I close my eyes and remember, it erases all the wait lists, our depleting money, the lack of access …it is all gone.  It is only my youngest boy slowly dancing with a kind lady, a slow smile spreading across his face, knowing full in his heart that he belongs, right here and right now.  He’s conquered the world with his very being, and we are both at once at peace.