everything about us without us?

photo credit: David Hungate for Virginia Tech Carilion

photo credit: David Hungate at Virginia Tech Carilion

There’s a movement afoot called Patients Included, whose charter for health conference organizers includes ensuring patients are not excluded or exploited at health conferences.  This includes having patients on the organizing committees, patients presenting and attending the conference, offering subsidies for patient travel, accommodation & registration and modifications made for patients with disabilities.

Now this is interesting stuff.

A couple of years ago, I wrote a blog post called Who Speaks For Patients, Anyhow?  It included a handy table about the spectrum of engagement of patients at conferences.

Since then, I am grateful for having been asked to speak at a number of health conferences.  I have been thinking about why some conferences are patient-friendly, and why others are not.  (True story:  I had an abstract accepted at a conference with a theme of the patient experience, and I was told I had to pay $450 registration fee in order to show up and give my 30 minute talk.  Um, no thanks.  The only way patient speakers will be valued at conferences is if we start saying ‘no’ to these requests to volunteer.  It reminds me of writers writing for free.  Just don’t do it).

But here is how some health conferences ‘get it’ and include patients, the very people who they care for and serve, the very people who are the subject of their conferences.

There is one champion on the organizing committee who puts up their hand and asks:  why don’t we have a patient speaker?  If they are pooh-poohed, then they put their hand up again and ask the same question, persistently and politely.  Eventually this not-so-quiet lobbying pays off, and the organizers decide to try out a patient speaker. Maybe this is just on a panel or a breakout.  That’s ok; it is a start.  Maybe they take a big leap of faith and ask a patient to open their conference.

With the right speaker, the conference participants can be inspired.  The rest of the conference is grounded by the patient voice.  The participants are reminded why they are doing what they do, and this helps rekindle their passion in their profession.

Now, after I got the crap beat out of me after speaking at a conference, I was told that health professionals don’t come to conferences to hear patients – they need a break from patients because they hear them all day long.  That’s pretty sad.  These are perhaps the types of health conferences who should not be asking patients to be involved.

The smartest of health professionals know what they don’t know, and they understand the power of the patient voice at their conference.  For it reminds them of the humanity of health care, the heart of health care and the caring in health care.  Bravo to those champions with their arms raised at those organizing committee tables – this includes Jeff Whissell, Sharla King, Tara Hatch, Arden Barry, Laurene Black, Teresa Bateman, Frank Gavin and Karen Latoszek – amongst others.   I’ll bet if you try including patients in your conference, you will never ever turn back.

be kinder than necessary

It has been a long & emotional week.  I flew to Ronaoke Virginia for the great honour of being one of the plenary speakers to open the Collaborating Across Borders conference for interprofessional health educators.

Before I left my room for my talk, I left $2 on the pillow for the housekeeping staff.  That’s a habit I have adopted over the years and my husband teases me that I’m forever looking for tip money.  I figure that being a housekeeper in a hotel is a pretty thankless, low paying and sometimes disgusting job – so leaving two dollars on the pillow seems like a very small token of appreciation.

I then went to the ballroom, and climbed up on stage and looked out into the sea of close to 1,000 participants.  I couldn’t actually see their reactions to my talk, because there were so many people out there.  I could hear in my voice that I was nervous for the first few minutes and stumbled over my words until I settled down into a more even rhythm.  I tried to forgive myself for not being perfect.  The crowd was engaged and respectful, and I was appreciative of their attention and applause.  My talks are basically about compassion, and how I believe that actively listening to patient stories can lead to more compassionate health care. One of my mantras is that I’m talking about kindness, and kindness is free.

Afterwards, I stuck around for lunch and attended some sessions.  Then I needed to retreat into my room for some introvert time.  My room was nice and tidy and my bed was made.  On the covers was this note:


I had given only $2 and I received this beautiful note in return.  To the lady who does the housekeeping:  I did have a bless day.  Thank you for being a part of that.  Such a small effort on my behalf for such a large reward.  I’ve tucked this little note away in my notebook to remind me, even if I am weary or rushed, to always be kinder than necessary.  As the saying goes, for everyone you meet is fighting some kind of battle.  God bless you too.

a mother’s chronic sorrow

The truth I dare not say was chronicled in a recent blog post by Susan Ellison Busch. She speaks eloquently about having a child with a disability and the loss that comes with grappling with the child that you expected was not the child that you got.  This is not the type of topic that I bring up at cocktail parties, and I tip my hat to her for the authenticity of her writing.

I have a kid with a disability and I have other children too. Being the mother of any child involves this secret chronic sorrow. The losses of motherhood pile up early: the baby who won’t settle in your arms; the toddler who runs away from you; the inevitable loss of status in a child’s life – slowly you are replaced by teachers, coaches, friends, adolescence, girlfriends & boyfriends and college. And then one day your children are simply gone.

My beloved daughter lives a thousand miles away, and I’m thankful for this relatively close distance. We manage to steal visits every few weeks. My eldest son is even farther afield. I haven’t seen him in 10 months. I climbed into my car at 5 in the morning yesterday to embark on a trip to see my boy.

The streets of Vancouver were deserted so early on a Sunday; the traffic was scarce and the lights were all green. I played that damn Mumford & Sons cd, which always reminds me of my wayward son. I don’t know why – he would detest such mainstream music – maybe it is the tinkling piano or the quietly strumming guitar. I think it is the sad lyrics:

And in time
As one reminds the other of the past
A life lived much too fast to hold onto
How am I losing you?

There was a crack in my shell and I blinked back tears in the darkness of my little car. My absent children have never faded from my mind, but I put missing them in a tightly locked box in my heart. I’m normally terrible at compartmentalizing, but compartmentalize them I have done, to save myself from collapsing in to a regular heap of tears.

I often cite the serenity prayer to staff at my work at a children’s hospital. Think of what you can control, I say, and what you cannot. You can’t control the system, or your manager or your colleagues, so let go of that, I say. All you can control, I say, is you – what you say, how you treat others, the thoughts in your head. My flown children soar on the outer edges of my serenity prayer. They belong to the world now.

For 41 hours, I’ll pop in as a visitor to my son’s life. This trip is to see his face, to hug him, to tell him that I love him, no matter how many miles separate us. A mother’s life is full of losses – loss of that dream of that perfect child (here’s a spoiler – the perfect child doesn’t exist anyhow, even for typical children), loss of identity as a mother, the loss of children grown. To live with that sorrow and to avoid a middle-aged life of overbearing bitterness, we must store that sadness in that little box, take it out and examine it only occasionally, to save our fragile hearts.

When I finally saw him after ten hours of travel, I hugged him hard and let out a strangled sob, embarrassing us both.  “I love you,” I said.  “I love you too Mom,” he said.  And that had to be enough.

i know nothing


I was awake at 3 am this morning, fuming about my son’s school. They have a habit of asking the Resource Teacher guidance about what to do about Aaron, making a decision themselves and then merely informing us afterwards. Because Resource Teachers know my child best, don’t you know – besides, all these ‘special needs children’ are all the same. (sarcasm intended).

The fact is that we know Aaron best. In fact, Aaron knows Aaron best, and we are working on helping him speak up more effectively for himself.

Decisions should never be made on our behalf. We should be involved in the whole decision making process, as the Resource Teacher is not the expert of our son.

Then this morning, my own health authority posted a position for a Family Advisor position for their Neonatal Program. I will be the first one to stand up and applaud this hiring. Family and patient advisor positions have been exceedingly rare in Canada, but I see the tides are changing.  I am grateful to be the Family Advisor at Sunny Hill Health Centre for Children in Vancouver.  I also learned so much from my four years as the Family Centred Care Consultant at the Stollery Children’s Hospital in Edmonton.

I’ve been thinking about what makes an effective Family Advisor. I realized there are many parallels between Resource Teachers and Family Advisors. Are either of us experts of other people’s children? NO.

Family Advisor can only answer the question of what would the families want with an answer from our own personal experience, anecdotal information from what we hear from families, or what the research says.

My purposely vague answers are – How would you feel if you were the family? Why don’t you ask the families themselves?

When I get asked – Should we do this or this for families? My answer is: It depends.

There is no one answer to family preferences – for all families are as different as snowflakes. I’ve learned this the hard way. Early in my career, I concluded that an information binder for families was a great resource.  Then I asked a family member who actually received the binder.  She said to me: I hate that binder. She offered a bucketful of constructive advice to improve it. This was a good and humbling experience for me. I should never make assumptions (for they make an ass out of you and me).

A physician once told me: there are no always or never in medicine. I’d say this is true with partnering with families too. The only always for me would be: Treat people with respect. Be kinder than necessary. Listen to people. Consider them capable. Demonstrate compassion.  Offer choices. Share information.

I’m excited to have a colleague in the Family Advisor world in Vancouver. My hope for them is that their hearts are open, they have the ability to say I don’t know, they are patient & kind, they honour both family and staff stories, they practice non-judgmental listening and they don’t try to fix people.  Pausing and gently taking the time to understand why is such a powerful approach for this position.

For in my humble opinion (and remember I’m only n=1), that is what this type of position is all about.  Family Advisors (and Resource Teachers) are the experts of nothing.

Edited to add wisdom for Family Advisors (both paid and unpaid) from Karen Copeland:

  • We can create space for families to share their stories when they are ready.
  • We can ask why do you think that is questions to staff, and engage staff to be ready and open to hearing the family voice.
  • We can guide health providers to ask the people who know best – and that’s the children and families themselves.

1.9 kilometres straight up

the view from here.

the view from up there

Next week I’m presenting before an audience of 1,000 people in Virginia.  I rehearsed and rehearsed my speaking notes all morning – my stomach clenching, imagining myself looking out into that infinite sea of faces.

“I’ll just go for a little walk,” I thought, having recently become obsessed with my steps (or lack thereof).

I drove to the North Shore and saw the sign for Baden-Powell Trail to the Quarry Rock.  1.9 kilometres, it said.  That’s not too far, I decided.  (Whoever proclaimed this trail as easy in this review must be a delusional mountain goat).

The first ten minutes were straight up.  Up, up, up.  Up wooden stairs, up and over roots and up a narrow pebble path.  I kept on going, reluctant to give up, and was passed by small dogs and children.  Finally I asked some returning hikers, how much longer? thinking I must almost be there.  ‘Oh about 15 minutes,’ they said breezily.  I noted that they were much younger and fitter versions of me. I blinked, processed that information, and kept going.

Of course I had to pee.  And I hadn’t brought any water.  But as Kimmy on the Unbreakable Kimmy Schmidt says, anyone can do anything for ten seconds.  So I kept going.  Ten seconds at a time.  Then another ten seconds.  And so on.

To distract myself from my poor cardio, full bladder and general dehydration, I mused on the other times I’ve embarked on climbs in my life.

One was when I was about 13, up Coliseum Mountain in Nordegg.  My family was with me, including my spry beautiful grandma, before peripheral neuropathy stole the nerves in her legs.  I recall happening upon a lovely meadow of wildflowers, where we stopped to rest.  Of course we had snacks and sandwiches, as my grandma was as prepared as a Boy Scout. The view from the top of that mountain at the end of three hours of ‘up’ was simply stunning, as was the fleeting knowledge at that young age that maybe I could do anything I put my mind to.

I climbed up and down a mountain many times in Bergen Norway with my young children.  I was living there, broke and heart broken, after my divorce, with a family who had a house embedded on the side of Mount Floyen.  When I didn’t have money for the funicular, I dragged my kids up and down the mountain to get groceries, soft ice cream, and to go for soup at the Zupperia.  At night I’d escape and walk on the mountain paths in the dark, listening to the only song I had brought with me, U2’s Beautiful Day.  Those walks helped me become strong during an exceptionally dark time in my life.

My last climb was more of a long hike, from Bondi Beach to Coogee Beach near Sydney.  It was two plus hours on a cliffside in the blazing sun. I tackled this one after a conference in Australia.  I had flown to Melbourne, covered in fear-sweat for the entire plane ride, to speak at a conference.  I was very scared and very far from home. That beautiful sweaty walk was my reward for surviving the presentation, which actually went just fine.  (All my worry was for naught, which I hope to say in about nine days in Virginia).

Today, coming down that hill was just as hard as going up.  My legs were tired and shaking, and I was terrified of slipping on the wet rocks.  I was grateful for any help I found along the way – the wood bannisters, the flat part of the trail, the rests on the bridges over cascading creeks, the greetings from other hikers, the pauses to pet the hiking dogs.

I needed a reminder why we climb great heights.  We climb those mountains, both real and imagined, so that we remember we are alive.

you’ve got a friend in me

IMG_6099I have been asked to speak about the value of peer support at an upcoming conference.  But this time I’m not sharing research or best practice or information about community peer support programs.  I’ve been asked to simply talk about what peer support means to me, as a mom.

I had mom friends when my two eldest kids were little.  I was a young mom, with no family in town and I didn’t know anybody else with a baby.  I met these friends by stalking them at La Leche League meetings.  There I met crunchy granola moms like me, and our like-minded connections stuck.  These women helped me through the early bleary days of motherhood, a cross-Canada move, and a divorce.  I picked up other mama friends in playgrounds, neighbourhood alleys, school hallways and at my kid’s t-ball games.  I even moved to Norway with my kids to live with one mom friend and her family (long story).

Seven years and one marriage later, enter Aaron, my son with Down syndrome.  At the beginning, it was important for me to be surrounded by moms whose kids also had an extra chromosome.  I began a little moms group, and twelve years later, I am still friends with those awesome moms (the lovely ladies are pictured above).  As Aaron started in his neighbourhood school and I became invisible on the playground as the mom of a kid who was different, I gravitated towards moms who had kids with a ‘special needs’ designation at the school.  Diagnosis didn’t matter then – our commonality was our struggle with systems and society who couldn’t see our kids as kids first. (Don’t worry.  I have friends who don’t have a kid with a disability.  And friends who don’t have kids at all.  And friends that aren’t women, too. I don’t discriminate.  But this is about my mama friends). It took me 12 years, but I had a pretty healthy circle of mom friends in Edmonton.  They were my peeps, my lifeline, my confidantes.

Six months ago, my husband, son and I packed up our stuff and moved to Vancouver.  I am starting from scratch here to build my tribe, for adult friendships are constructed very slowly.

Since we’ve moved, I promised myself I’d say ‘yes’ to any social invitation that came my way.  As as a result, I’ve surprised myself by going to musicals and church events and having a great time.  The one mom I already knew in this Down syndrome world has been exceedingly kind.  Helping us unpack.  Bringing over food when my husband was sick.  Inviting us for dinner.  Introducing me around.  Showing me the ropes.  Another mom, who has an older son with autism, spent an afternoon with me in the coffee shop, going over her carefully researched list of services that she had typed up for me.  I was a mom she didn’t even know.  She also connected us up with the lovely young lady who did childcare for us this summer.  Lucky lucky me.

One morning in June, another mom approached me on the street – ‘I’ve heard of you!’ she said.  She has a young daughter with Down syndrome.  She invited our family over for a barbecue the very next day and we met some of her peeps too.  She kindly and unexpectedly looked after my boy as I drove my husband to the hospital emergency (another long story).  We went bowling with a family whose son plays baseball with Aaron.  I drive around the Lower Mainland to Abbotsford, New West and Squamish to meet with other moms.  I am happily getting to know my sister-in-law – a new mom herself – better too.

Twitter helps.  I find moms who are both writers and who have kids with differences just like me. Soon I am going for beer and burgers at a pub with a new gaggle of moms. Slowly, slowly, it builds.

The bond between mothers with children with differences is very strong.  We know without saying.  We don’t clean up our houses for each other.  We help each other as others have helped us.  We never apologize for our kids.  We appreciate the notion of a very short playdate that includes french fries and quick exits.  We commiserate over the (hilariously-named) Disabilitini.

Mothering any child is hard. We all need support, disability or not, and I wish our world was kinder to moms in general. I feel thankful for my trail of mom friends across Canada and now in Vancouver.  Is peer support valuable?  Hell yes.  But what is peer support, but caring for another human being?  These women don’t provide peer support to me. We are simply each others friends.

inked – the mom version

I’ve been carrying around a slip of paper in my wallet for months now.  It is a silhouette of three little birds in various stages of flight. These represent my three children:  my son in another country, living his life as a musician; my daughter the next province over, poised to start university next week; and my youngest son, who is on the brink of adolescence.

My hesitation to get a tattoo was a strange mixture of fear of pain coupled with the embarrassment of being an almost-50 year old mom wandering into a hip Vancouver tattoo shop.  Tired of excuses, I went in on Tuesday and finally just got it done.


I was sitting at the end of a yoga class at work yesterday.  The instructor told a story of her 19 year old daughter at the dinner table.  Tears fell out of my eyes.  I have a 19 year old daughter, but she’s no longer regularly at my dinner table.

I felt sad for myself, but then I remembered my birds on my shoulder.  I breathed gently, and joined in the Namaste at the end of our session.  I bowed to the spirit of my daughter, the spirit of my wayward eldest son, and the spirit of my youngest son with an extra chromosome.  May those little birds perched on my shoulder remind me that it is ok to let them go.  It is only then they are free.