guilty as charged

self aware

Well this needs no commentary, except to say that Louis C.K. nails it again.  I’m forever preaching about reflective practice, which doesn’t mean infinite self-love. It means reflecting on what’s happened, thinking about your role in it and figuring out how you are going to be a better person the next time around.

And sometimes, my friends, when I look at my behaviour in uncomfortable situations, I have been an asshole.  (I prefer to call myself a jerk.  But if Louis C.K. says asshole, I’ll say asshole).  I’ve ignored personal texts and calls, been a less-than-ideal friend, begged off social situations, been totally, irrationally emotional about something minor, and have been a rabid judge of people who I feel are judgmental (?!).  I also can be too single-mindedly driven at work, be very mean if I feel someone has wronged one of my children, hold a hellofa grudge, harbour secret schemes to enact revenge on those who have wronged me, and finally, I am often on my high horse.  And I’m just scratching the surface.  Perhaps my ex-friends, ex-work colleagues or ex-boyfriends/spouse can chime in here.

People have told me that I’m such a nice person, and that makes me feel even more guilty for the times that I’m a jerk.  I consider this as the permission for me to say:  hey, sometimes I’m an asshole too.  I am perfectly imperfect and maybe by confessing this, this just makes me more human?  Or maybe it just makes me more of an asshole.  I’ll let you be my judge.

he’s nobody’s mascot

IMG_8757Every once in a while, there is a video floating around Facebook of a student with a disability – often Down syndrome – who is a member of a school sports team.  This typically means that the young man is assigned as a manager or an assistant or has other duties – on the bench.

I find these stories both bitter and sweet.  Bitter because I wish the boy was right on the field or on the court just like the rest of the team.  Sweet because he’s still part of the team, and this seems to make everybody feel good (including, I’m sure, his parents, which if they feel anything like me, are desperate to find their son a sense of belonging).

When Aaron’s school principal suggested he be on the grade 6/7 boys’ basketball team, I hesitated, immediately suspicious.  “He’s not going to be happy sitting on the bench,” I said.  (And neither would I).  “Oh, he’ll play,” the principal assured me.  And play he does.

I wake Aaron up an hour early every Monday morning to take him to school for an 8 am basketball practice.  “DO NOT GET OUT OF THE CAR,” he says when I drop him off in his very typical 12 year old boy way.  Games are Tuesdays after school, and I am permitted to sit on the gym stage and watch him.  Occasionally he waves at me or brings me his water bottle for a refill.  Otherwise, he’s all in on the team.

Every game, he has gotten at least three shifts.  He keeps up with the other boys, despite his bad knee and slower response time, and adjusts quickly to the constantly shifting direction of play on the court.  His team members call out advice to him on the court (Defense Aaron!  Shoot Aaron!), but otherwise he holds his own.  Depending on who is on shift with him, he might get the ball passed to him.  Other kids avoid passing him the ball, even if he’s wide open, but I try to shrug it off. This happens to other players too. He’s often chosen as the kid who throws in the ball from the sideline so at least he gets his hands on the ball.

Today was their third game. On his first shift, Aaron got his first basket.  It went down like this:  he intercepted a long pass, but the ball slipped from his fingers.  The player on the other other team recovered it and passed it back to Aaron.  I’ll repeat that:  the kid on the other team passed the ball to Aaron.  All the boys stood patiently for Aaron to line himself up to throw the ball.  Shoot.  Swoosh.  Score!

The crowd erupted.  Yes, I shed a tear.   His teammates high-fived him.  Aaron gave me a big thumbs up, his face plastered with a grin.  Is this inspiration porn?  I don’t know, and I don’t care.

I love my children equally, but differently.  I remember the first time my now-22 year old son packed up his drums for his first real gig, and when my then-13 year old daughter – a crackerjack player – made the competitive soccer team.  I was thrilled then too.

Aaron’s basket is different in this way:  his team, and the other team made some natural adaptations so that he could score.  Yes, this is probably because Aaron has Down syndrome.  But, to be truthful, that doesn’t matter.  These young men demonstrated compassion for a fellow player.  They simply helped someone who need a hand up. Hyper-competitive, dog-eat-dog world be damned.  I think those boys demonstrated a kind of character education that would make their parents proud.

And to me, that’s more sweet than it is bitter.  Win-win-win all around.  Go Aaron Go! (Edited by Aaron to add:  HELL YA).

the mama bear

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A wise physician once told me that she teaches medical students anger directed at you is often fear instead.  I think understanding what lurks behind anger is key to working with families.  Well, key to working with anyone actually.

I was in a meeting at work this week when my cell buzzed with a call.  Twice.  I left the room to answer the phone.

I missed the call and listened to the voice mail. It was my son’s school phoning.  There had been an ‘incident’ at the school, and no he wasn’t hurt, nobody was hurt, but could I call back.  I looked at the time.  It was 25 minutes until dismissal and my husband was due to pick him up.

Here’s what I felt deep inside in quick succession: a flush of shame, a touch of annoyance, followed by a slow burning rumble of rage.  The shame of getting a call from the principal.  The annoyance of being pulled out of a meeting, assumption to call ‘mom’ first, when they know damn well my husband works from home and the dismissal bell was about to ring.  I called my husband and asked him to head to the school early, and went back to the meeting, my face flushed and my heart rattled.

After finding out the details, I felt agitated at the escalation of an event that the school termed an ‘incident’ that I would call ’12 year old boy mischief.’  This agitation mixed with the shame and annoyance very quickly devolved into anger.  I carried around this anger – which felt like a suitcase full of rocks – well into the evening.  I went to bed early at 9 pm to try to rid myself of the day.  Two days later, I can feel the residual of this rage.  It feels like a bad hangover.

If I pause to unpack that suitcase full of angry rocks, I find something interesting.  Buried deep inside that suitcase is shame.  The shame of being a bad mom for having a kid who is sitting in the principal’s office.  The shame mixed with guilt about being at work (maybe if I was at home, he’d wouldn’t ‘misbehave?’).  The shame about not being able to magically and telepathically control the behaviour of my child while he was at school.

All I could do when I got home was to hug my son and tell him I loved him even when he made mistakes.  Even when other people were angry at him.  I told him that I made mistakes too.  I told him tomorrow was another day.  His eyes were downcast, his mouth was etched into a frown and I knew he felt the shame too.  This made me even more angry.

This is where the Mama Bear is born – from this suitcase full of anger.  So educators & health professionals, the next time you encounter an ‘complaining’ dad, a ‘hysterical’ mom, a ‘crazy’ parent, a ‘difficult’ caregiver, stop before you label them. Recognize that this anger comes from a biological need to protect our loved ones.  Underneath that is sometimes shame, fear and hurt.  (Well, sometimes we are just MAD.  AT YOU.  But that’s another blog post).

I’d suggest taking the time to pause and try to understand the meaning behind the anger, to garner some empathy in your heart and then to demonstrate some compassion.  Try not to label, blame, finger-point or counter-punch with anger back at us.  Poking an angry Mama Bear in the eye with a stick absolutely does not help.  Instead, a little bit of kindness will go a long long way.  The most important thing to consider is:  how might I feel if it was me?

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.

my many mentors

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Me, Laurene Black, Heather Mattson McCrady

Throughout my life, I’ve been blessed to have been gifted mentors to help me along my way.

My first mentor was my boss when I worked at Alberta Health (oh my) 25 years ago, when I was fresh out of university.  Her name was Nandini Kuehn, and she had the unusual mix of graduate degrees in English and Health Care Administration (a combination that I now possess).  From her I learned how to write a decent sentence (drop the dangling participles) and to overcome my paralyzing fear of public speaking.  She pushed me way out of my comfort zone by sending me around the province to present the new hospital funding formula to audiences of (sometimes hostile) health professionals.  This terror was a time of great growth for me.  After my mat leave with my first son, she invited me back to work on a costing project, where I learned even more about myself and dispelled the myths of what I thought I couldn’t do.

Zooming ahead, I learned how to be a good La Leche Leader from a number of exceptional mama bears, including my friend Maureen Andreychuk.  I summoned up my bravery to dare to be published through writer friends like Melissa Steele.  I learned to speak up for myself from Inger Eide, when I lived in Norway with her family.   I was saved from single mom unemployment by the very kind Shirley Groenen.

And finally, these two women pictured above introduced me to my current world of patient and family centred care.  Laurene Black just won a greatly-deserved Centennial Award from CARNA, her nursing association.  She paved the way for the incredible work at the Stollery Children’s Hospital.  From her I learned:  keep your head down, keep going and don’t give up.  Heather Mattson McCrady taught me, by her gentle role modelling, the crucial importance of holding space for families and health care professionals – and the value of active listening.

All these women are a little bit older than me, and a whole lot wiser.  The key for me has been to be open enough to accept their gifts, even if they offered hard lessons to bear.  Personal growth is damn uncomfortable, which is why most of us take great pains to avoid it.  When exceptional people cross your path, say yes instead of no.

In my short time on this earth, I aspire to live up to these words, which were kindly given to me by a mom I knew in Aaron’s old school.  Thank you Nandini, Maureen, Melissa, Inger, Shirley, Laurene and Heather – and many others – for lighting my path along my way.

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over and above

Well, oh my goodness, get out a box of Kleenex when you watch this video from the Royal Alexandra Hospital Foundation in Edmonton.  My husband showed it to me in the waiting room of our son’s reading program.  I had to explain to his reading teacher why I was sobbing when I picked him up.  This story moved me deeply.

First, I love the way the video was shot – with very little dialogue, and the lyrics of the song filling in for actual words.  What happened needs no explanation – just watching the images flickering on the screen is enough.  Of course I also thought of my own beloved grandparents, who left this earth not that long ago.

I read somewhere, and I like to say:  less health care, more caring.  Less services, more serving.  And that’s exactly what this is about.  I’d also call it Over and Above – meaning for those who work in health care:  what have you done today that has gone over and above the call of duty?  And what if everybody goes over and above every single day?   That would automatically cause a tipping point and trigger the health care revolution that we are all so desperate for.

My challenge to health care leaders:  how do you create opportunities for staff and physicians to go over and above?  How do you reward the over and above?  The reason this story is so special is because what happened is so exceptional – in my own experience in the adult health system, anyhow.  What if we all worked together to make caring the norm?

(A special shout-out to visionaries like David Sheard who are doing this important work right now).

when breath becomes air

whenbreath

A long time ago, I used to write book reviews for the Winnipeg Free Press.  This is not a book review.  (If you’d like a good review of this book, click here).

Instead, this is my attempt at deconstructing the reasons I sobbed so hard last night when I read the last chapter of When Breath Becomes Air by Paul Kalanithi.

The book’s premise is well documented, so I’m not sharing any spoilers here.  A respected neurosurgery resident is diagnosed with lung cancer.  Eventually, he dies.  In between the diagnosis and the dying, he lives.  He continues his neurosurgery practice, has a baby with his wife and writes this beautiful book.  His wife Lucy pens the last chapter, which is the point at which I cried uncontrollably last night lying in bed, in the cloak of darkness, with my own husband sleeping by my side.

It took me two days to read this book, as I consumed it in two furious sessions.  This book is about answering a calling to go into health care.  It is about epiphanies mid-residency about the humanity of health care.  It is a conversation about what is the value of a life.  It is about facing death, not unafraid, but with one’s eyes wide open.  This book is mostly about living while one is dying.  And it is a bittersweet reminder that we are all dying, my friends.  Paul’s wife, Lucy, said it best:

Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude.

I’ve marked up my own copy of this book, and plan to reference it when I speak to medical students in February about the experience of having a child with a disability, which also includes the common experiences of grief, humanity and gratitude.  I want to pass all Paul’s wisdom on.

My hope for this little book is that it becomes required reading for all health professional students, similar to The Spirit Catches You.  Dr. Paul Kalanithi then will live on and on through his words, through the students he inspires, through the patients he saved, through his own daughter and through this expression of his love.