a mama bear’s prayer

screen-shot-2016-09-26-at-3-21-17-pm

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 leave

IMG_0894

Each morning we wake up at our leisure, sit on the red couch and write our plan for the day in my little coil scribbler.

It often starts with an egg salad sandwich for breakfast and moves to ‘Mom work’ which means me closing myself in a windowless office for two hours to write while Aaron watches obnoxiously-loud Johnny Test on TV.  Then electronics off and we begin our time together.  The day stretches out before us like a prairie sky.

My mantras this summer, the summer of my leave, are this:
1. Stay in the moment
2. Move at Aaron’s pace

I rue the day 15 years ago when I said, in response to yelling at my then 5 + 8 year old children:  I wish I was a more patient mom.  The Baby Gods heard me and two years later they brought me a third child named Aaron.  I’ve calculated a direct correlation:  the faster I try to move Aaron along, the slower he goes.

So slow we go.  We pick one nature outing a day and sandwich that with meals, errands and meandering strolls.  I distinctly feel as if I’ve regressed ten years and am at home with a toddler instead of a budding teenager.  Aaron craves both routine and unstructured time with his people of comfort.  Why did I think I could sign him up for a variety of day camps, just like other moms do with their kids?  This year is a stark reminder that I am not just like other moms and Aaron is not just like other kids.  Even in contemplating this complex web of summer childcare arrangements, I was in denial about our differences. This leave is my humbling, a sign that I was getting too big for my britches.  It also shows me how a lack of childcare options for older children with disabilities pushes families into poverty.  (But that is another topic for another time).

So here we are, making lemonade out of life.  Despite the adolescent defiance, the need to negotiate every move and the mortification of being seen with his mother in public, he sidles up to me at least once a day and says, I love you Mom.  Other days, This is the best day ever.   His relief at not being dropped off at a different summer camp every week, complete with a different routine and different people, is palpable.  And that’s gotta be enough.  Enough for the lost income and the stalled career, for if you really try to live in the moment, you know the moments are soon over and then they are simply gone.

We’ve gone for hikes by canyons with little cousins, played an excessive amount of mini-golf, brought our bird book to the sanctuary to identify our feathered friends, munched on popcorn in dark air conditioned movie theatres.  Right now, I’m sitting on a log by the dog beach (is there anything more glorious than a beach of dogs?) and Aaron has buried himself deep in the coastline forest, emerging victorious with found sticks and talking to them as if they are people, as he’s apt to do.

I’ll add to my mantras ‘Be Weird’ as my boy is often weird (at least to the typically-developing eye) and I struggle with that reality, particularly in public.  My own deep-rooted 13 year old awkward teenage girl fear of being judged pops right to the surface.  When I ask him:  Why are you making that funny sound? he wisely and matter-of-factly tells me:  It is the Down syndrome way.

Today he picked up a black rock and announced:  This is an asteroid!   Then he scrambled up on a big ocean rock and yelled:  THIS ROCK IS REALLY INTENSE MOM!  Last night, munching on a chorizo taco:  This meal is phenomenal!  He doesn’t stop talking in exclamation marks, except when presented with direct questions from boring adults.

[Many years ago, when Aaron was two, I belonged to a playgroup of kids with disabilities. I remember complaining that Aaron would not stop saying:  mom mom mom mom all the time.  Another mom looked at me with sadness in her eyes and said:  I wish my daughter would say my name, even once.  Her little girl had Angelman syndrome and did not talk at all.  I hung my head in shame, my face flush with my own stupidity.  It was the first of many reminders to watch my words and count my blessings].

Aaron couples his love of language with a never-ending string of knock knock jokes:

Aaron: Knock knock.
Me:  Who is there?
Aaron:  G.
Me:  G who?
Aaron:  God.

Me:  Huh?  That’s it?  God?  What does that mean?
Aaron:  … {Shrugs. Sly grin}.

All children offer up both joy and pain, happy and sad.  If I uncensor myself, I will confess that it is easier to be at my work:  dressed up, adult, respected, uninterrupted in the washroom. In my leave I have left that.  I am dressed down, a mom, invisible and interrupted in the washroom.

Aaron and I have eight more weeks together, but I am going to stop counting.  Life, I tip my hat to you: I’ve been knocked off my pedestal once again, but I want to tell you that the view down here ain’t half-bad.

making time

IMG_7526My husband and I have a date booked every two weeks.  I’m on a second marriage, and I’m no fool when it comes to marriage maintenance.  Last Sunday we meandered over to Deep Cove, which is a gorgeous little town on the North Shore, about half an hour from our house.

We stopped at a deli and picked up Italian sandwiches for a picnic at the beach. We munched on our lunch and watched the kayakers drift out to sea.  Then we wandered aimlessly up and down the beach trails and scrambled over rocks (silly us, in our flip flops).  We ended up at the village and indulged in maple doughnuts at Honey’s Doughnuts.  I will admit to being a sucker for independent gift shops, so I stopped along the main street at Ahoy and Room 6, and it was at one of those shops (I cannot recall) I stumbled upon a gorgeous magazine called Uppercase.  Buried inside was a smart article called Space/Time by Christina Crook.  It was there that I found this quote.

A common symptom of modern life is that there is no time for thought or even for letting the impressions of a day sink in.  Yet it is only when the world enters the heart that it can be made into a soul…Thomas Moore, Care of the Soul

And that’s all I have to say.  Step away from the computer.  Put away your to-do list.  Go outside.  Make the time to sit amongst the trees and the birds and get lost in your thoughts. For this is but our one precious life, and we must make time for what matters.  xo.

be still

Yesterday, I was brewing on a blip with the system that we’ve encountered since moving to Vancouver.  The school’s daycare refuses to consider Aaron for before/after school care unless he ‘secures his own funding’.  And the wait list for government funding for childcare for kids with disabilities is months, even years, for a kid his age.  This lack of care, of course, affects our work schedules in a dire way.

Ruminating on this stupid fact sent me spiralling into a rage.  This rage started to border on outrage, and I began furiously texting my (one) friend here about this great injustice, and feeling meanness wash over me.  I started fixating on all the things that were wrong in my life, like being far away from my beloved Ella, and missing her deeply every day.  I started fretting about my eldest son, who is in scarce email touch and somewhere in America on tour with his band.  The thought started creeping in that I wasn’t creating change fast enough in my new job.  That I had to practice my talk for an upcoming conference.  That the toilet upstairs wasn’t flushing properly.  Then I looked down at my jiggly thighs.  You know that this thread of negative thoughts was going nowhere fast.

I didn’t like feeling that way.  I know of some people who are permanently in a state of rage, and I’m sad for them.  But I also see how easy it is to push over that edge.

So in the midst of my self hate-talk, I laid on my bed and did this:

IMG_6659

be still

Not ironically, I won this picture in a door prize at a special needs mom spa day that my (one) friend here kindly invited me to last month.  It was a lovely day of pedicures, massages and nice food.  And bonus, I even won a coveted door prize that is now hanging in my office at work.

Wait, I have an actual office at work?  With a window?  And a walls to hang pictures up on?  Yes I do.  And I have a job with flexible hours and wide autonomy, where my arrival from Edmonton was trumpeted by a great welcome from the staff?  Uh-huh.  And this job brought our family to Vancouver, land of blossoming cherry trees and mountains and excellent sushi and infinite beauty?  And we are now living close to my only brother and his wonderful family, including my little two year old niece Olive?  And I am now closer to my mom and dad on Vancouver Island than I have in 20 years, and I’m awfully happy about that because we are all getting older?  Yes, yes and yes.

All this occurred to me when I was being still on my bed.  I remembered all the kindnesses that have been bestowed on us over the past month – how other moms that I barely know have given me hugs, so easily welcomed me into their circles, taken me for coffee, and helped me figure out the lay of the land.   When I was still, I could feel that rage about the daycare dissolving away.

Then yesterday my brother took Aaron out for his 12th birthday gift.  I should note that Aaron is obsessed by luxury cars.  He tells me he’s going to work at a Mercedes store when he grows up.

His Uncle Geoff took him to a Porsche dealership, where Aaron took a tour, was feted by the sales staff there, and given a Porsche hat and model car.  Geoff’s friend James whisked Aaron off for a speedy drive through the streets of Vancouver in his brand new red Porsche.  Aaron arrived home very pleased after his birthday experience.  At dinner, I asked him:  How was the tour of the dealership?  How was the ride in the Porsche?

Aaron looked at me, his mouth full of pizza, and said:  Lucky.

I said, lucky?

I am lucky, he repeated.

He is a lucky kid.  I am a lucky mom.  We are all lucky. The next time I am starting to forget that, I’m just going to be still for a while.  I think that’s when I find the peace in my heart.

IMG_6671

aaron not touching the $1.4 million Porsche.

drinking from the firehose

dog-firehoseI had the best intentions at the beginning of the year.  I scheduled half days in my calendar to write. I went for 20 minute walks every day.  I downloaded the Headspace app and dedicated ten minutes each morning to meditate.  I was calm.  I could think.  And then real life interfered.

My husband received a call early one morning that his dad had unexpectedly died.  I flew to Vancouver for a job interview.  We took our family dog Sam into the vet to get him euthanized.  My husband was named executor in his dad’s will.  I got the job in Vancouver.  Aaron was booked for surgery. We are caught up in a strange tornado of grief and excitement and terror and anticipation.

Fast forward:  we got our house ready to list.  It is listed.  I keep it in show home condition and we vacate the house for showings every evening.  We started saying good-bye.  I am wrapping up work projects and scheduling overdue dentist appointments.  We are researching schools in Vancouver.  We are praying that the rental gods shine down on us and we can find somewhere to live.

My leisurely world had suddenly turned upside down.  I started lurching from one activity to another.  I lost my ability to think.  I had no time to reflect.  Any ideas I had for writing evaporated.  There are way too many tasks to tick off.  I don’t like it one bit. My focus has shifted to doing, not being.

I hate the busy thing.  It is a trap, but now I recognize that situationally, life can suck you into the busy vortex.  (Of note: some of this busy I brought on myself.  And some of it is good busy too).  I often talk about reflective practice in my presentations to health professionals.  The only thing I’ve learned over these past three weeks is that you absolutely can’t be creative, reflect, or relax when you are over-scheduled.  There is nothing you can do but swim like mad, and then fall into bed every night and start a new day afresh.  My epiphany is that’s the reality for many professionals that work with our kids.

This morning I had a speaking engagement at the university.  I left a bit early and parked far away so I could hike across the campus and get an a little walk in before my talk.  This afternoon I had 15 minutes to myself.  I turned on my little mediation app and listened to a ten minute session.  I was distracted and fidgety. But at least I did it.

I’ll be back.  I now feel more empathy for those stuck in the busy life, and I’m going to do my best to claw my way back out.   Andy, my mediation guy, has informed me that there is always blue sky beyond the storm clouds.  I’ll find my slow life again, but the next time I’ll see it, it will be many weeks from now, in Vancouver, the land of mountains, ocean and infinite beauty.

 

AA045205

 

 

slow medicine

turtleMeghan O’Rourke wrote a brilliant article for The Atlantic (is there any other kind in that magazine?) called Doctors Tell All – and It’s Bad.

You know when you read something and you think: gosh, I wish I was talented enough to write that?  This is a manifesto for a return to compassion in the health system.

Meghan recounts her own experiences, ill and undiagnosed for ten years, and shares her perspective in her journey with her mom, who had metastatic cancer.

{And YES, the n=1 (or 2, in this case) counts. Stories matter. One person’s story matters}.

She describes the hospital experience as including physicians who were brusque and hostile, harsh lighting, noisy rooms and terrible food. Two years ago, when I was hospitalized overnight after complications from day surgery, all I wanted to do was to go home. The night-time was the worst. The woman beside me was moaning in pain, and the nurse who worked nights didn’t seem to believe that I needed pain medication. Call bells went unanswered, and I literally dragged myself along the floor in order to go to the bathroom. It was really bleak.  I begged to be discharged the next morning – I figured that the misery was the system’s way to keep the length of stay down.  The hospital (despite being shiny and brand new) was hardly a healing place.

Canadians can stop being all smug about our health care system. Yes, our inpatient costs are covered by our public system, but we spent a lot of money without a lot of return. We pay out of pocket for dental, optometry, pharmacy and rehab medicine services. Pile on top of that stories of long wait times, nightmares navigating the system (nightmares even finding our clinic room in vast hospital settings with no wayfinding), long waits for pathology (the 12 days I spent thinking I might have ovarian cancer were the longest in my life) PLUS crappy tales about health professionals who treat us with distain…well, my goodness, things are a bit of a mess, aren’t they?

O’Rourke’s piece confirms that physicians think so too. And while we might not have the managed care or HMOs like the US, there are many similarities. Appointments, particularly with specialists, are rushed. High powered, well-dressed efficiency consultants have marched in to pressure health professionals to shave seconds off of patient interactions to save time (and money).  Where’s the reward for kindness? There isn’t any.

Patients don’t have time and aren’t taught the advocacy skills to make sure all our questions are answered properly.  (Morgan Gleason, age 15, profoundly said:  “doctors go to medical school, but patients don’t go to patient school” – this is brilliant).  I feel for the overworked physicians, who are mostly on a fee-for-service structure for added pressure – for the more patients they see, especially the complex ones, the more they get paid.

And I’ve watched the friendly conversation between health professionals and patients fall by the wayside. That’s the first thing to go in the chase for more volume. I mean, how happy can physicians be in these situations? Surely this stress has to be transferred onto their patients (and the physicians’ own mental health, if you look at the suicide rates for doctors).  You can say the same for all health providers, not just physicians.

I preach that in the pursuit of efficiencies and time saving measures, we have cut out the compassion. Nobody gets paid to sit and hold that elderly lady’s hand in the ED until her family comes.

The solution?

Danielle Ofri quotes Frances Peabody, who tells the graduating medical class of 1925:

 “The secret of the care of the patient is in caring for the patient”

But why are the simple things so hard?

O’Rourke pines for a doctor who understands that conversation is as important as a prescription, a doctor who knows that healing is as important as the surgery.   Me too.

That brings us to Slow Medicine. I love the slow stuff. I saw Carl Honore last January speak at an autism conference, and that was the most important presentation I’ve been to in years. I write about slow here, here and here.

But Slow Medicine! O’Rourke introduces me to that term. I love it. Guess what that brings us: happier doctors and happier patients. Slow Medicine reminds physicians that it is a privilege to serve patients. As I like to say, health care is a noble profession. That needs to start being honoured and recognized by administrators and executives. Patients are not cars in a car factory.  Stop treating them like such.

My biggest take away in my presentations is also the simplest. It is a little acronym, KIDS, borrowed from Children’s Hospital of Philadelphia, that says:

Knock
Introduce yourself
Describe your role and what you are there to do
(And for goodness sakes, please, please, please…) Slow down

Slow medicine.  Slow health care. YES!  An idea whose time has come.

 

 

 

 

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.  All these diverse citizens do the same thing:  meander down the middle of main street, sleepily wave hello to each other, and playfully jostle for position in line for ice cream at the town’s only store.

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 Naramata nirvana and transport it back home?