leaning out

This essay was first published on January 19, 2017.  It is worth a repeat because Dr. Yona Lunsky recently asked me for a few words about having a kid with a disability for a talk she did this weekend for the Down Syndrome Research Foundation conference.  I scratched out a few thoughts for her and will follow up with another post, specifically about moms’ mental health.   But first, this… 

Leaning Out

…or the work-life balance and how I’m totally faking it all the time.

I’ve never struggled this much to prepare a presentation.  I was asked to speak to the Rare Disease Foundation‘s parent support group in Vancouver on the topic of work-life balance.  I pulled some quotes.  Wrote speaking notes.  Created some questions.  The presentation was last night and still I floundered.  I have no definitive solution to how to achieve work-life balance, especially if you have a kid with a disability, like I do.

How do you balance work and life?  I have no freakin’ idea.  I didn’t know how to do it when I had two typically-developing kids in the 1990’s, and I most certainly don’t know how to do it now, with my remaining complicated kid in my nest.

I called my talk Leaning Out to temper Facebook COO Sheryl Sandberg’s book, Leaning In.  Her book is described as ‘compelling women to reach their full potential at work.’ Well, in November, I had to resign from my job because I couldn’t figure out how to be available to my kid and to keep working in a staff position.  So I’ve leaned out.  Way out.

I used to believe that you can have it all, but not all at the same time.  My youngest son has taught me that having it all is overrated – what is this ‘all’ anyhow?  A big house, full-time job, annual tropical vacations?  I think we’ve been sold a big fat lie about what’s really important in life.

My talk was a jumble of what I’ve learned over the past 23 years of motherhood.  In the paid work world, I’ve worked full-time, part-time, on contract and as a freelancer.  Other times I’ve immersed myself in unpaid work.  Some days I fill with grocery shopping and sitting on a log, watching the dogs at Kitsilano dog beach.  In leaning out, I’ve been humbled about how much I don’t know.  It was so easy to adopt an identity when I had a job – it was handed to me in a position description. Now, I’m making it up as I go along.

Here is some inspiration that I lean on instead to find my way.  As Ian Brown says, having a kid with a disability means recalibrating all the time.   Most of this is not in your control. In redefining my own identity, these three philosophies help.

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1. Reject the Perfect
Brene Brown describes this best in her TEDTalk, The Power of Vulnerability. She says, “imperfections are not inadequacies; they are reminders that we’re all in this together.” We must stop pretending everything is okay all the time and allow ourselves to be vulnerable.  To do this, we have to find safe places to let our guards down to stop being ‘special needs mom’ cheerleaders – like with other moms over coffee or Facebook and in support groups like one I spoke to last night.  It is so important to find people who demonstrate that they’ve got your back, no matter what.  (That, and never clean your house before another mom comes over – this sets a really bad precedent).

 

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2.  Embrace the Slow 
Having a kid with a difference forces you to get off the ‘regular person’ treadmill of life.  Life is busy, yes, but in a different way.  You get transported to a different planet that you never bought a ticket to – one with great frustrations with hospitals, society, social services and education systems.  There are times of great slowness – while helping a child get dressed, or waiting for a whole sentence to come out, or summoning all your patience for a kid to finish their meal.  In these slow times, it is so important to embrace the small joy, as Lisa Bonchek Adams gently reminded us.

I’m also fond of this New York Times Essay by Tim Kreider called The Busy Trap.  In it, he says, “busyness serves as a kind of existential reassurance, a hedge against emptiness; obviously your life cannot possibly be silly or trivial or meaningless if you are so busy, completely booked, in demand every hour of the day”.  Carl Honore’s In Praise of Slow book and movement also offers similar sage guidance.

 

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3.  Remember that unpaid work is work too.
Finally, I suggested banning the words ‘just a mom’ and ‘volunteering’ from your vocabulary.  Work is work is work.  We focus so much on what we do and how we do it, we forget about the why, as Simon Sinek reminds us.  Caring for another vulnerable human being is the most important work there is.  It is what makes our world go round. Our society doesn’t value unpaid work, but that doesn’t mean that we shouldn’t value work that doesn’t come with a paycheque.  Think about writing a Mom Resume that outlines all the skills you’ve acquired since your child was born.  Writing it down gives it power and makes it real.

But sadly for last night’s audience, I had no real wisdom, no solutions, no fixes, no way to achieve this elusive work-life balance. I mostly talked out of my butt, and used other people’s words as inspiration.  I was pleased to spark conversation, and it was heartening that others felt safe enough to open up about their own struggles.

Accept that recalibrating is okay and to be expected.  Talk about your imperfect life in safe spaces.  And value the work you do, even if others don’t.  As I seek acceptance of my current messy life so I can find peace in my heart, I hope you can too – in your own way and in your own time. xo.

a mama bear’s prayer

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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

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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:

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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.

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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.

 

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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.