How to make it ok (part 2 of 2)

screen-shot-2016-12-24-at-8-40-40-am

@yogimemes

A shorter, less profanity-laced version of this essay is up on Huffington Post.

My husband/editor read my previous post and asked in his typically pragmatic way:  so what are you going to do about it?  This is a fair question.  I presented the problem of mothers with kids with disabilities being forced out of the paid workforce. Now what is the solution?

Well, it turns out there are lots of answers to this question, because families of kids with disabilities are incredibly resourceful.  We make lemonade out of lemons every single day.  Sometimes we rant but then we dig deep, put on our big girl pants and get shit done.

So family-friendly employers are rare and our governments don’t care about us.  Here’s what we do instead:

Connect

Whether you call it your herd or your people, it is so important to reach out to find like-minded families.  Before I had Aaron, I called these wonderful women my mom friends – in the disability world, the term is medicalized and called peer support.  No matter – the result is the same.  This means having other women you can talk to who get it.  When my now-adult kids were young, I met my best mom friends at playgroups, La Leche meetings and in the school hallways.

With my third kid, I’ve had to expand my definition of  connecting. Connecting happens through Facebook, Twitter or email in 2016, and that’s ok.  The days of meeting around the kitchen table are rare. I have to be more creative in the ways I get together in this era of busyness.

The mom network of information sharing, particularly in the complex world of disability, is very powerful.  A few months ago, I was in a meeting with health professionals. One of them asked me:  what clinician has taught you the most about resources and services?  I actually laughed when I responded and said:  it wasn’t clinicians who taught me; it was other moms.  It is always other moms.  Recently, on Christmas Eve, a mom emailed me asking a question about renting a pediatric wheelchair.  I didn’t know the answer, so I emailed three other moms and one clinician.  Within 4 hours on Christmas Eve, I heard back from all three moms with detailed responses.  The calibre of the women in my universe continues to impress me.

Alas, adult relationships also take time. I’ve learned to be patient with this process, especially since moving to a new city two years ago. Sometimes I’m lonely. Success to me doesn’t mean having a dozen girlfriends I go to Mexico with every year (although I’d be open to that, ha).  It means having different women at different times to lean on, to ask questions, to bounce ideas off of and to vent with.  One mom and I have an amusing relationship sharing GIFs on Twitter.  Another mom has kindly included me in her group of moms who have a subscription to a local theatre company.  A mom I met at work invited me to her yoga class.  These pieces of friendships make me feel less alone and these women are my great source of support and love.

Organize

I can attest that the only way change has ever happened is when regular folks organize together.  Governments and systems never change on their own – never ever ever.  They only respond to pressure from outside groups to do the right thing.  So much has changed in the disability world over the past 50 years.  People with Down syndrome are no longer automatically institutionalized at birth. Now our kids are included, for the most part, in their community schools. It wasn’t until the 1980’s that heart defects in babies with Down syndrome were even surgically fixed – before that, babies were left to die because of ‘quality of life’ bullshit.   Do you think this positive change happened because of bureaucrats?  No way my friends.  These advancements happened because families stood up, organized and told their stories.  They insisted that the status quo wasn’t okay anymore.  Change came from the people, not from bureaucrats, who, save for rare champion, are only invested in keeping things the same.

Celebrate unpaid work

A long time ago, I belonged to a Ottawa based group called Feminist Mothers At Home.  This group of moms was lobbying the government for recognition of the value of all unpaid caregiving work – including caring for children, elderly parents, or loved ones who were sick or had disabilities.  My involvement with them taught me an early lesson: in society’s eyes, you do have to be counted to count.  Other wiser moms taught me that women are often silenced and the value of speaking our truths.

I’ve never used the terms ‘volunteering’ or ‘stay at home mom.’  I prefer to say unpaid work.  This work is important – uncounted, undervalued, unrecognized – but caring for others is the glue that holds our whole world together.   If I meet someone new, I ask – do you work outside the home or at home?  Because work is work is work – whether you get paid or not.

Recalibrate

When I heard Ian Brown speak in October, he said his son Walker has taught him to constantly recalibrate.  It is true that our kids show us what’s important in life, but I’ve been guilty of ignoring that, or fighting it if it isn’t in alignment with what I thought was true.  A big part of paid work is identity.  I’ve had to constantly adjust my identity over the years and this has been hard.  Give yourself time to grieve for the loss of the so-called perfect life, in order to accept the life you have.  This might mean mourning career plans or graduate degrees.

In some ways, it is easier to wake up, get dressed up, arrive at my office, go to meetings, feel important.  When I have a job, the ‘who’ part of who I am is pre-packaged and handed to me for 7.5 hours a day.  When I’m set adrift on my own, I have to make this up myself, every single day.  Recalibration is about constant change, but recalibration must be done to find peace in your heart.

Open your own damn business

Four years ago, I was a lonely freelancer, picking up writing gigs here and there and working from my desk at home in between school drop off and pick up time.  I never got invited to anybody’s work Christmas party.  I knew that I wasn’t the only independent feeling that way, so my husband and I started a company called Bird Communications.  It began as a community, with photographers, designers, writers, editors, researchers – who all, for their own reasons, didn’t want to work for the ‘man’ in a staff position.  We met once a month for Bird Gatherings at a local coffee shop.  We got to know and care for each other.  We hosted our own damn Christmas party at our house, which was packed with Birds and their young families, all pining for a different model of work.  Slowly we transformed from a social, networking and learning community to a true health communications company.  We began to win paid work projects.  We never promise full-time work, and we place people the best we can, so this model doesn’t work for everybody.  But we help our Birds find contract work and make sure they get paid – an important factor for freelancers.

The lesson here is if you build it, they will come.  The composition of our (now) 26 Birds is interesting – we have many mothers just off maternity leave, or whose kids just began school – and they didn’t want to go back to full-time cubicle-land work.  So they joined us instead.  Of late, we have a number of smart creative moms who are communications or health professionals AND who have kids with disabilities.  They are an untapped, ignored, and simply awesome workforce.  We feel fortunate to have them amongst our midst.

Paid work

I’ve learned some hard lessons from the paid work world.  If I do venture back into that arena, I’ll choose my employer more carefully.  At my interview, I’ll ask some hard questions, like:  what happens if my child is hospitalized and I have to take time off work? How flexible are your hours, really?  I’d ask around about the work culture to see if it is an employer more interested in delivery of work than the optics of me sitting at my desk every day.

I’d better inform myself about benefits and paid leaves.  When my son was in the hospital last year, I was told that there was no paid leave for me to take time off work because I was in an out-of-scope position.  At the time, I was so whacked out with stress that I didn’t question this – I merely dutifully took a week off without pay.  Later, I found out there was a provision for such an absence.  It was my own fault for not contacting human resources and knowing my rights.

Part of having children is redefining what success looks like.  This is different for every woman.  For me, this means more leaning out, more acknowledging that 18 months in a position isn’t a failure, recognizing that I need to be fluid with both my identity and how I define myself.  Sometimes work is sometimes paid and sometimes it is not.   This also means suspending judgment and supporting other women in their choices.  The mommy wars is so distracting from the real issues at hand – you never know what your decision would be unless you walk in someone else’s shoes.  We are all doing the best we can.

Finally, 2016, I’m exhausted from keeping the system’s secrets.  I’ll cycle back to the cheeky quote at the beginning of this long essay. My 2017 resolution is based on a rather irreverent book I picked up over the holidays:  The Life-Changing Magic of Not Giving a F**k by Sarah Knight.  Be irreverent about things that don’t matter so you have time to be reverent about stuff that does.

Stand up.  Band together.  Use your voice.  You are bad-ass.  You are a sorcerer of divine light.  Don’t ever allow anybody to take that away from you.

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.

mothers who are tired

Screen Shot 2016-07-07 at 10.08.38 PM

Recently, I gobbled up a long form essay in Vela by Rufi Thorpe called Mother, Writer, Monster, Maid.  In it, there were shades of Elisa Albert’s After Birth, which to me, was the first honest published writing about motherhood since Salon’s now-defunct Mothers Who Think.

I have no commentary as of late; I’m just tired.  I’ve retreated into reading, listening to Sinatra, baking chocolate chip cookies, playing endless games of Trouble and picking up my husband’s errant socks.  Take the time to consume Thorpe’s piece and you will see that’s ok.  Motherhood is stuffed full of so many dichotomies:  the love/the hate, the heartbroken/the joy, the bored/the interesting.  I’ve never figured it out; it is just a messy stew of boomeranged emotions.

As I embark on my 24th year of mothering, there’s no pause in sight – my youngest son, a teenager but not, needs me more, not less.  His disability adds a fine net of complexity over everything, like a soft mist setting on a shiny day.  I achingly miss my older two children, but they are not here.  Most worrisome is my eldest son, who lives in America, a country imploding into a boiling rage.

So much is out of my serenity prayer – what I can control and what I cannot – that I hunker down to search for peace in my heart.  That, and methodically climbing through green prickly forests in open-toed sandals searching for good sticks and logs that look like alligators is all that I can possibly do.

my great nordic breakdown

nordicbreakF1

Illustration by Lindsay Campbell

Just for something completely different, here’s an essay that I had published in the Globe & Mail’s Facts and Arguments this morning – My Great Nordic Breakdown.

You know when you are at a meeting and they ask the ice-breaker question:   tell us something nobody knows about you?  Well, this is my answer to that question.  After my first marriage broke up, I lived in Norway for five months with my two eldest kids when they were 7 & 4 years old.  While I have a journal I kept during that time (buried deep in a box), I have never written about our odd adventure.

The writer background is this:  an editor of another prestigious newspaper was interested in the story, but when I submitted it, she said:  this isn’t a good fit.  So after a couple of days of feeling hurt by this, I dusted myself off and submitted it to the Globe.  Who accepted it.  There’s a great amount of rejection in this line of work.  But this is a good lesson in not giving up.

The Globe and Mail has been good to me.  This is my third Facts and Argument essay that I’ve had published, and I had another one accepted that I had to withdraw because of a long story that I can’t tell you.  So to all my writer friends out here:  try the Globe!  They don’t pay, but the byline is nice on your CV!   And they are friendly to mama writers.  An editor there once told me:  if it makes me laugh or cry, I’ll publish it.

ps:  Don’t read the online comments.  Never read the online comments.  I sadly forgot to take my own advice this morning.  Ugh.

an ode for the chick trip

IMG_9007

Ella conquers the Fisherman Wharf’s In-n-Out Burger

My husband and I have a total of five children in our blended (blender) family.  Two from his first marriage, two from my first marriage, and our love child who we had together.  Only one of these children is female.  That would be my daughter Ella, now 19.  Over the years, there was a need for a regular chick trip to get away from the testosterone fuelled chaos that lived in our house.

One of the (few?) things I have done right as a mother is that I have spent time individually with each of my kids.  These have taken the shape of date nights, lunches out and trips away.  I captured my eldest son, now 22, only once, when we went to DC together when he was 16 so he could go to a suspiciously-named event called the Maryland Death Fest.  More regularly, my youngest son and I often nip out for movie and sushi dates.

There are so many advantages to this:  alone, you see your children with an individual lens.  It is no longer ‘the children’ and ‘the parents’ – your relationship grows a touch of the more personal – and you can get to know each other as people, not as family-defined roles.  There’s that old adage that all children want from their parents is time, and I believe that’s true, no matter how old they get.

And then there’s the lovely Ella.  Born two weeks early of round head and big brown eyes, she’s transformed into a confident and gentle young woman.  When she was 11, she wanted to visit her birthplace of Winnipeg, so off to Winnipeg we went for our premiere chick trip.  We got our our toenails painted for the first time together and drove past the hospital where she was born.

In 2010 we ventured to Seattle to start our new tradition of travelling for food.  We went to the Blue Ribbon Cooking School for a class, experienced the (worth it) line-ups at Salumi (best sandwich ever, Ella proclaimed), toured the Pike Place Market, and ate fresh banana cream pie from Dahlia Bakery while watching chick flicks in our hotel room beds.  At Christmas in November in Jasper later that year, we indulged in two days of food demonstrations and eating with gaggles of other moms and daughters on their own chick trips.  We met in Chicago four years ago when she was 15, where we had a particularly strange trip which included stumbling upon hundreds of nude bicyclists (twice, which was extremely traumatizing to both of us) and sitting in the front wet row at Blue Man Group.  We ate a lot in Chicago too, at the Girl & the Goat, and requisite food tour eating of deep dish pizza and hot dogs the Chicago way.

But then life got busy.  Ella entered her last year of high school, and took her gap year off and worked as a baker’s assistant.  This year she began her nursing program at university.  She acquired a beloved boyfriend and it became harder to tear her away for lots of good reasons.  Time passed.  A few months ago, we managed to nail down a date and location.  I booked our tickets quickly, before life interfered, and two weeks ago we met in San Francisco, the City by the Bay.

In true chick trip fashion, we ate.  A lot.  Crumble cake at Mama’s, fancy dinner at Foreign Cinema, Italian fare on our food tour, egg sandwiches everywhere, and an important In-n-Out Burger.  We walked.  A lot.  For two girls from the prairies, we walked until our legs were shaking, up and down the famous hills of San Francisco.  We went on a silly double decker bus tour, where our faces almost got blown off on the Golden Gate Bridge.  We visited Alcatraz in the rain, which was particularly delightful because Ella chose this activity and it was an experience I would have never picked myself.

Basically, we thoroughly enjoyed each other for three days. I tried my best not to chatter incessantly nor repeat myself – both bad habits of mine. Then we reluctantly boarded separate airplanes and went back to our regular lives.

But when I’m trying to fall asleep at night, thinking about work or worrying about money, I remember my time with Ella.  I think about us hopping on the cable car at twilight, and the driver taking a run at the infamous hills on Mason Street, and ooohing at the snippets of views of pastel Victorians and twinkly bridges as we rumbled past, me nestled beside my favourite girl in the whole entire world.

Ella is brave and kind.  She is beautiful inside and out, and I feel as if the world is lucky to have her.  I feel gratitude wash over me for the time I shared with her and for being granted the gift of being her mom.

My prescription for you is to spend time with each of your children.  Get to know them as people, not just as your offspring.  It doesn’t have to be as epic as a cross-country jaunt – this can be done by simple things, like walking home slowly from school, arranging anticipated dates to the burger joint, or cooking dinner together in the kitchen.

I know I’m going to sound like a grandma here…but they do grow up.  My time with my adult children is now a rare and precious thing.  Slow down, and remember to like your children too…not just love them.  As Ella wisely told me:  it is hard when you think it is going to be one way, and then it changes.  Such as life – it feels like they are going to be little forever – with small pieces of Lego underfoot and the banging of little fists on your bathroom door…and then one day they are suddenly gone.

Edited to add:  my food travels with my kids are chronicled on Foodie Suz Travels:
Jasper 
Washington DC
Seattle
Chicago
San Francisco

 

the mama bear

Screen Shot 2016-01-28 at 10.01.52 PM

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?

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.

IMG_7691

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.