the cancermoon

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With honeymoons and babymoons designed to celebrate and relax before major life events, I present: the cancermoon.

I had two long weeks of waiting for surgery after receiving my cancer diagnosis. The first week I frantically wrapped up work engagements, unsure of my future state. The next week I spent telling people, which was both wonderful and awful: wonderful to take inventory of all the lovely people I have in my life, and awful to get a jolt of those who ran for the hills. Thankfully the lovely outweigh the runners and I’m taking a lesson from Taylor Swift and trying to shake off the rest.

I missed having my job as a distraction. As a freelancer, I spend a lot of time in my own head, which is not necessarily a healthy thing when my head wanders into dark places.

So screw it, Mike and I decided to celebrate the grace period called the cancermoon before my surgery date as best we can. I feel perfectly healthy, which is so strange. I’m not sick (yet) but I do have cancer, which comes with its own unwanted sense of foreboding.

Feeling well – physically only, my mental state is another matter – lent itself to our cancermoon. We had booked a trip to Portland the weekend after my diagnosis. Then, post President 45, we decided we did not want to cross the border into a place that doesn’t welcome all people. Mike, Aaron and I recalibrated and nipped across the ocean to Victoria instead.

I loved our little trip. It was very chill. We sat on the packed ferry, quiet and reading. Ordered chicken dips at funky Ruby’s at Hotel Zed. Sourced Philip’s Microbrewery for Mike. Went to Munro’s bookstore for me. Got upgraded to a two bedroom suite. (My luck has changed!). Hung out. Smuggled pineapple fried rice from Foo Food into the Lego Batman movie.

The next day we ventured to China Beach on the west side of the island, Aaron complaining bitterly about the drive. But he perked up upon our arrival and was a surprisingly enthusiastic hiker. At the beach it was chilly but beautiful and sitting on a log watching the tide go out made me acutely aware of my own (in)significance.

Went to Chocolat Favoris and ate the best dipped cone ever (mine: crunchy chocolate hazelnut dip). Monday we packed up and wandered around the inner harbour. Stopped at the Empress Hotel and Mike treated us to cocktails at noon in their new shiny bar. Ventured out to Fort Street and I bought an (inadvertently) itchy hemp sweatshirt, we ate chorizo sandwiches and I found a record store for Mike. We sat motionless on the ferry on the way back where I bought another sweatshirt (this one less itchy) as part 1 of my ‘I have cancer and need comfy clothes’ shopping expedition.  This is all just ordinary stuff that seems really important to me now.

Over the weekend, when we were walking or hiking or eating, for a few minutes at a time, I forgot that I have cancer.   That’s what a cancermoon is all about.

During the week, my lovely friends from my dearly departed job took me out for dinner to Bistro Wagon Rouge, my favourite restaurant in all of Vancouver. My pal Isabel met me for red wine and we spent a lot of time giggling about the ridiculousness of the health care system and my situation as a whole.

My baby girl Ella arrived on Friday and she has provided a happy distraction. Ella is thoughtful, funny and beautiful and the world will be a better place when she graduates from nursing in two years. She insisted Mike and I book an overnight hotel on Saturday, and that we did. We felt less chill than last weekend and more anxious about the impending surgery which was three sleeps away.

This time, I did not stop thinking about cancer for very long. We couldn’t find anywhere to eat downtown on a Saturday night without a 45-minute wait, so we reluctantly had room service instead. My brother kindly arranged tickets to the best venue in Vancouver – the Commodore – but the act was lackluster. But maybe it was me lacking in luster. The next day my favourite weekend brunch restaurant was off – service so slow, food cold – but maybe I was the one who was off, slow and cold? My own perception is all mixed up with reality and so it is really hard to say. But our hotel room was lux and had a full view of the water, not a partial view as we had booked. The guy at check in gave us complimentary cocktails at the bar. I liked lying on the hotel room bed watching the seagulls squawk and dive bomb outside our window. I so enjoyed wandering around the city, holding my Mike’s hand.

The final day of the cancermoon was on Monday. Ella and I deemed it Shopping Distraction day and we were amused at the $2,100 bathrobes at Nordstrom and scoured downtown for soft button up shirts. We think there’s a business opportunity in selling convalescing clothes for old ladies like me. We got our toes done (pink!) and had sushi. That’s a perfect chick day with my perfect chick.

I know I have been mostly in denial but I also appreciate denial’s numbing side effect of pain control. I regret none of the cancermoon and would highly recommend this approach to stay stuck denial as long as you possibly can.

Alas, today is the day after my surgery and I’m sore and cranky and have nothing useful to say. I’m all bandaged up and hopped up on Tylenol 3s and (as my friend Isabel likes to say) this shit suddenly got real.

Ps:  I love the comments on my previous post, so much so that reading them makes me cry.  Thank you for your words, emails, texts, phone calls, flowers, chocolates, socks, cookies, food and cards my dear friends.  A special hat tip to those who have taken my boy Aaron out to have fun.

the grace period

good-vibesI woke up at 4:45 am. The cat heard me rustling and started meowing outside our bedroom door. I have to figure out a way to stay calm. I have the doctor’s appointment at 10 and then nothing so maybe I will go to the dog beach. I’m trying write this on my blog and just post it but I don’t know what to say.

I guess I’ll start here.

I write about disability, motherhood, inclusion and patient & family centred care. Most of my work is drawn from my experiences being the mom to Aaron, who is 13 years old and has Down syndrome.

Now it is my turn. Here’s where family centred care turns into patient centred care. On Monday, I was diagnosed with Invasive Ductal Carcinoma (IDC). I didn’t know what that meant either. It is breast cancer (carcinoma) that started in my milk ducts (ductal) but has spread elsewhere (invasive).

The past three months have been a a diagnostic gong show of delays and fuck ups (thanks British Columbia health system).  I termed this my grace period – the time before everything changes.  But I’ve since realized that all of life between when we are born and when we die is actually a grace period too.

I was numb with shock after the call from my doctor with my pathology results. I’d like go back to feeling comfortably numb, but the shock is slowly starting to peel away like a crusty bandaid, exposing something horrible underneath.

Telling people has been hard. This is especially true for my children – my two adult kids – my beautiful, gentle girl and my tough musician son -and my one teenager with an intellectual disability. I never know how much he understands but it is always more than I can ever know.

I had an important conversation with a friend who generously picked up the phone immediately after he received my email. He shared his wisdom from his family’s own recent experience.

  1. Only surround yourself with people who support you.
  2. Tell everybody who will listen. People want to be involved in some way. Don’t travel this journey alone.
  3. Approach this with positivity. You can choose to be miserable or you can choose to be positive. Choose positivity. You have to endure.

This blog is my version of telling everybody who will listen. Forgive me if I don’t call you back or respond to emails. I’ve read your words and I’ve heard your voice, and for that I am grateful. I’m sorry if I didn’t tell you myself – the telling is hard. I’m not happy to have a new well of writing material to draw upon. No, I didn’t need more street cred in the area of patient and family centred care. But I am a writer and I share stories that are important to me, and writing does helps me make sense of random events. I know that telling my story will help me heal.

Since November, I have seen many health professionals. I choose to only remember the kindnesses. Like the mammography tech at BC Women’s who stroked my arm when I was administered the sharp freezing for my biopsy. (News flash: needles in your boob when you are imprisoned in a mammogram machine really hurt). She also brushed my hair away from my face when it fell into my eyes, causing instant tears to well up in my eyes and slowly drip onto the hospital blue pillow.

My sweet family doctor is a treasure. She called me late one afternoon when I was driving back from my appointment with my terse surgical oncologist. She said: “I just called to see how you are doing.”  She’s the only clinician so far who has taken the time to ask how I was feeling.  I am so thankful for her.

I have surgery booked in a week and then a year’s worth of chemotherapy and radiation treatment. This is the long haul and I’m scared. I’m wearing fear like a heavy cloak – it permeates everywhere.  Most of all, I hate that I’ve hurt the people I love.

Here’s to more simple acts of kindnesses. Here’s to those who took the time to pick up the phone.  Here’s to being open to new people appearing in my life. Here’s to forgiving the people who have already said stupid things. (I’m really busy, but I’ll try to rearrange my schedule if you really need help. Um, thanks?). Here’s to finding humour in the dark.  Here’s to character building (I guess I haven’t had enough). Here’s to comfort for my husband and my children. Here’s to resiliency.

And here’s to grace, too.  I don’t have it right now, but I hope to discover it along the way.

teach our children well

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The timing of last night’s Start with Strengths session could not have been better.  Just three hours earlier, I was standing by my car, listening to my son’s teacher recite everything my boy had done wrong that day.

“What did he do right?” I asked her, tears threatening to spill out of my eyes, my voice tinged with desperation.  Surely there was something.  “Oh yes,” she said, “he participated in our class discussion, did well in English class…” and then reverted back to the ‘rap sheet’ of bad behaviour.  My son sat slumped in the car, knowing full well the tone of our conversation.

I got back into the driver’s seat weary and defeated, my cheeks burning with shame. If I felt like crap, I knew that my son did too.  I also knew there’s got to be a better way.  Later that night, family leader Karen Copeland and Langley principal Chris Wejr confirmed that there was:  a strengths based approach to education.

The session was warm and lively and involved both lecture-style with funky visuals and small group work.  It was a great mix of storytelling, video and interaction.  All the way home I thought about how I had failed miserably to communicate effectively with his teaching team about what’s awesome about my boy.

Learning about what makes my son’s heart sing and then building on that does not mean spoiling or giving into him.  (I hate the term ‘giving in’ – it implies a constant battle.  I so wish his life wasn’t such a big fight, because that always means there are winners and losers.  And he usually loses).

Last night, I confirmed that the research tells us we all perform better when we focus on our strengths, not our weaknesses.  We often label behaviours as negative, instead of seeing the talents they might be masking.  My son often gets in trouble for blurting out how he feels – but expressing his feelings is a good thing, and I admire his talent for word play. Yesterday he angrily called a teacher ‘Trump-Lady’ which is of course not okay, but it does display his good grasp of both current events and the English language.  The key is to redirect his quick wit into something productive instead.

The workshop was powerful.  Chris affirmed that many kids go through school reminded of what they can’t do, not what they can do.  That’s because schools (and the world) concentrate on deficits, not strengths.  But if we work on our deficits all the time, we will only become okay – but if we work on our strengths, we can be outstanding.

Karen and Chris referenced a lot of great work, like Rita Pierson’s TedTalk called Every Kid Deserves a Champion.  (A favourite quote:  kids don’t learn from people they don’t like). This is important to work about human connection for all kids – especially for our kids who struggle with connection.  They talked about helping kids to bring forth what is within.

Chris asked:  how can we help kids see themselves through a different lens?  So that they believe that they CAN, not that they CAN’T.  Kids do not need fixing, as they are not broken and as Karen said, sometimes it starts with remembering what it is about children that brings us joy.

Kudos to Karen and Chris for a well-organized and thoughtful learning opportunity.  I loved that both a parent and a principal shared the podium – it really modelled what true partnership can look like in education.

Today, I had a chance to practice what I learned.  After school when the teacher started to recite my boy’s transgressions, I put up my hand.  Please stop, I said. First tell me something he did well.  Her tone changed and she told me about a picture of a city he’s painting in art class.  Aaron’s demeanour transformed from stressed and distraught to relaxed and smiling. His relief was instantaneous.  Then we were both open to hearing about more constructive feedback.  As Chris said, the struggle is important – that’s where you learn.  It doesn’t mean you don’t address the hard stuff – but why not start with what’s good?

I learned last night to start with www (what went well).  This approach is very powerful and it can make all the difference to a child.  It can also show them that they matter.  And in this world of uncertainty and growing repression, we need more people to feel that they matter, to stand up for what’s right, to make a difference.  That’s what’s called teaching our children well.

you are enough

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Here’s Aaron, age 13, holding our sign at the Women’s March in Vancouver yesterday.  He is no stranger to protests – his dad took him to an anti-pipeline protest a couple of months ago.  We pretty much bring him with us wherever we go.

How do you explain to someone with Down syndrome about what a protest is?  We’ve been talking about injustices in the world with him for a very long time.  We show him articles in the paper.  He helps us collect petitions for campaigns.  We watched the US Presidential debates.  We sit on our bed and giggle at Saturday Night Live’s monologues.  In November, we had to explain our neighbour’s election results to him.  We talked politics with his older brother when he was in town last week from America.  (His brother’s short summary:  we are screwed).

Don’t think that Aaron doesn’t understand, or that we are confusing him.  He totally understands.  Last year during Canada’s election campaign, he turned to us and asked, “Why doesn’t Stephen Harper like brown people?”  Then, at a youth workshop for people with disabilities, in response to a talk about consent, he put his hand up and said, “Donald Trump didn’t have consent!”  No he didn’t my boy.

We had to explain the ‘F’ words on signs at yesterday’s march.  Also, that pussy word, which strikes me as being taken back by its rightful owners – women – as it should be. I told him it was another word for ladies, but only ladies can use it.

At the march, which was more like a slow walk,  we rounded the corner at West Georgia, and the crowd stopped in their tracks in front of the gleaming Trump Tower.  I had only driven past it before, and had never seen it up close. There were security guards standing in the windows, laughing at us.  A hush grew over the protesters.  Then someone raised their hand in the silence and extended their middle finger.  Then someone else did.  Young people, grandmas, everybody…fingers shot up in the air.

Aaron stood there, his eyes huge.  He knows what the middle finger means.  I leaned down to him, “do you want to give the middle finger to Trump?” “CAN I?” he said, not believing his luck – to be given permission for something so forbidden.  “Yes, but only for Trump – do you promise?   Nothing else.” I said.  He nodded and raised his short arm, his finger extended.  The lesson here?  There are times in life you have to say fuck you.  But save that fuck you only for special occasions.

People were at the march for all their own reasons:  to represent people who have been awfully and horribly marginalized, to protest climate change, to support love, to rev their feminist engines.  There were a lot of white liberal people – ourselves included – who have been woken up.  We were there for two reasons – to represent women who are caregivers who are invisible and uncounted.  And for our boy – he who belongs to a community that is systematically marginalized, ignored and discriminated against by real-life people and our own federal and provincial bureaucrats. IN CANADA.  Discrimination against people with differences is not just an American issue – let’s not be too smug about this in Canada.  I will continue to not shut up about this.

For some of us, it is easy to show up at a protest (never forget that for other people it is not so easy).  These people march and protest every day at their keyboards, at appointments, at kitchen tables.  But a march only heightens awareness – it does not actually create change.  That’s where the hard work comes in.  Be vigilant.  Speak up in the way that you can.  Organize.  Call out injustices.  Dare to be visible. To paraphrase our sparkly protest sign which paraphrases Brene Brown, Aaron is enough and you are enough too.

You take your kid with Down syndrome to a protest for this reason – to show him that he has a voice and that it is his job to stand up and use it.  Are we pushing him to be a self-advocate?  Perhaps.  But if Aaron ignores the evil in this world it will be at his own peril.

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.

 

outside of my bubble

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I am guilty of tightly curating the information that flows into my life.  I self-select the people I hang out with and the news that I read.  That’s why this looming Trump presidency is so shocking to me – because (admittedly in my white left-leaning world) I never considered there was even another point of view.  As President Obama counselled us in his farewell speech, “If you’re tired of arguing with strangers on the Internet, try talking with one of them in real life.”

This year I’ve vowed to venture outside my bubble with a commitment to learn more.  Just validating what I already know has become pretty boring.  In 2017, I’d like to be surprised with something new, to be pushed to think outside what I believe to be true.

Yesterday I drove east into the sunrise to Fort Langley to attend TEDxLangleyED.  The theme was the future of learning with a side of courage and curiosity.  As added incentive to get out of my warm bed early on a Saturday morning, I knew one of the speakers, Suzanne Perreault, and wanted to show up to show my support.

I won’t do eight hours of speakers justice by synthesizing it here.  (The organizers promise that the videos will be up on the TED site by March). But I will attempt to share one thing I learned from each speaker.  The problem with conference or events is that we walk out of them inspired and roaring to change, and then we get into our cars and drive back home and all that energy disappears.  Our take-aways get left in the lobby of the venue.  Writing down what I learned yesterday helps make it real and this makes it stick.

From the organizers, I learned about the importance of planning an agenda and crackerjack moderation.  Maria LeRose was seamless in her introductions – she stayed on stage for just the right amount of time and said exactly the right thing to sum up the previous talk and usher in the new one.  She was invisible but she was there – stitching together the speakers and moving things along.  I’ve moderated sessions in the past, and this was a good reminder that moderation is not about the moderator.

Again, a hat tip to the organizers with their planning of the day.  It was the right mix of different styles of talks:  music plus interviews plus talks with slides plus talks without slides plus archived TED videos.  Mixing up the format made the day whizz by and kept things surprising and energizing.

I scribbled notes from the speakers in the dark.  Here are some quotes I remember:

“Do you look at yourself and smile?” – Bruce Cairnie
“Failure will always tell you what you need to hear.” -Brent Hayden
“When did we as a society forget how to move through grief?” -Gabe Penner
“There’s no such thing as problem youth, just youth with problems.”-Sandy Balascak

I learned about interesting presentation styles, like Savanna Flakes, who compared designing meaningful school experiences for all students to the process of creating the Dorito.  She memorably said, referring to kids with exceptional needs:  “all learners have something to contribute to the school community.” Jefferson Hsu, age 10, gave a heartfelt violin performance.  Young and talented student Brett Dick shared a lovely song.

Kathleen Forsythe emphasized the importance of wonder and allowing the capacity to imagine.  John Harris set the stage for the demonstrations of three student virtual reality projects.  Then I felt about a hundred years old, like my dear Grandma when she used to leave a message on my answering machine, saying:  I hate this machine!  But it was good to recognize this in me too.

The three TED videos shown were outstanding, too:
The Surprising Habits of Original Thinkers – Adam Grant
You Have No Idea Where Camels Really Come From – Latif Nasser
What I Learned from 100 Days of Rejection – Jia Jiang

From these videos, I realized that I’m drawn to speakers who explain left-brain concepts (science, biology) in a right-brain way – with humour and storytelling.

I went for a walk at lunchtime to think about what I had heard.  I thought of Kathleen’s words about the wonder of the world – that every moment was a surprise, because you never know what could happen.  My walk was unsurprising, except I stopped to appreciate the warmth of the sun on the cold west coast day, thankful it wasn’t raining (and that one small wonder was enough).

My husband is obsessed with climate change and electric cars, and he would have loved Tim Stephenson’s talk – a science teacher who asks:  what is it that breaks your heart and what are you going to do about it is pretty special.  His call to action, to take a step was enough to make me feel conflicted driving my gas-guzzling car back home.

I had been looking forward to hearing Truepayna Moo speak and was not disappointed.  She spoke about coming to Canada as a Karen person from a refugee camp on the Burma/Thailand border and challenged the idea of the ‘glossed over’ Canadian notion of multiculturalism.  With grace and eloquence, this young woman reminded us to teach our children to ask questions of people who are different, so we can get to know each other on a deeper level.  She pointed out that being a refugee is a badge of honour, of strength and courage, not someone to feel pity for.

Are you still with me?  This is a wholly self-serving post to help me remember my day. I learned something from everybody. Katherine Mulski used humour to tackle the topic of busy (I don’t have time to slow down), Luke Dandurand brought me to tears with his video of his family and shame about what I don’t understand about reconciliation and our treatment of the First Nations people in Canada.  My friend Suzanne Perrault arrived on stage in her sparkly red shoes, full of passion for families who have children with autism, like hers.  She outlined the loss and grief families with children with differences go through, and asked the educators to consider how they organize the (dreaded) IEP meetings at school with families.  I was awed by her own courage to be up there, standing under the blazing lights on a red dotted carpet, and grateful she used the opportunity to give mama bears a voice.

I sat at the back by myself, on the aisle.  I had been fortunate enough to choose a spot behind an immensely talented woman named Victoria Olsen who was drawing a gorgeous sketch for the TEDTalks.  She was drawing on her iPad as people spoke, synthesizing their messages into a quote and illustration. It was fascinating to watch.  She’d pull out a message, draw a colourful quote and then change her mind and erase it and start over again.  She did so much erasing until she was satisfied with the image.  Then she’d have to leave the graphic to move onto the next speaker’s message.  My chance eavesdropping taught me this:  perfect is the enemy of done, and don’t be afraid to erase and start over again.  These are good lessons for life.

We must not assume that we know.  In fact, the wonder in this world is about the unknowing, the being open to surprise, the joy in the warm sun on my face, the listening to understand.  Events like TEDTalks remind me that I know nothing for sure.  This is both humbling and revolutionary at the very same time.

 

 

 

 

 

 

 

How to make it ok (part 2 of 2)

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@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.