sharing your story

sharing your story

The original of this infographic can be found here: Sharing Your Story.

As families of kids with disabilities, we get asked to share our family story and our child’s story over and over again in different settings with different professionals.  This infographic is meant to acknowledge the work that goes into sharing stories, gives communication tips to help get messages across and encourages storytellers to take care of themselves.

These tips can also be applied to other storytellers, like patients and caregivers.  Please share this widely as a tool for advocates as they build their own toolkits of resources.  It is helpful for clinicians, educators and other professionals to understand the complexities involved with asking people to tell their story too.  I’ve been fortunate to have given workshops and presentations to audiences of families about The Art of Storytelling too.  Stories are important.  It isn’t just what you say, it is how and why you share stories too.

And now a little story of my own.  This visual was designed by Karen Copeland, who has been a terrific colleague and friend.  Karen is a mom to two teenagers and is no stranger to navigating systems of care or telling her story. She is passionate about providing families with the information and tools they need to be successful. Karen loves creating visuals to strengthen our key messages, hoping to frame information in a way that is easy to understand and impactful. You can see more of Karen’s visuals at her Champions for Community Wellness website.

I first met Karen when I moved to the west coast almost four years ago.  I followed her on Twitter after reading her blog post called I am ‘that’ parent and connected with her immediately online because I’m that parent too.

Karen kindly agreed to meet me for coffee.  I knew very few people here in British Columbia and I wanted to connect up with other moms for all the ‘peer support’ reasons (to share information and resources, for emotional support) but mostly because I was lonely and lost and needed a friend.  Karen was my first mom friend here and I’ll never forget her generosity in taking the time to meet with me, a complete and total stranger who she had met on the Internet.

We met at a Starbucks and clicked immediately. We said we’d collaborate together one day and we have.  She’s designed other infographics with my content:  Sharing the News, Meaningful Family Engagement and Giving a Talk.  We also travelled to Halifax together for a CFAN conference and she and I partnered to deliver presentations from a family perspective to groups of medical students. Karen has been a personal guiding light to me as she’s navigated her own balance of being a fierce advocate and caring for herself.  She also was there for me as a listening friend when I was diagnosed with breast cancer last year.

Our story is a testimonial to many things:  how vital it is for families to be connected together, how ‘just’ moms are always more than just that – we all come with other professional skills.  In Karen’s case, she has wicked design and storytelling talent of her own.  Our story also speaks to the power of two moms bonding over lattes, which can be the engine for innovative collaborations.  In fact, I think meaningful change in the world comes from these ‘kitchen table’ conversations and not from organizations or governments.

I’m deeply grateful for Karen and the other women I’ve met since I’ve become a mother 25 long years ago.  We lift each other up.  We believe in each other. Family to family connections can spark magic – Karen and I are evidence of that.

 

Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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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.

moms gotta chillax

Last night, I watched the first episode of Speechless.  I chuckled uncomfortably at the Minnie Driver character, Mama Bear of a kid with CP.  My husband laughed considerably louder than I did.  I looked around nervously to see if there was a hidden camera in our apartment.

Some highlights from the ‘mom’ character:

She’s intense and a bit wacky
She lectures people on the correct language of disability, disabled parking spots and appropriate accessible accomodations
She’s burned through many schools and moved houses trying finding a good fit for her son
The teachers have a meeting about her before she shows up to the school, to figure out how to ‘handle’ her
Her husband is long-suffering
Her other kids are long-suffering too

This all felt eerily familiar.

I turned to Mike afterwards and asked:  what did you think?  He replied:  I think she even has the same hair as you.  Oh.  Got it.   I thought to myself:  I gotta learn to relax.  

This morning I was sitting on the couch, drinking my coffee.  Teenage Aaron stumbled out of his room and stood in front of the fridge in his underwear.

Moms gotta chillax, he said, talking into the fridge.
What did you say? I said, unable to understand his mumbling at the best of times.
He turned to me and said clearly and definitively:  Moms gotta chillax.  Massage, day spa, books, sushi, baths, he added, counting things moms can do to chillax on his fingers.

Got it dude.  Mama Bears, promise me this weekend you will pick one thing to do to chillax.  Personally, I’m going for a pedicure at the day spa.  My Yoda has spoken.

smile because it happened

Last Friday, my husband and I tacked on two extra hours to our babysitter request to sneak out for after work drinks.  The week had been oddly brutal for random reasons:  Wednesday seemed to be proclaimed be hostile to Sue day, Thursday was littered with unpleasant emails and Friday zoomed in at the tail of never ending to do lists.

I was sitting across from my husband at Portland Craft, pretending I live on Main Street and happily sipping an amaretto sour.  An hour in, Mike started to become  jittery, disappearing to the washroom and ‘checking the score on the hockey game’ on his phone at the table. I was blathering on about something when I saw his gaze shift slightly and his face brighten up.

My daughter Ella suddenly materialized beside me, fresh off a plane from Edmonton.  I had been totally punked, never suspecting my man and girl had been scheming a trip to Vancouver for Mother’s Day weekend for many weeks.   My hands flew to my mouth in shock and I grabbed her, hugged her, and burst into grateful tears.  I last saw her over two months ago, and my heart ached heavy for her.  She is a beautiful young woman, inside and out, a light of my life.

Mike and Ella had a good giggle about my shocked reaction.  I had suspected nothing, and I think this is the first time I had ever been truly surprised.  It is difficult to surprise someone who keeps a tight reign on the family schedule.  I like to know every little thing that’s going on so I can dutifully record all activities in my date book.

I had told Mike that all I wanted for Mother’s Day was to see my far-flung kids, knowing full well my eldest was in the US and not travelling and wistfully hoping for some miracle that Ella (busy, in between semesters of nursing school and working) would visit.

The emptying nest has been a sad phenomenon for me as a mother.  I put my deep longing to see my older children in a little box in my heart that I take out only on occasion:  when I’m driving and a Mumford & Sons song comes on; when I set the table for three instead of five; when I’m trying to fall asleep at night.   These are rather pathetic occurrences and my only solace is that my kids are independent, strong of character and living the lives they want.  And, they generally respond to my texts on a timely basis.  What more can a mother ask for?  My loose parenting philosophy is this:  make sure they are securely attached in their younger years and then let them go.  This is hard heart-breaking work.

Ah, but the reward of seeing them, even rarely, is very rich.  We do not take each other for granted.  All weekend, I delighted in Ella’s presence.  We roamed up and down the streets of Vancouver, eating sushi & burritos & doughnuts (not all at the same time) and shopping for shoes.  We went for pedicures.  Ella played soccer with Aaron’s soccer team.  Both kids made me a lovely breakfast in bed on Mother’s Day – eggs benedict on a sesame bagel with avocado and sausage.  They concocted artful handmade Mother’s Day cards – Aaron under the guidance of his sister, carefully crafting the letters M in Mom like hearts.  We sprawled on the couch together and watched Amazing Race.  We basked in the sunset on Spanish Banks.

Soon it was Sunday night and time to take Ella to the airport.  This was the over part and yes, I cried at the departure drop off area.  Ella said, ‘don’t cry or I’ll cry’ so I stopped and held my sobs until I hit Marine Drive back home.

But then I remembered this good Dr. Seuss quote.  Am I blessed?  Yes.  Have I done my job as a mom?  Yes.  I saw Ella for a sweet 48 hours and enjoyed every single second of it.  Happy Mother’s Day to me and to you too.  I hope that you felt loved and expressed love this weekend, because in the end, that’s all that really matters.

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you’ve got a friend in me

IMG_6099I have been asked to speak about the value of peer support at an upcoming conference.  But this time I’m not sharing research or best practice or information about community peer support programs.  I’ve been asked to simply talk about what peer support means to me, as a mom.

I had mom friends when my two eldest kids were little.  I was a young mom, with no family in town and I didn’t know anybody else with a baby.  I met these friends by stalking them at La Leche League meetings.  There I met crunchy granola moms like me, and our like-minded connections stuck.  These women helped me through the early bleary days of motherhood, a cross-Canada move, and a divorce.  I picked up other mama friends in playgrounds, neighbourhood alleys, school hallways and at my kid’s t-ball games.  I even moved to Norway with my kids to live with one mom friend and her family (long story).

Seven years and one marriage later, enter Aaron, my son with Down syndrome.  At the beginning, it was important for me to be surrounded by moms whose kids also had an extra chromosome.  I began a little moms group, and twelve years later, I am still friends with those awesome moms (the lovely ladies are pictured above).  As Aaron started in his neighbourhood school and I became invisible on the playground as the mom of a kid who was different, I gravitated towards moms who had kids with a ‘special needs’ designation at the school.  Diagnosis didn’t matter then – our commonality was our struggle with systems and society who couldn’t see our kids as kids first. (Don’t worry.  I have friends who don’t have a kid with a disability.  And friends who don’t have kids at all.  And friends that aren’t women, too. I don’t discriminate.  But this is about my mama friends). It took me 12 years, but I had a pretty healthy circle of mom friends in Edmonton.  They were my peeps, my lifeline, my confidantes.

Six months ago, my husband, son and I packed up our stuff and moved to Vancouver.  I am starting from scratch here to build my tribe, for adult friendships are constructed very slowly.

Since we’ve moved, I promised myself I’d say ‘yes’ to any social invitation that came my way.  As as a result, I’ve surprised myself by going to musicals and church events and having a great time.  The one mom I already knew in this Down syndrome world has been exceedingly kind.  Helping us unpack.  Bringing over food when my husband was sick.  Inviting us for dinner.  Introducing me around.  Showing me the ropes.  Another mom, who has an older son with autism, spent an afternoon with me in the coffee shop, going over her carefully researched list of services that she had typed up for me.  I was a mom she didn’t even know.  She also connected us up with the lovely young lady who did childcare for us this summer.  Lucky lucky me.

One morning in June, another mom approached me on the street – ‘I’ve heard of you!’ she said.  She has a young daughter with Down syndrome.  She invited our family over for a barbecue the very next day and we met some of her peeps too.  She kindly and unexpectedly looked after my boy as I drove my husband to the hospital emergency (another long story).  We went bowling with a family whose son plays baseball with Aaron.  I drive around the Lower Mainland to Abbotsford, New West and Squamish to meet with other moms.  I am happily getting to know my sister-in-law – a new mom herself – better too.

Twitter helps.  I find moms who are both writers and who have kids with differences just like me. Soon I am going for beer and burgers at a pub with a new gaggle of moms. Slowly, slowly, it builds.

The bond between mothers with children with differences is very strong.  We know without saying.  We don’t clean up our houses for each other.  We help each other as others have helped us.  We never apologize for our kids.  We appreciate the notion of a very short playdate that includes french fries and quick exits.  We commiserate over the (hilariously-named) Disabilitini.

Mothering any child is hard. We all need support, disability or not, and I wish our world was kinder to moms in general. I feel thankful for my trail of mom friends across Canada and now in Vancouver.  Is peer support valuable?  Hell yes.  But what is peer support, but caring for another human being?  These women don’t provide peer support to me. We are simply each others friends.