democracy was born

This poem is dedicated to all my friends who are neck-deep in daily advocacy work for themselves or their loved ones.  Power to the people.

Democracy Was Born

Democracy was born
When we boiled the kettle
And laid a clean sheet
On the kitchen table.

Democracy was born
In the needle exchange
With two men, punched and bloody
There, democracy was born
When the young women, the Florence Nightingales
Took them out for a walk
Around the block of the shelter
For a bit of fresh air.

Democracy was born
In a conference hotel room
Sitting on a bed tipping a bottle of red wine
While three moms schemed advocacy efforts.

Democracy is never born
At the polling station
Around the boardroom table
At the bureaucrat’s office
Or in the hallowed chambers.

Instead it lives out loud.
In coffee shops
While breaking bread
On the steps of the legislature
And in the mean streets.

All the new ideas are babies born
Around the kitchen table.

shut up and listen

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Toronto in November

I haven’t travelled by myself since my cancer diagnosis in February.  I’m partially healed (at least physically) now that some time has passed I took the opportunity to attend a child health research conference in Toronto last week. I’ve felt exceedingly vulnerable and reliant on my husband these past few months and I was nervous about travelling solo.  (Thankfully, I had many people in Toronto caring for me:  I’m grateful to Beth, Frank, Donna, Yona and Kate for treating me to meals and their warm company in the evenings).

I’m on CHILD-BRIGHT’s Citizen Engagement Council and had my expenses paid to attend the Brain-Child-Partners Conference.  For the first time in forever, I was at a health conference as a participant, not as a speaker.

I’ve stopped accepting speaking engagements altogether for many reasons:  I’m trying to build up my courage again. I’m figuring out why I speak – my intention – am I speaking for healthy reasons, or just to feed my fragile ego?  I’m also channelling all my depleted energy into my book project.

Being in Toronto as a participant gave me a new perspective on conferences.  If I’m a speaker, I’m all wound up in myself with anxiety before my talk and then I’m hyperalert for feedback afterwards.  This is both a distressing and exhilarating way to be.  Because I’m thinking about me, me, me all the time, I don’t take the time to shut up and actually listen.  Last week in Toronto, I finally simply sat and listened to what others had to say.

The Brain-Child-Partners Conference was unique in this way:  there were at least a dozen family and young adult speakers sprinkled throughout the first two days of the conference.  I had never seen such a variety of speakers, particularly at a research conference.  CHILD-BRIGHT itself is a huge collection of projects that has engaged over 50 families and youth to guide their research.

This conference could have easily self-accredited to be a Patients Included conference with a few adjustments – offering a webinar option for those who couldn’t attend and having scholarships for patient/family attendees.  Certainly the room was stacked with patients and families in the audience.  Most conferences I’ve attended have had a lone token patient speaker (sometimes me) – which is not diverse or representative in any way.  I never felt comfortable with that.  When I’m speaking again, I’ve vowed not to take on any future engagements for conferences that aren’t Patients Included and who do not have a wide representation of speakers.

Here are snippets of what I learned when I finally shut and up and listened.  Many of my insights came in the form of questions to think about.

1. Fix is a word I’m fixated on, admitted Jack Hourigan. She challenged the audience with the question:  How do you feel about the idea of fixing our children’s brains?  What followed was a thoughtful conversation about the point of therapies.  Does intervention have to end for acceptance to begin?

2. I was struck on the reliance on ‘apps’ as a solution to health care problems.  This reminded me of an experience  I had at a Hacking Health event – sometimes the best solution is a human solution, not a technological one.

3. There was a lot of talk about the system needing fixing.  We should never forget that we are all the system.  The system is made up of people, and that’s us – both patients and researchers alike.

4. I wondered how the researchers felt about the balanced ratio of patients/families to researchers at the conference.  I think of this as a quota situation:  the patient and family voices have been excluded for health conferences for so long, it is time for some catch up.  But one health administrator asked:  well what about my voice?  Is the inclusion of patients excluding others?

5. Cardiologist Ariane Marelli shared insight into her years of working with families who have children with congenital heart disease.  What I’ve learned working in medicine is to help families manage uncertainty, she wisely said.  There were many clinicians and researchers there who clearly cared compassionately for patients and their families.

6. If you want to know what youth thinks, just ask them, offered a young audience member named Jessica Geboers in a Youth Engagement Workshop.  (Note:  Jessica is a writer too – check out her perspective on the conference here).  Sometimes the simplest solution is the hardest one to actualize.  Just ask them.  That’s a good mantra for patient-family engagement.

7. 
Jennifer Johannesen‘s talk deeply challenged the conference participants.  She asked are patients valued by researchers only for symbolic reasons?  For us patients and families, she offered, don’t allow flattery to prevent you from asking important questions.  There was lots to chew on – the full text of her talk is here.

8. To me, this conference boiled down to:  how can we each give up power to partner together?  How do we create a sense of belonging for everybody?  How do we ensure that everybody has a voice?  How do patients not get overshadowed by caregivers?

9. Related to that is diversity – and despite having family representation, this group did not reflect the diversity that is present in a hospital waiting room.  There was a lack of youth voice (having the conference on a weekday doesn’t help for school-aged youth). We were a homogenous group:  mostly moms, university educated, upper end of the income bracket.  As Jennifer Johannesen pointed out – whose place are we taking?  We must make room for other voices, in innovate and creative ways.  The most obvious solution to this is not expecting people to be able to take time away from their work/families to fly to Toronto to attend a conference.  We must go to the people and not expect them to come to us.

10. Here’s a gentle reminder to all speakers.  It is difficult to be both a scientist and an excellent communicator.  I watched Dr. Christine Chambers’ exceptional talk about the It Doesn’t Have to Hurt Campaign.  Christine herself is a rare and engaging speaker – she is funny and warm – but she also worked with a graphic designer to create her slide deck.  I wish for all researchers to partner with communications folks to share their important information – and to ban the dreaded ‘reading bullet points off the slides’ approach.  Or at the very least, I’d recommend reading Presentation Zen to pick up some tips about designing slides and delivering talks.  Never forget the power of stories – audiences remember human stories, not data crammed onto a slide.

Finally, here’s my plea: If you are a health conference organizer, please seriously consider including patients and families as speakers and participants.  As patient speaker Symon Hay said about the Brain-Child-Partners conference, this is the start of something new – where our voices matter.  Embed diverse speakers in your program as opposed to offering a separate patient theme or segregated day.

True partnerships between patients and health care professionals will only happen if we see each other as human beings, not as titles or roles.  This means being human at the point of care, in boardrooms and at health conferences too.  This is a concept whose time has come.

moms + mental health

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this super cool pin is from http://www.noraborealis.com

I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons.  First, my thoughts are kind of a mess.  The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability.  The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.

(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters.  Their feelings are valued and significant too.  But their stories are different from my story.  Here goes…).

If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.

When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.

This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart.  I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work.  I also grieve for my older two children who have grown up and left the nest.  I miss them a lot. There is loss there too, but in a different way.

Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.

People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).

Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too.  Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible?   Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.

There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.

In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally.  Don’t be afraid of being still.  Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day.  This is okay because I’m perfectly imperfect too).

I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.

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.

the day i sobbed at the bakery

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I stopped by Gabi & Jules bakery yesterday to pick up an almond croissant and a maple pecan pie. By the end of my transaction, I was sobbing at the front counter, barely able to eke out any words, my face hot and embarrassed by my unexpected show of emotion.

Before the crying, I was perfectly composed and waiting in line to order my baked goods. There was a young man in front of me. I could tell he wanted to chat, so I turned and faced him and smiled. ‘All the food here is good!’ he said. ‘Have you tried everything?’ I asked. ‘YES!,’ he said, bursting to tell me.  ‘I work here! In the back.’

Now I could feel the tears beginning to well up. I swallowed them back as we chatted a bit more.   This young man had some sort of disability – autism maybe – but that doesn’t really matter. He was obviously very proud that he worked in the bakery.

Being employed is so much more than just a pay-cheque – it can offer a sense of value, worth and belonging.   This particular bakery in Port Moody is well known for its inclusive hiring practices. (Here’s a video and article explaining their philosophy).

After the young man left, I mentioned to the nice woman working behind the counter (Sarah, the manager) that my husband recently heard owner Lisa Beecroft speak at a panel for inclusive employment. I kept it together until this point, until I confessed, ‘Our son is 14 and he has Down syndrome. I hope one day an employer like you will give him a chance.’ Then my voice caught and the tears started to seep out. I managed to finish up before fleeing to my car, but not before Sarah said: ‘Bring your son in one day so he can look around!’ This made me cry even more. I’m sure she thought I was odd (and admittedly I am, especially since the dumb cancer, which seems to have broken me open emotionally).

When Aaron was born, I was clouded in many fears for his life: that he wouldn’t find love or belonging or friends or meaningful work. To be truthful, we are still working on helping him with his search for many of these things. I feel hope in my heart for the future with companies like Gabi & Jules taking a chance on all different kinds of people.

I started going to Gabi & Jules because I heard they hired people with disabilities and I wanted to support them. But now I’m a regular there because the baking is just so damn good. (The hazelnut tarts! The granola! And oh the pies). And now that I’ve met one of the bakers in the back, I have a strong sense, as their logo says, the maple pecan pie we ate last night was made with love.

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*Coming up next week! A special guest blog post from my husband, Mike Waddingham, talking about inclusive employment practices.

shed your parkas + titles at the door

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The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.