amazing grace

On the eve of the American election in 2008, I went down to DC and met up with my American friend, Melissa Steele, to volunteer for Obama in the fading days of his campaign.  I was very fortunate to be at the Washington Post party the night Obama won.  I will never forget the scene after the CNN commentators announced that Obama took Virginia, and was in effect the President of the United States of America.  There was a surge of people to get urgently out of the building, and we all spilled out into the streets.  There, people were laughing and dancing and crying.  We walked past a grocery store, where the employees were jumping up and down and knocking on the windows, eager to join the fray of the celebration.

I’ve watched Obama over the years struggle as President with the bureaucracy, politics and infighting in the government.  But although I don’t agree in all his decisions, I still believe in him and his message of change.  I also believe that he is one of the greatest storytellers ever.  He has this amazing talent to connect authentically with his audience through his words and actions.  I continue to be awed by his rare skill.

Yesterday, I watched the video of Obama delivering the eulogy at the funeral of Rev. Clementa C. Pinckney in Charleston, South Carolina.  Towards the end, he stops and hesitates.  Then he slowly starts singing Amazing Grace. This simple act brought me to tears.  I thought of of the people who died in the church, and the state of America regarding guns and race and hate, and it filled me with great sorrow.

Obama’s gentle gesture was to step outside his carefully prepared speaking notes to connect with his audience, and to reach out to them in the universal language of music.  It was beautiful and spontaneous.  I dearly hope that after he’s done his presidency he will have the freedom to return to inspiring and motivating people, through hope and belief, in changing this messed up beautiful world.

the perks of being aaron

Lest I give the impression that it is all doom and gloom having a kid with a disability – here is our reality to provide some needed balance.  YES systems are BAD.  YES some people who say they will help you DO NOT HELP YOU and this is especially BAD.

But also YES some systems are good, like most things to do with recreation, which are easy to access, and FUN.  Aaron plays Challenger Baseball, which is the most awesomely organized recreation activity for kids with disabilities EVER. You show up with your kid, whatever age, whatever difference they have, and they get assigned a peer buddy to hang out with and they have FUN.  I do not have to get my pediatrician to fill out a form proving Aaron has Down syndrome or have a psychologist administer an IQ test for Aaron to play baseball.  (Sarcasm intended).

(Special Olympics is pretty good, although they demand a cervical spine x-ray for kids with Ds – an x-ray that isn’t even relevant anymore).  

I don’t see Challenger Baseball or Special Olympics as anything ‘special’ – I firmly believe that my kid should play sports as easily as any typically-developing kid can.  Challenger, in particular, makes it easy for this to happen – for my kid to be active, be part of a team, learn some skills and have fun.  There is another group in Vancouver called Soccer Dogs that has a similar philosophy.

This past month has been crammed with some extraordinary activities for Aaron because he has a disability.  I’m totally ok with that, considering all the cursing and struggle he has in the health and school systems – any perks?  Bring ’em on.

The school arranged a day at the Playland at the PNE, which was sponsored by the CKNW Children’s Orphans’ Fund. That was super because it was adapted – shorter line-ups, lots of volunteers to go rides with kids.  In Edmonton, Northlands has a similar event in July called Magic Monday.

There was some pizza and bowling action for the kids with special needs at school on Friday…and a Challenger Jamboree (more pizza) and we attended the Lower Mainland Down Syndrome Society picnic at beautiful Belcarra – there was a nature interpreter who took us families on a tour of the sea life, which was very informative for us prairie folks.

IMG_7225This is a photo of a super activity from Vancouver Fire and Rescue Services.  Aaron and I received an invite from a lovely recreation therapist that I work with at Sunny Hill Health Centre for Children.

We felt very fortunate to be included in this fabulous event – which included even more pizza, real rides in real fire trucks round and round the block with the sirens wailing, and holding the fire hose and aiming at pylons, a building and (most fun) one of the Fire Academy students.  My absolute favourite part of the night was seeing the fire fighters lifting kids up from their wheelchairs into the fire trucks for a ride.  Now that was pretty special. I even got to go for a ride in the fire truck and I COULD NOT STOP SMILING.

I’m not even counting all the kindnesses, lollipops, cookies and extra stuff that I know this kid gets because he’s Aaron.  It is very important for me to pause and be thankful for the people who go the extra mile for our kids.   Lucky?  Yes.  Fortunate?  Yes.  Blessed?  Yes, that too.

The fact is that Aaron has a very good life – he is beloved and he is loved.  And isn’t that what we all want from this earth?

ridiculous moments in health care

IMG_7257Here is the first in a series of my expose:  Ridiculous Moments in Health Care.  It is inspired by a giggle session that I had with Isabel Jordan,  family leader and founder of the Rare Disease Foundation.  

Isabel and I had just met, and were in a downtown coffee shop, swapping stories about health care.  This included tales about hospitals using fax machines IN THE YEAR 2015, notoriously cranky receptionists in clinics, adventures sitting in waiting rooms with small wiggly children for four hours, and the hoops we have to jump through just to get access to our children’s own health information.  There was really nothing we could do but dissolve into giggles over our lattes.

Last week, I was sitting in a walk-in clinic (no, I haven’t found a regular family physician in BC) because I strongly suspected I had strep throat (and I do).  I was given a deli counter number by the receptionist at the front desk.  He excelled at using as few words as possible to interact with patients, like this:

Receptionist:  ‘Name?’
Me: ‘Um, I’ve never been here before.’
Receptionist: ‘Fill out this form.’
Me:  Fills out form and brings it back.
Receptionist:  (Nothing).  Hands me my deli counter number.

I sat for 1.5 hours, which maybe isn’t that bad (?).  I mostly stared at my deli counter number, which was 70.  After the number 69 was called, I looked up in anticipation.

Receptionist (not looking up or standing up or gesturing):  ’70.  Room 4.’

I was 70.  I was to go to Room 4.  I got up and staggered unaccompanied to Room 4.  I wasn’t sure whether to keep the door open or get undressed or where to sit or what.  So I just sat on the treatment bed thing and waited for the doctor.  He came in a few minutes later, swabbed my throat, and I was on my way about 3 minutes later to the pharmacy with a prescription clutched in my hand.

Now, being called ’70’ is a new thing for me.  Was this approach indicative of the strive towards efficiency?  In calling me ’70’ instead of ‘Sue Robins’ the staff member did save about 0.3 seconds of time.  By not standing up and accompanying me to the treatment room, I’d say he saved about 15 seconds.  Ah, but how this efficiency trumped empathy.  This staff member managed to trim down his number of words used in our interaction to a grand total of 8 words.

I do not know how to even begin to start analyzing this from a patient-centred point of view, so I’ll just let this sad little tale stand alone.

’70.  Room 4.’  Another great tale of Ridiculous Moments in Health Care.

the walking to school thing

IMG_7175There is a parade of kids walking to school here in Burnaby – the city next to Vancouver on the Lower Mainland, where we live.  This astonishes me.

The kids are as young as five, some walking with an older sibling, and the vast majority of kids in grades 4 and up are walking to school without their parents.  Some are on bikes, others on skateboards or scooters.

For Aaron and his bad knee, the 17 minute walk to school is quite the hike for him.  But we’ve been walking home after school on my days off, and this morning, we agreed to head out by foot at 8:30 am.

I remember our beloved pediatrician, a long time ago, talking about kids with Down syndrome and weight.  ‘Forget about diets.’ she said.  ‘Keep your kids active instead.’  That’s been our motto since our move here, and Aaron is slowly starting to embrace it.  We try to walk as a natural part of our day – I park far away and we walk to our destination, or he accompanies me reluctantly (it helps if there are sticks available to him) to the mailbox or grocery store.  But he’s moving a heck of a lot more than he ever has in his life.

The mild weather helps.  As does the predisposition of Vancouver-types to burst outside whenever it isn’t raining.  When we lived in a much harsher climate in Edmonton, motivating Aaron to get outside 7 months of the year was a hard sell.  He didn’t like the cold (and neither did I) and he was terrified of falling on the ice.  His bad knee precluded him from skiing, and we were stuck being aimless shopping mall walkers for most of the year.

We did live across the street from Aaron’s school in Edmonton.  He walked to school every day (a slow 5 minute walk for him) – first with one of us, and then gradually by himself, after we accompanied him across the busy street.

The street, a normally quiet residential street, became a freeway at 8 am and 3 pm.  People honking, pulling u-turns and speeding off after dropping their kids off at school.  I bet on average, 10% of kids walked to school.  The rest were dropped off.  We can blame the weather on some of this, but in response to the question:  why aren’t you walking the three blocks to school? Parents answered:  ‘Because of the traffic.  It is too dangerous.’

The irony is that those 90% of people were the ones who contributed to the dangerous traffic.  I asked the school and the city repeatedly for patrols or traffic signs to be placed at the busiest intersection.  ‘Too dangerous’ they said.  Too dangerous for adult patrols, but not too dangerous for the little kids who dared venture to school on foot.

The other barrier to walking to school in Edmonton is the death of the neighbourhood school.  So many parents choose or are mandated to drive their kids across the city to schools for special academic or sports programs.  In Burnaby, they’ve kept the small local school model.  All kids who live in the neighbourhood go to their local schools.  The catchment areas are all small – less than 6 blocks around the school – and so all kids are within walking distance to the school.

Here, all the Burnaby schools have 30 km/hour school zones which are monitored by the RCMP. People truly respect that speed limit and slow down accordingly.  Adult pafrogger,_the_officialtrollers are positioned at the busiest intersections.  A lady, Miss Sheila, is near our school every morning and every afternoon, and she walks out right onto the road with her stop sign to make sure the kids get across ok. This means we no longer have to play a pedestrian version of Frogger when we cross the road.

Here’s to promoting communities and schools that enable kids to walk back and forth to school.  Besides encouraging activity, the walk allows opportunity for Aaron to interact with his classmates walking home and to chat with me about his day. Today he gleefully played the age old, ‘step on mom’s shadow’ game. By the time he reached our front door, he was relaxed and happy.

Kids walking to school.  Win, win, win for everyone.

i take this as a sign

After I wrote about getting back up onto the horse, I flew to Edmonton for my next speaking engagement. I was thoroughly spooked after my last experience, and boarded the plane in a proper foul mood.

I had forgotten my headphones, and couldn’t watch television to pass the time.  I tried to sleep and I couldn’t.  I flipped on my Kindle, and started reading Brene Brown’s Daring Greatly.  In it, was the exact wisdom I needed, drawn from Theodore Roosevelt’s ‘Citizenship in a Republic’ speech of 1910, also known as ‘The Man in the Arena’.

man in the arenaIt is not the critic who counts, but the (wo)man who is actually in the arena.  Brene’s book is written around the premise that ‘If I fail, at least I fail while daring greatly.’  She says we will all get kicked down in the arena if we dare to live a courageous life.

I walked off that plane feeling a whole lot better.  My daughter Ella and her boyfriend Eisech were waiting to give me a hug at the airport.  They kindly drove me to my hotel.  I got my room key and took the elevator to the 7th floor.  The elevator doors opened, and I was treated to this:

IMG_7129After all my ‘climbing back onto that horse’ metaphors, I had apparently been assigned to a room on the ‘horse’ floor at Fantasyland Hotel.  I decided to take this as a sign.

I ordered mac ‘n cheese and cheesecake from room service.  I had a bath and drank some tea.  The next morning, Ella generously brought me a flat white from Starbucks.  We went for a lovely breakfast together.  Just before I went up to the conference room, a rather disheveled gentleman walked past me.  Rather than look away, I looked him in the eye and smiled.

Hello, he said.  How are you?
Good! I said.
Good! he said back.  He paused for a moment:  God bless you, he said.
Thank you, said I, and then he was gone.

And with that, I marched right back up behind that podium.  My girl Ella, who is heading into nursing this fall, was in the audience.  Seeing her there gave me great strength.  She and her gentle heart are the great hope for nursing’s future.

The audience at the Canadian Rehabilitation Nurses conference could not have been more engaged, interested and open-hearted.  At the end, the nurse who had introduced me said she couldn’t come up to say a proper thank you because she was crying too hard.  (Crying in a good way, thankfully).  It was such a privilege to thank nurses for the important work they do to help patients and families heal.  In the end, I did feel blessed.

I’m on the other side of being kicked down in the arena.  As Brene says, “to put our…ideas out the world with no assurance of acceptance – that’s vulnerability.”  For those of us championing a worthy cause, please keep climbing onto that horse and back into the arena.  The worst case scenario happened to me, and I survived.  And if it happens to you, you will too.  Don’t give up.  Take a little break and then keep going.

everybody grows up

IMG_7126This morning, Aaron woke up, came downstairs and announced, “I’m making my own breakfast.”  To avoid meddling, I disappeared and listened to a symphony of pots clanging and cupboard doors opening and closing.  When I peeked in a few minutes later, Aaron was sitting at the dining room table, toasted waffles with honey and four carefully placed blackberries in front of him, as well as a piping hot cup of black coffee (with a straw).  He was reading the paper.

“I’m not playing with my iPad anymore,” he said firmly.  “I’m going to read the paper in the morning.”  Indeed, he was busy searching the newspaper for car ads, his favourite thing.

Now, Aaron is 12 years old.  But it wasn’t that long ago that he needed to be close by, within eyesight at all times.  Otherwise, he’d do whacky things like fill up his dump truck with (used) cat litter or leave the premises on some adventure.

In the past few months, since we’ve moved to Vancouver, I’ve seen Aaron blossom and mature.  He’s definitely a pre-teen and not a little kid anymore.  He pays for purchases himself at the cashier with his own money.  He orders his own Subway sandwich.  He goes to the public washroom solo.  He runs ahead of me after school to beat me home.  He plays street hockey in the cul-de-sac with the neighbourhood kids.  He takes his three wheel scooter up and down the crosswalk by himself.

I feel Aaron’s newfound maturity is worthy of mention, because a mere five years ago, when he was seven years old or so, I despaired at ever having two seconds to myself.  I had to be vigilant at all times for his safety, even when I took a quick shower, or I thought he was sleeping.  (When he was two, he slipped out the front door at 6 am, only to be discovered across the busy street an hour later.  This horrified me and resulted in a greatly barricaded front door).

But this passed!  I can envision leaving Aaron at home while I walk to the mailbox!  Maybe even one day when I go for groceries!  My constant hyper-awareness days are over and I can feel my shoulders relaxing a bit.  Of course, everybody grows up, including kids with Down syndrome.  How I wish I had known that when he was younger, and I hope the moms of younger kids know this too – although Aaron sometimes gets ‘stuck’ in stages in a plateau, he also has taken great leaps of maturity – when he is good and ready.

There’s now opportunity for freedom for all of us…including most of all – him.  Although, I think one of his biggest barriers to independence is his doting mother.  (Um, and that’s me).  Duly noted.

climbing back up on that horse

Cowboy-1Two weeks ago, I was in Edmonton speaking at a health conference.  It went went very sour, very fast.  Fear of this type of response keeps me awake at night.  And then my nightmare – my worse case scenario – actually came to life.

I immediately stopped accepting speaking opportunities.  But I had a problem:  I had two pre-booked engagements, and I public speak a lot in my work at Sunny Hill Health Centre with BC Children’s Hospital.  Well, damn, my avoidance strategy wasn’t going to work.

I considered cancelling my next engagement.  But the program was already printed, and I also considered that I might just be being a big baby.

So the days have ticked by and I’ve been licking my wounds.  I sent letters to the power that be who lead Emergency and Patient Engagement Departments in Alberta.  That made me feel better.  Some people didn’t bother to respond, but I did get a nice phone call from the Patient Care Manager at the University of Alberta Hospitals.  So that helped.  The organizers sent word that despite my detractors, my evaluations from my talk had over 90% satisfaction rate.

So I decided to stop feeling sorry for myself and to carry on.

Tomorrow’s presentation is at the Canadian Rehabilitation Nurses Association national conference.  Oddly, it is back in Edmonton, and even more oddly, it is in the exact same hotel as my disastrous engagement.  I’ve decided to wear the exact same dress.  I’m going to hold my head high and march up to that podium and deliver my message – which is called ‘The Warm Blankets’ – an ode to nurses.  I’ve scoured my notes for anything controversial – I think I’m safe.  I am going to talk about love, compassion, and how nurses can put the humanity back into health care.

I don’t want to become afraid of public speaking because of what happened two weeks ago.  I don’t want one negative experience to define or muzzle me.  So I’m reluctantly climbing back up on that horse.  I don’t mind telling you that I’m really nervous.  But once the worst thing you could ever imagine happens, it is a bit of a relief to be on the other side of it.  Wish me luck my friends.