the reluctant good samaritan

streetOne Saturday night, my husband and I were downtown with two dear friends. We attended a foodie event, stopped for a glass of wine at a lounge, and were heading back to our friend’s car. We were walking down our main street, Jasper Avenue, and it was about 10 pm. It was dark and getting chilly. The sidewalk was filling with loud and rowdy revelers. I was happy we were heading to a quieter part of town.

An old lady walked quickly past us as we were piling into the car. We all turned and watched her, as she was quite elderly and did not have a coat on. She lurched to a stop at the traffic light, and waiting for the light to turn green. My radar perked up, but I was in a jolly mood, and looking forward to our next destination, so I settled into the car.

Suddenly, our friend John said sharply, “Someone should go help that lady.”

We all looked at each other. I was the only female in the vehicle. We figured I’d be the least threatening person to approach her.   I was voted out of the car. I walked to catch up to her, and the light turned green. She was walking FAST. I half ran to catch up to her. I didn’t know what to say.

I put my hand on her arm. I said, “hello, are you out for a walk somewhere?” Her arm was paper-thin and freezing cold. I noticed that she had no socks on.

She looked at me closely with her light blue eyes. “I’m going north of St. Albert,” she said. “I’m going home.”

Now St. Albert is a suburb of our city and many kilometres away. She was also heading east, not north – entirely in the wrong direction. I knew then that John’s instincts were correct. This old lady was lost, and confused.

I wasn’t sure what to do. A young lady came up and was softly speaking to her too. My friends had inched up with their car. I wanted to get her warm, and get her off the mean streets. I asked if she would come with us and we could take her somewhere safe. She hesitated for a moment, but thankfully she agreed to get in.

John was our driver. He spoke to this cold, lost lady so gently and with such great kindness. It was as if he was talking to his grandmother. He found out her name, and he kept using it as he chatted with her, keeping her occupied and calm.

“I got confused when it got dark. It got dark so fast,” she whispered. This was true. She was steps from our vast river valley, which is deserted and would have swallowed her up whole. I was thankful for the warmth of the car.

She kept repeating a street address to us. She had no purse or ID. Should we drive there? we thought.   No, she didn’t know the day of the week. I’m sure that address was a home address from a very long time ago.

We decided to drive a few blocks to the central police station. I got out to explain our situation, but oddly, the station was pitch dark and all locked up. There is no public counter on Saturday nights – having watched a lot of Hill Street Blues and Law & Order, I found this really strange. I had to call 9-1-1.

A police officer arrived immediately. We waited for another car, as he had a vomiting drunk gentleman in the back of his car.  (Police officers!  What a job).

When the other car arrived, the officers said they’d been looking for this lady all day. She was an official missing person. She’d been reported missing from a local hospital many blocks away. She’d been wandering the streets for over eight hours. Cold, lost and hungry.

She seemed wary of the police car. “You aren’t in any trouble,” I assured her. She gave me a big hug before she disappeared into their car.  “Thank you, dear,” she said. And then she was gone.

Now, I’m not telling this Good Samaritan story for any accolades. To be truthful, I saw this lady on the sidewalk and dismissed her because she was waiting patiently at the light, and walking so briskly. But our friend John is the real hero. He insisted that we help her out. So that’s what we did.

I’m haunted by the coldness of her arm. How long before she wandered down by the river, or got disorientated in the remote river valley trails?  How many people passed her on her during her eight hours on the street?   And why, oh why, didn’t anybody help to stop her?

Reflecting back on that night, I wonder why we have such reluctance to help a stranger. Is this an urban, city thing?  Are we so busy that we think we don’t have time to help?  Do we think that this isn’t our problem?  I have renewed respect for the young police officers who were searching for this lovely old lady all day and finally brought her back to safety. I hope she’s finally found her way back home.

the busy thing

 

The trouble with the rat race is that even if you win,
you are still a rat. – Lily Tomlin

Around this time of year, I post the article The Busy Trap on my Facebook page.  Well, this year, in an attempt to avoid the Busy Trap, I’m now off Facebook.  So I’m going to talk about The Busy Trap here instead.

I have been wondering lately if the trauma of the empty nest comes from a terror of being given the gift of time.  Suddenly you have time not driving to soccer practice, not nagging kids about homework, not making meals for a crowd, not doing laundry.  You have time with your partner.  You find yourself standing in your kitchen with nothing to do.

Most of us like to fill that time with The Busy.  Joshua Becker on the Becoming Minimalist explains why we do this in his post:  Nine Lies that Keep Our Schedules Overwhelmed.

I own my own business, and have a decent writing and speaking career.  I also have three children and two step-children.  And a husband.  And two cats.  But I’m purposely not busy.  Aaron has helped me slow down.   I live a quiet life.  I might be in the minority, but Joshua’s piece reminded me that’s ok.

This may be an age thing.  I reside in a city that gains 2,000 new people every month.  There are traffic and crowds everywhere.  I crave the peace of a slower pace.  (I realize that this is why people retire in sleepy towns with warm weather).

Here’s what I have figured out:

You can’t be creative when you are busy.
You don’t pay attention to what’s happening around you when you are busy.
You can’t be grateful when you are busy.

And the sad thing is, when your kids are busy too, they can’t cultivate that creativity, mindfulness or gratefulness.  There’s just no time to think when you are dashing from place to place.

Try sitting on the veranda after work and have a leisurely glass of wine with your partner.  Drop the activities that are scheduled right after school, so you don’t have to rush after you pick up your kids.  Even better, don’t drive, and walk slowly home from school  instead.  Make the time for a long, hot bath with a trashy magazine.  Turn off your phone.  Hide your laptop. Stay in your pajamas on weekend mornings.  Sit around and read the newspapers.  Lie on your couch and watch Downton Abbey with a purring cat on your lap.  Go to bed early so you can read a long luxurious book.

I do all these things all the time.  Maybe this makes me lazy.  But I’m very happy to avoid the alternative, because who wants to be a rat?

That’s All There Is (Boyhood, the movie)

boyhood familyWe saw Boyhood in the retro cinema with the big plushy red seats during the theatre festival. Parking was a bitch, and we hiked a significant distance, passing buskers and bars until we arrived at the theatre, breathless and wanting of popcorn.

The premise for the film from writer/director Richard Linklater is simple: shoot a movie over 12 years with the same actors. Watch a boy, his mom, his sister and his dad all grow up. The boy, actor Ellar Coltrane, was six when the movie began; 18 when the movie ended. Ellar’s character Mason is the same age as my second child, my daughter. It was fascinating to watch the world slide from 2002, with its clunky video games and Harry Potter books, into modern day’s sleek technology. Ellar grows taller and more handsome with time, just as my daughter Ella has grown more beautiful.

Twenty minutes into the movie, my husband started smacking his lips and shifting in his seat. “Settle in,” I whispered, “There are no car chases here.” He sat back in his chair and patiently waited for something to happen. But Boyhood is all about character, not plot. Cast aside all your Hollywood expectations for this quiet film.

Boyhood’s flower slowly blooms over 12 years and 165 minutes. Nothing happens, and yet everything happens. There are the rare big transitions – the mother gets remarried, the dad shows up, a half-sibling is born. But Boyhood is about the gaps buried in between the big dramas of life: the rock collections and the family meals and the jumping on the trampoline.

I loved the mom, played by Patricia Arquette. She ages unapologetically on screen – morphing from 34 to 46. (Funny, she’s the same age as me, too).  She struggles as a single mom, gravitating to the wrong men, forever standing in the kitchen, grabbing onto her life as an academic as her children grow up. She is perfectly imperfect.

She rages at her youngest son as he leaves home, “I just thought there would be more.” Poof and her job as a mother is finished. This is a bitter pill. When they are young, life moves from diaper changing and breastfeeding, to making dinners and herding them out the door in the mornings. The drift away from you is gradual – first they can walk by themselves for a Slurpee, they can take the bus, and then they are out after dark. Then motherhood’s big fluffy cloud floats right over you, and it bam, it is over, without much fanfare, except in your semi-broken heart.

Boyhood reminds us to stop waiting for the big stuff to happen. Embrace the Lego creations cluttering your floor, the procrastination at bedtime, the slow walk home after school, the negotiations in the cereal aisle, the reluctant unloading of the dishwasher, the messy teenage bedroom, the eternal digging in the fridge, the pile of shoes at the back door, the sprawling on the couch watching TV. This is life.

Peggy Lee asks, “Is that all there is?” And Boyhood answers, “Yes. Yes. That’s all there is, my friends.”

the book pile

Since my daughter moved out, she’s been alone on her day off from her job at the bakery. She can’t afford Internet or cable, and there’s only so much cleaning one can do in a 500 square foot garage suite. The other day, she unexpectedly told me, “I want to read more books.”

This is so old school and I was delighted.  I gifted her with The Gone Girl by Gillian Flynn and she’s happily giving me daily plot updates.

Since I dumped Facebook, I’ve been reading more lately too. Here is what has passed through my book pile:

Close your eyes, hold your hands by Chris Bohjalian – A wayward teen, on her own after a nuclear disaster. Compelling and sympathetic.

House in the Sky by Amanda Lindout and Sarah Corbett – I was scared to read this, but someone I trusted recommended it. The true story about the kidnapping of a journalist. Terrifying but surprisingly full of hope and faith.

I am having so much fun here without you by Courtney Maum – well, I read it, hoping to warm to the protagonist. But I hated that guy right to the bitter end.

The Vacationers by Emma Straub – wow, this was lite (not even light), so I read it, yes, on vacation. A family drama set on a holiday in Spain.

The Year She Left Us by Kathryn Ma – another story about troubled girl, told from various points of view. At its heart, it had the interesting theme of international adoption.

The Husband’s Secret by Liane Moriarty – I was embarrassed to have this in my book pile. The cover is cutesy, and all covered in pink flowers. Once I got over my pretention about this book, I liked it. It was set in Sydney, and was a pleasant read with three different story lines that slowly begin to intersect in mostly unexpected ways.

the fall by diogo mainardi

Mainardi_theFall.final

I’ve never read a book written like The Fall by Diogo Mainardi. I’m still not sure I fully understand it. And that’s ok.  Some things are not meant to be fully understood.  They just are.

The Fall is a book about love. It is a father’s search to find meaning in disability – in this case, Diogo’s son Tito’s cerebral palsy. Now, I’ve read a lot of books about disability: starting with Martha Beck’s Expecting Adam when my son was first born, through to Andrew Solomon’s masterpiece Far from The Tree last year. There are so many lovely memoirs from parents (mostly mothers) reflecting on life with their children. Ian Brown waded into the philosophy of disability in his Boy in the Moon. But there’s nothing like The Fall.

The Fall arrived in the mail on Friday afternoon. I finished it on Saturday night. The book is split into little sections, each representing a step taking by Tito on a walk around Venice. Some sections are a sentence. Others are longer. It is a beautiful book, complemented with the occasional photo and excerpts from Diogo’s column with the Brazilian magazine Veja. I cannot properly explain this book.

There’s this:

“We loved Tito so much that we even loved cerebral palsy.”

And this:

“I want to celebrate the value of a life of a disabled son.”

The Fall is about the meaning of a human life. It connects Tito’s birth with art, literature, Neil Young’s music, historical events, math, and the horror inflicted on people with disabilities by the Nazi Action T4.

If this sounds like too much, it isn’t. Diogo carefully illustrates how Tito’s life is connected with all humanity. Tito is part of a beach in Brazil, a Shakespeare play, a painting by Monet. As is repeated like a mantra throughout the book: “That’s what Tito’s story is like: circular.”

We are all human, by the very fact that we exist. And that’s simply enough.

how words speak to me

Louise Kinross is the editor of the fabulous blog from Holland Bloorview Kids Rehabilitation in Toronto.   It is called Bloom.    Louise has always been very supportive of me as a writer, and I’ve been interviewed and published in Bloom a few times.  In fact, she published The Invisible Mom, which was picked up by Huffington Post, and from there I was contacted by the editor of the New York Times Motherlode blog last year, who was interested in a query from me.  From that, Far From My Tree was published on Motherlode and printed in the Sunday Times newspaper last December.  Does it get any better than that?  That was pretty awesome, and Louise had a direct hand in that.

Louise is very connected with all that’s going on with kids and disability in the world.  I’ve had the good fortune to meet her, and present with her at meetings and conferences.  I respect her mightily, and see her as a champion for the written word and our secret world as parents of kids with differences here in Canada.

She somehow found Diogo Mainardi, who wrote a book about his son Tito called The Fall.  Louise interviewed him for Bloom, and the transcript results are chock full of wisdom about having a child with a disability.

I often feel so stuck in my thinking:  struggling about Aaron’s lack of friends or on the warpath to make change in the world for future generations, or outraged about injustices, or disappointed by organizations who pay lip service to family volunteers.  You’ll see those themes throughout my blog, along with my pithy attempts to be positive, remember the joy, and stay in the moment.

Diogo’s words suggested a deep acceptance of both his son Tito, and the reality he faces as a boy with cerebral palsy in the world.  The reality of the world is something that I have not yet learned to accept.  I see other parents raging about systems, and people…and I know that I do this too.  However, I also live in fear of becoming a mean and resentful mom, which is what is going to happen if I don’t adopt a more Buddist attitude about the way things actually are.  As my own father likes to say:  What is, is.

I’ve been thinking a lot about Diogo’s blunt words about his son, including:

Obviously, he has no friends.  Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

That response hit me like a bag of bricks.  He’s right, of course when he says that you can’t force tolerance.

And, about changing the world, he says:
We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. 

Diogo has taken a very smart approach to his book.  He acknowledges that nobody is going to read a book about cerebral palsy (except other parents of children with cerebral palsy).   The Fall connects his son’s story with the great, common stories of the world, and has wide appeal.  As he says, we need to enlarge the subject.  Andrew Solomon did that with his Far from the Tree – while his subject is kids with differences, I know his book has been picked up by parents of typical kids, non-parents…he has wide appeal with his approach of masterful storytelling mixed with research.

My hope for this little blog, and my future publications, is that I’m not just a ‘special needs mom’ – I’m seen as a woman, a wife, a mom of three.  I’m struggling with an emptying nest, having a punk rock drummer for my eldest son, finding sanity in a technology-filled world, living in a city I don’t really like, running my own business, and yes, being the mom of my last remaining child at home, who happens to have Down syndrome.  I also love food, movies, travel and books.  I’m more like you than you might think.  And it is through those connections – that sameness – that we are going to foster understanding and compassion of each other’s lives.

(Thank you, Louise, for this super interview with Diogo Mainardi, for championing fledgling writers, and for always making me think).

 

the truth about Down syndrome

For those researchers, clinicians, geneticists, ethicists and law professors who don’t believe what families have to say, yesterday the New York Times published a research-based article containing facts about The Truth about Down Syndrome.

I’ve lost count of the number of times I’ve told audiences at health conferences:

Aaron is a delight and a joy, and having him as part of our lives has changed our family for the better.  Our struggle comes from a society that fears differences and flawed health and education systems, NOT from Aaron himself.

For the professional audiences, who place heavy stock in research and data, I fear my (true, but anecdotal) stories about Aaron ring hollow.  I know I’m often written off as a cheerleading and hysterical mother.  

So thank you to authors and researchers Jamie Edgin and Fabian Fernandez for dispelling myths about Down syndrome.  Perhaps if you don’t believe me, you’ll believe them?  Research actually points to the Down syndrome advantage:  parents experience lower rates of divorce, siblings and kids with Ds report they are happier, medical challenges are now easily identified and fixed.

As for society and systems?  Perhaps if the professionals read this piece and take it to heart, they will stop using offensive language based on their own distorted personal values (newsflash:  my child is not abnormal), and stop Tweeting “Abort it and try again” to prospective families.  If you don’t believe us, believe the facts.  

Now I’m off to take my son and his friend (who both happen to have Down syndrome) to the science museum and then out of lunch afterwards, because our lives are so full of suffering and burden.  Not.