But despite what I just described, I sense I am starting to relate to Owen’s absence differently. Or rather, to his presence. His former presence. Spaces he used to occupy are no longer just ‘empty’, as though defined only by the fact that he used to be there. The spaces, both literal and figurative, are vastly improved with Owen having been there once–but they are no longer frozen in time, as though reserving a place for a ghost we might project from our imaginations. The vacuum Owen left is filling, now occupied with new life and energies.

When Owen was born, I was so confused and devastated that my self identity changed. One day I was a young career woman with so much potential. The next, a harried grieving mother with a sick and disabled child whose own life was as good as over. I could have stayed stuck there, but instead chose to shake off the label quickly and see if I could just keep rolling, continually adapting to a strange new life as best I could without giving in to the temptation of self-pity. Owen’s birth was the first test, but in the ensuing years many more stared me down. Constant challenges to my identity as a mother, a partner, a modern woman. Sometimes I caved, succumbed to the pressure of identifying with a role, becoming a dutiful you-name-it in order to be what others expected. But as the years passed, I got better at being myself–always questioning, wondering, doubting, exploring. Taking whatever came at face value and accepting it as the new normal.

Twelve years of this kind of preparation isn’t lost on me. It’s coming more slowly this time around, but it’s coming. I feel myself shaking off the ‘grieving mother’ label because it’s not all that I am, and not all that I want to be.

A year. Such a long time. And no time at all.

.

The weather that week was stunning.  Crisp, sunny, too bright for my swollen eyes to handle.   I noticed ruefully it was Owen’s favourite kind of weather as we walked together slowly, not saying much.  Cynthia greeted us at the front entrance, dressed in a respectful black pant suit, white blouse underneath, sensible shoes.  So dour for such a sunny day!  I was confused by the attire until I remembered where I was.

She joined us in the front waiting room as we waited for Michael.  The chairs were positioned around the walls but not grouped together.  We formed a stiff equilateral triangle, facing into the middle.  The hard wooden chairs forcing an upright posture.   Cynthia could see how lost we were so she took gentle control of the conversation.   I liked her right away–no nonsense, professional, sensitive, direct.  Either highly trained or highly experienced, or both.

“I am so sorry for your loss.”

“Thank you.”

“I can take you on a tour when Michael arrives.”

“Okay.”

“We have parking at the side, on the street, and across at the Community Centre.”

“Sounds good.”

There were long silences between the light details, which I didn’t mind.  The space was comforting.  Sallyanne was drifting in her own grief, looking stunned.  And Cynthia was hosting our gathering as graciously as possible.

After another long pause she spoke again: “Oh!  You might be relieved to know that Owen is actually here with us now.”  She had leaned forward in her chair as she spoke.  The last half of the sentence was accompanied by a hand gesture – palms open and facing down, parallel to the ground.   Moving through space up and down, patting the air as if to say, “right in this very spot!”  Her voice had dropped as well, like she was sharing a secret.

I exhaled a long breath.  Thoughts raced through my mind.  She had been so professional to this point, understanding our desire for a secular service and approach to Owen’s funeral.   The Funeral Home itself was not associated with a religion and I had really liked its understated neutrality.  So what was this?  Had she thought she’d channeled Owen into the room?!  She looked satisfied, pleased.  This was so weird!

I looked around the room, playing along.  What the hell do I say?

I swallowed, noticing my dry throat.  “That’s a really lovely thought, that he’s somehow here with us. . .”  I started to wonder how we would find a new funeral home on such short notice.

Cynthia looked at me, a bit confused at my response.  She continued,  “Yes, he arrived this morning.”

Wow that’s so random!  I looked at Sallyanne, thought I’d catch her eyes, see if she was freaked out too.

Was my reaction so obvious?  Did she see the confusion and panic on my face?  She must have.  “Jen, she means that Owen’s body is here.”

I looked at Cynthia, who nodded, not quite making sense of what had just happened.  “Yes, that’s right!  He’s downstairs!  Resting and comfortable.”

At that moment I felt myself re-enter the room, felt the wooden back of the chair, noticed my feet on the floor, smelled the flowers in the room.  Right, I thought.   His body.   She means his body.  I hadn’t thought about this at all.

“Downstairs?”

“Yes, in the basement.  We have a room–”

“Is it cold?”

“Yes, it’s a bit cooler in there.  To maintain integrity of the body.”

“Where is he exactly?  Describe how he’s positioned.”

“His body is on a gurney.  He’s on his back.”

I had seen the emergency crew zipping up the black bag two mornings before.  “Is he still in a bag?”

Pause.  “Yes.”

“Clothing?  Blanket?”

“He’s on a blanket.  They removed his clothing for the autopsy.”

I felt a cold wave rush through my body.  I shuddered.  I don’t know exactly when I started to cry.

“Please wrap him in something.  Please.”

She didn’t miss a beat. “Of course.  I will go now.”

She returned ten minutes later.  “I laid more blankets under him and wrapped his body in another blanket.  He looks much more comfortable now.”

I felt a grim, temporary relief.  I returned later that day with a set of clean pajamas.

However, I had completely underestimated – or rather, didn’t anticipate at all – how difficult it would be to return to the hospital itself.  I hadn’t been there for over a year; certainly not at all since Owen died.  As I walked the halls, ate lunch in the cafeteria, visited old friends on the wards – I felt like an outsider looking in.  I hadn’t ever minded going to the hospital for appointments – it was familiar and friendly.  Where our peeps were.   Overnights and procedures were a different story altogether – but it was a love/hate relationship that was more love than hate.  And now?  I was just passing through.

It all felt a bit dreamlike.  Sad and full of reminders:  Owen used to roll through these halls.  We used to look out that window.  That’s where we always sat to watch the glass-encased elevators.  There’s the store where we bought his feeding supplies.

I awoke from the haze long enough to assist a young mother, who was struggling to position her daughter over a toilet in the public washroom.  The little girl had had surgery on her leg and was crying, her new box of purple sparkle ponies offering little relief from the discomfort of the cold surfaces and internal pressures. I didn’t do much but it felt good to be involved; the mom carried her daughter to the change table and I wheeled her chair over and gathered her things.

As her mother adjusted her clothing the girl eyed me suspiciously as I stood by, holding her box of ponies.  I placed the box on the change table near her head, moving slowly like I had been told to drop my weapon.  I withdrew my hand and bent down to her eye level, keeping a respectful distance. I held her gaze and said softly, “I really like your ponies.”  I wasn’t sure if I had crossed a line with her or not – she didn’t respond right away.  She looked at me for another short moment, then at the ponies.  Then back again.  A big slow grin crossed her face.  “Thanks! I like them too!”

It was enough to do me in.  I left the washroom and took the elevator down to P3, my usual parking floor.  I sat in the car for a while, and cried.

Derek Parfit is a living philosopher who recently published a 1600-page book called On What Matters. His very original ideas about self-identity and on, well, things that matter, is so exciting to me I am hesitant to read more, just in case I am wrong about what I think he is saying. So, with all due to credit to Mr. Parfit for these ideas, I take these notions as my own and continue to refine my own thinking.

I am captivated by the idea that there could be a non-religious universal morality. A set of principles that exists whether we (as humans) perceive them or not. I don’t yet want to call myself an atheist (just in case) but I shudder at the trappings of man-made religions – which is to say I shudder at religion in general. So you will see why these ideas appeal to me. Parfit tries to synthesize various philosophical approaches to morality, which include many variations of the old chestnut: do unto others as you would have them do unto you. He is not offering a list of commands carved in stone – rather, he suggests that there must be a universal way for us to approach morality, which when adhered to, will have the benefit of serving our collective humanity.

So with the idea of a universal morality in hand I follow the breadcrumb trail to considering an individual life and what it is for.  What does it mean, what does a ‘good’ one look like?   An answer I like: our individual measure can be weighed on what we contribute back into the whole, most notably through the memories and work of others.  And the contribution should be offered with the intention of not harming–or better yet, supporting–future populations.

We could ask ourselves, how will others hold us in their memories?  What will they tell their children about us? How will we leave a mark that in some way, big or small, makes a difference to people who don’t exist yet?  Before you let this stress you out, there is no need to be too literal – rest assured, our actual contributions will inevitably fade over time, as will the memories of us.  But an impression on the organism, humanity as a whole, will have been made.  The one act of kindness or love to another will ripple through and out and down in ways we can’t even imagine.  We just have to trust that it will, and not look to see the results of our influence – otherwise the ego takes over and makes it all about us as individuals again.

Here’s the exciting part for me: I think this is the missing piece that I have been seeking, consciously or not, pretty much since the day Owen was born.  I can articulate in clearer terms now how Owen’s contribution to the world was and continues to be meaningful. And how my work with telling a part of our story, writing a book, offering it back to the whole, matters hugely.

And this, which I am keen to write and talk about more and more:  scurry and panic and individual striving don’t contribute to what matters.  Pushing our selves (or, to bring it back to a topic I know intimately, our disabled children) to meet a ‘norm’ or to keep up with others is literally wasting our lives.

Bodies come and go.  But the human organism will continue to grow, evolve, shift – and all of us here, now, are responsible for its future.   Surely we don’t need religion to tell us how to behave?

(I took these photos on a tour of the Academy of Realist Art in Toronto, where my friend Jen was a student this summer.  Hers is the last painting (a work in progress), created during a Caravaggio class.)