Within the Embrace of Entropy and The Arrow of Time

There is a row of spruce trees at the back of the yard. The tallest was struck by lightning. I was two rooms deep into the house and the light that came in was the most incredible thing to see. There was a wash of the coldest white and blue. And though there were no shadows everything was eerily defined. The noise that followed was felt as much as it was heard. The tree still stands but almost four years on it hasn’t healed. The strike left a scar that runs down the length of the trunk to the ground. With every season the crack gets deeper.

I had a lovely thought last week. I was driving in the car and just out of the blue it came to me. It was a wonderful memory – well two sort of but they were connected. The memory was of my youngest nephew, Matthew, when he was small.  We had rented a hockey rink for a birthday party and Matthew was so excited to come and get on the ice. He must have been around 4 maybe…I’m not sure… but I do remember how happy he was. The second part also had to do with an arena. My sister brought her boys to see my stepson play and as he came out of the dressing room he said hello to Matthew. Matthew’s whole face lit up because he’d been acknowledged by this older boy heading out to the ice to play. I honestly don’t think he could have been happier that day. He would have loved to play hockey. I’m sure of it. He never got the chance. He was born with an adorable sideways smile and a progressive neuromuscular disease.

Picture time as a hallway broken up by consecutive doors. Each door represents a unit of time. The doors are sheer enough to look back through but there are layers and layers of them. Each one takes you further away from where you have been and try though you may you can never bridge that space between now and then. No matter how much you may long for the “before”, just thin doors of time away, there is only what comes after. We say things like “I would give anything if I could have just one more day…one more hour” but the truth is one more hour or one more day wouldn’t be enough.

The night that Matthew died always comes back to me in sound bites and still pictures – the phone call – the car ride – standing on the porch as they return from the hospital – my sister opening the car door – her face as she tells me and it’s like that flash of lightning filling everything up with something alien and terrifying as I move in slow motion to take her into my arms. The rest of the night, the weeks, the months, the years, are marked by moments of awful clarity distinct as pale figures caught naked in the stark flickering of a strobe light.

Matthew lived 16 years. The brevity of his life along with much of what he endured and what has come to pass since he left us is beyond difficult to fully grasp. I am grateful for the things that offer a counter balance to the downright unfairness of it all. I need those things; like those days in the arena, or any moment I’m called to mind the good things that were a part of his life and what good things he brought to all of ours.

I like to watch the birds in the garden. I can see them as I gaze out the kitchen window. The blue jays scream and argue. The woodpeckers and nuthatches are a circus of acrobats as they negotiate the expanse of tree trunks. There are different kinds of sparrows, cardinal couples, and flocks of dark-eyed juncos. In the summer there’ll be hummingbirds and orioles. Several times a day the birds will suddenly scatter. I don’t know why. Perhaps there’s a noise, a movement, or a falling shadow that sets them off. Often it’s nothing and they quickly return. Sometimes though, that shadow will be a hunting hawk. Maybe a red tail but more likely a Cooper’s hawk. There will be a flash of darkness and then silence as a few stray feathers float to the ground.

The garden will be silent then, sometimes for hours.  I watch to see if the birds return. And they do but I can never tell if they’re the same ones that were here before.  At dawn and dusk there’s always the call of the mourning doves. A storm might blow in and I’ll watch as a curtain of rain sweeps across the fields before it engulfs the house.

I wonder how long it will be until the spruce tree finally falls.

 

 

 

 

 

 

 

 

Music for this post –Noah Gundersen & The Forest Rangers- Day is Gone 

 

 

The Protagonist

A protagonist is defined as the main character in a drama or other literary work. The tone of the story, the moral to be expressed, determines the nature of a main character, that being good or evil. To follow the narrative from the perspective of the protagonist is an opportunity to gain an understanding of the rhythm of the times that are presented to us in the telling of the tale, fictional or real. Some synonyms often cited are champion, adventurer, paladin, exemplar, star…in a nutshell, for better or worse, the hero.

 

The shrill screech of the telephone woke me from a deep and empty sleep.

“Hey…”

“Hey.”

“Have you read the obits today?”

“No why?”

“Someone from Dinosaur Club died.”

I sat up in bed, “What happened?”

“Don’t know yet, he was only 17. He had the same type of MD as the boys.”

“Do you want me to come over?”

“No I ‘m okay, thanks any way.”

“Okay… I’ll talk to you later?”

“Alright, love you.”

“Love you too”

     My sister broke the connection and I sat with the phone in my hand processing the information before the buzz of the empty line brought me around to the here and now. I dropped the receiver into the cradle and lay back down. The birds were singing outside and the heat of the day was trying to make its way into the room through the slats of the wooden blinds but it was still cool away from the window. It was harsh news for Sunday morning especially when my Sunday morning was Sunday afternoon due to a late night Saturday. I didn’t know if I said the right thing. Maybe I should have insisted on going down there. I knew she wasn’t okay but I also knew that I couldn’t take it away or make it any better.

      Both of my nephews have Duschenne Muscular Dystrophy and are confined to wheelchairs. There is no cure for Duschenne. There is no treatment. In the rare circumstance when it comes up in conversation whomever I’m talking to will invariable say something like, “Both of her kids…wow …that must be pretty rare both having it.” and I answer as always “No it’s not rare at all for siblings to experience the same genetic disease.” But I know why they say it. To them it must seem a greater injustice, insult to injury really, that not just one great tragedy should strike a family but two or even three. But it is a great fallacy to think that the birth of a child unafflicted by the circumstances of the sibling would lessen the suffering of a parent of a disabled child. There is no joy or leavening of that particular pain.

     My sister and her husband do what they can, what anyone would in their circumstances. They love their boys. They try to do right by them and be good parents. It’s hard in ways that someone who doesn’t have to live it can’t even imagine. They aren’t alone. They are one family in a largely invisible community of parents and children who struggle through, taking joy in small victories and refusing to allow the set backs to drown them for very long. They support each other when they can, walking intersecting paths on a winding and steep road. Dinosaur Club is one of the places where the families can connect. 

  

    It’s a warm spring day and my sister and I are killing time after watching my son’s track meet. We’re in a drug store and after we finished an aroma critique of the perfume aisle we decide to browse the book section. Her attention is caught by the bright picture of a Robert Munsch book that she picks up and exclaims over. To me it seems much too young for the boys and I tell her so. She counters by showing me the cover emblazoned with a young girl roaring away on a souped up wheelchair. She tells me that it’s really difficult to find stories featuring kids with disabilities so she’ll consider it even though the age group isn’t the best. No one seems to want to tell tales that have wheels or crutches, braces or harnesses.

     I cast my mind back over the years and the pages looking for heroes that roll or limp through story lines real or fictional. Raymond Burr comes to mind, his hard eyes staring back at me from 3 AM reruns, fascinating in black and white. The boys are way too young to know about him. If I didn’t have an addiction to late night television I probably wouldn’t know about him either. There is Rick Hansen with his Man in Motion Tour but that’s before their time as well. They’d be more likely to know about Terry Fox as his run to raise money for cancer research is still commemorated each year at most levels of education. Even though Terry died young he would seem like a full grown man to boys my nephews’ ages. It would seem that pages recounting the adventures of the Hardy Boys on wheels or those meddling kids with walkers who break the Case of Evil Zombie Island et al are a rare find.

       Later into the week the after dinner clean up was interrupted by the ringing of the phone. It was my sister. She and my mother had gone to the funeral earlier that day. I knew that it would be difficult for her with the parallels she could not help but draw to her own life nevertheless those were also the reasons it was important to her to be there. I asked her how it was and to my surprise she said that it was okay. She had thought that the mother would be a mess but she said she was holding her own so far. As odd as it sounds my sister said that the 17 year old boy had brought comfort to his mother and eased her suffering in the last hours of his life.

     A flu had run its course through his family and he had died from respiratory failure. The mother told my sister that she had been afraid that her son would fight the end but he hadn’t. He had turned to his mother and told her he wouldn’t need the oxygen anymore and that he just wanted her to hold him. After awhile he slipped away, peacefully. His bravery and dignity, the love that he showed in the last moments of his life, brought her a great comfort.

     These aren’t the sort of things that you usually read about in books. The protagonist is usually made up of more media savvy or lionized epic traits. Children dying of horrible diseases don’t make good light reading. Regardless, this particular story, by the best definition, this narration of a brief life, would define this 17 year old boy as the exemplar, the mainstay, the standard-bearer, the warrior…the protagonist, the hero.

     It’s not a story that anyone should have to live, but of course they do. When my sister talked about books for her children with characters they could relate to I know this isn’t what she meant but maybe it is a story that everyone else should know about. That boy wasn’t a noted athlete, a famous detective or a great romancer. He was a boy that life had dealt a really, really unfair hand to and he played it as best he could.

     That is not the story of a secondary character. That is not the life of a marginal individual. That grace and dignity in the face of the almost incomprehensible contemplation of ones own end is something we should venerate. In the end we are nothing more than ourselves. That can be base or in the case of this boy, a glorious shooting star, the light of which is brief and intense but more beautiful in its brave blaze.

 

First Love

I’m pretty sure that if I had known all that was going to be involved I would never have said yes…but, when my son’s aunt called up and offered to pay I said sure, okay. She said that she would take care of the registration fee if I would agree to cover the cost of equipment. I was between pay cheques so I trundled off to the pawnshop to hock some jewelry.  Actually when I returned to get it a week later the gentleman who owned the store didn’t even charge me a fee. I don’t know if he was a fan (as I had explained my need for quick cash) but given the circumstances it was a kindness that I certainly could appreciate. And just like that everything changed.

 I had grown up in a single parent household and there had never been money for any type of organized sports. My brother could skate but he’d never actually played hockey that I knew of. There was no hockey night in Canada in my house. When I finally married years later my husband would be shocked and somewhat appalled that I had never even heard of the Canada-Russia series. I had a vague idea of who Wayne Gretzsky and Bobby Orr were (another something scandalous to my Bruins fanatic husband) but I couldn’t have told you that they were Canadian. Don Cherry was an unknown to me as were the terms “original 6”, “puck bunnies” and “hat trick”. So even though I’d been born in the great white north, I was not born into the culture of hockey.

Before I got married to my hockey crazy husband I too was a single parent as my mother before me. I was, as I have already said, blissfully unaware of the gaping hole in my knowledge of the national pastime. My son had not even been on skates before his first hockey practice. He was enthusiastic and so was I as we headed off to the arena.  The place was teeming with what looked like hundreds of armored midgets. We found the change room and started to get ready. I wasn’t sure how everything went on but with a little help from one of the hockey dads we were set to go.

Thank God for all the padding, I think that my son spent more time lying on the ice than he did standing up. I was in the warm room watching the action on the ice through the large picture window when I heard two of the other mothers critiquing the 5 year olds who were on the ice.

 ” Look,” said the first one, “there are some kids who can’t even skate out there”.

The other mother, absolutely horrified, answered, ” You’ve got to be kidding”.

It was my child they were referring to of course. He couldn’t skate but he didn’t care, he was having a great time. This was my first taste of the elitism of the hockey rink.

This phenomenon, in case you don’t know, is a well known disease found around Canadian hockey rinks. The symptoms manifest themselves in an all consuming parental belief that it is only a matter of time until their little Johnny is noticed by a roaming scout and whisked off on a magical journey to the enchanted world of the NHL. I am fortunately immune to this particular disease. I actually have a malady that is characterized by the fervent hope that one’s child will someday become a successful dentist (yeah! free dental care). So ambition free I was able to enjoy my little tyke rolling around on the ice in his little red Timbits jersey. Lord knows I had no idea once again and after such an auspicious start that he would become a beautiful and graceful skater. Later we’d always tell him he should have gone into figure skating (that was before I learned how much that cost!). He’s been playing hockey for ten years now and he still doesn’t have much of a shot but that boy can skate.

 But back to that day in 1995, that day, my son discovered his first love. He discovered the joy of being one of a company of men, little 2 1/2 foot men but men nonetheless. He learned that it is fun to sweat, stink, and spit and to be a little bit, not a lot, “bad” (moms don’t seem to encourage that type of thing). It was never any problem to get him out of bed as early as 6 or even 5 am to go off to the rink. He loved it and still does. He’s played house league and competitive (travel) hockey and I’ll tell you that he liked the house league better. He’s had winning seasons full of trophies and medals and he’s had losing seasons where even I got tired of listening to myself say ” Did you try your best? Then that’s all that matters”.  Trust me when your team hasn’t won even one game in a season those words start to sound pretty empty. This past year was the first time he had the opportunity to skate around the ice carrying a championship banner. But even if his team hadn’t gone all the way he’d still have came back this year. It’s what he is and it’s what does. Football might distract him, he actually managed to get knocked unconscious last year and he loved that, or lacrosse or dirt biking but hockey remains his first love.

 September is here and I’m digging through the old equipment trying to figure out what I can make “last one more year”. No amount of washing can remove the underlying stench of the “thrill of victory and the agony of defeat” (or should I say the smell of de’ feet). My son likes that smell. Halfway through hockey season I don’t even want to sit in the car with his bag and he actually can’t wait to put the malodorous contents on. Next Sunday will be his first time on the ice this season. Actually I’m sort of looking forward to it.

Don’t get me wrong I don’t enjoy the early mornings, arena coffee, occasional crazy parent, long road trips or cold weather and even colder arenas. What I’ll be watching for is that first step out onto the ice when skates kiss the cold hardness and my son slips into the rough embrace of the game. I know he doesn’t see it as a discipline, or a philosophy or as anything grandiose for that matter. To him it is what it is and that’s just fine. There is something to be said for the joy to be found in watching someone do something that they love with their whole being. When it all comes together, as sweaty and stinky and bruising as it is, for him it is his poetry, his life, his first and perhaps forever love.

Raspberry Coulis

Raspberry coulis is a fancy name for sweetened raspberry puree. It’s quite simple to make. You need around 4 cups of fresh mashed raspberries, a teaspoon of lemon juice and enough granulated sugar to sweeten. Mix it all together and heat over a low flame until it’s thick and sweet. Use a sieve to strain out the bitter pulp and seeds then store in a mason jar. It will keep for up to 3 days in the fridge. It’s a perfect accompaniment for a variety of dishes, sweet and savoury. In my kitchen, on a humid Saturday night, it was to play duet with sweet (and sour) after a late dinner.

Praline and Cream ice cream wrapped in a soft tortilla smothered in a burnt pineapple sauce and topped with a button of white chocolate fudge lays in a dribbled circle of raspberry coulis. The heat of the day hanging in the air melts the flavours together. Plates empty on the counter beside the sieve that still holds the pulp and seeds. The prodigal son, without asking, spoons up a mouthful from the sieve. Bitter pulp and the grate of seeds twists his face. He leans over the sink to spit it out. Mouth gaping open dark red,  his expression of shock and surprise takes me back 13 years.

The same face, not all planes and angles but full and sweet. No mop of wild hair but dark blond baby curls, round belly full and peach kissed. He walks at 10 months, never wanting to sit still. The water in the tub is shallow. My hands are right there as I tell him to “sit down, sit down now” and he drops forward. Only two teeth in front but, sharp, they pierce through. The same gaping mouth spits out dark blood, the colour of raspberry coulis. The same expression of shock and surprise. He doesn’t cry though and to this day, he still doesn’t. He has never cried over a physical hurt but a harsh word can crush him.

A trip to the emergency room follows and the doctor says “Mom is in worse shape than baby”. No stitches, the tongue is a muscle and will heal on its own. It does after a fashion; the end just on the other side of the bite splits, leaving a  Y shaped scar. Not even 2 months later it will be joined by another scar set firmly in the middle of the tongue…footsies in jammies don’t always mix with hard wood floors.

Just for a moment the sweet round mixes with the angles and planes. The eyes change from hazel to a golden green but they are still the same eyes. My stomach clenches in a despair so deep, words fail me. This love is so hard. It was so unexpected and so all encompassing. Like a leaf in a river the current carries me whether I will it or not.

He spits out the seeds and pulp, rinsing his mouth out with water. The moment has passed and in a day or so, for him, it will be like it never happened. He doesn’t know yet, maybe he never will. I hope not, but I know. I know that you can’t have the sweetness of raspberry coulis without the bitter pulp and the grit of seeds.

Oh, that you are my heart…

Make a Wish and Blow Out the Candles

My birthday has never been a favourite day of mine. Maybe it stems from many years ago on the occasion of my 5th birthday which was celebrated with a broken arm. I had actually broken the arm several days before. My mother had found me crouched in the sun room on the porch of our old Victorian house hiding from the sun. I remember that I held my arm up to her and told her the sun was burning it. Three days later she took me to the hospital to find that it was indeed broken and a cast was duly applied. She still has a picture of me in front of a birthday cake, tiny and tow headed wearing pastel blue and pink beads with a cast starting just above the elbow and stretching down to cover most of my hand. Birthdays have just never been my thing.
This year my birthday was one of those “landmark” birthdays that sometimes cause people to look back upon their life and assess their progress as they see fit.  The past two years have been full of a great deal of change for me.
Big change number one – I married approximately two years ago. There’s a book that could be written about that. Family always puts such an “interesting” spin on those things.
Big change number two – A new plan for my employment situation was required a little more than a  year ago as I was on the receiving end of a hockey puck that gave me a cut that took 15 stitches to close and permanently altered my depth perception and ability to tell the difference between particular colours. The old job was a dead end but it was a hell of a nasty way out.
Big change number three – Nine months ago I moved from a good sized urban center to a very small community leaving behind all my friends and networking opportunities. So definitely there was a lot to look back on.
So lots of things to think about. As well for the first time that I’d really noticed my birthday coincided with Fathers Day. So that was more to reflect on.
I have no memory of ever having met my father. As a matter of fact, although my mother has been married several times I grew up having no idea what a father did or even that having one around might be an asset. When I was younger I never gave it much thought. I was a single parent at 25 and that did not strike me as odd. It was the type of family I had grown up in. I probably would have gone through life none the wiser but for one thing; I married a good father. I’m not saying that he’s Ward Cleaver, don’t get me wrong. He’s an actual human being with all the flaws and quirks that all of us have.
He hogs the television and falls asleep on the couch. I made him breakfast in bed on Fathers Day and when he spilled his orange juice he laid in bed and yelled for me to come up and clean it. He’s a smart ass with the kids. When they go out he eats their Christmas and Easter candy. He nags them to pick up their stuff and to take the dog out. I’ll ask him to do something and he’ll tell the kids they have to do it. He drives them crazy and he loves them. He calls his kids every day because they don’t live with us. He helps support his children financially. He is raising another man’s child as his own with all that entails. He gets along with his ex wife to the best of his ability. He tries to be a fair and decent human being and set a good example for his kids and my son who lives with us. He loves his children more than anything else. It shapes his days and his nights. It has determined the course of his life and there have been times when it has been very difficult. Even so, while he might change a few of the details he wouldn’t give up the whole of it for anything. That is how I know what a father is and what a father does.
We were watching something on television, some Kodak moment between television father and daughter. I said to my husband, ” I wonder, why my father didn’t love me?”. My husband told me that I couldn’t possibly know whether or not my father loved me and that I didn’t really know what had happened. I didn’t say anything. Kindness on his part had extended the benefit of a doubt to a man I have never met. That kindness came from a heart that would never choose to absence himself from his children’s lives and be anything less than a real father.
And this is the man I married, what does that say about me? I don’t know…something…nothing…everything?
So I was miserable on my birthday.
Maybe that is the way it’s supposed to be. I’ve never really been very good at this birthday thing.