Beside Me (by: Aimee Bruner)

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From the moment you could walk I spent most of my waking hours chasing you around.  Never for one minute did you sit in the same place for longer than a few seconds – it just wasn’t your thing.  I remember trying to hang on for dear life when you used to hug me, wishing the hug would last just a moment longer and just when I thought it might, you’d twist and wiggle right out of it, giggling all the way.  On Saturday mornings, when it was my turn to sleep in, I remember hearing the pitter patter of your little feet tearing around our house.  You were making waffles with mama.  I always knew that my sleep in was nearing an end when it got quiet all of a sudden as you plotted with mama to wake me up.  Once the bedroom door swung open – it was all over.  As you climbed up onto the bed, cackling with every move, it was hard for me to pretend to be asleep without smiling.  I remember the smell of maple syrup on your face like it was yesterday as you planted a sticky kiss on my cheek.  Again, no matter how hard I’d try to hug you or get you to sit on that bed with me, you always managed to escape.

There’s a photo of you and I posted on the bulletin board in my office.  We’re walking together in Mexico.  Just you and I, side by side.  You’re not holding my hand of course but when I look at it, I can feel you walking beside me.  Mama was walking behind us when she took that photo, so the image is of us walking away in the distance.  Sometimes when I look at that photo, I imagine that we’re there, on that trip, in that moment, frozen in time.  That photo is one of my most prized possessions.

I remember when you used to get a cold or fever, secretly loving the fact that you would want to cuddle into my lap.  It really was the only time in your life, that you would stay.  DIPG changed all of that.  As the tumour invaded your brainstem and stole your ability to walk, you finally wanted to be held.  You needed to be held and I needed to hold you.  There you were on the couch.  On my lap.  In my arms. Beside me.  For a year and a half, I got to hold you.  Your mama got to hold you. That is a gift that DIPG slammed on our doorstep as it tried to extinguish you.  A gift we would take even though it brought us both moments of joy that were often overshadowed by excruciating pain that debilitated our souls.  We held you in our arms as we were forced to do things that parents should never have to do to and for their child.  We held you in our arms when our bodies were broken and our hearts couldn’t see past tomorrow.  We held you.  I remember the feeling of holding you for hours on end.  My left arm would fall asleep and my shoulder (that will never be the same) would ache.  When I was sure that you were finally asleep, I would slip out from underneath you and sneak away for a long awaited washroom break and a glass of water.  I would always find myself back on that couch though, with you right beside me.

We worked so hard to sleep train you as a baby and as a toddler over and over again.  All that to one day buy a king sized bed just so that you could spend the rest of your time on earth sleeping right beside us.  The big girl bed.  That’s what we called it.  One of my biggest fears back then was that you would take your last breath in the night without us knowing and that we would wake up to find you gone.  I spent most of the the night clutching your tiny bicep while keeping one finger on your chest so that I could feel your heartbeat and your chest rise and fall beside me.  Now I sleep with my outstretched arm across your empty spot in the middle.

You see Stella, I never imagined that there would come a time when you weren’t right beside me.  Now, memories of you lie neatly packed into a box beside my bed.  Shortly after you died, I found myself very possessive over certain things that were yours.  I started to collect them and put them in the box so that I always knew where they were – right beside me.  The box is bursting at the seams now as your brightly coloured hair bands push open the lid.  Your mini book about shapes is in there too along with small pieces of your t-shirts, the green wrist band you loved to wear, the chicken that you used to torture me with that cock-a-doodle-doos and pieces of your perfect curls – each one carefully tied up with a white ribbon.  You were unconscious when your mama and I washed your hair for the last time.  We brought a tub of warm water onto the bed and carefully washed your beautiful curls as you lay on our arms.  It was torture but we had to do it.  We knew that this would be the last time we washed our baby girl’s hair and we knew that we needed to keep some of your curls here with us.  So we lay there that day and watched your hair dry for hours.  We found each curl that we couldn’t be without and carefully cut it.  I was determined to make sure that no one could tell that your hair had been cut because I wanted you to look as you always did.

The fact that my first born has been reduced to a box of curls beside my bed devastates me in an unimaginable way that no one, who hasn’t experienced it themselves, can understand but I am so glad to have those curls.  I open that box every night before I go to sleep and every time I peek at your shiny red curls, I smile as I remember just how perfectly orange they were and how they managed to catch the light in just the right places.  Although my weighted heart aches as I feel your absence with my every being, when I close the lid and roll over to turn out the light, I close my eyes knowing that the pieces of you are right beside me.  Where they belong.

Sam and Hugo wearing their new matching “Gwinches” shirts:



Winter is finally coming to an end…Sam and I celebrated by heading to the park!


Hugo’s new haircut.  Ready to join the military!


Mama and Sam:


I remember every single pore of Stella’s beautiful face:


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The Club

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Both before and after Stella died, I found myself drawn to reading books by other parents who had lost their children.  I started with one I found in the local library called The Grief Knot written by a woman whose 4-year old daughter Gracie died suddenly from sepsis. Then I moved on to Working It Out, the story of Abby Rike who was a contestant on The Biggest Loser after she gained weight in her grief of losing her husband, 4-year old daughter and 2-week old son in a car crash.  I read Notes Left Behind which is the book version of a DIPG family’s blog and You Can’t Let Cancer Ruin Your Day which is book of a father’s emails to family and friends as his son went through a fatal bout of neuroblastoma.  I also read “Ill See You Again” by Jackie Hance, whose three daughters were killed in a car accident in a van driven by her sister-in-law


Why am I drawn to these books?  Why do I read them?  One would think it is because I feel a kinship to the other parents who have lost their children, but actually that’s not it.  I’ve been playing the “at least that didn’t happen to us…” game.  Actively searching out stories of families whom I think had it “worse” than us.  ‘Wow,’ I remember thinking, ‘at least I didn’t lose my whole family…’ or ‘Well, a least Stella didn’t suffer at all in death the way this child did’.


But the thing is, it doesn’t really bring me any true comfort.  I’ve learned that grief isn’t something that’s comparable.  It doesn’t make sense to play the “who has it worse” game because heartache is heartache, heartbreak is heartbreak, grief is grief and pain is pain.  There is no worldwide marker that standardizes it for anyone.  The only thing you can measure your own life against is yourself and your own ability to live.


Recently my brain has started a file of famous people who lost children and not just survived, but flourished.  When I hear of someone, or remember, I file it away under “They Survived” in my brain.


Abraham Lincoln…Pierre Trudeau…Johnny Carson…Dean Martin…Eric Clapton…Frankie Valli…Doris Day…Bill Cosby…John F. Kennedy…George Bush


There’s so many more.  When I see a celebrity, like John Travolta for example, walking the red carpet and smiling and doing whatever it is that celebrities do, I wonder if he wakes up at night with his cheeks wet from tears from dreams he can’t quite remember.  I wonder if the hole in his heart is just as raw and jagged as mine and he is just going through the motions of smiling and signing autographs because that’s what you have to do.  I wonder if his family still talks about Jett and lights a candle for him the way we do.  I try to picture him and his wife having to make decisions about what to do with his clothes and what they tell his sister when she calls for him.  It’s not that I feel particularly close to John Travolta or something, it’s just so strange to think that he must be just as broken as I am, yet he appears “normal” in the media.


There’s something strangely comforting about knowing that even when you are loneliest in your grief, you’re not really alone.  I am also email friends with a couple of other moms who have lost their children, and have felt close to our neighbor Johnny’s family since we lost children 11 days apart last year.  It really is a club.  A club you don’t want to be part of, but a club nonetheless.  And like all memberships in clubs there are rules and expectations and a common thread.  But there is no obvious signs.  No little fez hats to wear, no matching T-shirts that say, “My child died”, no handshakes or secret passwords.


The membership cards for this club are found in a grief so deep and raw it takes your breath away. We are the walking wounded and a lot of the time we are in the same spaces and have no idea because the world demands that we move only forward and for some reason this definition of “forward” means leaving pieces of the child you lost in the past.  But I’m not willing to do that.  I am a reluctant member of this club, but I will not be a silent one.  Even though it generally makes new people I meet uncomfortable, I seem to always be talking about Stella.  I say things like, “Before my daughter died…” and wear my green “F—k You Cancer- Stella” bracelet every single day because when people ask me about it, I am hppy to tell them all about my little girl.  My standard answer to the dreaded, “How many children do you have?” question has become: “I have three.  Two sons, who are one and two and a daughter who would be four, but she died of cancer last year”.  In school when people ask me the casual, “Hey how are you?” question, I answer it honestly.  Sometimes I say “fine” and sometimes I say “okay but…” and elaborate and sometimes I say, “I’m having a really shitty day’.  I figure anyone who doesn’t really want to know will eventually stop asking the question.  I’m glad for “The Club” because it gives me strength and hope and a light at the end of the tunnel.  But the membership dues to be in it are way, way too high.


Our walls at home are still covered in photos of Stella.  There are some of the boys as well, but it’s mostly Stella, Stella everywhere.  And even though I’m sure it’s unhealthy and I’m just setting myself up for heartache one day, I monitor other people and their Stella photo placements.  For example, when we go over to our friends house for dinner, I check to see that all the pictures displayed of her are still there.  It’s just some kind of reassurance I get that she isn’t forgotten.  I know she is still a huge pat of my life.  When I think of Stella, she is still sharp and clear in my brain.  My favourite thing now is when someone tells me a “Stella story” that I didn’t know about.  For that brief moment when I am hearing something new, or looking at a photo I’ve never seen, she is alive again.  Because that’s one of the side-effects of your child dying; you have a finite amount of stories and photos and memories of them.  So a new memory someone has that they share with you is something so incredibly beautiful and sweet.  I savour those stories and let them roll around in my head and heart for weeks afterwards, committing them to memory as if I had been there for it myself.  That’s one of the reasons that I still go and read Catherine Porter’s eBook about Stella over and over again:

because she talks about things that I don’t remember.  Days that slipped through my fingers were caught in the palm of her hands and committed to history via an electronic book that floats around cyberspace and can be purchased for $2.99.  What an odd thing to know that my daughters story costs $2.99 to read online.  Not that it’s too little or too much, just the whole idea of putting monetary value on the life and death of my sweet girl with curls is still so bizarre to me.


I am still not sure what I am searching for after all these months in reading the books and looking for photos in other peoples houses and listening for new stories about Stella.  I guess I’m just trying to hang on and to make sense and meaning of something as senseless and meaningless as her death.

Or maybe, I just miss her so much I can’t take a breath without wishing she was here playing with her brothers and friends, making me laugh and cry at the same time and teaching me more about love and life than I thought possible.

I think that must be it.  Searching for something that can’t be found, grasping at something intangible.  Thank goodness that when my arms feel empty I can fill them with the giggling, wriggling bodies of two active boys that dull the pain to a steady ache and make me smile even on the saddest of days.

Stella and Sam making cookies, June 2012:


All of Stella’s cousins and siblings play together at BlueBird cottage (Gracie, Sam, Xavier and Hugo):

IMG_0260DeeDee and Uncle Tristan help teach Sam to roast marshmallows:


Get rid of Hugo’s straight, blonde hair and replace it with strawberry blonde curls and you would have Stella smiling at you!


Sam and Xavier set up a bus and sing “Wheels on the Bus”



I love this photo because it really shows the personalities of our boys.  Sam is sitting, studiously reading a book and Hugo is in the background rolling around like a goofball:






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This journey with Stella has been so much longer and more complicated than Aimee and I could ever have imagined almost a year ago.  I remember a few days after she was diagnosed, I finally got up the courage to look up “DIPG” on the computer.  I was horrified at what I found, reading the descriptions of the way that the tumour would take away my child’s motor skills one by one but leave her cognition, brain and knowledge of what was happening to her completely untouched.  I wanted to throw up.  I turned off the computer and began walking.  I had no destination, no idea where I was going, I just wanted to escape this horrific reality that Aimee and I were being faced with.  I called Aimee’s sister Andrea and told her that I didn’t think I could do this— didn’t think I could watch my child die in this horrific way.  I was walking towards the Bloor Bridge.  I didn’t want to jump— I just wanted to imagine that I was going to…imagine that I had a way to make the pain in my heart stop because it hurt too much to live.  I think I freaked Andrea up thought, because soon, our friends An and Em picked me up and brought me back home.  They sat with me on the swing in my Dad’s backyard and I told them that I wasn’t strong enough to spend the next 9 months watching my child slowly die.  (9 months is what they say the average child with DIPG will live for— if they receive treatment).  I remember An (a nurse and thanatology specialist), assuring me that Stella would not live that long.  Without treatment, it would be 3 or 4 months maximum.  6 would be a mini-miracle.  I remember feeling relief that it would all be over soon— before Christmas for sure.  I kept clinging to the pattern that the Doctors had told us she would follow.  It was difficult, but it would be mercifully fast and she wouldn’t even really understand what was happening to her because she was only 26 months old.  I would be back at work in January and by Stella’s birthday, maybe it wouldn’t hurt to open my eyes in the morning anymore.


Now here we are, 11 months later and Stella, without treatment, is still here.  She has shocked not only us, but the Doctors and other professionals as well.  They have no answers as to why she is still alive, why the tumour has been growing so slowly, how much longer she has.  She has seen so many things she was never supposed to see: Sam being born, Hallowe’en, Christmas, Easter, her third birthday.  And while we are grateful to have had so many months with her -months which she has taught us so much, and graced us with her love and laughter, I also feel completely lost.


When someone doesn’t follow the prescribed route, when you have no idea what direction you’re headed, how you will arrive there, how long it will take and what the conditions will be like… it’s absolutely terrifying.


There is a reason that we have called Stella’s cancer “A Journey” instead of a trip or some other term.  A journey is generally one long and connected piece of travel, especially pertaining to a destination that takes a long time to get to.  A journey insinuates that there is no prescribed route, no direct way, no map.  Sometimes a journey doesn’t even have a definite destination.


But I feel disoriented without a map.  At my core, I am a student.  I’ve always loved being given a problem, or analytical issue, or literary question and I research it to death until I’ve formulated an opinion about it, and I feel like I “know” the answer.  But with Stella, no one knows any of the answers to my questions.  Not even some of the leading DIPG experts in the world.  And while at times, this has been a very good thing—because we have gotten some unexpected beauty, stunning perspective and surprise moments because of it—as the journey wears on, I find myself getting more and more frustrated, feeling more and more lost and searching vainly for a map to give me some idea of where we are headed with this horrible disease.


Last weekend Stella was running a fever and slept for almost three days straight with very little interaction or signs that she was aware of what was going on around her.  Funnily enough, I wasn’t scared by this or worried or frightened.  It was familiar to me— we’ve been here before, probably half a dozen times.  The first several times, Aimee and I completely panicked and spent the days and nights crying thinking this was “it”, but this time we just waited patiently for her to come out of it.  The only sign I give that I may thinking the worst is that I become obsessed with going online and looking at other blogs that have been kept by DIPG parents.  I find myself reading and re-reading the blogs of beautiful children that were taken by this horrible disease, and try to find what “the sign” was that led the parents to finally understand death was at hand.  Joseph…Emma…Elena…Oliver…Rex…Max…Johnny…countless others. I read them all, and yet I haven’t found any signs that were common to all of the children who died of DIPG.  Everyone died after a different amount of time (2 months to 2 years), the tumour did different things to their body, their deaths were completely different.  Some children were alert  24 hours earlier shopping and swimming, some fell into a coma and hung on for days afterwards, some passed away peacefully, others suffered difficulty breathing and swallowing and their death was merciful for those that couldn’t watch them suffer any longer.


I try sometimes to make sense of where we’re headed, but it is hard to find sense in something that feels so utterly senseless.


I know that this journey will eventually end in the death of my beloved daughter.

I know this journey will end in my heart breaking and bleeding.

I know this journey will end with tears, screams and pain.


I want so desperately to get off this path that I’m on, but I have nowhere else to go.  The map I am so desperately searching for doesn’t exist and so Aimee and I flounder in the dark, coming across what seems like insurmountable obstacles, trying our best to navigate unknown elements and emotions, all the while knowing we are headed towards despair and agony.  It’s so hard.  And in the meantime, our incredible son Sam is getting older and we are needing to learn how to parent him as a 7-month old.  We watch him do things that Stella can’t do anymore— reach for what he wants, put something in his mouth, sit up unassisted, smile and laugh on cue, hug us, eat solid food.  We are on diverging paths.  One is headed to a future without Stella, a future with two sons instead.  The other is headed towards Stella’s decline and death.  We are now 9 weeks away from having our third child.  7 months ago there was no way we thought Stella would still be alive at this point.  And we still don’t really know if she will get to meet her next brother or not.  It is all a big unknown to us, hard to plan for anything, hard to predict anything, hard to picture what next week let alone what next month will look like.


Where is that damn map!??


i find myself looking for familiar things—touchstones to help me gain my footing in the absence of a map.  The 7-day a week morning breakfast routine with my family.  The medication alarm that goes off at 8am, 8pm, 12am and 3am.  Therapy on Tuesday’s.  Sleepover with Gracie on Saturday’s.  As the weeks pass, I cling to each of these things as though they were the buoy’s that will keep me from drowning.  The days are so unpredictable otherwise.  Will Stella have a good or bad day?  Will Stella be sick today?  Will Stella want to leave the house today?  Will Stella eat today?  Will Stella have a seizure or fever today?  Will Stella die today?


I think often of sitting on that swing with An 11 months ago, and telling her there was no way I could survive watching Stella waste away.  But we have.  Aimee and I and our friends and family have watched her lose her ability to walk first, then stand, then sit, then hold her head up.  We watched her lose her ability to use her arms, to feed herself, to eat solid food.  We watched her eyesight worsen, her headaches worsen, her ability to speak and communicate with us disappear.  We watch her drool and struggle to swallow.  We watch her sit quietly, her head drooping, her hands hanging uselessly like little claws at her side, her voice silenced, as other children her age run and shout circles around her.  And yet-unexpectedly- we also watch her laugh and smile and welcome new adventures.  We watch her live as much as we watch her die.  It’s both maddening and miraculous.


Without this illusive map to guide us on our journey, Aimee and I have no choice but to walk blindly through each day with the help of our family and friends and supporters.


And, once in awhile, we manage to find our way.


Last night we had Stella’s friend Arin and his family over to celebrate Victoria Day with us.  Stella was quiet for most of the evening, she has been more tired and lethargic recently, not wanting to leave the safety of the house and the couch at all.  But just as the sun was starting to fade, we lit some fireworks for Arin and Stella.  As they rained down multi-coloured sparks around our backyard, Stella and Arin sat side by side and laughed.  The louder, bigger, flashier the fireworks, the more Stella smiled.  At one point something called “The Big Bang” was lit by Daniel and it was exactly what it sounds like…a firework that lets off a massive “bang!” and one single shot of fire shoots up into the air.  It caught us all by surprise.  The adults gasped and jumped, the babies burst into tears, Arin backed away scared.  And Stella?  She laughed and laughed and laughed in delight at the noise and shock of it all.  This is when I don’t feel lost anymore.  When Stella reminds us that locked inside a body that has failed her in every way possible, her spirit is still there, as fearless and strong as ever.


The name Stella means “Star”.  Stars add light to the darkness, and you can follow them when you have nowhere else to go.  But I still wish I had a map.  Or at least a compass to point me in some kind of direction.  But all I have is my special star, so when I feel lost on this road to Hell, when it is dark and I am scared I can’t find my way, I need to remember to look to my star for help.  She is the only thing we have to follow right now.


I love the light for it shows me the way, yet I endure the darkness because it shows me the stars.  -Og Mandino

Aimee and her daughter:

Gracie pulling Stella around the backyard:

Stella and Sam in the backyard:

Stella and Daniel enjoying fireworks:

Victoria Day BBQ!

Stella watching the fireworks in our backyard:

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Never before has time been such an abstract thing to me.  In my previous life (aka “pre Stella’s diagnosis”), I not only knew the date, day of the week and time, but I could rhyme off my rather complicated and ever-changing schedule quite easily.  However, since Stella’s cancer diagnosis, time has not been measured in anything that makes sense to me and I have trouble knowing the time of day it is, the day of the week—even the month sometimes.


The world outside our house seems like a foreign place now, the life we once led a distant memory that could very well have been anyone’s life.  Now time is measured in alarms going off to remind us to take an array of medications.  The island in our kitchen is littered with pill bottles for various ailments for all the people who live here.  A veritable alphabet of narcotics from A to Z (Ativan to Zoloft) and everything in between…..morphine…ondanzetron…advil…cipralex…ativan…valium…perkoset…gravol.  


Without the comfort and organization that the knowledge of time and space used to give me, I feel like I’m free-falling through life.  The lighting, temperature and feeling in our house in exactly the same night and day, season after season.  I do remember certain dates… June 14th (diagnosis day), October 20th (Sam’s birthday), December 25th (Christmas).  That’s about it.  


For the last couple of weeks, there was a change in our lives that was more than the simple addition of Sam.  We also, inexplicably, got a little bit of our Stella back too.  The first two weeks after Sam was born, Stella made a mini rally back to health that seemed almost miraculous.  Her energy improved, her mood improved and she seemed to come alive again.  We went for walks that were requested by her, we dusted off the tea party set and hosted some really wild parties, we gave Sam baths and helped change his diaper.  We started reading books again.  Stella told knock knock jokes (not good ones, but really…are there any good ones???).  She even agreed to go trick-or-treating.  She lasted about 15 minutes before falling asleep in my arms, her drool running down my shoulder.  Aimee and I took it all in, breathing deep breaths of red curls, brilliant smiles, cool wind on our skin, soft hugs and kisses.  I didn’t update the blog for over a week because I was much too busy living my life to even write about it.  For the first time in a long time, I was able to just feel happy and grateful and as though there was a small window in the days that let the sunshine through the cracks again. 


Then, yesterday, the colour went out of her cheeks again and the brightness faded from her eyes.  She spent almost the entire day sleeping, sweaty and colourless on the couch without any interest in food, or television, or kisses.  Aimee and I hope that it’s just the change in her medication (we upped her morphine intake on Tuesday), but it’s such an emotional roller coaster and I feel like I’m literally holding my breath as we all wait to see if this is just a small dip, or if this is “it”.  On days like yesterday, the clock is completely meaningless, the day of the week, temperature outside, month, completely irrelevant to our reality.  Time has become an ally and an enemy all at once.  I’ve ripped down the calendars that used to carefully map out our plans for the week.  Plans full of school assignments, work, dinners, playdates, toddler classes in swimming, singing, soccer.  I haven’t bothered changing the clocks in our house from the timechange.  Who cares, what difference does it make?  Time only takes me further away from Stella and closer to the time when we will need to live without her forever.  


The days are marked in the number of Dora episodes we can watch at a time, and we sit in the living room hour after hour on the couch while the world spins around us.  I have realized that grieving can be a very selfish and self-centered thing.  I don’t have the energy anymore to work at my personal relationships, hygiene, hobbies, interests, future.  I live in a bubble where the only realities are a three-week old baby and a two and a half year old girl who are living parallel lives going in completely different directions.  For every gain that Sam makes, Stella seems to move backwards a little bit.  Sam can hold his head up pretty well now, Stella has lost the ability to sit up unassisted.  Sam is awake more, Stella is asleep more.  Sam will soon start to babble, Stella has almost lost her ability to speak entirely.  Sam’s future seems endless and bright, Stella’s seems short and mysterious.  It’s an uncomfortable mix of pleasure and excitement at our new son and fear and sadness for our firstborn.  Our attention is split and I can’t seem to find a balance between the two lives Aimee and I are responsible for.  But each day, even on days like yesterday when Stella lacks the strength to chew food, she holds her arms out to her brother and holds him close.  The scent of life and death intermingles between them.  It still shocks me that this is my life, this is my reality.  This time is NOW, and someday it will be THEN as in, “before Stella died”.  


It’s strange to sit at the window and watch the world from inside.  We hear garbage trucks roar by, see the sun rise and set, watch streetlights come on. Time passes, unnoticed.  Time doesn’t exist anymore as a way to breakdown the moments of my life.  The only times that mean anything are the tiny instances when the four of us—me, Aimee, Stella & Sam, sit together on the couch in a huge mass of arms, legs, blankets, warmth and love.  That is when I take deep breaths of life and wish with all my heart I could truly stop the clock forever.


HALLOWE’EN WITH POPPA (no—this is not our house!)



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It’s the first day of school today.  Our little house is on a street that has two schools at either end of it.  Today Stella and I watched the kids trot off in both directions, parents and backpacks in tow.  I pointed out the yellow school buses to her and she pointed out the TTC buses to me.  I held her closely in my lap as we sat on the cool cement of the front porch, watching the kids and listening to them chatter to one another, excitement and anticipation on their faces.


I have been picturing Stella’s first day of kindergarden since she was six months old.  I wanted to send her with a lunchbox, even though I’m not sure if kids use them anymore.  I was going to take a picture of her standing on our front porch with her mop-top of curls blowing in the September wind, a huge smile on her face, clutching her backpack with her face raised slightly to the sky, triumphantly ready to start the first day.   Then we would walk over to Flora’s house and pick her up for kindergarten too, since they were going to be in the same class.  Karen, Jeremy, Aimee and I would take pictures of both the girls as they held hands and walked into the big, heavy doors of RH McGregor together.  We would stand outside chatting for awhile after the bell rang, about how quickly the time passes, and how grown up our girls are.  Maybe wipe away a few “they’re growing so fast” tears away.  Then I would text Omo and Jean to see how Arin’s first day was, and Jules to check on Ava and then An and Em to remind them that in only a year it would be Tobin’s turn too. But that vision is just a dream now, much like the ones I used to have of Stella before she was born, when it was all just hypothetical and abstract.  Now it all seems to silly, so innocent and entitled.  It makes me so mad.  So sad and so mad.  But mostly mad.


This morning as I sat on the stoop with the cool wind blowing against my neck, giving me goosebumps, I reflected about how Fall has always been my absolute favourite season.  Even as I child I thought the change from green grass and trees to vibrant golds, reds and oranges was the most spectacular thing in the world.  When my sister Heather and I were kids and our parents took us to the cottage on fall weekends, we used to compete to see who could find the “most beautiful” leaf.  Walking along the dirt path by our cottage in our itchy wool sweaters, smelling the fresh coolness of fall, we would scour the ground and low branches for our leafs, placing them carefully in plastic Loblaws bags provided to us by our mom.  “Most beautiful leaf” generally had to be large, with crisp edges and several colours in it.  It was usually unique looking, not a typical maple leaf, but the leaf off a tree we couldn’t identify or hadn’t seen before.  Often the green of the stem would melt into a soft yellow that would then burst into fiery orange at the tip; as an adult when I saw my first Monet painting, I was reminded of the leaves and the way the colours melted together.  I could stare at the veins of leaves for hours and think about how individual each leaf was and how special, because each of those leaves had only one season, and then they would be gone forever.  The intricacy of those leaves has always been a source of fascination to me.  I sometimes followed the veins of the leaves with my fingertips, tracing how the water would have fed that leaf and made it grow.  Sometimes I trace the veins in Stella’s wrists in much the same way.  Her skin is like mine, so pale it’s almost translucent, and so it’s easy to follow veins from fingertips to armpits.  I see the blood coursing through her veins and can follow it almost right to her heart.


Even though it’s not officially “Fall”, today, first day of school always feels like Fall to me.  This will be Stella’s third Fall, but it is different than the rest.  Different because, (according to the Doctors), Stella is supposed to die this Fall.  Stella is supposed to change like the leaves, growing physically weaker even as her colourful personality grows more complex and vibrant.  Stella is supposed to have a rapid and peaceful end of season.  Stella is supposed to gracefully fall from the tree of life and float away in the wind, never to be seen or heard again on this earth.


You know, sometimes Heather and I would try to preserve the “most beautiful” leaves we found by putting them under our mattresses for a few days and then getting my mom to help us iron them between sheets of wax paper, creating “art” out of the leaves.  But drying them out always made the colours fade a little, and we could never quite seal the wax perfectly, so inevitably the leaves would eventually dry up and crumple into tiny crumbs that would get all over the cottage floor and be swept outside by our feet running in and out, slamming the wooden door behind us as we ran down the path in search or more “perfect” leaves.


I wonder if the photographs, the stories and the memories of Stella will remain as vibrant as she is in real life, or if they will slowly fade and crumble like those leaves.  I wonder if it’s possible to capture her vibrancy, energy and love of life in a way that is true to who she really is.  I wonder if we’re doing enough to ensure she is not forgotten and that she has every chance to make her mark on the world, even though her life will be cut short.  I wonder if this fall will result in my falling…falling helplessly out of the sky, no safety net, no vision, no way to stop the darkness from coming as I hurtle towards the ground.


Then I remember that this fall we are going to welcome a little baby boy into our family.  A boy who is genetically half the same as Stella.  A boy who needs us, who deserves our love and who will also fill our lives with colour and light.I remember that after the beauty of fall, after the cold harshness of winter with its icy winds and unforgiving dark days and nights, comes the spring.  In the spring the days slowly get lighter and brighter.  In the Spring, the flowers and the leaves come again.  They are different, but they are there.  In the Spring the world turns 100 shades of green.  In the Spring, neighbourhoods come alive again, children play outside, dogs bark and the smell of BBQ’s waft across the street.  Stella was born in the heart of spring, on April 18th.  There is a Tulip tree that was recently planted outside the gates of her beloved Riverdale Farm that is supposed to bloom every Spring, right around her birthday.  Bloom with the promise of colour and life and vibrancy.  Bloom with the light of the sun, and surrounded by the voices of children who run in the park and exclaim over the cows, just as she has done.

Bloom with the whisper to the world that Stella will never be forgotten and will continue to bring beauty to this world, long after the Fall has come and gone.

Stella painting:


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