The future is in the past

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A few weeks ago on one of my (extremely rare) Saturday’s off, I wanted to take the boys to Kimbourne drop-in centre.  This is a place that Stella spent a lot of time at when she was young, and a place that both Hugo and Sam went to with cousin Xavier almost every single Saturday for almost two years.  My sister Heather and I had a routine.  She would come over on Saturday mornings at around 9 with Xavier and the boys would play while one of us went to Tim Horton’s for tea.  We would leave just after 10am and play at Kimbourne until about 12.  Then we would come home, give the kids lunch and it would be nap time.  We did this every weekend almost without fail.  Then we got a cottage and I got an internship that has me working 4 out of every 6 weekends, and suddenly we hadn’t been there in over 7 months.  When I called Heather to tell her we were going to Kimbourne she paused for a moment on the phone then said, “Actually, Daniel [Xavier’s dad] takes Xavier on Saturday’s now.  They go to Scarborough Town Centre Mall then to his dad’s and then his mom’s so I can clean the house and do my homework”.  Daniel used to work every weekend, but several months ago he got a Mon-Fri job, and I hadn’t realized since I was working/cottaging so much that they had slipped into a new routine.  “Oh,” I said, “Okay, no problem”.  When I hung up the phone, I felt like bursting into tears.  Change has never been harder for me than since Stella died.  Although I continue to move and grow, I somehow forget that the rest of the world is doing the same thing. Changing. Moving.

Luckily, Aimee agreed to come to Kimbourne with me, so I still got to go.  As I walked through the doors and smelt the familiar smells, I heard the unmistakeable shriek of laughter that always hits me when I first walk in.  I smiled at the familiarity of it all.  But once I got the kids out of their jackets and watched them take off towards the toys, I realized something was different.

I didn’t recognize anyone.

For so long I had been going there on a regular basis and knew all the parents, all the children and all the teachers.  But now there was nothing but new faces filling the nooks and crannies.  And suddenly, my kids were “big”.  Kimbourne is popular with the baby/toddler set and my 2 and 3 year olds were now amongst the biggest, fastest, strongest there.  It felt strange.  I also found out that one of the teachers that had worked there for close to 2 decades had died recently.  “Stella’s Snuggling Corner” that opened at Kimbourne back in 2012 is still there, but her photo is gone as is the little plaque explaining who she was. These people didn’t kmow Stella. They didn’t know me. I felt awkward.  The kids had a great time, but I kept looking around trying to figure out who all these people were.  I finally did see a mom I knew and she was balancing a new baby on her hip.  I didn’t even know she was pregnant last time I was there.

I left feeling a bit sad.  Although I knew that stepping into a new career of Funeral Directing would be challenging for my family and I, I underestimated how difficult it would be to lose so much of the life I was familiar with.  I rarely get to see the group of moms and kids that were so close to me when Stella was alive.  I work evenings, I work weekends. I work when they are all socializing and hosting birthday parties and taking the kids to swimming lessons.  Stella’s friends have formed new friendships, the parents have paired off into different cliques and groups.  I find that it feels like I’m swimming against the current.  Needing to move forward, but wanting to allow myself to be pulled back as well because it’s just so damn exhausting to just leave it all behind and forge forward.

I plugged in an old external drive that housed photos and videos from Stella’s days pre-DIPG diagnosis.  I got sucked in to watching video after video of her and it truly felt like I was watching somebody else’s life, somebody else’s child.  There was Stella carving a pumpkin with a younger looking, thinner version of myself.  My brother was there in the video too, shorter with a slightly higher voice.  I heard her voice and saw her facial expressions and felt somehow disconnected from it all.

I don’t remember that life, that world.

Maybe that’s part of grief, to block it out because it hurts to much to realize all that has been lost.  Here I am forging forward with life and getting caught up in my new career, my sons, cooking, cleaning, laundry.  I don’t remember that life and that world on a daily basis.  I watched video after video and tried to understand what happened to that world I was watching.  What happened to the bright-eyed, chatty, beautiful little girl that in one of the videos walks up to her Uncle Tristan and out of nowhere nails him on the head with a huge metal spoon, then smiles and walks away nonchalantly.

The truth is, I was always so afraid that I would forget Stella, but that hasn’t happened.  I have, however, started to forget the person I was when she was alive.  I have forgotten the way the house looked when it wasn’t covered in the boys dinosaurs and train sets.  When I zipped up dresses instead of fly’s. When mornings started at 5am and I struggled to explain to my daughter why Tutus weren’t considered winter outer wear.

On November 13th, I went to a very special event at Women’s College Hospital in Toronto.  it was the opening of “Stella’s Playroom”.  This room is a free, supervised playroom for children to be in while their families are in healthcare appointments at the hospital.  Aimee and I know firsthand from having to drag Sam and/or Hugo to psychiatrist appointments there when they were babies how disruptive and difficult it can be to balance caring for your child while you are trying to deal with your own health concerns.  You can read more about it at:

http://www.womenscollegehospital.ca/programs-and-services/mental-health/Stellas-Playroom

Anyhow, there was a big ribbon-cutting event at the hospital.  Aimee had taken care of inviting all the people there as I was drowning in work and life.  As the people started to arrive and fill the room, I got a crazy sense of being catapulted back in time.  There, standing in one room, were the people who had been there through Stella’s illness and death.  Her friends, their parents, Cath Porter the Toronto Star reporter who followed us for a year to write newspaper articles about Stella, the psychiatrist that we saw every single week for over three years, our family, friends, neighbours.

Aimee and I stood in front of these people and cried and spoke about our little girl.  They were there.  And so was I.

Afterwards, Sam said to me from the backseat of the car, “I didn’t see Stella at the party”.  I felt my heart smash into a thousand pieces as I realized that he was probably excited to go to “the party for Stella” (as we kept calling it), because he assumed she would be there.  That girl from the photos whose toys he plays with, whose mommies he shares, who he looks for but can never quite see. “Stella wasn’t there because she died,” explained Aimee without missing a beat, “Remember?  Her body didn’t work anymore”.  Sam nodded, content with that explanation, but I still felt sad.  How badly I wished that Stella was able to  be at that party.  But maybe she was, in a way.

It’s different now.  I don’t get to see those people very often anymore, or experience things the same way.  But that old world, it’s still there.  It’s in the personal memories of all the people whose lives Stella touched, no matter how fleeting or small.  It’s in the ways she changed Aimee and I from the inside out.  It’s in those videos, those spaces she once skipped through.

It’s on the carpet of Great Wolf Lodge that she threw up on when she was 11-months old in the front lobby.  When we were there with the boys last month, I purposely sat right on the spot I remembered she had been sick.

It’s in the silly singing snowman she used to crawl towards and laugh at when she was 8-months old for her first Christmas that I just unpacked for the boys from the attic and introduced them to last night.

It’s in her Olivia blanket that Sam had claimed for his own, and her purple teddy bear that Hugo cuddles up to at night.

It’s in me.  She grew in me, she died in my arms, she has seeped into my pores and affected every inch of me.

I think whenever I really want to find Stella, all I have to do is look in the mirror.

 

P.S.  Catherine Porter did a follow-up article on Stella’s Family for the Toronto Star in honour of Stella’s death-anniversary last month.  If you didn’t get a chance to read it, check it out!!!

http://www.thestar.com/news/insight/2014/10/26/three_years_after_her_death_child_stricken_with_brain_cancer_still_inspires.html

 Gracie and Sam at Great Wolf Lodge, October 2014:

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Hugo and Sam helping to close the cottage, October 2014:

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Ready for daycare! (Nov. 2014):

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Stella in Auntie Heather’s arms, June 2012:

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Fall Changes

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Fall is always considered a season of change.  For Aimee and I, it is the season in which we lost our precious girl.  A season of bittersweet memories marked by last kisses, warm rain and crisp evenings.  As soon as the leaves start to change, Aimee and I can feel our hearts tightening as we enter into the season of Stella’s death.
 
I took Sam to our local playground, Aldwych Park a few weeks ago.  Stella used to call it “Sandwich Park” and tantrumed mightily each time it was time to go home.  Once I made the mistake of taking her in the wagon and when it was time to leave, I couldn’t make her sit so I had to call Aimee to come get us in the car.  She was a wild one.  When Sam and I arrived at Aldwych, I noticed that one of the old slides with a steering wheel that Stella liked to play on was gone.  It had been replaced with a new climbing structure shaped like a firetruck.  Sam happily climbed up and began to play, but I was struck with how sad I felt that the old slide was gone.  It is yet another thing that has changed since Stella walked on this Earth.  The more time passes since her death, the more disconnected I feel to the things we used to do, the way we used to be.  Now when I walk into Aldwych “Sandwich” Park, I will no longer have that faded pink plastic slide— a concrete object to tie my memories of Stella to. That’s hard. Sometimes Aimee and I put an old t-shirt or pair of pyjamas that used to belong to Stella on the boys.  But they have outgrown almost all of her clothes, and soon we won’t be able to do that anymore.  Stella’s room has now become “Hugo’s room”.  Even Aimee and I call it that, without even thinking.  Though her essence is still there, the room itself has been overtaken by books about construction vehicles, Toy Story dolls and baseball caps.  At a BBQ heralding the beginning of the school year, her friends were called together for a “Senior Kindergarten” picture.  Seeing them all there, smiling at the camera made my heart ache.  They are so grown-up now.  So different from the way they were when Stella was part of the group.  My job with its crazy hours and weekends keeps me away from so many social activities and I just feel so distant from the world I once lived in with Stella.
 
In just a couple of weeks it will be 2 years since she took her last breath.  2 years since her soft, warm weight filled my arms and the smell of her maple & brown sugar porridge breath filled the air.  2 years since I nuzzled her shoulder, since I heard her cackle-y laugh.  Hugo is now almost the exact same age to the day that Stella was when she was diagnosed.  His energy, his smile, his mischievousness is so much like his older sister, yet he is a person all his own.  Sam is going to be 3 on October 20th, and has surpassed Stella in much of his development since her physical capabilities got stalled at age 2 years and 2 months.  Sometimes, he wakes up early in the morning and asks to come into bed with Aimee and I.  Though Aimee can’t sleep with kids in the bed, I will sneak him in and cuddle up, closing my eyes and breathing in the scent of play-doh and milk.  I put my head on his shoulder the way I used to do with Stella and close my eyes and sometimes pretend that he is her.  I’m sure a therapist or psychiatrist would have something to say about that…but I don’t think it’s unhealthy.  It’s just one way that I can still feel connected to her.  Remembering how it felt to have her sleeping peacefully between Aimee and I.  Sam is skinny, just like Stella was her last several months and his gangly legs and even breath is so familiar and comforting to me.  Once I even woke up and in the confusion of those first few moments of wakefulness, forgot that Stella had died and went to go smooth her curls.  The short, flat sheen of Sam’s hair jolted me out of my memory and the pain of her loss hit me full-force.
 
We had a great summer.  Despite the fact that the hours at the funeral home are challenging to manage, whenever I am off I find that I am energized and excited to spend time with the boys.  They are so full of energy right now.  They just run and leap and play from morning to night.  It’s exhausting and exhilarating all at the same time.  Sam and Gracie have become very connected.  Hugo sometimes gets in on the action, but he is content to play by himself sometimes, and often pairs off with Xavier whereas Sam follows Gracie around as though she is a celebrity.  They play well together and she looks after him.  The way she always looked after her cousin “Stellie”.
 
I was visiting with my friend Christie last week and we were remembering what it was like when Stella was alive.  Although it was a devastating diagnosis and difficult time, it was also a wonderful and magical time.  Our entire family was together day after day with the sole goal of making Stella’s life as fun and happy as possible.  We spent hours visiting, eating ice cream, putting on puppet shows, going for leisurely walks.  We were surrounded by friends and strangers who joined us in our goal and life was just a series of incredible experiences with other peoples generosity and selflessness.  Meals sent to us, people popping in with gifts for Stella, trips to Riverdale Farm and Great Wolf Lodge whenever we felt like it.  Now, we are back to the “regular” world, dealing with traffic, grocery shopping, laundry and working full-time, trying desperately to find time to visit and see all the people we love.  It’s hard.  It’s been hard to navigate all these changes.  Sometimes I get sad because my new schedule keeps me away from some of the people I was most connected with during Stella’s illness.  Sometimes I struggle with watching the world change so quickly around me while I still long for the days before my daughter was ripped from my arms.  Sometimes I allow myself to fantasize what life would have been like if things had been different.  But I can’t let myself live in the past, because I don’t want to miss all the wonderful things that are right in front of me.  So, Aimee and I have started talking about Sam starting kindergarten next year (sign-up is this coming February).  We did research on a gymnastics class that I think Sam would like to take.  Hugo has shown an interest in basketball (thanks to the movie High School Musical and its anthem, “Get Your Head In the Game”) that he has memorized.  Aimee continues to train on her bike, setting her sights higher each time.  I am navigating the challenging world of training to become a Funeral Director.  And with each day that passes, we experience change.  Changes in the seasons.  Changes in our community.  Changes in our lives.  It’s not all bad, it’s just a challenge.
 
 
Sam and Hugo enjoy watermelon at the cottage:
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Sam swinging at the park:
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Hugo loves going on canoe rides!
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Sam runs around the playground:
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Hugo does some “construction” work on Stella’s playhouse:
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Miss you baby.  Stella (August 2012):
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Hurry-Hurry

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I started my internship at a Toronto Funeral Home earlier this week.  It’s been absolutely bonkers.  The truth is, I haven’t worked a real, paying job since the day Stella got diagnosed, June 24, 2011, when I called in to say I’d be a few hours late because we were taking Stella in to the Doctors.  I never made it back, ever again.

The hours at the Funeral Home are tough…lots of 14 hour days (in heels- ouch, inhumane!), lots of evenings and most weekends.  It’s been a really difficult adjustment for all of us.  I miss my kids.  I miss my weekends.  I miss sitting with Aimee on the couch at night and talking about our days.  I miss folding laundry.  Miss reading bedtime stories.  Miss seeing Heather and Xavier.  Miss flat shoes.

Aimee has been incredible, just picking up the reins and stepping in to do the majority of the kid stuff while I chase this dream of mine (she even makes my lunches and dinners…thanks honey!).  In my first week at the Funeral Home, I’ve been thinking of Stella a lot.  She is, after all, the one who led me on this path.  On the days that I’ve burst into tears and convinced myself that I can’t do this— it’s too hard, too much to learn, too stressful— I’ve tried to remember her smiling little face and the things she endured, all the while appreciating each moment she was given.  Sometimes it works, other times I just want to run away and hide in the home I’m so comfortable in, where the memories dance in shadows on the wall and the kids laughter echoes from the ceiling.  But I remember reading somewhere once that if you don’t do something every single day that challenges you and makes your heart race a little it, you’re not really living. So, I remind myself that new things are always hard, and I force myself to go back.  I want to do this, so even though it is exhausting to stretch myself emotionally and physically and mentally each day, I am doing it.  And as the days go by, I am slowly learning and am confident that someday it won’t all feel so foreign and awkward.

One thing I’m having trouble with is the rush, rush, rush of daily life that I’ve been thrust back into. Before Stella was diagnosed with DIPG, I used to over plan and overbook her days and nights because I just wanted to get through them.  Parenting Stella was challenging.  A lot of it was about “killing time” until that blessed moment when she fell asleep in my arms on the couch and Aimee and I could breathe a sigh of relief and put a black “X” on the calendar for, “made it through that day!”.  After she was diagnosed, it was the opposite.  We dreaded what the next day, the next moment, would bring so we slowed down almost to a halt.  Each smile, each tear was cherished and rolled around in our hearts like a precious jewel.  I got used to taking things slowly.  However, life at a funeral home is again all about hurry hurry, rush, rush and I can feel my pulse and legs quickening and ramping up already.

It’s ironic really, because death is the moment when time stops completely for somebody.  When it ceases to matter, and everything just halts.  How strange that this moment is marked for everyone else with “hurry, hurry”.  When a death occurs in a nursing home, generally the family has only 24 hours to clear out their loved ones room so that somebody else can be moved it.  At the funeral home there is a rush to get the body embalmed (or cremated) before nature takes its course.  Then a juggling act to fit in multiple families who are looking for visitations and services and burials.  So it’s hurry to get the room emptied, hurry to get the body removed, hurry to figure out the when’s and where’s of a service.

When people come in for visitations or services, over and over again I see groups forming circles, hugging and kissing and saying, “I haven’t seen you in ages…we must stop meeting like this”.  People pour in and then, more often than not, they sneak out early citing things like work requirements, other meetings or not wanting to get caught up in rush hour traffic.  And I’m not saying that these aren’t valid reasons but…if we even rush through saying goodbye to someone who has died, if we think sitting in traffic an hour less on a Tuesday night is more important than saying a proper goodbye, what kind of message are we sending about the importance of a person’s life?  Showing up isn‪’t enough‪.  We need to FEEL something‪.  How can we say that we are living each moment to its fullest, celebrating the little things when a person‪’s life is n‪ot worth a little traffic‪?  We live while we are alive.  But once we die, is it also not important to stop the mad rush– just for a few hours— to reflect on life‪?  If you didn’t know the person that well, maybe they were a work colleague’s parent or something, it doesn’t make their life any less important.  Just because you didn’t know them personally, doesn’t mean it’s not “worth it” for you to spend an afternoon sitting in a space with other people and grieving.  I’ve written several times now that there are very few “safe” spaces with which we are allowed to cry and mourn.  It‪’s why I choose to go to events like Blue Christmas at my Church, or the annual Memorial Service at Sick Kids Hospital.  Because they create a time and a place to cry and be sad.  I think funerals or memorial services should be seen as something similar.  It is not a duty.  It is not something you “have” to do because otherwise your work colleague would think you were an ass, it is a privilege and a gift to have time to sit and reflect.  You can cry for your own parent, cry for the divorce you just went through, cry for the miscarriage from 22 years ago.  It doesn’t matter what or who you are grieving.   I have also seen people leave a funeral to check their Blackberries or cellphones.  It could be important— maybe they have a sick or dying relative themselves.  But more often than not, it’s work.  Or facebook.  We are so busy trying to get to the next thing, we have no time for now.  It constantly feels as though you are fighting against a whirlpool or demands as you walk through life, so of course it is hard not to get sucked into the running, running, running.  But how can a person that walked this Earth for 82 years, that ate and drank and laughed and loved and joked and raged and smiled and cried, not be worth 45 minutes in your day to reflect on and think about.  How can we be so proud of accomplishments like a high score on Candy Crush and not of how we chose to remember the lady three doors down who gave us tomatoes every fall from her garden?

I have tried to slow down in my life.  I have tried to focus less on “getting there” and more on the journey.  Tried to be present.  Not texting when I should be reading bedtime stories to the kids.  Not writing a grocery list from the bathtub when I’m supposed to be relaxing. It’s hard though, you’re constantly fighting to put the brakes on in a world that thrives on speed and immediacy.  Stella’s days after she was diagnosed were spent simply enjoying whatever came.  In the early days, it was trips to Riverdale Farm and Great Wolf Lodge.  Later, as her body began to fail her, it was sitting watching Dora the Explorer or Golden Girls and having her nails painted.  Later still, when she could do almost nothing, it was simply laying out in the sunshine under the tree in our front yard and being read to or listening to music or getting her nails painted.  It didn’t matter.  Stella was never in a hurry.  She savoured each bite of ice cream, rolled it on her tongue and often smiled after every single bite.  Sam is similar.  When he has something he likes (for him it’s popcorn), he eats it slowly and stops every once in awhile to give a big smile and say, “Mmmmmm.  Yummy in my tummy”.

Stella lived life full-tilt.  She was always on the go, always excited about what was around the corner, always bursting with energy.  But she also knew when it was time to stop.  To look at the gnarled roots of a tree and wonder how they got that way.  To screech to a halt when the ice cream trucks bells could be heard faintly three blocks over.  To sing a song.  We have to sometime shave a “pause” button in life, otherwise the moments get lost in the days.

As I drove to work yesterday, I noticed that the tulips had finally begun to poke their heads out of the ground and the trees have finally burst into umbrellas of green after an incredibly long winter.    Nature was in no hurry for the flowers to bloom yet they came eventually, when the time was right.  Because there is always time to live.  The secret of nature is patience.  Time should never be hurried.

 “The butterfly counts not months but moments, 
and has time enough.”- Tagore


 Birthday Cakes for no reason in honour of Stella:

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Mother’s Day Treats: 

IMG_6918Hugo loves swinging and so did Stella:

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Sam discovers the cottage beach as a new season begins:

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Sam, Hugo and Gracie roast marshmallows at the cottage:

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Miss your sweet face Stella

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Crib Notes

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Final Exams for me are starting this week.  The last few days have been a whirlwind of trying to balance motherhood, school and marriage.

I’ve had no time to write on the blog, no time to breathe or respond to emails or phone messages.  And just when everything is ramping up, when everything is starting to feel overwhelming and stressful, I realized that Stella’s birthday is just a few days from now.  Friday April 18th— Good Friday.   For Christians the day marking the crucifixion of Jesus.  How appropriate and inappropriate all at the same time.

This is one of those times when I realize that being a grieving parent means sometimes having to ignore the ache in your heart to focus on the immediate tasks at hand.  I wish I could just walk up to all my teachers at school and hold up my hand and say, “STOP!  I need to walk away from school until I can get through my daughter’s birthday.  I don’t care about the exams, projects and presentations.  I need to grieve”.  But life doesn’t work that way.  I have been swept up in the stress of real like expectations and requirements and so I cannot allow myself time to sit and cry over my beautiful curly-haired daughter today.  I have to study, study, study.  3 exams in the next three days, then her birthday off to celebrate and mourn and then study, study, study, 4 exams next week.  Running, running, running.  Reading cue cards as I clean up the dinner dishes.  Reviewing notes over breakfast.  Watching pathology videos on my phone as I absentmindedly try to read stories to Sam and Hugo.   Frantically reading powerpoint slides on the bus to school, demanding that my brain soak up information even though every cell is telling me it’s tired, worn out and wants to do something else now.  Trying to keep up with classmates who often yawn at the end of classes and tell me they are going to go home and have a nap before they begin studying, or complain about how they have catch up to do because they went to the bar Thursday night. I sometimes want to punch those students.

I’ve got to hit the books, just wanted to say I haven’t forgotten about the blog…it’s just I’ve got no time.  I fall into bed at night and then jump up in the morning and it’s go-go-go all the in between times.  Aimee is writing a blog post for Stella’s birthday on Friday, so there will be something coming then (o:   .

Stella’s birthday.  A day to celebrate.  A day to mourn and rage.

Ice cream for breakfast.  Timbits for lunch.  Macaroni and cheese for dinner.  Golden Girls and Dora The Explorer all day long.

Missing my daughter.  Reading The Principles and Practices of Embalming.  Wiping Sam’s nose and changing Hugo’s diaper.  Listening to Aimee’s work news.  Laundry to put away, dishes to do, groceries.  Buy balloons for Stella’s birthday.    All of life colliding into one big mess of priorities and I am emerging frazzled and teary, but determined.

One more important thing… Baby Stephanie is sick.  Very sick.  Please send your wishes, prayers and thoughts to her and her family.  I remember being where they are now.  Nothing to distract you from the agony of helplessness and despair.  Nothing to stop you from free-falling into the blackest darkness on Earth.  A kind word is like a small candle burning through the clouds, making the journey a little less lonely.  You can connect with Stephanie’s family through : babystephanie2014@gmail.com

 

 

Studying now.  Crying later.  Celebrating (hopefully) after.

 

To everything there is a season and a time to every purpose under heaven.- -Ecclesiastes 3:1

Xavier and Hugo at park:

 

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Sam at park…wearing his pink Dora crocs…inspired by Stella!
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Breakfast at McDonald’s:

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Breakfast at home:

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A new photo!  My friend Omo found this in her collection and sent it to me.  I LOVE seeing new photos of my girl!!!

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Telling Stories

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Yesterday in school, we had to do an exercise where you paired up with someone in class you don’t know and told them “your death story”—i.e. the story of a death that changed your life and, for many people, the reason they decided to become a Funeral Director.  The idea was to experience how difficult it is to share something sad and personal with a total stranger, to simulate what a family might feel the first time they walk into a Funeral Home and meet with you after their loved one has passed away.

 

The person I paired up with was very nice, and shared with me a story of a boyhood classmate who had drowned, teaching her at the awkward age of 13 how short and random life can be.  She then listened wide-eyed as I explained a bit about Stella.  I talked about the day she was diagnosed and the day that Aimee and I left our bouncing girl at home playing happily with friends while we drove to Mount Pleasant Visitation Centre and planned her funeral and how amazing the staff there were.  I spoke about how “good” her death was, how full of love and support and how she inspires me in what I do and say every single day.  I shared with her that I feel Stella’s death has made me better in many ways.

 

Afterwards, we debriefed in the class about our mutual experiences.  Many people had gotten extremely emotional in telling their stories.  Some were angry, many wiped tears from their eyes and one woman wept as she recalled having to put her beloved horse down.  One person didn’t even do the exercise as speaking about his personal loss was too raw.  He left the classroom instead.  When my partner was asked about her experience with me, she furrowed her brows slightly and said…”Well…the story was sad, I mean it should have broken my heart, but Mishi was smiling the whole time she was telling it…glowing almost”.  My partner seemed perplexed by this and I immediately turned beet-red.  It wasn’t a criticism, it was just that she was surprised I spoke so effortlessly and unemotionally about something so tragic.  I let her words sink in and have spent the last several hours mulling them over in my head.  I suppose the reason I tell Stella’s story with a smile on my face is because I have rewritten parts of the narrative of how she died.  I have turned her story into the Happy Ending type that I prefer to read.  Knowing and loving Stella and talking about her makes me happy, but that’s only because of what I choose to remember and tell people about.

 

Sometimes when we’re talking, Aimee will bring up something to do with Stella’s diagnosis day, or cancer, or funeral planning and I will have absolutely no recollection of what she’s talking about, leading her to make jokes about how I only remember the things I want to— but she’s not wrong.  I find that my brain has sieved through all the experiences of the time since Stella was diagnosed, and chosen only to keep the ones that stop me from falling to my knees, my chest exploding with grief.  When I tell Stella’s story, I focus on all the good things.  I talk about how happy she was and how, as a family, we found a way to laugh and live around Stella’s cancer.  The story I tell is about how Stella didn’t seem to mind when she lost each of her faculties, she still smiled and laughed and communicated with us.  I have memories of her playing with her friends and cousin Gracie even after she couldn’t walk or talk anymore.  I remember days spent in the sunshine under the tree in our front yard visiting with people, reading books and painting Stella’s toenails.  When Stella couldn’t see he pictures anymore, I would tell her the story of Cinderella.  She always smiled when the clock started to toll midnight, “DING-DONG”.  I think about ice cream and Timbits for breakfast.  I remember how it seemed every single person we knew, or who found out about Stella, did kind things for us.  I witnessed more acts of selfless generosity and love in those 16 months than I knew existed in the world.  Even now, a year after her death, people still send me trinkets that make them think of Stella and write me that they have not forgotten her.

 

I remember the moment she died as being very peaceful and quiet.  A tiny last breath as Aimee and I sat on either side of her, cushioned on “the big girl bed”.  If I am honest with myself and reach deeply into the recesses of my brain, I can remember how horrific the days were as we waited for that last peaceful moment.  Watching Stella’s eyes glaze over with a red film, suck in a half open-half closed state.  Watching her chest rise and fall, panting.  How she didn’t eat or drink for 12 days and it looked like she was starving to death.  How her body started to bruise all over from blood coagulating as she lay on one side, everything slowing down.  I try not to think about having to clean her mouth out with special solutions because it was getting thick and fuzzy from bacteria and lack of moisture.  If I think very hard, I remember hurting so much I couldn’t breathe.  I remember escaping to the basement to sleep for hours on the day she finally died because I couldn’t be with her anymore.  Couldn’t watch.  It was all my most precious dreams panting, dying, starving right before my unblinking eyes. And now as I write this, tears stream down my face and pool into my neck because it hurts so much to remember.

 

When I tell Stella’s story, I don’t focus on the nightmare of those first few weeks after diagnosis, when I couldn’t stand to be in the same room with Stella because the pain was overwhelming and made me vomit where I stood.  I never tell people (unless they read the blog from the beginning, I guess), about how jealous and angry I would sometimes get watching her friends run circles around her.  I don’t talk about how frustrating it was for all of us— Stella included— when she began to lose her ability to speak.  When something that once came so easily was something that needed to be pushed out painfully one syllable at a time, and often after all her efforts that left her panting and wide-eyed, we had no idea what she was trying to say.  Finally, one day, no more sounds came out.  Except laughter.  Right to the end, if she wasn’t too tired, she could always make a cackle-y laugh that ended with an out-of-tune series of three little giggles.

 

I have chosen to rewrite parts of Stella’s story, not to change anything that happened, but to leave some things out so that I can share the good, positive parts of her life and death.

 

The experience that my partner had in class, was of me being happy and proud of the life and death we gave Stella.  I have told her story so often and so publically— written on the blog, a couple of articles, given speeches at schools and Church, that it has become a narrative—a planned out, chronological, “feel good” story.  I’ll never forget when I was asked to speak to a group of 7 and 8th graders for Terry Fox Day last year and the Principal cautioned me that he wanted the speech to be “uplifting” as opposed to sad.  That’s what people want to hear.  They want to be inspired and feel good at the end of a story.  They want to believe that even though Stella died of this horrible monster called DIPG, her story is not a sad one.  And that is my mantra when I tell people about her.  The title I often use for stories and speeches is Stella Joy- A Love Story, because for me, that’s what it has become.   I suppose that’s one reason that this blog is important for me and Sam and Hugo to have.  I have never gone back and re-read anything I wrote, but I know that within these type-written pages, there are those pushed-aside feelings of anger and grief and frustration and horrific sadness.  They are all here, easily read and acknowledged.  Each entry of this blog builds on the last and forms the full story of Stella and what happened to her.  Catherine Porter’s articles and E-Book about Stella are the same, chronicling the ups and downs of our experience.  But the story I have written for Stella, the one I choose to tell when people ask me, is not a sad story.  It has sad parts to it, but it is the story of overcoming pain and learning to embrace life in small moments, not big chunks.  It is about love and community and believing that good things can come from horrible situations.  It is about honouring a life lived by focusing on the beauty, not the ugly, twisted tumour that stole my daughter’s life.

 

I have often said that my life mantra has become, “Find the Joy”.  But perhaps, more accurately, it should be: “Find the Joy.  And if you can’t find it, make it up”.

Sam and Hugo play with some special wish stars that a blog reader from the UK kindly sent us this week:

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Stella, Summer 2010:

Stella Muskoka chair 1 year

Stella and I, a few days before she died: 

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