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:
Sam swinging at the park:
Hugo loves going on canoe rides!
Sam runs around the playground:
Hugo does some “construction” work on Stella’s playhouse:
Miss you baby.  Stella (August 2012):
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Notes in the Margin

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Stella is like a special secret whispered in my ear.  As I go along in this life, no one has any idea how often she is with me.  He little cackling laugh is in my mind, her fearlessness is in my heart and her name is breathed silently as I inhale and exhale through the days.  I often find myself doodling her name in the margins of my note paper as I sit in class.  What a lovely name she had!  Stella Joy Bruner-Methven.  I print it out carefully, then use my best handwriting and make the “y” in her name loop nicely over and back, and sometimes experiment with calligraphy or block letters.  I want to see her name.  To remind myself, prove to myself that she lived.  The people who are around me most of the time don’t know anything about her.  They never saw the light bouncing off her curls, have never heard any stories about how she exasperated me, are unfamiliar with her story and her legacy and her life.  To most of those I meet now, I am Sam and Hugo’s mom.  When people comment on how often I am sick with colds, or if we’re trying to get together for group work, I often end my sentence with, “I have young kids”.  “How old?”  they ask, “1 and 2,” I respond.  And that’s that.  Stella is not part of the equation.  There is no understanding or knowledge of all that I have seen with my eyes, or felt in my gut.  Stella doesn’t register with new people.  Even if I mention that I had a daughter who died, she is not real to people I’m just meeting.  It is just a sentence that I utter with no depth or meaning.  She is not concrete to them.  But to me…oh, she was so very, very real.  I can easily recall how the teeny, tiny fine blonde hairs on her upper lip sometimes had milk on them.  I remember that she had the softest skin and little dimples in her chubby knuckles.  I can imitate the way she would dance, rocking back and forth and shaking her head in a movement that was actually very penguin-like.  I remember how she made the word “Mama” have three syllables when she called me, “Ma-a-ma”.  She existed.  She was here.  And I was her mother.

I took Hugo to swimming lessons for the first time last night.  At 17-months old he is pudgy, affectionate, and easy-going.  His hair is so unbelievably straight that it sticks out in funny ways when it gets too long, like now.  He’s cute and people tell me so all the time.  So, last night in class, a woman with a little girl who looked to be about Sam’s age befriended me.  Her daughter Aleisha was small and dark with a lovely smile and soft black curls down her back. The mom was super-friendly and chatty.  She assumed this was my first swim class with Hugo (which was correct), but also assumed that I was a first-time mom and that Hugo was my only child.  So she geared the conversation towards “helpful hints” that I might need to know.  She didn’t ask me about it, just assumed, and I didn’t both to correct her.  So, she chatted about which pools were warmest in our neighbourhood, and the classes that Aleisha had taken that she liked (“Gymboree is so expensive, but there is a place called Trampoline Club that is just as good and half the price…”).  She amiably told me about singing groups and drop-ins.  She offered me toilet-training hints and recommended a place to get used clothing cheap.  I smiled and gave the interested, “oh, really?” responses.  I could have told her that I had more children, but I was too tired.  When I say Hugo has a brother who is 10.5 months older than him, I get raised eyebrows and comments about how crazy it must be to have children that close in age.  If I mention that I have an older daughter, everyone wants to know how old.  I can’t answer that question anymore.  She was 3.5 when she died, she would be 4 now, almost 5, but she’s gone so how do you calculate age?  And then, of course, I have to say that she died which results in sympathy, but it is a passing sympathy.  A societally-dictated furrowing of the eyebrows, frown and cluck of the tongue with, “awwww.  I’m so sorry to hear that” thrown in.  And while this is much, much better than stunned silence, it’s meaningless.  It’s not their fault, but strangers who offer sympathy only serve to remind me that their sympathy goes no further than their voice.  They don’t feel icy coldness in their stomach, they don’t comprehend everything that I lost, they have no idea how hard it is for me to be standing there and saying the words, “My daughter died of cancer when she was 3 and a half”. It’s not because they are unsympathetic, it’s just that you can’t truly be sad about something or someone that is meaningless to you.  You can fee sorry for someone, but not bone-shattering sadness.  So, I said nothing.  Just stood there playing the role and let Aleisha’s mother believe whatever she wanted about me.  It was easy to do.  I fell into the “first time mom” box with very little trouble at all.  I realized in that moment that sometimes it’s less tiring to pretend to be someone else, then it is to be the real me.

Afterwards, I thought about how with Stella’s death, the old Mishi died as well.  I will never, ever be the same person I was before I heard the letters DIPG in conjunction with my daughter.  I find that Aimee often comments on how quiet I am.  I never thought I was loud to begin with, but I guess I hadn’t noticed until she pointed it out how much I live inside my own head now.  I listen to everything, observe what is around me closely, but have very little to say about most things.  In fact, I’m happiest being a homebody.  Just spending time with Aimee and our families and the kids, dealing with the everyday realities of laundry and lunches and bath time.  Sam and Hugo don’t need me to talk very much.  They like cuddling on the couch and reading bedtime stories, but compared to Stella, they are pretty low maintenance and actually entertain themselves a lot of the time.  When the kids are finally in bed, Aimee and I usually bustle around and get ready for the next day.  Before we fall asleep, we like lying in bed together and reading the newspaper in compatible silence.  I prefer text-messaging people now as opposed to speaking on the phone and find writing an easier way to communicate than face-to-face conversation.  Maybe it isn’t the healthiest way to keep and build relationships, I don’t know, but it’s what I’m most comfortable with.  I like spending time with those people that Aimee and I are closest to because they don’t require me to make conversation when I don’t feel like it.

I’ve talked before about how Stella’s cancer and death made Aimee and I really focus on what is important in life.  We spend more time with friends and family and less time cleaning the house.  We try to go on dates regularly, even when we have no money.  We appreciate the small things in life and don’t believe in the word “Impossible” anymore.  However, not all the changes are positive.  I am more guarded now.  I am quieter.  I am pickier about the people I choose to associate with and the people I choose to tell about Stella.  They have to be worthy, and I think in some cases this choosiness has been translated by others as snobbery, or being ungrateful to people who have reached their friendship out to us.  I don’t always have the energy to fake my way through social situations if I’m having an off day.  There are some people who mourn the old me— the more carefree, chatty, un-jaded person.  Sometimes I mourn the old me too.  But there’s nothing I can do to bring her back.  I can’t ignore the feelings I’ve had, the things I’ve seen, the life I’ve led.  So instead, I need to love the person I’ve become now.  Even if she is a bit quieter, a bit more guarded, a bit less carefree.  I need to learn to love her because she is also less stressed out, easier to please and more aware of the thousands of small blessings that perfume each day with sweetness.  Aimee and I and our families have worked hard to turn Stella’s death into an opportunity for us to truly celebrate life— to Find the Joy in everything we do, and part of that is being true to ourselves, for better or for worse.

Maybe it’s not that I’m quieter or more boring now.  Maybe it’s just that smaller things bring me as much joy as bigger things used to.  The exotic vacations have been replaced by weekend trips to a humble cottage.  The drive for a career where I could make lots of money has been replaced with the desire to work in a field where I can make a difference, even though the money is much less than what I used to make.  The need to have a multitude of friends to rush around visiting and spending time with has been replaced by contentment with my own company and that of my kids.  I get great pleasure from a hot cup of tea, a long walk in the sun, tucking my kids into bed at night, sharing a laugh with our family, embroidering, rediscovering an old book and eating dessert.

And I get an immense amount of delight in writing my daughter’s name in the margin of my notebook at school.

Stella Joy Bruner-Methven. Stella JOY Bruner-Methven.  Stella Joy. Stella. JOY.

She was here.  She was real. And I guess even when I meet people like Aleisha’s mom or people at school who know nothing about her, she affects them because she has affected me and who I am.  So though she is not here, I am.  Still here, still standing.  She is with me always because she is part of me always.  The parts of me that died with her, and the parts of me that live in her honour.

 “The deeper the sorrow carves into your being, the more joy you can contain”.     -Khalil Gibran

Finding joy in the simple things in life…cuddles with Hugo on the couch:



Daniel tickling Xavier:

IMG_0583The boys reading books with their uncle:



Spending time with family (Juju, Gracie, Sam, Aimee, Tutu, Angie, Hugo):

IMG_0624Spending MORE time with family (DeeDee, Aimee, Poppa, Uncle Tristan, Me, Sam and Hugo):



JOY.  December 2010 (20 months old):

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Dancing in Heaven

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Dancing in Heaven

 I’ve been home full-time caring for kids for over two years now.  The last day I worked was June 23, 2011.  I have really let myself go.  I weigh 15 pounds more than I did when I worked (thanks to a steady diet of Jos Louis and Pepsi), and wear the most comfortable clothes possible.  Clothes that daily have baby barf and spit and pee and splashes of yogurt on them.  I shower a couple times a week if I’m lucky, and only wear make-up at weddings and funerals.  I caught site of myself in a store window last week, pushing Sam and Hugo along in the double stroller and was horrified at what I saw.  Ill-fitting jogging pants that hugged all the wrong curves, a loose t-shirt with stains and a hole in the sleeve, a bandana over my greasy hair and my shoulders hunched over as I pushed the boys along the street.  Ugh. Though I loudly proclaim to anyone who will listen (usually only Aimee), about how I have no one to impress, I think there’s a difference between dressing for comfort, and wanting to disappear.  The events of the last two years have broken me somewhat, and though I am trying to piece things back together, I don’t look after myself.  Pedicures are an expense we can’t afford, my last haircut was done at the kids place the boys get their hair cut at, my clothing all comes from Value Village, I despise high heels and given the choice would eat Lucky Charms for dinner any day of the week.  The outward demeanor says I’ve given up, but that’s not true.  Yes, Stella died.  Yes, my heart is broken, but I am continuing to live a very full life.  With that in mind, I ridded my closet of all my most “comfortable” (aka—ugly) clothing, and decided it was time to start caring a little bit more.

Coincidentally, I had the opportunity to get a little bit dressed up on Saturday night. Last month, Aimee and I received an invitation to a joint 40th/50th birthday celebration from friends of friends at one of the nicest hotels in town.  It would be most like us to decline such an invitation, but at my urging, we RSVPd.  “It will be fun,” I told Aimee, “these people are going to put on one Hell of a party, and some of our friends will be there.  It will be good for us.  A night out”.  The people putting it on (Marjorie and Deb) sort of float in our outer circle of friends. They are best friends with some of our best friends, but we don’t really know them that well.  They have always been incredibly generous people, truly good hearted,  and even threw Stella and incredible birthday party (when it wasn’t really her birthday) not long after she was diagnosed.  They dubbed in “Stellapalooza” and it had face painting, Sesame Street decorations, balloons, music, etc.  It was awesome.  They also had us over to their house for a swim a couple of times last summer.  We knew they were kind and generous, but were a bit mystified as to why we were included in their party invitation since we were “second tier” friends.  But whatever the reason, we were invited, and decided to go.

So, feeling a little bit ridiculous, on Saturday night Aimee and I booked our friend Tasha to watch Sam and Hugo and got dressed.  It was a white party, and though I had gone to Value Village and picked up a white skirt I planned to wear with a T-shirt, at the last minute Aimee convinced me to wear a white dress of her mothers that was decidedly fancier.  I dug through the drawers of the bathroom looking for makeup and came up with some dried up mascara that I added water to, and some sticky bubble gum pink lip gloss that I used as blush.  It wasn’t exactly top of the line, but it was about all I could muster.  I went to our friend Christie’s house early as she had rented a limosine for the occasion, and I had never been in a limo before.  It was light-hearted and fun.  Maybe because Aimee wasn’t there (she was meeting me at the party as she was at her moms that day), and the other people were in couples, maybe it was strange for me to be dressed up…but I felt like I was acting.  Acting like I was socially smooth, when really I felt like a big dork wearing a white dress and clumpy mascara.  It reminded me of my awkward teenage years when I wanted badly to “fit in” with the cool kids, but kept looking over my shoulder wondering when they were going to realize I was a nerd, and kick me to the curb.


Christie is lovely enough to have a big, beautiful picture of Stella up on her fridge and as I stood in her beautiful kitchen making small talk, my eyes kept wandering over to Stella’s big blue eyes and red curls.  The two things didn’t connect in my brain.  There is a picture of Stella on that fridge.  Stella is dead.  I’m dressed up.  I’m going to a party.  This is happy. But my daughter’s dead.  Am I happy?  I can’t tell.  It was so disconnected.  A little while later as I sat in the limo, sipping champagne and giggling at my friends antics, I wondered if I would ever feel as though I belonged again, or if there would constantly be this “fish out of water” feeling.  In my grief I feel as though I am constantly straddling two worlds and trying to figure out my place in both of them.


The party was just as I had imagined it— a sea of gorgeous, put-together people sipping champagne and eating finger foods with grace and ease, the beautiful backdrop of the city behind us, shimmering in the floor-to-ceiling windows.  These people were definitely one echelon up on the social ladder.  Aimee laughed at my clumsy attempts to manage the hors d’oeuvres (seriously though, how do you balance the food, napkin, your drink and purse without dropping something???), and came to the rescue when I dropped a big plop of dip onto my foot and the carpet.  “Can’t take you anywhere,” she teased.  It seemed as though everyone who walked in was gorgeous and smart and oozed self-confidence.  I was in awe as I shoved chicken skewers and mahi-mahi tacos down my throat, comfortable in my flat ballet slipper shoes even as I gawked at all the women wearing 6 inch heels.


As the evening progressed, I ate, spent time with Aimee and our friends and laughed.  It was fun, and beautiful.  I realized it had been a long time since I socialized without kids and it felt good.  I even took part in a surprise flash mob that I had gotten an invitation to join.  I’d always wanted to be part of a flash mob, and thought it was such a hoot.  We were near the back so couldn’t really see anything, but I waved my arms and shook my butt just like the other participants.  It was a fun, silly moment that had me dissolve into giggles when it was all over.


Near the end of the night, the hosts made a speech.  It turns out that this joint 40th/50th birthday party was just an excuse for them to have a really great, fun party.  It was neither Marjorie nor Deb’s birthday.  They explained that when thinking about what they each wanted for their birthday’s earlier in the year, they came to the conclusion they didn’t need anything.  They just wanted to have a great time and celebrate life.  “You are our gift,” said Marjorie in her speech, “your joy is our gift”.  I knew she wasn’t thinking specifically of Stella when she said that, but it felt as though a lightening bolt went off in my brain.   Joy is the gift. “Choose Joy”.  Isn’t that what Aimee always said, because that’s what Stella and our family had done?  Faced with the worst news possible, and a long, tumultuous journey with cancer and illness, we had chosen joy over sadness and celebration over wallowing.  I felt Stella’s presence in that moment, felt her urging me to choose joy.  As the speeches ended and the DJ began to play music I did something completely out of character— I grabbed my friend Omo and told her that I wasn’t leaving until we had danced to at least one song.  It was wayyy past my bedtime at this point, and I felt awkward on the dance floor, but I didn’t care.  Stella would have danced, and so did I.  Forming a small circle of some of the people that had held us up through Stella’s illness, Omo, Jean, Christie, Kate, Aimee and I danced together.  Aimee twirled me around and gave a little fist pump into the air that made me laugh.  In that moment, it occurred to me as I looked out from the 21st floor of the Ritz-Carleton hotel in Toronto that it felt like we were literally dancing in the sky.  With everyone around me dressed in white (it was a white party after all!), I wondered if this is what it would be like to be dancing in Heaven.  I wondered if Stella went to dance parties in the sky like this where the stars were the wallpaper, white swirled all around, and laughter and light were more important than whatever song was playing.  The thought of Stella dancing in the sky made me smile. Surrounded by friends, throwing my arms up in the air and wiggling around like a fool, I felt Stella’s approval around me.  As Aimee and I descended the elevator from the party, I felt truly happy.  I had chosen joy, and my reward was feeling Stella’s spirit around my shoulders in a warm hug.


The thing about joy is that it comes from deep within.  It’s not the same as other emotions that are a result of circumstances beyond your control.  Joy is always inside you, and it’s always there ready to be set free.  So, in honour of Stella, let us all CHOOSE JOY today.


Aimee and I join Stella’s best friend Arin’s mommies at the party!


Hugo and Poppa finding joy in bubbles


GrandPa, Sam, Aimee and Hugo ride the toy train at Don Mills Centre


Wheee!!! Swinging on the Beach in Pickering


Uncle Tristan and his boys


Another girl who didn’t need a particular reason to celebrate! Stella enjoying one of her many un-birthday, birthday parties! September 2011


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A New Coat of Paint

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A New Coat of Paint



One of the things I wasn’t prepared for with Stella’s death was how difficult it would be to continue to live in the physical space where she once was.  Aimee and I had been warned by our psychiatrist that generally people fall into two camps: those who are comforted by being in the place their child lived and died, and those that can’t tolerate it and need to get as far away as possible.  I have been in contact with many bereaved parents since Stella was diagnosed and there are some that have moved from their old homes, old neighbourhoods. There is even one person who left the country and I’ve heard of another who even moved to a new continent.


The house that Aimee and I live in is special to us.  It is the first and only one we’ve ever owned.  It is located about 12 feet from the home I grew up in.  My dad owns the house right across the street from us and my mom’s backyard runs into ours.  Aimee’s dad is a 10 minute drive, her mom is a 15 minute drive and Andge and Julia are about 20 minutes away.  My brother lives with my mom and my sister lives with my dad, so we are literally surrounded by family.  Almost all of our friends live within a 5 minute drive or less from us.  There are good schools nearby, lots of parks, libraries, restaurants, grocery stores.  It’s a lovely neighbourhood.  We bought this house 9 years ago and it was a total dump, but we saw only the beauty and potential of it when we moved in.  We’ve spent the last almost decade turning it into our home.  Saving up money and fixing it up one room at a time.


The sink in the kitchen is where I first told Aimee we were pregnant with Stella.  I have it on video and she is crying and squealing with excitement as the tap runs, momentarily forgotten, in the background.  The same sink that was surrounded by dripping white candles the night that Stella died and Aimee carried her body, wrapped in a soft white blanket, out to the waiting car where she disappeared from us forever.


The dining room table is where we laid out all the baby things we got for Christmas 2009.  We stood at the table staring at everything for a long time, in disbelief that four months later we would be using all those things for our baby.  We didn’t know the difference between the teether and the soother on the table, but we were determined to give our child the best of everything.


The washroom got renovated just two weeks before Stella was due.  For three days we lived with no toilet.  In the middle of the night, hugely pregnant, I would have to choose either going down to the basement and using our tenants bathroom (awkward to say the least!), or stepping outside into the backyard and peeing on the grass like a dog.  Neither was ideal, but both memorable.


Our bedroom is where I labored with Stella, writhing and screaming thinking I was being ripped in half.  Aimee and I now laugh at how I insisted the midwife come and check me because I was sure it must be time to push…and I was only 1cm dialated when she showed up!  The bedroom is also where Stella died.  Right in the middle of the bed where Aimee and I sleep every night. Wearing her purple t-shirt and bike shorts, my beautiful 3-year old daughter died in our arms in the same room I once labored her into life.  The walls have been decorated with screams of pain and anguish twice now.


Stella’s room.  Where Aimee and I lovingly painted the walls with special (read: expensive) all-natural eco-paint.  Where we put together all the furniture ourselves, carefully folded all the newborn clothes and put them into the dresser.  Where we sang our baby to sleep, read books, laughed and dreamed.  Where Stella would wake up in the morning and hold her arms up to us, ready to be lifted out and begin her day.  The place I fought most with her.  Attempting to put her to bed.  To get her dressed.  To convince her to sit on my lap for just thirty seconds so I could tie her shoes.  To force her to pick up the books she yanked off the shelf with glee. Many tears of frustration and anger were shed in that room— for both of us.  But there were also times when the moon and stars would peek through the windows and she would giggle and try to grab my nose as I sang Carly Simon songs softly to her, both of us, momentarily, enjoying the safety and warmth of just being together.


The dining room floor where Stella took her first steps.  It was like a crooked little straight legged run straight into Uncle Tristan’s arms.  Where Gracie and Stella played for hours, chasing each other in circles and collapsing into a pile of giggling arms and legs.


And the couch.  So many memories on that couch.  We lived on our couch for 16 months, day in and day out (in case you’ve forgotten, here is a blog entry from  October 2011, all about the damn couch):


That couch was our bed, playroom, kitchen, office and more during the months Stella was living with DIPG.


This house is bursting with memories for us.  Each creak in the wooden floor is like a fresh cut on my open wounds.  I can see Stella so clearly in every corner of every room.  Dancing, laughing, spinning, living.  It’s excrutiating even when it’s comforting.  But we live here.  Aimee and I decided a few months ago that we weren’t willing or able to sell this house.  It hasn’t been easy to stay here.  It’s not just the house, it’s the whole neighbourhood.  The playgrounds we took Stella to, the school she should have gone to, the library we walked to, the shops we frequented.  Each sphere that we move into without her is a stark reminder of everything we’ve lost.  It’s not always easy, but we are dedicated to our lives here and we want to stay.  So, we decided that instead of moving, we would give our house a makeover.  Nothing structural, no “home improvements”, just paint and furniture placement.


For the last few weeks, we have had the entire house repainted.  We moved around the furniture.  We couldn’t bring ourselves to get rid of Stella’s couch, so we kept it but got it recovered in a grey fabric.  We changed around all the art and bought a couple additional pieces on Etsy.  We printed out dozens of family photos and created a Family Photo wall.  We finally made Stella’s room into Sam’s room and Sam’s room into Hugo’s room (It’s only a 3-bedroom bungalow).


Now it’s done.  Everything looks fresh and different.  It’s a new coat of paint for our new lives.  The life where Stella is dead and we are living as the parents of Hugo and Sam.  It’s beautiful.  I love every room.  But if I thought it would heal something deeper inside me, it hasn’t.


Stella is missing.  Since the day Stella died, our house has felt different.  Even our friend Christie said it when she popped by yesterday.  When Stella was here, both pre and post DIPG, the house just reverberated with life.  It was loud and chaotic and busy.  Especially after Stella was diagnosed, it was always bursting with people and food and conversation.  We all lived loudly for Stella because she reacted to pantomime-style humour.  We marched all over the house singing “blam blam” when it was time for meds.  We had tea parties with our puppets Fred and Carrot on the couch.  We painted our nails.  We chortled about bodily functions and let Stella pretend to hit us all because it made her laugh.  The TV constantly blared episodes of Dora, Barney, Olivia, Sesame Street.  Family and friends came to visit everyday, at all times of the day.  We ate constantly.  The kettle was always cheerfully whistling as we drank gallons of tea.  It was energetic, social, loud.  As Dickens wrote, “It was the best of times, it was the worst of times”.


And now, sitting in our beautiful home, it all feels so empty.  Sam and Hugo are wonderful boys.  We have a blast with them and I am hopeful that in time we will create hundreds of new, happy family memories together, accepting that our lives will forever be marked by Stella and all she brought to us.  No matter how many times we paint over the walls or move the furniture around, her laughter will always echo off these walls and the memories we have here will always seep out with the turn of a tap or the lighting of a candle.


Same walls, even though they’ve changed colour several times.  Same floors, even though we put new hardwood over the old hardwood a few years ago.  Same windows, even though they were upgraded to be more “energy efficient” at some point.  Same layout.  Same creaky spots.  Same front door. The same but different.  Kind of like Stella when cancer started to change her. Lots was different on the outside, but she remained the same on the inside…right to the very end when all she could do independently was stick her tongue out, she still managed to convey joy and humour in all she did.


And even though change is hard, I have been staring at a gorgeous encaustic rendering of Stella that was a gift from friends, the one where a butterfly had landed on her cheek, and I remember that, “if nothing changed, there’d be no butterflies”.  And we all know that butterflies symbolize transition, time, celebration and soul.

The butterfly counts not months but moments, and has time enough.  ~Rabindranath Tagore


Xavier and Sam:

Gracie and Sam attending a concert on Family Day:

Stella’s room before:

Stella/Sam’s room after:

Stella, March 2011:

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Walk the Walk

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Walking the Walk

I was giving Sam and Hugo a bath the other night, when I glanced at the side of the tub and noticed a green crayon mark.  I smiled to myself as I remembered the day that Stella had (unbeknownst to me), thrown a green crayon into the bathtub while I was running it, so that when she got in, she was able to get a big green swipe on the pristine white porcelain before I grabbed it from her hand with a startled, “Stella, No!”  I remember she giggled and splashed at me as I tried furiously to rub it off the tub.  I thought I’d gotten it all, but evidently there was a second small scribble that I had missed because there is was, looking like a crooked smile on the inside of the tub.

As I sat there watching the boys splash around, I wondered if my reaction would be the same now if Sam or Hugo suddenly produced a crayon from the bubbles and began to colour.  When Stella did it, I was upset.  I was frustrated and gritting my teeth at the fact that the tub was “ruined”.  One of the things I often talk about to people and in my blog is Stella’s lesson about living each day to the fullest, and not sweating the small stuff.  I began to wonder if, 20 months post-diagnosis, 3 ½ months post-death, I’m truly walking the walk of living better, loving better and parenting better.

The thing about change is that it’s hard and long-term change takes a huge effort.  It’s easy to change for a short time, but sooner or later most people revert back to their most comfortable selves or place.  So I began to think about whether or not there have been any truly lasting changes that I’ve been able to make.  It’s so easy to say, “I’m living a better life”, but is there concrete proof of it?  Here is what I came up with:

I know I walk the walk of “People are more important than things”.  I’ve really stopped focusing almost completely on objects.  I don’t care if the clothes I’m wearing are “cool” as long as they’re comfortable and seasonally appropriate.    I am now a huge proponent of buying clothing at Value Village (thanks Heather!).  I can’t bring myself to pay full price for something in a department store when I know I can get good quality clothes for a fraction of the price.  They’re gently used, but I’ve never had anyone look at me or my kids and say, “hey…did you buy that used?”  I would rather spend time with my friends and family than clean the house.  If I was offered a high paying job that meant I had to work 60 hours a week, I wouldn’t take it.  I even (gasp!) let the boys play with my iPhone.  They both love watching videos of Stella on there, and because she’s my screensaver Sam takes the phone every morning and kisses her picture, jabbing his finger at the screen and saying, “Della. Della. Della”.  Last week the screen of my iPhone shattered.  I didn’t care.  It still works and I wouldn’t give up the memories of Sam looking at his sister and kissing the screen each morning for anything.  So now the phone is encased, broken screen and all, in a protective carrier and the kids still get to play with it.

I know I walk the walk of “Now is what matters”.  I spend less time dreaming about the future, and more time being grounded in the present.  I used to always be trying to multitask; answering messages while cooking dinner, texting while bathing the kids, doing homework while eating dinner with Aimee.  Now I try really hard to make time for everything, without having to do multiple things at once.  Instead of getting frustrated and shoving toys at Sam so I can try to empty the dishwasher, I involve him in the process.  I talk to him and engage him and let him “help”, even though his helping means having to rewash all the spoons he bangs on the floor or sucks on.  It makes a chore fun.  It makes my time with him more rewarding.  It allows me to focus on him and empty the dishwasher as a secondary thing instead of the other way around.  I have gotten bad at responding to emails and voicemails.  Sometimes I’m weeks behind, but it’s  okay because I’d rather be playing with the kids, helping Tristan with his homework, watching a video with Gracie or visiting with friends and family than sitting in front of the computer by myself.  I feel like I’m enjoying life more by simply focusing on one thing at a time instead of multitasking.  Multitasking is no longer a goal of mine, it’s something to be avoided when possible.

I know I’m walking the walk of “Fearlessness”.  There are so many things I used to be scared of that I just shrug off now.  Simple things used to throw me off, like having to ask for help carrying my stroller over a snowbank.  I would walk two blocks out of the way to avoid asking for help.  Two days ago I flagged down a stranger from the opposite side of the street to help me lift Sam and Hugo’s stroller over a puddle.  I shouted at him over two lanes of traffic and pretty much shamed him into helping me.  It’s a small thing, but a big change for me.  There are still lots of times that I feel as though I don’t fit in, or I don’t want to do things because they make me sad but I’m not afraid of them.  I can go to a wedding by myself now.  I can introduce myself to strangers.  I can speak publically.  I can disagree with people.  I’ve been looking into some career choices that are a bit unorthodox because Stella would have told me I could do anything I wanted.  Stella was brave and daring and I learned by watching her.

I’m not quite at my goal of “Making a real difference” yet.  This is not something that I’ve gotten to where I want to be on.  We have been overwhelmed with generosity, friendship and love over the last 20 months.  I have attempted to respond to emails, give verbal thanks, to show appreciation and be.  But I think the best way for me to show how much these have meant to me is to give back, and I haven’t gotten there yet.  Those that I’m closest to all seem to be giving back in some way.  Aimee has gone back to work at Camp Oochigeas (camp for kids with cancer), where their entire reason for existence is ensuring children get the most out of camp experience, despite their illness.  Auntie Angie works at the YWCA (see a very cool video she did in one of her programs here: http://www.youtube.com/watch?v=vDCBPKPG-YU         ) where they are dedicated to girls programs meant to empower and educate young women, especially those who are marginalized or at risk.  My sister Heather is a Special Education teacher as well as a respite worker and has spent her life dedicated to teaching those children who have often fallen through the cracks of the education system, giving them a chance to succeed.  Auntie Juju works at the 519 community centre where she runs programs for the homeless and underhoused and advocates for the LGBTQ community.  All these people also volunteer in their spare time.  Me?  I have yet to discover a career that speaks to me.  I have yet to reach out and help others in a concrete way.  I have yet to fulfill the promise I made to myself to make the world better, the way that Stella did.  I still give excuses when people ask me about volunteering that I’m too busy, have two babies at home, etc.  I am not selfless.  If this were a report card, I would get a “Needs Improvement”.

Many of the ways in which I’ve changed are small.  Small changes that have made a big difference.  But here is something else I’ve learned about change.  Not only is it difficult to put into practice, but it can result in losing some relationships, because when you change your values may no longer be in line with the people you were once closest to.  Personally, I can’t stand being in an environment where things I perceive as petty are being discussed at length.  It’s not anyone’s fault, but I just can’t be around it.  As a result, there are certain people or situations that I am no longer interested in being part of.  And it’s hard.  Hard for those I may have hurt by my decision to not spend time with them, and hard for me to accept that I can’t be the person I once was.  But you know what?  I think it’s worth it.  I think it’s worth it to be true to yourself, even when it means having to accept that the person you once were wasn’t good enough.  To change the world, first I will need to continue working on changing myself.

Many people have commented since the blog started about different things they have done because of Stella.  I LOVE hearing that someone has taken their kids on a vacation, even though they won’t remember it, because it’s more important to see them having fun in the moment than wait until they’re old enough to appreciate it.  I LOVE knowing that someone took the time to volunteer at a hospice organization because they were inspired by Stella.  I LOVE seeing Stella’s friends find ways to incorporate her into their lives even though she died.  I LOVE meeting new people and telling them about Stella, or hearing from them about how Stella made a difference to them.

As I drained Sam and Hugo’s bath that night, Sam put his fingers up in the air and wiggled them.  I smiled.  This is his sign for wanting to sing “Twinkle Twinkle” little star.  He and Hugo splashed in the rapidly draining water both laughing as I belted out the song with my “spirit fingers” wildly waving, my heart and head nowhere but in the bathroom with my sons.  Out of tune, but not out of step.

Grief doesn’t just change you, it reveals you.

Sam at the library:

Hugo eating his cracker:

The boys enjoy a big dump of snow:

Remembering When: 


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