The Worst Day of My Life (by: Aimee Bruner)

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I should have been dropping you off at school today Stella.  Just like all the other parents are doing as they wrestle through the chaos of their morning routines, sipping coffee while trying to get to work on time.  This warm Wednesday in June should have been like any other – but it’s not.  This is the day, three years ago, they told us you were going to die.  June 24th, 2011 – the worst day of my life.  This day is one that your mama and I, along with those who love us, have tried to erase from history.  It’s one that I’ve buried as far down into the depths of my being as it will go but it always manages to creep back up and make its way through the cracks in my heart.  If you scratch just beneath the surface – it’s there.  The trauma of that day is etched into me with no detail left behind.  I remember what I wore that day.  I remember what you wore.  The green shirt with a bicycle on it, the brown hat I had just bought you from Roots and of course – your new “doctor’s shoes”.   Those white and pink shoes mama bought you were what we used to bribe you into going to SickKids that morning.  I remember the smell of the atrium, the echo of the Starbucks line and the green cages above the railings on each floor.  I remember your aunties arriving one by one as they (unbeknown to us) became increasingly worried about what could be wrong with their curly haired, smart mouthed, exquisite, imp of a niece.

I remember the subtle glance that the intern neurologist gave to the 3rd specialist that examined you when he caught sight of your big toe sticking up.  Looking back now, I know they knew something horrific was lurking in your head.  I remember wandering through the gift shop looking for the best thing to buy you.  I settled on a little Dora doll and you loved it.  I remember glancing down at a book in that store – “C is for Cancer” it was called.  When I saw it, I felt sad inside for the parents whose kids had cancer.  I remember the toy doctor’s kit your aunties bought you from that store, equipped with everything a doctor would need, including the little, round, blue glasses that you would put on and never take off for the 5 days that followed.

I remember all of it and it makes me sick.

I remember hearing the words “mass”, “oncology” and “brainstem”.  I remember the sad, weighted look on the doctor’s face when I asked him whether there was a chance that the tumour was benign and I remember how quickly and confidently he said “no”.  I remember watching your mama fall to the floor as the medical team worked to revive her from her terrified, faint and traumatized state.  I remember retreating to the bathroom near the nursing station over and over.  Staring at myself in the mirror, pregnant belly and all, asking myself out loud “what are we going to do?  why is this happening?”  while pounding my fists against the wall.

I remember how much fun you were having in the hospital.  Running from floor to floor, wearing a pink tutu, eating 3 hamburgers a day, holding court while surrounded by your family, friends and favourite people in the world.  I remember how hard I laughed when you started to cry and tantrum when it was time to leave the hospital.  “I don’t want to go home!”  “I want to stay in this hospital!”  It was the first time I had laughed in days.

When I look back on the horror of that day, four years later, I am amazed that we lived to tell about it.  Human survival is an amazing thing.  That, the army of people that joined forces to lift us up and hold us where we needed to be to make it through each day, and of course – you.

Last week, as I sat in the 3rd row at your mama’s graduation, I was overcome with emotion.  There I sat, for over an hour as I waited for the ceremony to start, in a fountain of tears.  Flashes of June 24th, ran through my mind and I my thoughts were filled with the weight and enormity of what your mama had to overcome to be there.  Standing in a graduation gown, holding her diploma – a funeral director, because of you.  You would be so proud of how she has chosen to live the rest of her life honouring you and what you’ve taught all of us.

Stella – because of you, we are still here.  In so many extraordinary ways, you’re still here too, tethered tightly to us.

We love you big girl – on this day and every day.

Love,

Mommy

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Stella the day after she was released from hospital

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Sam & Hugo, Stella’s greatest legacy:

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Second is Worse than First

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Last year around this time, I connected with a family whose daughter had also died of DIPG, only 4 years earlier than Stella.  I remember that the father held my arm as we spoke words and feelings that are part of a common language of experience that the outside world doesn’t understand, and told me earnestly that the second year after your child dies is worst than the first, and then the third is even worse than that.  I wasn’t quite sure what he meant at the time, but I think I’m starting to figure it out.

 

The thing is, the world around you keeps moving and growing and changing, and so do you, but all these changes and all this time takes you further and farther away from your child.  It gets harder and harder to close your eyes and see their face, or remember the exact way their forehead smelled, or the precise pitter-patter noise that their feet made as they ran down the hallway.

 

And it’s harder because as time passes it’s supposed to get easier.  You’re supposed to feel better, to hurt less.  You’re meant to get up and get on with your life.  And I think most bereaved parents do.  But there is a false belief that the longer it’s been since your child died, the easier it gets.  For me, so far, the truth is, the longer it’s been since Stella died the more “good” days I have, but it doesn’t mean I don’t still have bad days, bad weeks, bad months.  And when those bad times come, they are just as difficult and devastating 3 years later as they were in the moment.

 

This revelation became abundantly clear to me two weeks ago when [my nephew] Xavier had a minor day surgery for a thyroid cyst he developed in utero.  Although the surgery went well, the medical team, unexpectedly, decided to keep him in the hospital overnight.  I wanted to go visit, to support Heather and Daniel and check on the little guy, so I offered to bring them a few things they might need for their overnight stay.  After a quick packing of a small bag, I headed down to the hospital.

 

I knew I was in trouble the moment I walked in.  I had entered through a back door and ended up on the far side of Sick Kids Hospital.  It was the food court area.  Immediately, I broke into a sweat.  Somehow I had blocked out that I would be going to the very hospital that Stella got her horrible DIPG diagnosis in.  I saw the restaurant I remember my dad getting soup at and trying to convince me to eat, as over the course of three days he watched me shrivel into a shell of my former being.  As I continued walking through the hospital, my head began to spin.  It all looked the same as those first few horrible days of June 2011 when I wandered these halls, trying desperately to feel firm ground under my feet.  Sometimes I couldn’t even sense my own eyes blinking as I was walked through the nightmare from which I couldn’t wake.  Retracing the same steps I took back then, I passed the low, dark hallway with “MRI” written above the doorway and felt my veins go cold as I relived the last few hours of Aimee and my innocence about how cruel the world can be.  I remembered taking Stella down that MRI hallway, completely oblivious to what was going to happen next.  I saw the gift shop Aimee and I bought Stella a stuffed Dora doll in while we waited in Emerge, completely ignorant to the horrors that were about to unfold.  I saw the Starbucks where I spent an absolute fortune on food and drinks after Stella’s diagnosis.  I saw the front doors of the hospital that I walked out of for air after she was diagnosed.  I gulped and gasped the hot, smoggy summer air, willing myself to just breathe as my heart shattered into a million pieces.  Everything looked the same in the hospital; the sights and smells were so triggering that I thought I might faint.  I texted Heather to find out where in the hospital they were.  5D, she reported nonchalantly.  And then, I really did have to sit down.  Because with Stella they put us in 5G, which was the wing directly across the hallway from where Heather was.  I would have to go back.  Back to *there*.  I almost ran away at that moment, I really did.  I had to breathe deeply and force my wooden legs to keep taking steps towards the elevator.  I got off at the 5th floor and the first thing I saw was the bench I sat on at 3am that second night after diagnosis.  I curled up on the cold, green vinyl bench, wrapped myself up in my big gypsy-style skirt and sobbed until my head throbbed.  I scratched at my arms and rocked back and forth as Stella slept peacefully in the ward, and I grabbed onto the wire walls that look onto the atrium and wished I could pull them out so I could jump off the floor and out of this life that hurt so much I couldn’t even breathe.  I remembered all these things as I headed to Xavier’s room and wondered anew at how random life can be sometimes.

 

Once I got into the room and saw Heather and Daniel and Xavier, I felt a bit better, but everything was still triggering.  Even Xavier who is about the same age and size as Stella when she was there, with his head full of curls and wearing the Sick Kids white pyjamas, made me relive so many things I’ve worked hard to forget.  I was glad to leave Sick Kids, but it was a fresh reminder of how fragile this mental peace is that I have at the moment.

 

After my visit to Sick Kids, I had a rough couple of weeks.  Trouble sleeping as my mind tortured me with flashbacks.  Trouble focusing at school.  Overwhelming stress at the amount of things I have to get done before this semester finished (assignments, tests, exams, etc.).  Feelings of parental inadequacy.  Not wanting to see anyone socially who has children around Stella’s age.  Feeling overwhelmed at the needs of our two young kids.  All these things would be considered “normal” if I was newly bereaved, but almost 3 years post-diagnosis and 17-months post Stella’s death, it was unexpected for me as well as my friends and family.  I was even embarrassed to write about it here, on this blog that I’ve been so open and raw in for so long, because I didn’t want to disappoint any readers out there that are happy and content to know that Aimee and I are happy and content.

 

I concluded that it’s harder the second year than the first because by the second year you have, generally, had some “good times”.  You’ve probably laughed a little, woken up a few mornings and felt ordinary as opposed to like you’re being stabbed in the chest.  You’ve started eating again and doing “normal” things like showering on a regular basis and cooking.  And other people see you functioning in society again, and acting like yourself, and they breathe a sigh or relief because they know you’re going to be okay and that you’re still you, and you’re not a total basket case anymore.  You can actually see and feel the relief those around you have when they perceive that you’re doing okay, “You’re so strong,” they say with admiration.  When Stella first died, or when Stella was sick, people expected Aimee and I to be sad.  They expected us to cry at strange moments, to not be able to get out of bed some days.  They brought food and didn’t mind when we cancelled things at the last moment, “their daughter has cancer…she’s going to die” they would whisper to each other.  There was a universal understanding. It was like a “get out of jail” free card.  But now there are new expectations on us, new standards.  We are normal now.  We have assimilated back into their world.

 

Except nothing is really normal.

 

The second year is harder because when you start to feel like shit again, you don’t feel like you have the right anymore.  Instead of overwhelming support and sympathy, you get wariness and sighs. And you feel guilty for letting everyone down.   For the most part it looks as though Aimee and I have returned to the status quo.  I am in school, Aimee is working, Sam and Hugo have daycare during the week, swimming and soccer on weekends.  We cook dinner, go to the park, read magazines about the love lives of Brad and Angelina.  But the trade-off for these periods of normalcy is that when things aren’t going well— when the sadness and anger and grief bubbles its way to the surface again, there is a certain shame or discomfort that comes with it.  “I thought you were doing fine” people say, people think.

 

I say.  I think.

 

The second year is harder because there is no illusions, no fog, no shock to cushion the horrible truth that Stella is gone forever from me.

 

But that’s okay.  It’s okay to have bad and sad days.  It’s okay to realize that even with the absolutely fantastic and happy times, there is a measure of sadness.  It’s okay to give myself permission to move backwards in my grief, even if other people don’t understand why.

 

Being happy doesn’t mean that everything is perfect.  Being happy means looking beyond imperfections and believing that each day is worth living, whether you laugh or cry.

 

 “We learn something from everyone who passes through our lives.. Some lessons are painful, some are painless.. but, all are priceless.”

Xavier rests with his daddy after surgery (he’s going great now!):

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Hugo isn’t afraid to get his feet wet…

IMG_6620Sam enjoys weekly breakfast at “The Restaurant” (Tim Horton’s) with Poppa:

IMG_6636Saturday morning breakfast:

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Stella…5 weeks old:

Month 2a

 

 

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Music To My Ears

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Parents whose children have died have to think about and overcome small daily struggles that other people never have to think about, or even pretend to understand.

For example, when I go on the Toronto Community Centre websites to register the boys up for swimming, I need to select from a drop-down list the child that I’m trying to sign up.  Next to Stella’s name is a note that says Stella Bruner-Methven: INACTIVE.  I asked them if they could just remove her name from the list, but they’re insistent that they can’t (which is total bullshit but you try getting someone who works for the City of Toronto to listen to you), so now each time I’m on the system I have to scroll past my daughter’s name and that horrible note until I get to Sam or Hugo’s name.  It makes my eyes prickle with tears every single time.  She is not “INACTIVE”  I bluster to myself.  She is DEAD.

And when I called the Canada Revenue Agency just after Stella died to tell them of her death so that they would stop sending the $100/month “baby bonus” you get here in Canada for each child, they advised me sternly that I owed them $100.  Why?  Because the October baby bonus for Stella had already been deposited into my account, but she died October 22nd, before the end of the month.  So I shouldn’t have gotten that $100 for October and needed to give it back.  “If she had lived to October 31st, you could have kept it,” the woman on the phone helpfully explained to me.  “Oh, and you will also see a reduction in your GST cheques because you’re going from 3 children to 2”.  Thanks, Canadian Government.

In the last two months we have gotten phone calls from daycares that we put Stella’s name on the lists for years ago.  Once in awhile, we still get chirpy messages saying, “This is Dandelion Daycare.  We just wanted to let you know that we have a spot for Stella.  Please call us to let us know if she is able to start on Monday March 25th…”  Aimee is the one who always calls back.  In case there was any doubt, she is a much nicer person than me.  She always just politely says that we are no longer in need of the spot, and leaves it at that.  If I were to call back I would tell them why.  I would say, “You can take us off your list because Stella DIED last year”.  I would want to shock them, to jolt them out of their sleepiness about the harsh reality of life and the fact that the little girl I hopefully and excitedly put on their stupid lists 4 years ago is gone now.  I want them to whisper about it in the staff room, and think about it and want to know more about the little girl that could have been there, but isn’t.  However, I am well aware it’s mean and pointless and petty, so I let Aimee make the calls.

Each birthday party invitation for Aimee and I needs to be weighed and measured and discussed for days as we lay in the bed our daughter died in.  Who is it for?  How old are they turning?  What types of feelings does the party bring up?  Jealousy? Anger? Sadness? Bitterness? Joy? Hope? Celebration?  We bat words back and forth like a tennis ball until we come to a decision about it.  We always have good intentions, but sometimes we just can’t take the final steps out the door and go to the party we had RSVPd for.

A dash to the supermarket for milk becomes an exercise in grief as I hurry past the inviting piles of green avocados that Stella used to shop with me for.  A trip to the attic to bring down an extra blanket fills my heart with heaviness as I see the line of boxes in the corner neatly labeled “Stella’s Room”, “Stella’s Memory Box”, “Stella’s Funeral”.  A walk to the library past giggling 5-year old girls in pink jackets and jaunty winter hats makes my chest burn.  You go on living your life, even loving your life, but the grief is always there, just beneath the surface, ready to burst through at any moment with its heavy, hot lava of pain.

Even happy moments have a twist of sadness to them.  Aimee had always fantasized about Stella joining soccer, but she never got the chance.  She was supposed to join up in the fall, but was diagnosed at the beginning of summer and by fall she couldn’t walk anymore.  So, this time, as soon as Sam and Hugo were old enough, we signed them up.  Even though it’s expensive and they are really still babies, we have waited a long time to see one of our kids in a soccer shirt so we love taking them.  You should see Sam and Hugo and Xavier all running around a gym in these tiny soccer uniforms… it’s just about the cutest thing ever!  No matter that most of the time it’s like herding cats trying to get them to do anything they’re supposed to, it is a joy to watch and experience.  But it’s sad too, of course, because we are all thinking about Stella and how she should have been there too.

After soccer yesterday, Aimee and I took the boys home and Gracie was with us as well while Auntie Angie volunteered with Baby Stephanie (she is going to write an update about baby Stephanie for you all soon!!!).  The three kids literally destroyed our house playing in it.  I’m surprised no one broke a bone they were so energized and excited.  They adore each other, and it’s fun to see them playing together even though my throat is in my heart most of the time as they leap from high heights and careen screaming through the halls narrowly missing furniture corners as they run by.

After Gracie went home and dinner was over, Aimee took the boys downstairs so I could make a weak attempt to put the house back together after a long weekend of chaos and activity.  I thought rather grumpily about how pointless it is to have nice things when you have young children.  The house we had painted a year ago is already in need of painting again— there are scuff marks and chips and dirt and crayon marks all over the place.  The nicely recovered couch is used daily by the boys as a trampoline.  They throw pillows on the ground and drool and pee and spread crumbs all over it.  Dishes from our matching set have been broken.  The tiny iron angel we got from Aimee’s Nana’s house when she died had its wing broken off on Friday when Sam threw it.  Photographs in frames are knocked over constantly.  We have about 6 broken frames laying around waiting to be repaired.  There are dried cheerios in the sink, piles of laundry that we just can’t seem to get under control and a fridge that could be a science experiment.  There is stuff everywhere.  It’s overwhelming.  It’s not that I need things to be pristine or totally clean and organized, but it’s also disheartening to constantly be putting a million tiny pieces of toys away only to have the bins dumped back out moments later and toys strewn around in every crack and crevice within seconds.  So, I took a deep breath and started to tidy up a bit, just enough so I felt like I had a tiny bit of control over my environment.

After picking up by hand tiny grains of rice from between the floorboards and stacking books on top of more books in the living room, I stood at the sink washing pots.  As the warm soapy water poured over my hands and I sighed thinking about ll the work left to do, I heard Aimee singing loudly in the basement.  I cocked my head slightly to the side to see if I was hearing what I thought I did.  And I smiled.

Aimee was playing guitar for Sam and Hugo.

She used to play guitar for Stella all the time, and so did our friend Brad, but since Stella died there has mostly been silence where the music used to be.  It was too sad to hear her favourite songs and remember her crooked smile and the way she danced with her arms waving and head bobbing.  I put the pot down, wiped my hands on the tea towel and headed downstairs.  As I walked into the basement, I saw Aimee standing in front of the boys with her guitar strumming and making up words to a silly song while they danced.  Sam strummed Stella’s old ukulele and Hugo was going between a maraca and bells, shaking and shimmying.  They both danced comical little dances, rocking their hips back and forth.  I laughed out loud to see how alive and happy my family was.  I grabbed the camera and tried to capture the moment, but it wasn’t really possible.  Photographs are amazing for certain things, but I’m not convinced they can fully capture off-the-cuff moments of silliness and love.  After a couple of shots, I put the camera down and joined my family.  We danced and played music until past the boys bedtime.

The dishes would wait until later.  The laundry would wait until later.  The music was here, and it was making me laugh and making my heart sing.  And Stella’s watchful eyes from the photograph on the wall, twinkled down at us.  I realized that my life is not perfect, and never will be.  But it is mine and I treasure it.

As I picked up Hugo and spun him in a twirl with me, I remembered one of my favourite sayings about how if you did not know true sorrow, you would not recognize true joy.  So while I would never go so far as to say I am grateful for Stella’s death, I am grateful for her life.  And I am lucky to have experienced gut-wrenching, terrible pain and sadness because now, when the music is happening, I can hear it clearly.

Last Night’s Impromptu Dance Party:

IMG_0886Hugo Beckham plays soccer:

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Gracie and Sam playing some odd game they invented that required face masks:

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Hugging brothers:

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Colouring Brothers:

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Winter trip to Jungle Cat World (photos by Kenneth Tinnish):

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To My Big Girl (by: Aimee Bruner)

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Dear Stella,

 

It’s been a year since you left this world draped in your mommies arms.  A year since we looked down at the porcelain shell your tiny body had become.  Our hearts breaking into a million pieces onto the big girl bed that had become your home in the weeks that you clung to life, slowly easing us into what would be the darkest days we had ever known.  I will never forget the shallow rhythm of your breath as it faded further away from us and I will always remember what it felt like to reach out in the middle of the night to hold your little bicep in the palm of my hand.

 

The truth is, Stella, I want you back.  I want to hold you in my arms and feel the weight of your head on my shoulder and the back of your knees draped over my right arm.  I miss sitting in a heap on the couch with you and trying all day to make you laugh.  I miss taking you to swimming classes on the weekend and I miss the way it felt to watch you run towards me with your arms stretched out when I picked you up from daycare.  I miss your voice and your ridiculous sense of humour.  I miss the way you used to laugh at us when we tried to give you a time out – not only did you laugh at us, you took the wind right out of our sails and actually asked to have time outs!

 

I want you to know what an incredible mark you’ve left on this earth.  In your short life, you’ve transformed people to the core.  I want you to know how proud your mama and I always were, and still are, of you.  There has never been a kid as cool as you.  Ever. That’s the truth.

 

I miss watching you play in the living room after daycare carting around a little Tupperware filled with mini cheese flavor rice cakes.  The evidence that they were your favourite was all over your orange little face.  I miss the hair bands that you used to wear, curls spilling over the top of them.  I now wear them on my wrist from time to time because it makes me feel closer to you.  I miss the sound of your cackle and the sight of your smile that seemed to stretch to the ends of the earth.  I miss watching you play with Gracie and I’m so grateful that you were able to get to know, love and bully your brothers and cousin Xavier, even if it was only for a short while.

 

My heart hurts a little more than it usually does today and I feel like there’s a bowling ball in my chest.  As your mama and I sit on your couch today, surrounded by Pink Kitty, “Fred”, Carrot and the sound of the Golden Girls in the background – we will think of the incredible life that we created and lost.  We will eat Tim Bits, bagels and cream cheese and vanilla ice cream.  We will laugh and cry our hearts out.  We will remember you.

 

We will always remember you.

 

I love you with all of my being.  You’re my big girl.

 

Mommyxoxo

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TFK Play House

When we were three:IMG_0109

 Stella and Sam:

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Stella and Hugo:

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Shouting at the world:

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Obituary

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BRUNER-METHVEN, Stella Joy

 

 Stella Joy left this world on October 22, 2012 in exactly the same way as she entered it—completely surrounded by a circle of love created by the people who meant the most to her.

 

Stella will be forever missed and forever remembered by her parents, Aimee Bruner and Michelle Methven, as well as her brothers Samson (born October 2011) and Hugo (born August 2012).

 

Stella’s family feels so lucky to have had her for the last three years; she touched the hearts of her best friend and cousin, Gracie Bruner-Gonsalves as well as her Auntie Angie (Andrea Bruner), Auntie Juju (Julia Gonsalves), Auntie Heather (Heather Methven), Uncle Daniel (Daniel Pellett), cousin Xavier Methven-Pellett, Auntie Nicole (Nicole Young) and Uncle Tristan (Tristan Mohr).

 

Stella was blessed to have wonderful grandparents who spoiled her with love each day of her life; Poppa (Noel Methven), DeeDee (Margaret Mohr), Grand-Pa (John Bruner), Nanny (Sandra Young) and Tutu (Marilyn Emery).

 

Other special people in Stella’s life were Frank & Arlene Steger, Jen Caldwell & Brad Needham, Grace James, Natasha Watt, the wonderful staff at Childspace 3 / Metamorphosis Daycares, DPT’s of Fall 2007 and her #3191 donor siblings (Holden, Olivia and Rosie).  A special message of thanks to Stella’s care team including her palliative care doctors Dr. Kevin Bezanson and Dr. Parween Brar, who are not only superb Doctors, but also incredible human beings, our palliative “dream-team” of An Warnick and Em Hopkins and Stella’s nurse Chris Velem, who brought much appreciated humour and warmth to our home.

 

Stella will be missed terribly by all her special friends (and their parents), especially her best friends Arin Akintan-Carter and Flora HayDraude, as well as her other buddies: Tobin, Aurora, Cedar, Ava, Declan, Lark, Nate, William, Eamon, Alice, Evie, Ayokari, Sky, Violet, Winter, Hugh, Zev and Maya.  As these children grow up, it is our fondest wish that Stella’s spirit stays alive in their smiles.

 

Stella’s love, light, infectious laugh and huge heart will continue to guide and inspire all those whose lives she touched.  Her time on this Earth was short, but her impact was huge and we will be forever thankful to have been blessed with our redheaded “force to be reckoned with”.  She is forever woven into the lives of so many people, and we know she will continue to inspire us from afar.  To learn more about Stella and her journey, visit www.stellabrunermethven.com

 

In lieu of flowers, please consider making a donation to the Max and Beatrice Wolfe Children’s Centre (Choose Max and Beatrice Wolfe Children’s Centre from the dropdown box) or Camp Oochigeas for Children with Cancer.

 

A private funeral for family and friends will be held next week, followed by a public Celebration of Stella’s Life which will take place November 10th at 6:00pm outdoors in Riverdale Park West (just outside the gates of Riverdale Farm), rain or shine. You are invited to bring yourselves and your children, and come remember this special girl with us.  BYOT (Bring Your Own Timbits)!

 

The light of a distant star continues to reach the Earth long after the star itself is gone.


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