Hope and Bicycles (By: Aimee Bruner)

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By: Aimee Bruner

It’s hard to have hope when one of the top doctors at a world renowned hospital looks you in the eye and tells you that your daughter has an inoperable tumour, for which there is no treatment proven to be effective, wrapped around her brain stem, that she likely has between 3-6 months to live and that during this time, she will lose her faculties one by one.

For Mishi and I, there was no hope for the life that we had planned for our little girl.  There was no hope that we would get to watch her walk through the doors of kindergarten, dragging a backpack bigger than her, for the first time.  There was no hope for soccer practice, summer camp, growing up with her best friend and big cousin Gracie by her side, playing with her cousin Xavier or bullying her baby brothers.  Very early on, Mishi and I needed to muster up the strength and energy that we would have poured into hope itself and transform it into our new mission in life:  happiness and comfort for Stella.

It was through embarking on this mission that we learned to find hope even when it was hiding in places we never thought to look.

When Stella lost her ability to speak and Mishi and I were desperately clinging to any form of communication that DIPG had not yet stripped away, Stella learned to stick out her tongue to communicate the word “yes”.  And there it was, staring us right in the face – hope.  Not hope for the future that we would never get to have with her, but hope that she would be heard even when her voice was stolen.

In the face of slowly watching our daughter die, Mishi and I were lucky enough to bring two incredible boys into the world.  Sam, with his gentle spirit and sensitive soul and Hugo, the sweet sweet boy we would never know if it weren’t for Stella and the horrible hand the universe dealt her.  There it was again – hope.

Last weekend, I was lucky enough to take part in the Tour for Kids Ontario bike ride.  Just like we did last year, Stella’s Auntie Jula and I geared up and formed Team Stella’s Stars.  We rode more than 400km over 4 days in honour of Stella and to help raise much needed funds for the three oncology camps in Ontario – Camp Oochigeas (where I am lucky enough to work), Camp Trillium and Camp Quality.  Doing the ride for the second time around was a bit easier because we knew what to expect.  That being said, when my dad arrived at my house at 5:00a.m. to take Julia and I to the start line (thanks daddy!), I had barely slept the night before.  Aside from not being packed early enough, I couldn’t sleep.  So, after only 2 1/2  hours of shut eye, off I went to join 500 other riders for 4 days of fun, compassion, heart-ache, physical torture and the very best of humanity.  As we wound up the road leading to the start line at Caledon Ski Club, my heart was racing.  I was cold and nervous.  As we drove through the gates, we were met by rows of Ambassador boards.  Photos and stories of incredible kids lined the way and there was my Stella, the first board in line.  Front and center.  My heart filled with joy but I could feel the heavy weight of the fact that my kids face was on a board because she had cancer and she died.  As my eyes began to brim with tears, I noticed who was sitting right next to her.  Adam Fedosoff— the boy I never knew who inspired me to believe in myself enough to buy a bike, train and ride in honour of my Stella.  Adam – sitting up tall on his bike like the champion that he is and Stella, with her curls glimmering in the sun.  There they were, sitting, waiting for me.

Stella and Adam

Hope.

One of the amazing things about this ride is how instantly bonded you become to complete strangers and people you barely know.  After all, you spend over 6 hours a day riding beside, in front and behind one another.  Julia and I had the complete honour of riding with the bereaved parents of an incredible girl whose spirit, energy and love was too big for this universe.  On day one of the ride, her father said to me “I didn’t think she would die.  I had hope.  She was in remission.  I had hope.  And then it all went to hell so quickly.”  Instantly, I felt trapped underneath the sadness I had for what he, his wife and his kids had to endure.  For a moment, I couldn’t speak.   Calm and stoic, he kept riding and the few minutes of silence that followed soon felt right.  A few hours later, after climbing countless hills and barely half way to our final destination, I looked ahead to see him, this man who watched his daughter die, pedaling away, music blaring from speakers he had rigged to his bike, tapping his hands and toes to the beat.

Stella and Tamara

Hope.

Before and after each day of cycling, there was a dedication.  Family members, parents and kids got up to speak about their experience with cancer.  At the start line, we listened to a father fight back tears as he spoke about how long and hard his daughter suffered from cancer before she died.  Although you could feel how decimated this experience has left his soul, he also exuded the drive, energy and grit that it takes to call people to action.  And that’s what he did.  He ended his speech by shouting “Cancer – you’re a coward and we’re coming for you.”

Hope.

My amazing colleague spoke the next morning about the loss of her baby brother and her experience with Camp Oochigeas.  You could hear a pin drop when she spoke about remembering his smile.  Describing this incredible little boy, she was overcome with emotion and tears.  As she struggled to compose herself, a bereaved mom walked up, put her arm around her and stood by her side for the rest of her speech.

Hope.

That same mom bravely spoke about the loss of her kind, strong, athletic teenaged daughter as photos of her in the hospital flipped across the screen at the front.  She and her husband take a week out of their lives every year to volunteer at Tour for Kids.   They make 600 sandwiches, load trucks, serve food at rest stops, patrol the roads, stack chairs, set up tables.  And they come back and do it all over again the next year.  This amazing mom recently bought a bike and has her sights set on riding next year.

Hope.

On day three, as I rode behind a man who was on his final round of chemo and watched as he pulled over to the side of the road and got down on his knees until the wave of nausea had passed, I realized that there was hope all around me.  After a few minutes, he got back on his bike, put his head down and climbed up the hill.

Hope.

On the last night of the ride, a father spoke about his 7 year-old daughter who has a brain tumour.  When I watched this little girl hold her mother’s hand as her legs wobbled and her arms shook as she struggled to get up the stairs to join her dad on stage, I instantly felt sick.  My stomach turned and my chest was crushed under the memory of Stella struggling to walk while her arms shook out of control.  There I was, sitting under a tent surrounded by 500 people, crying my eyes out.  The tears were unstoppable.  What a beautiful family they were.  Her father spoke with absolute grace.  I couldn’t take my eyes off this girl.  A little girl who was smiling from ear to ear, as a monster sits inside her head.  Just when I was getting worried that I wouldn’t be able to compose myself to remain in my seat, a campfire sing song started, lead by my incredible colleagues at Ooch.  There really is nothing like a campfire song lead by Alex Robertson.  The campfire closed with the goodnight song that Camp Trillium closes every campfire with.  Under a tent packed with hand clappers and loud voices – there she was.   This 7 year-old wonder, wobbly legs and all, singing her heart out into the microphone.  She knew every word and in between each verse, she let out a huge cackle.

Hope.

Each day of the ride brought something different.  The one thing that was so familiar though was the calm and beautiful energy of my beloved sister-in-law.  I really can’t imagine doing this ride with anyone else but her.  It’s precious time we have together and these 4 days out of every year are unlike any other to me.  It’s also so fitting that Julia is by my side during this ride (who area we kidding – she’s way ahead of me!) because Stella adored her in a way that was completely unique to other people.  Julia’s ability to be present with Stella and give her all the time in the world was such a gift to Stella and to us.  Now, when you do a 400km ride over the course of 4 days, you’re bound to run into at least 20 huge hills a day.  True to form, Julia’s calm energy would explode at the base of each hill as she gained the momentum she claimed to need in order to make it up the hill without falling over.  She would power past everyone saying “sorry, just gotta pass on your left” in the most gentle way possible as she attacked the hill.  People would either say “who is that?!” or “here she goes”.  It made me laugh every time and as I watched her move off into the distance, I could always see Stella’s beautiful face on her back.

Hope.

Backs

Jackets

On the last day of the ride, I had a little extra adrenaline with the thought of  the finish line in sight and seeing my family.  Hanging out at the back of the pack, waiting for the last group to start (that was us), I was bent over laughing my head off at a mother who lost her amazing daughter to cancer just over a year ago.  A mother whose daughter was stolen from her right in front of her eyes.  Cancer took the hope that she and her husband had and stripped it away as they watched their youngest daughter die.  And there she was – dancing her heart out.  She didn’t care who was watching.  With the music blaring, surrounded by 500 people and their bikes – she danced her heart out.  Just like her daughter did.

Hope.

The last 10km of this ride are usually very emotional for me.  I’m overcome with bursts of energy and tears.  As we climbed up the winding hills around the corner from the finish line, my heart started to beat faster than it had over the past 4 days.  I could hear people cheering and I new we were close.  One last turn and there we were – climbing our final hill.  True to form – Julia lead the way and I followed, chasing Stella’s face all the way up the hill.  And there they were.  Lining the road – my beautiful family and friends.

Hope.

Once again, Julia and I were lucky enough to have the honour of riding on day 4 with a friend who, despite having the ability to ride over 200km plus a day, pushing over 35km/hr, chose to ride with us.  Just like she did last year, she made sure that we got across the finish line in once piece, while honouring our girl at the same time (thanks Pearlman!).  Before we rode our last 100m, we stopped and unraveled the old green “We Miss You Stella!” banner from last year.  Just like last year, Julia and I wobbled back and forth, almost slamming into one another and crashing to the ground and just when we needed it, our trusty cyclist buddy swooped in to help carry the banner.  As we rolled towards the smiling faces holding medals and giving hugs, a little voice echoed inside my soul – “We did it.”  We did it Stella.

 Stella Banner

“There are defining moments in a life – when faced with the choice of giving up or going on.” 

Hope.

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Toast the Eggnog

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Toast the Eggnog

 

I just finished my final exams for first semester back at school.  Whew!

 

Even though this is what I wanted to do, it was a tough slog this semester.  Going back to school with a 2 year old and a 1 year old doesn’t exactly lend itself to the self-indulgence required to focus on your studies.  Despite the fact that Aimee and our families are HUGELY supportive and wonderful, the day-to-day workings of a life with two toddlers are not exactly conducive to studying.  Since school started in September, we’ve:

 

  • Been to Sick Kids Hospital 3 times (1x Sam, 2xHugo)
  • Had 1 incidence of impetigo (Sam)
  • Had 1 confirmed ear infection (Hugo)
  • Had 6 incidences of stomach flu (Sam, Hugo, Mishi, Sam, Hugo, Hugo)
  • Had 1 bronchial infection (Mishi)
  • Had 8 colds (Mishi, Mishi, Hugo, Mishi, Hugo, Sam, Mishi, Mishi)
  • Had 1 sinus infection (Aimee)

 

In between I’ve been to hundreds of hours of classes, written 14 tests, 8 exams, 2 lab reports, 1 assignment and attended 2 Embalmings and 1 career fair.

 

Finding time to study has been difficult, to say the least.  But Aimee’s motto is, “We can do anything.  We’ve already done the hardest thing ever”.  And she’s right.  So we got through it.  WE as in me and my entire family.  I’ve never been so grateful for a break as I am now.  Three weeks off.  Whew.  And I’m doing it.  I can’t believe it.  I’ve wanted to go to school full-time since I was 20 years old.  It took 14 years, but I’m a full time student.  Amazing!

 

Now with school over until January, I’ve raised my head from the books, my butt from the desk and begun to look around again.  Suddenly…Christmas is almost here!

 

I can’t believe this is our second Christmas without Stella.  Since Stella’s diagnosis, we struggled with Christmas.  We first tried to do “Christmas Light” for Stella’s last Christmas.  Last year we also didn’t feel like celebrating whole-heartedly.  This year, though Aimee and I haven’t really talked about it or made any major decisions, it seems to have crept back in.  There is a tree in the corner.  Not the corner we put it in when Stella had DIPG (then we put it right next to the couch so she could see it), the old corner from when we were young and ignorant.  There are three stockings hung by the chimney with care (Stella, Sam, Hugo).  There are silver garlands on the mantle, a snowman candle on the table and candy canes in the cutlery drawer.

 

There is also a lineup of Santa photos on the living room hutch.  The first is Stella at 8 months in 2009, smiling happily and they continue through each year until the most recent one, taken just 2 weeks ago, where Sam sits on Santa’s knee with his face painted like Spiderman and Hugo is looking half-asleep (because he was sick and feverish that day).  It’s an interesting mix of photos.  Stella with Santa in 2009.  Stella with Santa in 2010.  Stella in 2011 (after diagnosis), and a serperate one of Sam and Santa from 2011, Sam and Hugo in 2012 and Sam and Hugo again in 2013.  Old life.  New life.  Crossover.

 

The tree is the same, a collision of old and new.  Picture of Stella in a “1st Christams” ornament, family ornaments with just Aimee and I (2008), Aimee, Mishi Stella (2009), Aimee, Mishi, Stella, Sam (2011) and in 2012, an ornament that says Aimee, Mishi, Sam, Hugo and Stella— but Stella’s name surrounded by angel wings, to show that she died.  Dora ornaments from when Stella was alive, mixed with an ice cream cone ornament my mom gave us after she died.  It’s still so crazy to try to separate “then” and “now”.

 

But, overall, like everything else in life, Christmas has snuck back into our lives.  The same, but different.  A little less magical and sparkly.  Less presents.  Less fuss.  Less agreement from Aimee and I to run around like crazy trying to see everyone.  But it’s still here.  Everything looks and feels different, but Christmas is still around us with its cookies and photo holiday cards from friends and Christmas lights.

 

Another Christmas without Stella.  A whole year since the last one.  I can’t believe how big the boys are getting.  Sam is almost 26 months old now and talking up a storm.  He is so different from Stella.  He is super cuddly and affectionate.  He is sensitive and says things like, “Mama, I cold!” before snuggling into my lap with a blanket and a bowl of crackers.  He gives Hugo a hug in the morning, totally without prompting and if you get mad at him he responds by bursting into tears (whereas Stella would often laugh in your face and run away).  He loves Toy Story and singing Jingle Bells and idolizes Gracie, just like Stella did. Hugo’s personality has started to slip out as well.  At 16 months old, he has proven himself an easy-going and cheerful child.  He plays quietly by himself a lot, and when he doesn’t get his own way has these tiny melt-downs where he stomps his feet, but they are so fleeting that even he doesn’t seem to remember that he was mad a moment ago.  He reminds most of us of my dad.  He loves balls and trucks and follows his cousin Xavier around (Zay-zay as Stella and all the boys call him), and doesn’t care if the bigger kids steal toys from him.

 

Both our sons know Stella.  Sam calls her his sister, and if you ask him about his family he says Hugo is his brother and Stella is his sister.  Whenever someone says Stella’s name, he looks at them solemnly and says, “Stella die.  Her body no work ‘nymore”.  For a few weeks he was saying, “Stella pie”, so this is actually an improvement.  Hugo and Sam each end their evenings by kissing the paintings we have of Stella (each by a blog reader) in their rooms.  She is still a presence in our lives, even though she is not here.

 

My friend Sheri sent me an article a couple of weeks ago that a woman wrote who had a stillbirth.  It was a conversation she was having with her almost-grown-up children, and it’s similar to the type of conversation we will have with our boys one day.  A conversation where they learn that our family is only the way it is because one child died.  A conversation where they try to understand how things could have been so different, but aren’t.  The article ends by saying that things can’t be any different than the way they are, because that’s just the way things worked out.  It’s the same for us, I guess.  I will never stop mourning Stella, but it won’t stop me from celebrating the life we do have and appreciating all the positive things we experience in our daily lives.  It’s not so much about moving on, it’s just about living life in honour of her.

 

I find myself trying not to be sad right now.  I avoid looking at the videos we have  because the loss is still so great and hurts so much.  Seeing her so alive on screen makes me ache from the inside out.  So I don’t do it.  I try not to look at little girls dresses and shoes when I’m out shopping.  I am growing a shell to defend myself.  I still bleed, I still feel the pain of our loss, but I am protecting myself more and making a concerted effort to focus on the positive.  Not because I want to forget how much losing Stella means,not because I don’t believe that I can still be sad and withdrawn if I want to, but because I am choosing to hear the Silver Bells, believe in Santa and sing all dozen verses of 12 Days of Christmas.

 

Because that’s what Stella would have done.

Gracie and GrandPa put the star on our tree:

IMG_0515Hugo and Sam clowning around with Auntie Heather:

IMG_0488Sam and Hugo, morning hug:

IMG_5656Little Elf:

IMG_5619Santa photo, 2013:

873xmas-022Letter Gracie sent us in the mail:

IMG_5698Stella…December 13, 2011:

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The unmistakeable chill in the air is a sure sign that Fall is coming yet again.  Fall. the season of leaves changing, shorter days and longer nights, first day of school, cooler temperatures.  And, of course, the season in which Stella died.

Both Aimee and I are having similar experiences where we are incredibly triggered by the cooler weather.  There are some parts of our lives that are vague, almost forgotten (I can’t remember my birthdays from ages 20-24 at all), but the days and weeks that lead up to Stella’s death are as crisp and clear as ever.  Even on the days that we would rather forget, we remember.

We remember.

We remember everything.  How as the trees began to drop their brightly coloured leaves, Stella started to fade as well.  How the last trip we made with her was apple picking with Arin’s family.  The last place she was taken before slipping into the sleep she wouldn’t wake up from was Dairy Queen.  We remember the clothing that she wore those last few weeks, the foods that we ate, the television shows that we laughed through.  Aimee and I are watching the calendar.  Watching as the dates pass and that ominous day– that October 22nd date— draws every nearer.  That date that I spent 16 months wondering about.  When will it be?  How will it be?  Now I know, and the knowledge is worse than the wondering.

 

But as we have learned to do, Aimee and I cannot stop living our lives.  How often have I wished I could just pull the covers over my head and shut out the world.  But I can’t stay in bed because there are two little boys who need me to get up and smile at them and feed them and kiss their “boo-boo’s”.  I have to get up each day because that’s what Stella did.  Even when she could do no more than make seal-like noises to wake me up in the morning and swat wildly with her one arm, she got up.  And we lived.  Even if it was 15 hours on the couch, we filled the days.  Aimee and I often laugh about how we never thought we would miss the times when we spent all day on the couch watching Dora the Explorer and the Golden Girls, slowly feeding Stella mouthfuls of porridge.  But we do.  We miss them with all our hearts.  And though I’d be lying if I said on some of those days I wished I were anywhere but trapped on that couch, now that I am free to move and jump and go where I want, when I want, all I sometimes want to do is curl up on the couch and close my eyes and remember when Stella’s soft weight filled my lap and my vision and my heart.

But nowadays Aimee and I are caught up in the rhythm of regular life.  Wake up, feed kids breakfast, grab something to eat yourself, get dressed, get kids dressed, disperse to daycare, work and school.  Come home, make dinner, feed kids, bathe kids, put kids to bed, clean up, collapse into bed.  Wake up and repeat.  Sometimes a day or two goes by and everything seems the same because the pattern is so predictable, but then when you are forced to look back almost a year, you realize how different it all is.  How Sam is almost the age now that Stella was at diagnosis.  How Hugo, a mere 10 weeks old when Stella died, is now a fully-formed little toddler who walks around and loves trucks and laughs at his older brother.  How Aimee is back at work in full force and how I have become a full-time student.  How the house that was once constantly open, bursting at the seams with energy and visitors and shared food now sits quietly, it’s door mostly shut.  Empty all day long.  It’s hard.  We struggle because along with grief, we are dealing with the needs of a 23 month old and a 13 month old.  They don’t sleep well, they bop each other on the head with toys, they don’t like to share.  They challenge us everyday.  “What were we thinking?” we sometimes wonder out loud at the reality that we chose to have children 10 months apart.  Yet, we know we could not live without them.  The sleep deprivation, the time-outs, the tears and struggles disappear when Sam snuggles into my lap for bedtime stories, and Hugo nuzzles my neck after his night time bath.  It may not have been the easiest choice, but it was the best one for us.

Our family this past weekend at Stella’s bench/tree, Riverdale Farm:

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Now I do something I haven’t done since Stella was diagnosed.  I leave the house every single day, get on the subway and travel.  It used to be work and now it’s school, but as I shuffle along with all the other people walking towards the crowded escalators I feel more trapped than I did when I was on the couch all day. I miss the safe little bubble that we created for Stella when she was sick.  When almost every interaction we had was positive, and each day brought a new story about someone or something that had done something ordinary or extraordinary for our girl.

 

Out in the “real world”, it’s scary.  Being a student is a struggle for me.  I enjoy my classes very much, but I feel like an outsider.  The vast majority of my classmates are under 23 years old.  In fact, some are as young as 17.  I hadn’t fully realized before now how my children had become almost my sole interest.  I’m used to being in social settings where the most common question is, “How many kids do you have?” Followed by, “How old are they?” and “Are they in daycare/what school do they go to?” and you just build the conversation from there.  But here…well, here no one cares that I have kids.  I mention it- frequently- but have yet to be asked any follow-up questions to the statement.  The people around me talk about the party they went to on Saturday night and the part-time jobs they have.  They wander the halls walking together in groups, but everyone with their heads down as they furiously text or check facebook messages.  They talk about who is trying to “pick up” whom in class, flirt with each other endlessly and in the margins of their notepads, design the tattoos they are planning on getting. Young and childless, they are able to work evenings and weekends at Funeral Homes and have so much more experience than I do.  When I say I have never done something because I’ve never worked in the business, all the other students do is look at me with a mixture of horror and pity.  I imagine that when I fade back from the group they say to each other, “That old lady is never going to make it”.

 Sam and Hugo at our friends Christina and Kristin’s Wedding this past weekend:

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Sam, Hugo and Gracie spend time at BlueBird cottage:

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Familiar feelings of my awkward High School days have come bubbling up to the surface.  Not quite fitting in, but not a complete social misfit.  I got through High School by minding my own business and flying under the radar.  The mantra I once had is again playing in my brain: “Dress in plain clothing.  Don’t draw attention to yourself.  On breaks and at lunch find a quiet place and keep your head down”.  But that’s not who I wanted to be this time.  This time, I am coming to a school in my mid-thirties.  I have suffered the loss of a child and learned to be brave and stand up for myself and be painfully honest.  I wanted to walk in here and be the open, confident, smiley person that Stella was, and that I promised myself I would become.  But change is hard.  Change is slow.  And this change is fraught with emotion as I struggle to keep up with the realities of living life without Stella.  Part of me wants to quit.  Wants to run away and hide because this is hard.  The classes are challenging, the commute is awful and the social aspects are daunting.  I rationalize by saying that I’ve done harder things before, but then the other part of me says, “exactly, so why do you want to keep doing hard things.  Take a break”.  But there is a lot riding on this crazy idea of mine to go back to school.  A huge financial strain on my family, a huge leap of faith that I will be good at this and employable at the end of it, a huge risk that I will, very publicly, fail.  So I do the only thing I can— the one thing that Stella did every single day— I get up.  If I keep getting up and out of bed, then it means I’m living another day and that I will get through it.  I even had ice cream for breakfast on Tuesday morning before braving my class.

 

But thank goodness it’s Fall.  Thank goodness it’s the season that is most representative of change and not fearing the cold and snow that will follow because spring, with its promise of nice days will eventually come again.  Thank goodness Stella taught me to have patience with myself and to fight only the challenges of one day at a time, because one challenge at a time is do-able even if the entire experience is hard.  Thank goodness I can remember exactly what I was doing on this day last year, and remember how I promised myself to live better and be better.  Thank goodness I have the rhythm of the days to fall back into when the outside world feels too scary.  Thank-goodness I was given the gift of Stella who taught me that even the smallest gain can be a victory.  The little girl who taught herself to paint by grabbing a paintbrush with her mouth.  Who taught herself to communicate by sticking her tongue out for “yes”.  Who taught herself to dance by swinging one hand over her head.  Who taught a community about love and me about life.

 

Thank goodness that even almost a year after her death, I am able to find strength and inspiration in her every single day.  I remember once, before she was diagnosed, Stella tried to climb up the slide.  I kept telling her to go around and climb up the ladder instead.  “Why?” she asked me.  “Because you’re not supposed to go up that way,” I responded.  She looked at me than back at the slide

“Why?” she repeated.  I was flustered.  “Because…because it’s dangerous”.

“No Mama!” She shouted at me.  Stella said “no” to me so often, it just bounced off my back like a rubber ball.

“Fine,” I shrugged knowing she would never make it.  “Climb up the slide, but it’s easier to go up the ladder”.  At that, Stella smiled mischieviously and pushed and pulled and grunted her way up the slide.  She slid backwards several times and I stood with my hands on my hips resisting the urge to pull her off and force her up the ladder.  I knew she wouldn’t make it, and waited for her to see I was right.  It wasn’t that I wanted her to fail, I just couldn’t figure out why she wouldn’t just climb the ladder and be done with it.

 

But you know Stella.  She DID make it up that slide.  Her smile when she arrived at the top was priceless.  She could have easily gone up the ladder, but there was no challenge in that and she knew that making it up the slide was so much sweeter– especially because I had told her she couldn’t.  I remember shaking my head in wonderment.  What a turkey.

 

And so, even though it would probably be easier for Aimee and I to just “take the ladder”, we are going to live our lives Stella style and go up the slide because we know the “made it”! feeling will just be that much sweeter.  And, as Stella taught me, “I told you so” is pretty satisfying too.

 

There are two ways to get to the top of an oak tree;

Climb it,

or sit on an acorn and wait

 Stella, September 21, 2012:

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FOR STELLA (by Aimee)

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By Aimee Bruner

This time last summer, I was losing my daughter right in front of my eyes.  She was weeks away from death and weeks away from slipping through my tight grasp forever.  My heart was breaking in ways that I never knew it could.  Mishi and I spent all day, every day, nestled on the couch, holding Stella in our arms.  Our bodies aching from spending almost a year sitting in the same corner of the couch – one arm cradling Stella’s head and the other doing whatever it needed to do to make her laugh or smile.  My muscles still hurt on the left side of my body from time to time and the carpel tunnel in my left wrist from holding my girl has still not gone away.  I hope it never does because sometimes I feel like it’s the closest thing to her that I have left.

 

I remember feeling so tired, helpless and unbearably sad in those days.  As I sat on the couch, caressing the beautiful curls, soft skin and button nose that I knew I would one day miss too much to survive – the little voices and laughter of the neigbhourhood kids rang out all summer long.  Bike rides, trips to the store for ice cream and riding scooters to the park.  It was happening just outside our living room window as our daughter lay dying just a stones throw away.  It was excruciating and I know, that there is a part of me that will never recover.

 

One day, when I could no longer stand the aching that was going on in my body and the feeling of weakness that went along with it – I decided that I needed to get out of the house and exercise for 30 minutes every few days.  I’m not a runner but I decided to jog anyway.  At first it was so hard – who I’m I kidding – it was always really hard for me, but I loved the way I felt afterwards.  It made me feel alive again.  It was such a release.  I could turn my brain off and just be.  After a while, every time I jogged, I found my mind wandering.  I started picturing the Tour for Kids ride – this is a bike ride that is held every year to raise money for the three cancer camps in Ontario.  I work at Camp Oochigeas – one of the recipients of the funding from the ride.  The ride was approaching and the buzz around it made me start to wonder if I could do it.  It’s a 4-day, 400Km ride and far beyond anything, physically, I had ever done in my life.  I started thinking about it constantly until I just couldn’t let it go.

 

So I borrowed a bike.

 

I started to go for short rides (I didn’t want to be away from Stella for too long) and very quickly fell in love with it.  For the first time in a long time I felt strong.  I tried to get out for a ride anytime I could but shortly after getting into my new favourite pass time, my world came crashing down when Stella died in our arms.   Everything came to a halt.  It was the horrible reality that Mishi and I knew would one day come, in fact, we had a year and a half to “prepare” for it but it was excruciating.  She was gone.  Our baby girl – the one we dreamed of long before she was born – gone.  Mishi and I were devastated and we were lost.  All of us were lost.  For a year and a half, Stella was the focus of every day for all of us.  Mishi and I weren’t just grieving the loss of Stella from this earth – we were grieving the loss of feeling the weight of her little body on our laps.  Her sweaty curls, cherub lips, painted nails, half open eyes, quiet and sometimes fading breath, her stiff legs that would lay crossed at all times and her big toe that would permanently point up as if it was flexed.  Gone.

 

As we pushed through what were some of the darkest days of my life, I stopped wondering IF I could do the Tour for Kids ride and decided that I could do it.  I would do it and that I would do if for Stella.

 

Before I knew it, I had convinced my sister-in-law (who didn’t need much convincing) to register for the ride with me.  Together  we proudly made up the Stella’s Stars Team.  As the months flew by and the ride was approaching, it was all I thought about.  One of the things that preoccupied my thoughts was our team jerseys.  I had been dreaming them up for months.  A very kind friend at work hooked us up with an amazing clothing company called Genumark.  Not only did they donate the jersey’s – they designed them too.  I never imagined that we would be able to capture Stella’s true spirit on a shirt but we did and they looked incredible.  Thank you Marc and the Genumark Team!

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On the day of the ride, my dad dropped Julia off at the start line.  He woke up before 5:00am on a weekend to get us there on time.  It was as if I was 10 years old again and he was taking me to a soccer tournament – he was adorable.  Julia and I were both excited and nervous when we got there and started to set up our bikes.  Julia attached Stella’s beloved puppet Red – who she called Fred – to the handlebars of her bike and we both adorned our bikes with pictures of our girl.  We were ready to go.  As we stood at the start line, we laughed about the fact that neither one of us knew what the hell we were doing or what we were in for.  There we stood, crammed in with 600 other riders – the energy was palpable.  From the microphone up at the front, we listened to a parent speak about their beloved child’s experience with cancer. You could hear a pin drop and suddenly, I could feel a vice grip on my throat.  I felt like someone was kneeling on my chest.  Listening to another parent’s pain, I was standing in a crowd of people and I too was the one with a photo of my dead child on the back of my shirt.  I’m part of this club now – a club that no one should ever have to be a part of.  The sunscreen that was on my skin quickly ran into my eyes that were already brimming with tears.  I took a deep breath, looked at Julia and I felt ready to ride for Stella.

 

So off we went, from Oakville to Waterloo.  116 km, 5hrs and 23 minutes of riding, too many hills to count, 3 rest stops later……and we were there.  Day one was done.  We made it – sore bodies and all.  I was proud of us.  Over the next three days, Julia and I would push ourselves more than we ever have in our lives.  We taxed our bodies beyond belief.  The hills were ridiculous and seemed never ending at times.

 

Each time I found myself struggling to push my way up a hill and it hurt so much that I didn’t think I could go any further – I pictured Stella’s little face. I thought about everything that she went through, everything she lost – and I pushed forward.  She didn’t have a choice in the matter – she had to lose her ability to walk and be anchored to the couch and watch her friends come over and run around playing with her toys.  She had to fight to talk only to let out nothing more than a squeak.  She had to give up her potty for diapers and she had to figure out how to swallow with a tumour strangling her brain stem.

 

All I had to do was ride a bike up a hill.

 

Each day of the ride brought with it new adventures for us.  It was truly amazing to be a part of such a moving and inspiring event and I loved having the chance to do it with my sister-in-law, whom I love deeply, at my side.  Her gentle spirit and quirky sense of humor are a true reflection of who she is and the reason why Stella found so much comfort in being around her.  Julia and I spent most of our time on the ride laughing at each other and ourselves and I feel forever bonded to her.

 

On the last night of our ride, at dinner, I spoke about Stella and about Camp Oochigeas – two incredibly important  stories to tell.  I was asked to speak about Stella months before the ride but I originally declined.  I was too nervous to speak about her for the first time publically, in an environment that was connected to my work.  The only other time I’ve spoken about her was at her funeral.  What if I broke down and couldn’t recover?  A friend talked it through with me and helped me get rid of my cold feet.

 

I came to the realization that I needed to tell her story.

 

I wanted people to understand how incredible she was and I needed them to understand what we lost.  So that night, I threw on a clean Stella’s Stars jersey, took a deep breath and locked eyes with the 600 riders in the audience.  I told them about my beloved curly haired mop top of a kid and the exquisite joy she brought into our lives.  They learned that she had a thing for physical violence, pigs and chocolate Tim Bits and that even though the tumour robbed her of almost all of her faculties one by one – Stella chose joy every time.   I explained her love of ice cream and that we made sure that she was able to eat ice cream for breakfast every day for the rest of her life.

You can watch the speech on YouTube here:

 

The next morning, on our way into the cafeteria, I was stopped every two feet by rider after rider on their way out.  Each one of them saying  “I just ate ice cream for breakfast and I’m riding for Stella today”.  At first, I thought that people were just being kind but as I entered the cafeteria, I saw 600 riders eating ice cream for breakfast!  Each one of them, with the appropriate amount of protein, carbs and fruit on their plates – right beside a big plop of vanilla ice cream.  In the servery, right beside the yogurt station, there was a big vat of ice cream sitting under a sign that read “For Stella”.  My heart was full and for a moment, it felt less shattered.

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Thank you Tour for Kids for honouring my little girl.

On the final day, I spent the last hour of the ride quietly crying on and off.  I kept envisioning the moment that I’ve spent the last year leading up to – crossing the finish line.  I’ve replayed this moment in my head many times over the past year and now it was finally within reach.  As we fumbled towards the finish line and it was finally in sight, Julia and I pulled out the green banner we made to carry across the finish line. “We Miss You Stella”, it said.  We tried to coordinate ourselves by riding just close enough together that we could each take and end of the banner.  After a few failed attempts and close calls with the graveled road below – a friend who has just a touch more skill than we do in the cycling department, came to the rescue.  With her help, we made it.  Pedaling towards the finish line, I felt weightless, just for a moment.  I wanted to yell “We did it!” at the top of my lungs….just like Dora.  The finish line was packed full of our family and friends who were all decked out in Stella’s Stars shirts.

 

As I stopped my bike and looked around, I could feel it – she was there.

 

We did it Stella.

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This ride was incredibly healing for me in ways that I never imagined.  Connecting with other parents – parents who have been forced to walk where I’ve walked and who know the excruciating hell that I know – made me realize that Mishi and I are not alone.  To all brave parents who reached out to me – thank you for sharing and thank you for listening.

 

I learned about a different kind of strength and perseverance.  I learned about the power of group of people coming together with the same goal in mind.  I learned about humanity and I learned about myself.

 

I rode for me – for my broken heart and for her.  I rode for Stella.  I will ride for Stella until I can’t ride a bike anymore.

 

Tour for Kids 2014 – here I come!

 

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First Day of School

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Back just after Stella turned two, I sourced out a person on Etsy.com that did personalized lunchboxes.  I hadn’t ordered it yet, but had planned on getting one for Stella the summer she was four.  It was going to be a Golden Girls lunch box with her name in sparkly purple on it.  $85 U.S., but worth it for her to have something truly original and truly Stella.  From the time she was born, I imagined walking her to school on her first day, picking up her friend Flora and parents on the way (they are in the same district), and standing back and crying  with pride and incredulity that my little girl was starting school.  I used to walk Stella past her local school when she was just a newborn in her stroller and gaze at the flagpole, thinking about that magical day in the not-so-distant future that Stella would march through those doors with her peers.  Class of 2027, I used to think. Now, along with so many other plans and dreams, this one has been broken and lay hemorrhaging on the ground.

 

No matter what I do, or how busy I try to keep myself, I am acutely aware that all of Stella’s peers are starting school on Tuesday.  I have avoided being around or talking to anyone for the last week because even though I know, I don’t want to know.  I want to act like a child and cover my ears, close my eyes and cry, “I can’t hear you!” at the top of my lungs.  Even though the voices I hear reminding me about the first day of kindergarten are coming from the inside, not from an outside place that I can shut it out.  This one hurts.  This, the first very obvious thing that Stella is missing.  I know that my friends will think of Stella as they drop their own children off at school, I know they are sad that she’s not there too.  Knowing that helps a little bit, but I still can’t help the tears from falling and my throat from hurting when I wonder for the millionth time why she isn’t here.

 

But on Tuesday, instead of having the day off work to walk my little girl to her first day of school; instead of proudly presenting her with her custom lunch box, and buying her a little knapsack; instead of having little jitters in my stomach for her, I will be going through it myself.

 

I have decided to go back to school.

 

It was something I have been thinking about for years, but like many other things, your logic gets in the way.  “We can’t afford it”, “I’m too old”, “I’m too tired”.  Then Stella got DIPG and logic went out the window.  All the excuses are still there— we really can’t afford it, I really am kind of old, I really do feel exhausted all the time— but excuses get you nowhere.  Stella gave me the courage to push past all the reasons I couldn’t go back to school, and look inside my own heart.  And my heart was telling me it was time for a change.  I thought long and hard about what I like to do, what makes me feel good.  Despite the myriad of choices I had before me, I kept being drawn to something with death and dying.  It had dominated my thoughts for over a year and a half, and continued to fascinate and challenge me.  So I thought. And I talked.  And I worked a little.  And I decided— I’m going to become a Funeral Director.

 

The news was met with raised eyebrows and forced excitement by most people.  I understand.  It seems like an odd choice at the outset.  I was encouraged to look at other professions…”Don’t you want to be a teacher/lawyer/nurse/physiotherapist/midwife?”

 

All those professions are wonderful.  I’m sure I would enjoy any of them.  But they don’t call to me the way mortuary sciences do.  I think everyone was worried about me—maybe this was a part of my grief process.  Maybe this was just something I thought I wanted to do because I missed Stella so much.  Maybe this was just my way of rebelling.  So, as part of the application to the program, I spent two weeks working at a Funeral Home.  Not just any Funeral Home, I went back to the one where Stella’s service was.  I figured if I wanted to make sure I could do this, I needed to make sure I could do it in the place that held the most trauma and memories for me.  So I went to the very same place that I had cried and shook and felt sick to my stomach in.

 

On my first day I was early, so with self-doubt ripe in my brain, I began walking up and down the rows of graves.  The voices of doubt that well-meaning friends and family had shared echoed in my head.  Was I crazy?  What the Hell was I doing here?  Just as I had almost talked myself out of going into the building, I noticed a white ribbon in the distance.  Narrowing my eyes, wondering if it really could be, I walked towards it.  And there it was.  A Stella Star, shining in the sunlight, hanging from a tree.  I looked around, stunned.  I didn’t even know what part of the cemetery I was in.  I fingered the star with my daughter’s name on it and smiled.  I felt in that moment that it was Stella, telling me to go ahead.  “Be fearless” she would have said with a smile.  There was no sign more obvious and significant to me.  So I smiled, took a deep breath and went in the big double doors of the Funeral Home.
For the next two weeks, I immersed myself in the world of death and funerals.  I did and saw everything and anything people were willing to share with me.  Grieving families, dead bodies, paperwork, music, food, “the freezer”, flowers.  And there, in the midst of death and sadness, I felt the most peace and happiness that I had since Stella’s diagnosis.  Halfway through my two week stint, I accompanied a woman and her son to the crematorium.  The same one my darling daughter had been brought to just a few months earlier.  I looked around the cold grey walls, and made eye contact with the same man who had worked the crematorium the day Stella went into the hot kiln.  I again wondered if I could do this.  As the new widow watched her husband’s coffin get pushed inside the retort and I pictured how Stella’s little coffin must’ve looked, she sobbed once and reached out blindly towards me.  I caught her and she stood there with me, her face buried in my arms.  She squeezed my hand and didn’t let go for a long time.  I felt a jolt of energy go through me.  This was what it was like to be there for someone in their rawest moments.  This woman didn’t know me.  She had likely forgotten my name and would never remember who I was if we ran into each other again.  But in this moment, in this time where she was most vulnerable, I held her up.  And she needed me.  I felt strong and useful.  I felt at peace.  I wanted to be able to do this.

 

Of course being a Funeral Director is a whole bunch of things…it’s being a salesperson, a psychologist, a support, an administrator, a scientist, an artist.  It’s something I think will be challenging and difficult.  But I also think I can make a real difference in people’s lives doing it.  I think about how the people that worked with us on Stella’s Celebration of Life helped us so much and allowed us to honour our daughter in a way that made us proud.  I want to be able to do that for other families.

 

On my last day at the Funeral Home, I told my mentor the story of the Stella Star and we went looking for it.  I went back to the place I had seen it, but it was gone.  I began to wonder if I had invented the whole thing, and started to feel a bit crazy.  Then we saw a white ribbon on the ground in the distance.  A closer look told us it had been chewed by an animal.  After a little search, we found the Stella Star lying on the ground by a tree, almost covered in leaves.  I laughed.  A squirrel had eaten the ribbon and dropped the star.  If I had started my time at the Funeral Home any later than the day I had, I might never have seen that Star.  So, obviously, it was meant to be.

 

And so, on Tuesday, instead of getting Stella dressed for the first day of school, I will get myself dressed.  Instead of walking her to school, I will hop on the bus and take myself.  Instead of having nervous butterflies for her, I will have them for myself.  And as I walk into that classroom, I will think about my little girl and how much she gave to me in her 3.5 years here on Earth.

 

I’m nervous.  I’m scared that I won’t be able to do it.  I wonder if my classmates will like me, or if they’ll think I’m old and nerdy (most of my peers will be 18!).  I wonder if any Funeral Home will want to hire me when I finish.  I am nervous about fainting or throwing up when I embalm my first body.  I am full of self-doubt and nerves.  But I’m also excited to start.  Proud to do something I really want to do in Stella’s name, and honoured to be entering such an important tradition.

 

So, happy first day of school to Arin and Ava and Flora and Noam and William and Eamon and Ethan and Nate and Declan and Rosie and Aurora and Lark and Ayden and all of Stella’s other friends.  And happy first day to me.  And Stella, who will be with me every step of the way.

 

“Education is not the filling of a pail, but the lighting of a fire”

-William Butler Yeats

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Sam and Hugo aren’t sure how they feel about my science lesson

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Swinging Sam!

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What would you have been, little girl?

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Aimee and I hung a Stella Star outside the front entrance of the school Stella would have gone too (on the chain link fence, under the tree just behind the black lamp)

 

 

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