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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Life, Death, Ice Cream

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I’ve written before about how one of the frustrating things to me when Stella was alive was reading other people’s DIPG blogs and then having them suddenly end just days or weeks after their child died.  As a parent standing on the edge of an abyss of darkness, I wanted to…NEEDED to…read about others journey’s.  I needed the reassurance that someday it would all be okay.  So even though I don’t feel like I have much to write nowadays, and even though there are few people who still follow this blog, I continue to write when I can because I keep thinking of all the “new” DIPG parents out there who may be trolling the Internet in the middle of the night, looking for assurances that they will survive their personal nightmare.

So… in case you were wondering, we are still standing.

Stella’s youngest brother, Hugo, turned two on August 2nd.  He is such a little character.  Built just like Stella, same mischievous grin and same bright blue eyes.  But he is so very different as well.  As we sang happy birthday to him, both Aimee and I blinked back tears remembering Stella’s 2nd birthday.  It was our last few weeks of innocence, but we had no idea back then what was about to happen to our lives.  In may ways, Hugo saved me.  I was in such a dark place and when I got pregnant with him I had to care again.  Having this little life inside me forced me to start looking after myself.  I felt so betrayed by the world when I realized my daughter was going to be taken from me— not just taken, but slowly eradicated— and I lost all the confidence I had that there was any point in trying to protect your children.  When Sam was born I was terrified for the first little while, and I got pregnant with Hugo when Sam was still a newborn himself.  What a crazy time.  But having a baby growing inside me meant I had to eat and sleep and look after myself.  Hugo has helped lessen the sting from the loss of Stella.  Though nothing can ever make up for the death of our curly-haired, energetic daughter, Sam and Hugo together have given us so much joy.  They gave Aimee and I back our lives—both literally and figuratively.

There are some days now that I don’t feel sad at all, and others when the tears won’t stop flowing.  And I find that sometimes, it’s at funny and unexpected times that grief will hit.  I was looking at photos of the kids that we put up at the cottage last year and thinking about how we need to update them since the Sam, Hugo, Gracie and Xavier are so much bigger now.  Then I realized that the ones of Stella on that same wall will never be updated.  There are no more new photos of her.  She is forever 3 1/2.  When I thought about that, my heart hurt so much I thought it would burst out of my chest in a cascade of salty tears.  Sadness weighed me down in that moment.  I tried to imagine what she would look like had she lived.  We probably never would have cut her curls so they would likely have been cascading down her back by now.  She may have been longer and leaner too.  I pictured her with green nail polish and a brightly coloured bathing suit.  I wondered if she would have chosen the bathing suit with Dora on it, or the one with flowers or hearts.  Pink or purple crocs?  Maybe neither.  The first pair of crocs she insisted on when she was 15 months old were plain shit brown and there was nothing we could do to convince her the other colours were nicer. Now Sam wears pink Dora crocs and Hugo likes his blue Thomas the Train.  I wondered if Stella and Gracie would have ganged up on Sam.  He would have had no Hugo to chum around with, so I wonder what that dynamic would have been like.  Probably freckles would have started appearing on her chubby cheeks.  Perfect white chicklet teeth, bright blue eyes, bubbling giggle.  My head can picture it so clearly if I try, but it hurts to think too hard about it, so I didn’t let myself sit and wonder for too long.  It’s healthier for me to stay in the here and now.  So I stopped that train of thinking and allows the “now” moment to seep into me.  Using all my senses, I watches the boys play with Gracie, felt the sun on my arms, listened to the rustle of the trees as a light summer breeze passed by, smelt the mixture of sunscreen/sweat that heralds summer fun and tasted the grape freezee, a familiar manufactured flavour that is unchanged from my own childhood, 30 years ago.

Staying in the here and now is also how I’m getting through this extremely challenging Funeral Director internship year.  The hours are long, working weekends and holiday’s is hard on my family.  I’m struggling.  A lot of it is the driving.  I only got my license (for the first time in my life!) this past May, so I’ve been driving for less than 3 months.  Driving in Toronto traffic is extremely stressful for me.  For anyone else who works at the funeral home, if they are given a simple task such as, “go to Toronto General Hospital and pick up a body from the morgue”, they grab the keys and whistle Dixie right out the door.  Not me.  As soon as I’m told to drive somewhere, the knot in my stomach starts to tighten and the blood rushes to my head.  Immediately, my brain goes into overdrive about how many times I’m going to have to change lanes, what time it is so I can gage traffic, how many left turns there might be, if I may need to back up somewhere, etc. etc.  My hands shake as I grab the keys and feel like I’m going to vomit the entire drive there and back.  There is ALOT of driving when you are a Funeral Director intern.  Drop off flowers, pick up Clergy, drop off body at the crematorium, pick up cleaning supplies, drop off body at the airport, pick up body at the morgue, etc. etc. etc. I can’t back the Coach (aka hearse) up into the garage and I can’t park the lead car completely straight under the carport.  I feel embarrassed.  I know I have so much to offer, but the driving is not showing anyone what I’ve got, but rather just points out my weaknesses.  Aimee holds me at night when I come home crying and says, “You can DO this!  You’ve done harder things”.  But that’s the point, I tell her, I don’t want to do hard things anymore.  I’m tired of doing hard things, I want something to be easy and fun and enjoyable.  I want so desperately to do this, and to be good at my new career, but each time a situation occurs that necessitates me driving, or doing something unfamiliar and stressful, my stomach knots up and that voice inside my head gets louder and louder, “You can’t do this.  It’s too hard.  Quit”.  Some days I don’t know how I’ll make it.  Other days, something almost magical happens and I get a moment of pride and accomplishment that spurs me on to the next day.  At one point last week I had a particularly trying day where another Funeral Director reamed me out for multiple things, and I was a mess of nerves, my spirit broken. 15 minutes before the end of my shift, a young couple came in to pick up the cremated remains of their stillborn baby.  As they sat on the couch waiting for the impersonal cardboard box that contained their broken dreams and hopes in it, I recognized their name and remembered that it was I who had looked after their baby.  After talking myself out of it half a dozen times, I went up to them and introduced myself.  “Hello,” I said, “my name is Mishi.  I see you’re here to pick up Baby C. I just wanted to let you know that I was one of the people who looked after her.  I wrapped her in a hand-knit yellow blanket with a matching little hat that had a pink ribbon on it.  I held her and took good care of her for you”.  When I saw the look of relief come over their faces and the tears roll down their cheeks, I felt like it was the right thing to do.  I wanted to know that Stella was looked after once I handed her over to the Funeral Home, and I think that these parents needed to hear that as well.  I felt good about it.  Even though the situations are totally different, sometimes plodding through this new career stuff feels much like navigating Stella’s illness.  It’s all a big unknown, a leap of faith. A long, exhausting journey that has lessons around each corner…some welcome, some not so much.  It’s a reminder about the extraordinary things human beings can do, but also about the fact that we all have our limits.

My life is, ultimately, a love letter to my daughter.  A promise to live life the way she did—- honestly, fully, defiantly.  So, whether I am mulling over Hugo’s birthday, Gracie’s latest growth spurt, traffic jams or what ice cream flavour to choose, I am taking it all in.

I am loving what I have.  And on the hardest days, I have a great big bowl of ice cream for breakfast.

These boys mean everything to us.  Sam wishes Hugo a happy 2nd birthday!

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Family pic at the cottage:

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Gracie and her cousins go shopping:

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Stella, 8 weeks before she died, giving Hugo cuddles:

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