The Pain of Wisdom

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October and the change of summer into Fall is always hard for Aimee and I. We struggle with so many conflicting emotions. Happiness at our family and our two amazing sons, and the acute knowledge that something is missing— out little girl—and she is always missing from everything that we do. Every dinner, every Friday Family Movie night we have at home, ever holiday, every moment of everyday something is missing. It is difficult to live with the ghost of the past and all of the “should have been” or “could have been”’s that we think about. Just last night I was at the grocery store. It was all so mundane. The guy checking me out did the usual, “Hi how are you” and I said, “Great. How are you?” and he responded then I watched him bag the groceries. It struck me how surreal it was to be standing at the grocery store now, almost 3 years after Stella’s death. The same grocery store her and I walked to on a daily basis when I was on maternity leave with her. And when she got diagnosed with DIPG, we walked there all the time for Avocados and fresh air. And now there I was standing completely normally, having a meaningless conversation with someone, hiding completely what I’d been though. Suppressing the vivid memories I have of Stella at that same store. It’s such a tricky thing to remember and honour her without getting stuck in the past and without focusing so much on the heartbreak and sorrow that you miss all the gifts and joy of the present.  Some days are easier than others.  Almost 3 years after her death, it is easy to look back and think how far we’ve come.

But oh my God, I miss her.

I miss her laugh. I miss kissing the top of her forehead where the curls started. I miss watching the soft rise and fall of her chest as she slept. I miss all the dreams and hopes I had for her life. Last week I got in the mail a catalogue for a line of dolls called Maplelea. At first I was so excited because I love dolls and clothing and all the amazing accessories. But then I thought about the little girl I always imagined sharing that love with and I burst into tears. Poor Aimee didn’t quite know what to do with a blubbering 36-year old holding a doll catalogue and raging at the injustice of not having my daughter to share it with. So she just held me and let me cry. We don’t even know if Stella would have had any interest at all in dolls (truthfully my sense is no—whenever we gave her one, she would try to rip it’s head off…), but that’s part of the anger of it all. We don’t KNOW what she would have done or liked or disliked. And we will never know. All I have are 3.5 years of memories and a tear-stained doll magazine that is now at the bottom of a pile of bills. There are other little girls in my life that will look at the magazine with me. But I wanted it so badly to be MY little girl. The boys…well, I never really believed that boys are boys and girls are girls, but truthfully my guys show no interest in dolls. They like sword fights, zombies, lego and bike riding. They are constantly leaping off of furniture, running in circles and climbing anything they can find.

It’s very interesting to me the way that Aimee and I have reorganized our lives since Stella died. My new career as a funeral director turned out to be the best decision I could have made. Being around other people and their acute grief is comforting to me somehow. It makes me feel less alone, and stronger, when I see the way that all human beings must deal with and overcome that final separation of death. And there is such a feeling of accomplishment and peace for me when a family thanks me for helping them. Stella comes up often in my work. I share her with anyone and everyone when it is pertinent, or I think it will be helpful. I have also had the incredible opportunity of sharing Stella’s story at various conferences around Canada in the last year, sharing with groups of Funeral and Cemetery professionals the lessons and legacy of Stella Joy. I have needed to find a way to keep saying her name. To keep proving to myself, and to others, that she mattered. That she only lived three years but she made a difference.

She is the reason that I have the opportunity to wake up each morning and help another family trying to navigate the deep and complex waters of grief and trying to plan a ceremony to honour their loved one. She is the reason that my kids have been to Medieval Times twice in two months, to the zoo, the pumpkin patch, bike riding after school. She is why they get trips to the store for ice cream and any Hallowe’en costume they want (Hugo was THIS close to being Tinkerbell this year, but changed to a knight at the last minute swayed by the little plastic sword). He is why Aimee and I never seem to have money to go out for dinner, but always have enough to take them to Great Wolf Lodge. She made our family stronger and closer. She reminds me not to get frustrated at traffic or lineups. To tell people that I love them whenever I get the chance. She taught me to enjoy the little moments of life, the bath times and the evening walks. Because, the little things are really the big things.

We will be spending Stella’s death-anniversary at Great Wolf Lodge again. Since all the dates are so close, we will also celebrate Sam and Xavier’s birthdays there. (Sam turns 4 October 20, Xavier turns 4 October 21 and Stella died October 22). It’s been interesting seeing how happy and excited the boys are to be going to Great Wolf Lodge to celebrate birthdays while the adults know that we are also going to mark an occasion we would rather forget. This cluster of dates is such a reflection of what our life is like now. Balancing joy and heartbreak all in the same breath, learning to find happiness and joy in while still honouring grief as we navigate both happy and sad occasions.

We are in a rhythm now. We know how to mark certain days and how to anticipate what is coming. There is normalcy again. There is hope and light and laughter and true joy. We are guided by our precious Stella star who reminds us each and every day to find something to be grateful for. I would give anything to hold her again and to tell her how amazing she is, but I know I can’t. So instead, I will continue to look to her for strength and find her inside of me whenever I am lonely.

“Pain can change you. But that doesn’t mean it has to be a bad change, if you take that pain and turn it into wisdom”.

Love you always baby girl.

A little ice cream at the zoo for Stella:

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Change of Season…fall for Sam & Hugo:

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Letter to Stella from cousin Gracie:

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At the Pumpkin Patch:

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Remembering that smile always and forever.  Stella, age 2:

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Fall Changes

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

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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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D-day (By: Aimee Bruner)

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By: Aimee

Three years ago today, my life fell apart in the dim light of a hospital room at 12:30a.m. With cartoons playing on an old TV attached to the ceiling, Mishi snuggled into the hospital bed, cradling Stella in her arms, I was curled up on the hard bench attached to the wall, slowly drifting into the state you reach seconds before you fall asleep.  Then it all stopped.  The door swung open, a sliver of light filled the room and a team of doctors in scrubs lined up along the wall.  As the lights came on, one of them started to speak.  To this day, the only words that came out of  “Dr. Doom’s” mouth that I remember are “mass”, “brain”, “oncology”.   I remember Mishi lurching forward, looking at me in hopeless desperation and saying “Aim – NO NO NO!”  I was frozen, unable to move, just watching it happen.  One of the residents had to help me move across the room to be at Mishi and Stella’s side.  Stella knew something was wrong right away and started to squirm to look at Mishi.  Mishi’s eyes rolled back in her head and she fainted – out cold.  Our world was exploding and we were being crushed under it’ weight.

 

There we were, alone – losing everything we had.  Earlier that night, we had sent our family home because we were told that we would not receive the MRI results until the morning.  As four doctors worked on Mishi who was still unconscious, I was franticly trying to clutch Stella in my arms as she screamed for her mama – “I want my mama!  What’s wrong with mama?!”  As she hit and kicked me, I managed to get my cell phone out of my pocket.  I needed my parents and I needed my sister.  They came.  They came right away – and they never left.

 

Although the excruciating moments that unfolded over the next four days and the weeks to come will never be gone from my memory, I won’t recant them any further on this page.  Mishi has since been diagnosed with PTSD from the experience of Stella’s diagnosis and I won’t drag her back through it on this blog that is so sacred to her.  She won’t be reading this post as I’ve warned her not to.  It’s just too hard.

 

From the very beginning, my defense mechanism has been a form of denial that only allowed me to take in minimal information at a time.  When Stella was diagnosed, I was the only one in my family who didn’t Google DIPG.  I was afraid to.  Just knowing that my daughter was going to die from an inoperable brain tumour wrapped around her brain stem was enough information that my mind, heart and soul could handle.  Lately however, three years later, I’ve found myself wanting and needing to know more.  Mishi and I made the decision early on to donate Stella’s tumour.  Two weeks after her diagnosis, after we watched our daughter be wheeled out of the doors of the pre-op room on her way to the O.R., where they would biopsy her tumour, there was a nice, quiet man hovering by the door way.  I knew why he was there and as we walked out I said to him “are you waiting for us”.  He said “yes” in a meek, nervous voice and as he clutched onto his clipboard we put him out of his misery.  We asked him if he wanted to know if we would donate Stella’s tumour and he said yes.  He handed us a package that was an inch thick and I can tell you right now, neither one of us read a word of it.  We just asked him where we needed to sign and that was it.  The details of what we had just signed to were not important to us.

 

After Stella died, people kept asking us when/if we were going to find out what they learned from the donation of her tumour.  I wasn’t ready.  As little information as possible – that is how I had been coping.  For the past few months however, I’ve been haunted by the feeling of not knowing and I realized that I needed to know what the tumour looked like, how big it was or whether it looked different because it was never treated with chemo or radiation.  I found myself wanting to know why Stella was an “outlier” from the beginning.  I needed to know it all.  They cut into my baby after all – I deserved to know.  So after reading about Stella’s pathologist, Dr. Cynthia Hawkins, who just received a million dollar grant for her groundbreaking  research and recent  DIPG discovery – I made an appointment.

 

Two weeks ago, my mom, sister and I walked through the doors of SickKids hospital once again.  Immediately, my stomach was in knots as we rode the glass elevator up to the 8th floor.  “The 8th floor” – a term that three years ago meant something different to me.  As a long time employee of Camp Oochigeas, “the 8th floor” is a term that I am all to familiar with as it’s mentioned multiple times a day.  It’s where the magic happens.  Where kids with cancer get to participate in camp programs led by my incredible co-workers who are so good at making kids smile.  Now, “the 8th floor” is where I was going to hear the results of my firstborn child’s autopsy.

 

As we sat in the same room that we did three years ago, when they delivered the news that the biopsy results confirmed that Stella did indeed have DIPG, I could feel myself going into “robot mode” for survival.  Stella’s Oncologist, Dr. Bartels and her pathologist, Dr. Hawkins were very gracious and spent an hour with us.  They answered all of the questions we had and they let us look at the scans from Stella’s MRI.  Yes, it’s true – that was the very first time that I laid eyes on her scans.  Survival.   In the days leading up to this meeting, I had prepared myself for the moment that we looked at scans of her brain.  I am still triggered by any images of the brain.  I was prepared to see the tumour.  I was prepared to feel sick and sad.  What I was not prepared for was the impact of seeing the outline of her face on the scan.  There she was, my beautiful little girl, with her turned up nose, defined chin like her Poppa, and her perfectly round head.  I wasn’t looking at a brain – I was looking at my Stella.  I swallowed hard, blinked the tears from my eyes and tried to suppress the overwhelming sick and sad feeling that was washing over me.  My sister snapped a photo of the scans and I later sent them to Stella’s Auntie Ray who says that the tumour looks like a monster.  She is right.  It does.  It was.

 

After peppering the doctors with questions, we learned that as it turns out, not only is Stella’s tumour being used in the DIPG research – her little brain is changing lives.

 

It is playing a significant role in the groundbreaking research that Dr. Hawkins is currently doing.  Dr. Hawkins has discovered that there are 3 sub-groups of DIPG.  Stella fell into one of those sub-groups.  Through recent learnings, they have been able to determine that there are certain types of DIPG tumours that will never respond to radiation.  This will allow doctors to tailor treatments to each child based on the type of DIPG tumour they have.  In laymans terms – kids with tumours that will not respond to treatment will potentially not be radiated at all.  Stella’s tumour is constantly being referenced and compared with other cases.  For many reasons, I find so much comfort in that.

 

 

So Stella – on this day, as my heart sits heavily in my chest, I want you to know that YOU are changing lives.  YOU MATTER.  I miss you every minute of every day and I’m so proud of the impact you’ve had on this world.

 

Mommy loves you big girl.

 

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