Searching for Stella

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Well, here I am sitting on the itchy, crumb-covered carpet at Great Wolf Lodge while the kids colour Power Rangers pictures next to me and Aimee watches CNN—hanging on to every detail of the upcoming US election (sigh).  It’s a slightly different scene every year, but the cast of characters never changes.  Me, Aimee, Gracie, Sam, Hugo, Auntie Angie (and, until this year, Juju— but she had to work) show up at the doors of Great Wolf Lodge to both celebrate and grieve the death of our beloved Stella.  As soon as the big glass doors swing open and we are greeted by the animatronic howls of wolves, we all feel a sense of deep sadness, as well as comfort.  Even though the outside world continues to change and move, Great Wolf Lodge stays the same.  We have been coming here for 7 years now and they serve the same bread pudding in the restaurant, tell the same jokes at the end of kids story time, sell the same t-shirts in the giftshop and have the same wallpaper on all the bathrooms in the entire lodge.  It’s incredibly comforting.  When you come here it doesn’t matter what time it is, what day, or what season, because inside it always smells, looks and feels the same.  Because Sam’s birthday is two days before Stella’s death anniversary, we are always here for his birthday.  He thinks that’s why we come.  We definitely celebrate his birthday while we are here, but it is also our escape from the sadness of “that” day— October 22, 2012.  We immerse ourselves in the chaos of noise, sugar and temper tantrums and wait for the day to pass.  All the while spending insane amounts of money on sparkly temporary tattoos, oversized cookies and cheap souvenirs.

As soon as Aimee and I start to feel the first hint of autumn in the air, we steel ourselves for that feeling of intense sadness that comes as Stella’s death anniversary approaches. It’s almost a relief when it’s over because the build up is so painful.  As each date passes, we are forced to relive those horrible last days which, although they were peaceful and full of love, were excruciating to endure.  October 1 was the last day we took Stella out for ice cream.  October 9th was the last day Stella opened her eyes and really responded to us.  October 11 was the day we thought she was going to die as she gasped for air and shuddered in our arms.  October 20th was Sam’s first birthday, and October 21st was Xavier’s.  Stella lay dying in our bed, her bony chest slowly rising and falling and we sang “Happy Birthday” to the little kids and held lit cupcakes in front of her motionless body.  The tears, which don’t come as often anymore, come easily around these dates.  I remember we went to the Funeral Home on Hallowe’en Eve to prepare for her funeral, and then the actually funeral was on November 1.  The following week we had her Stellabration at Riverdale Park.  The details of all those days play in my brain like an old movie.  No matter how I try to distract myself, the memories flood to the surface.  I have her little face flash in my mind when I’m unloading the dishwasher.  The last outfit Aimee and I dressed her in floats in front of my face as I wait at a traffic light on the way to work.  The feel of her soft skin on my chest as she slept next to me wakes me up at night, and it sometimes takes me a second to realize it’s Sam or Hugo that’s crawled into my bed, and not her. Sometimes when I make toast in the morning, I make two pieces of white bread and put honey on one, and jam on the other then cut them into 4’s because that’s how my dad served me breakfast every morning for a year while Stella sat on my lap.  When I wake up at night after uneasy dreams, I can’t remember if Stella’s DIPG was a nightmare, or really happened.  Then my eyes adjust to the dark and I see the paintings at the end of our bed with her footprints on it, and I remember that she really is gone.

It hurts every single time.

Now she’s been gone 4 years, which means she’s been dead longer than she was alive.  Yet the three and a half years she lived I can recall with great detail, whereas the 4 years that have passed since come to me in small chunks.  I can remember lots of things, but there are huge chunks of the last four years that are missing.  For example, I barely remember Hugo’s first year of life.  i don’t know what I did with him all day, I don’t remember when he first spoke, or walked, or got his first tooth.  I just know that he was 10 weeks old when Stella died, then suddenly he was 2 and I started remembering again.  I know I learned to drive and got my license, but I don’t remember any of my driving lessons.  I have forgotten how to cook my Nana’s scalloped potatoes.  But I can tell you exactly what I was wearing the day Stella got diagnosed.

I usually reflect as her death anniversary approaches what has changed in the way we live.  And as the years pass, the changes become more permanent and pronounced.

I recently realized that one difference in the time that has passed since her death is how I find her. When Stella first died, Aimee and I felt as though we really needed to hang on to her things. Each toy, every piece of clothing, each physical space that she had been in was a memory.  We couldn’t stand the thought of getting rid of anything that Stella had touched.

Recently, I’ve been trying to convince Aimee that we should move out of our home. I want to save money and get out of the city. I feel happiest up at the cottage surrounded by trees and water and where the boys can run and not have to worry about cars. I like the pace of life out of there. There is always time to stop an look closely at a turtle crossing the dirt road. The people who live there ask at the grocery store checkout how so and so’s mother is feeling and we spend time as a family reading books and doing crafts instead of being stuck in traffic. But when I talk to Aimee about moving, she always says, “I am never leaving this house. This is Stella’s house…how could you ever want to leave here?”. I have come to realize that Aimee still finds Stella in the walls of that physical space.  She can’t stand the thought of leaving the space that Stella was born into, lived in and died in.  And when she comes to Great Wolf Lodge, Aimee looks for Stella in the Cub Club and the Warm Pool, and she remembers her little yellow bathing suit and finds her in the shadows under the fake trees in the lobby.  But I don’t see Stella on the living room couch, or the splash pad at Great Wolf Lodge.  I don’t find Stella in her bedroom at home, or in her little pink teapot that still hang around the house getting played with once in a blue moon by the boys.  Aimee loves wearing the t-shirts or sweatshirts we’ve had made over the years that have Stella’s name and picture on them.  But I have to be reminded to wear them because although I like them, I don’t find Stella there either.

So I started to ask myself…where do I find Stella?  If not in her room, or her toys, or her clothes, or the house…where is she?

I came to the conclusion that because so much of me…my identity, my way of looking at life, my hopes and dreams…have changed since Stella’s diagnosis and death, I find Stella in the way I live my life.  I find her when I don’t get frustrated waiting in line at the grocery store because my cashier is “in training”.  I find her when I don’t have enough money to pay my phone bill, but I take the kids to Toys’R’Us and spend $40.00 on Lego.  I find her at work when a family I’ve helped hugs me after their Funeral and thanks me for making a difference for them.  I find her when I give the kids a second cookie after dinner, or let Sam wear pyjama pants to school.  I find her when I go for walks and take time to feel the sun on my face and watch an ant crossing in front of me.  I find her within me.  I have tried to take all the best parts of her and make them a part of me.  I don’t need to look for her in a physical sense anymore, because she is in every breath I take.

A few weeks ago, I ran into a very difficult situation at work.  After being told I was to be transferred to a new location, I had a concern regarding my new schedule and how it would affect my life at home.  “We don’t make business decisions based on personal lives,” I was told.  Any questions I asked were either ignored or answered with “that will be decided once you are at the new location”. I was frustrated beyond belief, and that’s when I found Stella.  Because as I was sitting in that room, listening to someone tell me that my family took second place to my duty as an employee, I got a moment of intense clarity.  There is nothing more important to me than time with my family.  I’d rather sell the house and live in an apartment than work a job that keeps me away from birthday parties, thanksgiving dinner, the Christmas Eve church pageant and my kids weekend soccer games.  Becoming a Funeral Director has made it abundantly clear to me that tomorrow isn’t guaranteed for anyone.  If we are lucky, we get to live to a ripe old age, but even then it is someone’s parent, sister, friend, aunt who dies.  And out of all the eulogies I’ve listened to, they all boil down to the same theme— the good times the deceased spent with the important people in their life.  What is the purpose of living a life where we forget the things that truly matter?  So even though it would make more sense for me to find Stella at the playground she used to love, the Dairy Queen I walked her to, or the yellow monkey shirt of hers Sam sometimes wears, I actually found her in a sterile funeral home office during an intense and difficult conversation.  It reminded me of a saying I read a long time ago on a card that said, “She will never be there when you want her, but she will always be there when you need her”.

Sometimes Aimee and I talk about how even though the time after Stella’s diagnosis was the worst time of our lives, it was also the best.  Because we had no purpose in life other than to be surrounded by the friends and family who meant the most to us.  And even though it is not possible to live a life like that every single day— obviously we need to work and clean and cook— I never want to forget that the most important thing in the world is spending time with the people you love.

So even though I could say that I find Stella on this itchy green carpet at Great Wolf Lodge, I think I really find her in my conviction that the one thing you can never get back, is time.  Whenever I want to find her, I just look for the part of myself that is braver now, surer now, and is letting her kids stay up past their bedtime right now because, hey, we’re at Great Wolf Lodge and Stella would have wanted it that way.  And yes, Stella, we will be having ice cream for breakfast tomorrow.

xoxoxox

We stopped at Stella’s tree on our way to Great Wolf Lodge to bring some flowers and Timbits (Hugo, Mishi, Gracie, Andge & Sam):

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Violet brought Sam his birthday cake at Great Wolf Lodge:

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The first day of school…Issac, Mishi, Sam, Hugo & Xavier:

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Stella’s little brothers… 4 and 5 already!

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We wish we could see Stella in person, instead of visiting her grave at Necropolis Cemetery, but Sam always finds her plaque and gives it a little kiss:

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Missing you sweet girl

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Five Years

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I can’t believe it’s been almost 3 months since my last blog posting.  Time is such a funny thing.  Sometimes the days and weeks pass so rapidly now that I feel like I barely have time to breathe.  I flip the pages on the calendar in the kitchen and can’t believe it’s been another week…month…season…year.

After spending so much time in what felt like a vacuum where time was meaningless and the only thing that mattered in life was whether or not Stella was still alive that day, I still feel frustrated sometimes by how everything just keeps spinning and we have to run to catch up.  It’s made me think a lot about the whole idea of time and space and grief.  Is it that time really softens the pain, or is it that the world doesn’t give us the time we really need to grieve and remember?

June 24 marked 5 years since the day Stella was diagnosed with DIPG.  It’s a horrible anniversary.  A piece of me died that day, and even though Stella lived for another 16 months and taught me the true meaning of life as she did it, for Aimee and I June 24, 2011 is the day that our future was ripped from our hands and hearts and lay bleeding in front of us.  We didn’t do anything organized to mark the date.  We both cried a lot, and Aimee took the day off work and spent most of it by herself at the Eaton Centre doing shopping therapy., followed by a solo visit to Stella’s tree.  I worked, going to a Catholic Church that day and helping another family say farewell to someone they loved very much and trying not to think about what the day meant to me.  I avoided looking at the clock as much as possible to stop the persistent memories from flooding my brain about what had happened that day 5 years ago at 7am…9am…2pm…etc. etc.  It worked for the most part and Aimee and I got through it with an almost familiar pattern of me trying to forget and avoid the pain of the day, and her needing to feel it.

When I woke up that morning, I thought about how strange it was that this combination of dates was so painful to Aimee and I, yet reflecting how no one else would remember it.  I was shocked when barely into my morning I received a text from my friend Sheri who wished me strength on the day.  Then I got a phone message from my friend Omo and a text from Tasha.  Later my sister Heather showed me a beautiful message my 20-year old “tough guy” brother had posted on Facebook commemorating the day which many others had commented on or “liked”.  I couldn’t believe that people remembered and even though I didn’t really speak to anyone about that day directly, knowing that I wasn’t alone in my grief, knowing that even 5 years later Stella is remembered, was like having a warm blanket pulled over my chilled body.  It was truly touching.  I don’t expect people to remember— Lord knows I remember nearly no dates that are important to my friends— but that day I felt so much less alone than I had expected.

Thank-you for that unexpected gift.

I can’t believe it’s been 5 years since that horrible day.  I can’t believe Hugo is almost 4 and Sam will be turning 5 in the fall.  I can’t believe how unrecognizable my life is.  Slowly Stella’s stuffed animals and tea party set and puppet show and doll stroller have been pushed into the corners which are now overtaken with trains and superheroes.  I know the names of all 6 Power Rangers and can tell you the “secret identity” names of Superman, Spiderman, Batman, Robin, Wonder Woman and more.  I know who Jayna and Zan are.  I am aware of the secret powers of Flash, Green Lantern & Hawkman.  I can have a semi-intelligent conversation about how Lex Luther and Brainiac and Cheetah keep trying to take over the world with their high tech computers and why they keep failing.  Sam plays T-ball and rides his bike incessantly.  Hugo loves to be in the water and wrestling with cousin Xavier.  And sometimes I sit at my desk at work looking at a file and don’t understand how I went from taking minutes at meetings about early psychosis intervention pre-2011, to calling families up and asking them to please bring in a scarf for their loved one to cover the embalming scar.

My sister Heather had a baby at the end of May.  A perfect little boy (named Isaac).  My brother Tristan graduated High School mid-June and he remarked on that day that my son Hugo was born just as he started High School, and now Isaac was born just as he was finishing it.  How is it that life has so many endings and beginnings?  I feel like everything is just moving so quickly and I have to work harder and harder to remember the lessons of Stella about appreciating all the little things and taking time to be in the here and the now.  Sometimes when I’m standing at a grave and the Priest is doing the final committal instead of listening to his words, I try to take in all the tiny things around me.  I concentrate on the subtle pattern my high heels made in the grass as I walked to the grave, or notice how the slight breeze lifts the pages of the Priests book as he reads.  I try to be aware of the warmth of the sun against my cheeks and try to spot the ant crawling around the tombstone.  Only in those moments can I really feel like I’m “there”.

It’s hard to put into words what the long-term effects of such a deep grief are.  How changed I am from the inside out.  I’ve found a way to be happy, worked hard to find the JOY that Stella challenged us to find.  But I’m totally different now.  I can understand how easy it would be for peoples marriages to dissolve after the death of a child because you’re not married to the same person anymore.  Aimee and I have found a way to hold each other up through mutual respect and understanding of our individual needs.  But I’m certainly not the same person, or parent.  I’m lackadaisical… to a fault some people would say.  But I don’t care if the kids wear pyjamas to school or if they strip down to their underwear and jump into a local wading pool on a whim.  I don’t stop them from splashing in mud puddles (even when they are in clean clothes).  I’ll buy them freezies from the store even if they didn’t eat all their broccoli and let them stay up past their bedtime watching movies with me in bed at the cottage on a Saturday night.  If I drip water on the floor, I usually don’t even notice.  I prefer paper plates at Christmas so no one has to spend time doing dishes.  As an employee I’m not likely to volunteer to work overtime, and try to get out of night shifts anytime I can so that I can be with Aimee and the kids as much as possible.  I’m a lazy friend, I never cook (though I love to eat what other people cook!) and I sometimes wear pyjama bottoms and flip flops to the corner store.  In order to survive I’ve had to cut out all the things my brain believes are unimportant…random rules that society sometimes puts out that I just can’t get behind.  I’m sure I’m pretty frustrating to be around for a lot of people.  However, I truly feel less stressed than I used to be and more true to how I want to live my life.

Sam and Hugo were talking about Stella the other day.  They do that sometimes.  Sam was telling Hugo that they never get to see Stella.  They were speaking about her in the context of Isaac.  Auntie was going to have a baby and they waited and waited and now he’s here and they can see and feel him.  But Stella…we celebrate her birthday, we talk about her all the time and they see pictures and her toys, but not her.  They are frustrated by it and even as I said the words, “Yes, you will never ever get to see her with your eyes because she died” the words felt so horribly final to me.  Sometimes I feel like I would do anything just to smell her forehead one more time, or wrap one of her curls around my finger.  It breaks my heart to watch videos of her talking and saying “Momma” to me because the 2-dimensional version of her is not what I wish for.  So I just don’t watch.  I protect my heart by only pushing myself so far.  It’s not denial, but it’s a protective coating for sure.

Now that the dreadful date of June 24th is over, I’m very aware of the summer and all its joys.  I love spending time up at our cottage with family and friends and I never feel as happy as when I’m jumping into the lake with the kids and we all screech with delight at the first feeling of cool water and sunshine on our faces. Five years ago it hurt so much to wake up in the morning, I didn’t want to get out of bed and face the reality of my day.  Now I laugh with pure happiness when I get splashed in the face by a water blaster.  I can still easily get caught in the net of grief and the darkness of all the “what if’s”, but I try not to.  I really believe that Stella lived her short life in a way that I would love to match.  One day at a time, one challenge at a time, and always with a huge smile.  She taught me that there’s always a reason to smile, you just have to find it.

Two of my biggest reasons to smile, Hugo & Sam:

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Welcome to the family!  My sister’s son Isaac Elliott was born May 27, 2016:

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The three musketeers…Sam, Hugo and cousin Xavier spend a lot of time together:

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Big cousin Gracie (she’s 8 now!!!) is still looking after all the boys, still remembering her beloved cousin and BFF Stella:

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Stella at 11 months old.  I can hear her laugh in this picture…

Week 43

 

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STELLA – REMEMBERING YOU FROM GREAT WOLF LODGE! (By: Aimee Bruner)

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On this day, Stella, we’ve taken our heavy hearts, flip flops, damp bathing suits and all the junk food and caffeine we could ever wish for and we’ve headed to the water slides at Great Wolf Lodge.  We are here – remembering your smile from your favourite place on earth.  We are together, surrounded by love, screaming children and the smell of chlorine.  Today, we will go to the “club club”, swim in the hot pool and rip down the water slides, thinking of you with every step we take.  Being in this place that you loved so much is so familiar and comforting to me.  When I think of the last time that we were here with you, my heart breaks at the thought of you not being able to move.  We carried you everywhere and spent almost the entire time we were here in the hot pool.  You loved it.  In fact, if I allow myself to stay present in that memory – I can almost feel the grin on your face.  You smiled the whole time.  Whenever we asked you if you wanted to go here or go there, you made sure to stick that tongue out to let us know you approved.  I would give anything to be able to hold you in that hot pool again.  Right now, your brothers and cousin Gracie have taken off to your beloved “club club” with your mama and Auntie Andgie.  I couldn’t bring myself to leave the hotel room without writing you this note.

Xavier, Auntie Heather and Poppa will be here tonight to cerebrate Sam and Xavier’s 4th birthday and even though my heart aches without you here – part of me is so happy to be in this place, remembering you.  The sight and smell of the lobby, which is to most adults – completely offensive to the senses, gives me butterflies when I enter it.  The talking bear and moose, the over indulgent gift shop, and the howling wolf always manage to ignite a slow grin on my face.  I will never forget pacing the hallways, staring at the patterned carpet at 5am just to keep you occupied, when we brought you here for the first time.  You were so little.  I want to go back to that time.  I know we can’t though, so instead, I will put on my cold, damp bathing suit and head off to the water park – that place that made you smile more than anything else could.

I can’t believe it’s been three years today since you died in our arms.  We miss you everyday.

I love you big girl.

Mommy xoxo

A MESSAGE TO THE WORLD: DON’T FORGET TO CHOOSE JOY, EAT CHOCOLATE TIM BITS AND HAVE ICE CREAM FOR BREAKFAST TODAY!   STELLA SAYS – YOU’RE WORTH IT;)

Stella at Great Wolf Lodge, June 2012:

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Sam, Hugo and Gracie at Great Wolf Lodge:

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We visited Stella’s tree and left her some Hallowe’en treats:

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

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

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

I remember all of it and it makes me sick.

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

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

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

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

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

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

Love,

Mommy

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Stella the day after she was released from hospital

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Sam & Hugo, Stella’s greatest legacy:

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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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