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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Happy 7th Birthday Angel

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Today, if things were different, Stella would have turned 7 years old.  Probably would have been missing a tooth or two.  With long hair past her shoulders, and a cheeky grin.

Not having her here hurts.

For some reason, this year the memories are sharper and clearer than they have been in years.  Each day leading up to her birthday is haunting.  April 15th was her due date.  I remember going swimming with my friend Deb that day.  I remember how amazing it felt to float in the weightlessness of the water with my 9-month pregnancy belly and how I was almost shaking with anticipation and excitement.  At that time we didn’t know if we were having a boy, or girl so I practiced writing both names we had carefully and lovingly selected on my notepad…

Evan Lawrence Bruner-Methven

Stella Joy Bruner-Methven

Which would it be?  I couldn’t imagine.

I remember on April 16th I was only one day past my due date, but I was despairing that I was never going to have this baby.  I had already been off work for 2 weeks and I was bored and impatient.  In a desperate attempt to entertain myself, I looked up recipes online of things that could be frozen and I decided to walk over to Sobey’s to purchase some ingredients.  I bought green peppers and ground beef and when I was walking home, I could feel liquid dripping down my legs.  I called my midwife and she told me to come in.  2 hours later I called Aimee at work and said the magic words…”my water broke”.  I still wasn’t in labour though, so Aim and I went to her dads for dinner.  We toasted each other with glasses of red wine and thought about what was to come.

April 17th I very slowly started to labour.  At first it was almost comical.  I sat in a big chair and listened to my “Hypnobirthing” CD.  The tiny insignificant first ripples of labour I thought were “it” and was proud of how I was handling the “pain”.  Ha!  First time ignorance.  Aimee and I walked and timed contractions, but it was slow going and everything that felt like it was “true” labour wasn’t really.  When you’ve never been in labour, I guess you don’t really know what it is.  Hours and hours of small tugs weren’t labour.  When full labour finally hit me, it was ugly and I wondered how I could ever have thought when I was sitting in the chair with my eyes closed meditating that I was in labour!!!  Real labour was horrible.  Back pain that brought me to my knees.  Thrashing and screaming and vomiting.  It wasn’t until almost midnight on the 17th that things got bad enough to go to the hospital.  My dad drove, my mom sat in the front seat and Aimee was in the back with me.  It was on that van ride that I realized Stella was gong to be born on my birthday.  I couldn’t think of a better way to ring in my 30th birthday than giving birth to our baby.

It was a long, difficult and extremely painful labour.  Stella was born at 4:10pm on April 18th.  I think Aimee said, “it’s a girl!” and though my heart was full of joy, all I could say was, “I’m going to throw up” and I promptly began vomiting as the midwife stitched me up.  Not exactly a Hallmark moment, but fairly indicative of what parenting is like.  Messy and hard.  Not very glamorous, full of ups and downs.  But, if you pay attention, a myriad of exquisite, unexpected gifts.

That was an amazing day.  I turned 30 years old and became a mother all in one breath.  My daughter burst into the world, with porcelain skin, bawling-face, fists waving and a shock of red hair that made everyone laugh in delight.  There were 10 people in the room as she was born.  Two midwives plus my DeeDee, Poppa, Auntie Heather, Tutu, GrandPa, Auntie Angie, Nanny and Aim’s best friend, Ray.  Sometimes when I picture that happy scene of her birth and her first breath, it overlays a heart-breaking scene 3 1/2 years later when she took her last breath, surrounded by almost exactly the same group of people that stood in a circle and witnessed the miracle of her birth.

Sometimes it feels like all my memories overlap.

A sea of crying faces at her birth.  A circle of sobbing at her death.

Choosing the outfit she would come home from the hospital in.  Choosing the outfit she would be cremated in.

A myriad of candles lighting up the night at our wedding. A path of flickering candles as we carried her body out the door.

Taking photos of her face covered in icing, eating her birthday cake with a “1” flopped over. Taking photos of a tree in the park with a candle that says “7” on it.

Up at night because she cried. Up at night because we cry.

So how do you celebrate the birthday of your first born, when she’s not here?  Funny how we’ve fallen into a routine.  Visit her tree then run away to Great Wolf Lodge.  As always, a mixture of wanting to remember her in her favourite spots, but also needing to try to forget by distracting ourselves with the noise and activity and complete sensory overload.  I have been missing her so much these last weeks.  I always miss her, but I find that as the boys get older and more “boy-like” with burgeoning interests in super heroes and sports, I retreat further into my fantasies of having a daughter.  That’s one of the cruelties of her death, not knowing exactly what she would have been like, what she would have liked or disliked, leaving it all open to speculation and dreams.  And suddenly, I’m seeing little girls everywhere and each one is like a dagger to my heart.  I’m sure there are just as many little boys around, but it’s the girls that have been making my chest hurt.  I suddenly feel like everyone around me has a daughter.  Two nights ago I started to rattle off to Aimee the names of all of our friends and said, “they have a daughter…they have a daughter…they have a daughter…”.  Out of 15 friends I named, only two had no girls.  It suddenly felt momentously unfair to me.  I suddenly felt so jealous that I wanted to scream and rage.  Admitting these feelings is hard.  I don’t like the way they make me feel.  it’s embarrassing.  I confided in one friend a few weeks ago that I wanted my girl back and she said something along the lines of, “But you have two beautiful and healthy boys!”  I immediately felt ashamed of myself for saying anything at all, then angry that I was ashamed.  Having two healthy boys whom I love with all my heart and would do anything for, doesn’t mean that I still can’t mourn the daughter who died, and the fact that I no longer have a little girl to love.  But it’s hard to admit that to people.  Hard to make them understand.  Of course I’m grateful for my sons.  Of course I am happy with them and can’t imagine life without them.  But that doesn’t mean I still don’t miss my girl and feel bitter for everything that was taken away from us.  It doesn’t mean that I don’t feel sad when I see little dresses with crinoline and pink Dora crocs or that I’m not jealous of the little girls in mini blue jeans and pink sunglasses toddling around at the park.  Grief is complex and I’m constantly trying to understand why I act and react certain ways to things.

A family that I served 8 months ago called me Friday.  The woman had lost her father at age 87.  She called to tell me how much she was struggling.  That she was “still” so sad.  She knows about Stella and said that she didn’t know how I did it.  That I’m so strong.  She kept saying that she wouldn’t be able to live if her daughter died.  And that she was embarrassed to still be in such a funk about her dad because, after all, he was old and led a full life. She asked me what my secret was.  I told her my dad always says, “secret weapon…no choice”,  but I also didn’t want her to think that I’ve just risen above grief and grieving.  So I told her the truth.  I said, “What you’re doing is hard.  There’s no timeline.  There’s no magic cure.  I’m on meds.  I take medication everyday for depression and anxiety”. I wanted her to know that even though I’m happy, I still need help.   I’m not ashamed of it.  When I wake up each and every morning, I make a deliberate choice.   I choose to be happy.  I choose to find JOY because I know that is how I can keep Stella alive.  I truly believe that when we are forced to live without someone we love, we need to take a small piece of them and inhale it so deeply it enters our pores and becomes part of our own breath and body.  So I breathe Stella each and everyday.  I breathe her spunkiness.  I breathe her willingness to find joy in small things.  I breathe her inability to be anything but herself.  I breathe her bravery and her cheekiness and her tinkling giggle.  I use the breath I have to parent her brothers with as much understanding and love as I can.  I use it to help the families I serve.  I open my heart a teeny tiny bit to each and every grieving family that sits in front of me and tells me that they have lost someone they love.  I still hurt, but I choose to live.  I keep a yellowed cut out picture of a card I got once.  It’s a dry, dessert scene with a tiny flower growing through the cracked dirt.  And it says, “There are defining moments in a life, when faced with the choice of giving up, or going on”.

That card is taped on the inside of our kitchen cupboard.  Every morning when I get up and I open the cupboard to get my teacup out, I read it.  And I make the choice.

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Choose life.  Choose joy.

In Niagara Falls tonight, Gracie (8 years old already!) wore her Mommy Juju’s wedding dress to dinner.  She looked so beautiful and grown up in it.  It’s a burgundy and cream sundress.  It made me remember my wedding to Aimee.  I remembered the poem that was read that night, 10 years ago this August.  It was a warm summer night.  We had lit the backyard with dozens of flickering candles.  At the time, it was the poem that best reflected the love Aimee and I felt for each other.  But tonight, I thought about the fact that it is for Stella too.  And I read it out loud and wept.

Happy Birthday my beautiful girl.  Despite everything…I’m so glad you were born.  Stella Joy Bruner Methven, April 18, 2009.

i carry your heart with me

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i carry your heart with me (i carry it in

my heart) i am never without it (anywhere

i go you go, my dear; and whatever is done

by only me is your doing, my darling)

                                  i fear

no fate (for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than the soul can hope or mind can hide)

and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

And I do.

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Sam lays some flowers at his sister’s tree for her birthday:

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Having a great time at Great Wolf Lodge 

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Every Friday night is pizza night and “Family Movie Night”.  The boys love it! (Xavier, Sam, Hugo)

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5:18am

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5:18am and I’m sitting at the airport waiting for a flight to Kentucky so I can further my training as a Funeral Director by becoming involved in something called “Life Well Celebrated”.  Due to poor weather in Toronto, I missed my connecting flight to Kentucky last night and spent all night in the airport.  Armed with a thin blanket and $10 food voucher (thanks United!) I have spent the last 12 hours in relative quiet.  And the same thought keeps going through my head… how did I get here?  Not just here at the Washington airport, but here… in this life.

While trying to sleep last night (a task made nearly impossible by the hard seats, 24-hour blasting of CNN on multiple television sets, bright fluorescent lights and cold air being pumped in from somewhere), the last 7 years of my life kept playing in my head like a movie reel.  Stella’s birth.  Her first steps.  First birthday.  I remember who was there, what we all wore, the songs we sang.  I think about her special Easter dress, I remember her diaper bag in great detail.  The way her forehead smelled.  The way she laughed and ran away.  Like a scratch on the DVD, my brain skips over the diagnosis part of her DIPG and settles in on ice cream for breakfast and trips to cottages and Riverdale Farm.  I remember the puppet shows in the living room, walks to the park and trips to the grocery store for avocados.  Somehow the pictures in my brain erased the morphine pump and chapped lips.  Sometimes I don’t know if my memories are real or just a combination of photographs we have and stories that have been told and retold until they are almost fables whose message is clear, but whose details have been changed somewhat so that the truth lies somewhere between the lines of the story.  Her story has been retold so many times, in so many ways, to so many different people.  But still I know that I am the only person in the entire world that knows what it was like to hear her call, “Mama!” from her crib at 5 a.m. and then greet me with arms outstretched and a big smile, floppy curls framing her blue eyes like a porcelain doll.

Aimee has been bugging me to write on the blog for weeks.  Months really.  My dad too.  No one else really mentions it though.  Sometimes I don’t know why so much time passes between blog entries these days.  Part of it is that we live in a state of constant exhaustion as we try to navigate the age-old tasks of working full time, parenting, going to school part-time and trying to maintain relationships at the same time.  There are days I write entire blog posts in my mind as I drive to and from work, but by the time I get where I am going, the tiredness sets in and I find myself unable to type even one word.  My new identity as a Funeral Director is wonderful, for the most part.  I really feel like I have the opportunity to make a difference but it is gruelling at times.  Aside from all the details… music, food, speeches, clergy, cars, maps, flowers, caskets, candles, bodies, cosmetics, etc. etc. there is an emotional weight that comes with every family.  Sometimes the family reveres the funeral director, other times they loathe them.  Some regard us with quiet awe, others think we are blood-sucking salesmen trying to prey on them in their hour of need.  But regardless of how others see me, I try to give each and every family 100%.  Which can be totally exhausting at times.  Sitting with them as they sort through decades of family dynamics that seethe just under the surface, trying to keep them focused on the tasks at hand, but knowing that the 20-year old sibling rivalry sitting across from me will eventually boil down to, “does mom prefer yellow or pink roses for her casket spray?”   I love it, but it’s sometimes hard to balance.  There have been many nights— too many recently— where I have needed to miss bedtime snuggles and family dinner because I had to work late.  But Aimee and I are managing.  We are learning together, and separately.

A few weeks ago Aimee drove Hugo and Sam past the place we got married almost 10 years ago.  This led to a discussion about what it means to be married (after a long explanation, Sam summed it up perfectly by stating with complete certainly, “getting married means you are going to stick together”).  Since that day, the boys have asked about our wedding and so finally I dragged out the wedding album.  As I flipped through the photographs I barely recognized the people captured that beautiful evening.  My heart aches when I see the youthful optimism we exuded.  We had no idea what was coming, how could we have known?  Many of the people that are in the photos from that night are still with us, still very much the foundation that holds us up each and every day.  Others have disappeared completely from our lives, casualties of time or space or change.  Even death.  I used to love looking at my grandparents wedding album.  Tracing the outlines of the faces I knew, but when they were younger and full of the unknown of what life would bring.  I did the same to my own face now.  Remembering when the hardest decision I had to make was whether to choose Belize or Costa Rica for our honeymoon destination.  When I look in the mirror, I don’t think Aimee and I have changed that much in the near decade since our wedding.  But when I look more closely I can see a few more wrinkles now.  Grey hairs popping through.  An extra 15 pounds on my frame.  But most of all I look at the photos and see our eyes.  Shining, glowing, so full of hope and optimism.  The world was at our feet.  It still is in many ways, but now we step more gingerly into the future because we know nothing is certain.

I have needed to mould my life and my grief into something I can tolerate.  I need to be deliberate about it.  For example, I can talk about Stella to anyone and everyone, but I will not allow myself to look at photos of her on the computer, or watch videos.  I will not allow myself to fantasize about what she would look like or be like had she lived.  It makes the loss too real.  I have learned the hard way that letting myself go there is like a rabbit hole of grief from which I have to claw my way back out again.  So I make a choice to keep myself at the edge of that place.  I balance tenuously, and on the occasions that Aimee tears up and says, “I can’t believe that happened to us…” and begins watching hour after hour of video, or thumbs through thousands of digital photos on the computer, I manage only a cursory, “I know” and then leave the room.  It may seem cruel to her, I don’t know, I’ve never asked.  But it’s the only way I can protect myself from going to “that” place again.  The fear of teetering one step too far and plunging back into the darkness of painful anxiety, grief and depression keeps me at arms length sometimes.  When I start to feel myself losing my balance on the edge of the black hole, I pull myself out by willing myself not to remember.  Maybe it’s not the healthiest thing to do, but I need to survive and that’s how I’ve figured out how to do it.

On the outset, Aimee and I and our families have healed well from our journey with Stella.  But we all still carry the deep battle scars and sometimes speak very slowly and deliberately with each other so as not to disturb the careful scabs that are covering gaping wounds just beneath the surface.  We have all changed.  So drastically.  And it’s sometimes hard to reconcile the people we were then compared to the people we are now.

Our boys, Hugo and Sam, are thriving.  Both perfectly healthy, happy little people who are allowing Aimee and I to live out our dreams of parenting.  They are both older now than Stella was when she died.  Stella’s friends will all be turning 7 shortly.  They are so far removed from what they were when Stella was alive that it is hard to reconcile they are the same.  They have lost their front teeth, entered French Immersion school, ice skate, play musical instruments.  Age 3 & 4 where our boys sit, and age 7 where they are, seem like light years apart in kid-time.  We have stopped trying to run and catch up because we realized that we never will.  Our friendships have changed as well.  They are not lost, but rather reimagined.  We see people less, but the bond is still there and still strong.  While our friends kids are being shuttled to various organized activities, we are still building forts from sheets in the living room and visiting Riverdale Farm.  The boys are so different.  Different from Stella and different from each other. They are not babies anymore, but becoming fully formed humans with their own strengths, weaknesses, fears and dreams.  They have a strong relationship with each other, and with cousin Xavier and cousin Gracie.  They accept that Stella is their sister in a way that is so natural and pain-free for them.  They draw her pictures and sometimes tell me that they love Stella.  They include her in their recitation of who is in their family.  And when we go to Riverdale Farm, along with visiting Stella’s bench and tree and stinky pigs, they have taken to enjoying visiting the cemetery across the street where Stella’s official “grave” is.  They especially love to run among the stones on the ground, and then enter into the small, victorian chapel that sit on the premises.  There, they gleefully slide into hard wooden church pews and then I go to the front of the chapel and we “play” funeral.  They prompt me from their seats and shout things like, “don’t forget to say we love and miss you Stella!”.  I give my funeral “speech” and then they applaud happily.  It’s heartbreaking and heartwarming all at the same time.  A childish game that carries so much weight with it.  But I have to admit, I get strangely giddy when they ask me if we can visit the cemetery and play.  Because in my world where death is more than a preoccupation, I relish sharing some of the feelings of peace and, yes, even enjoyment, that a funeral can give to someone.  I love that the children along with playing lego and superheroes have an interest and reverence in our death rituals as well.  It’s a funny feeling.  A wry pride.

My fears of Stella being forgotten have abated somewhat.  When I get chided for not writing on the blog, people tell me that no one will come visit anymore, no one will remember her if I don’t keep writing.  Two years ago, I would have agreed but now I have come to a tacit understanding with the universe that those who remember Stella, will always remember her and those who don’t, probably never would have anyway.  And I can’t be responsible for the big or small ways in which her life affected others.  I often think it’s similar to the job I do as a Funeral Director.  For a moment— a few days at most, I am important to a family.  I am their link, their connection to the loved one they have lost.  We work closely together, we share highly charged, emotional moments.  And then, when the funeral home services are no longer needed, they disappear.  But for a moment, I was there.  And I helped them.  It’s a mutual relationship as each family stays with m somehow.  Teaches me.  Even if it’s just for a second.  Even if they are meld together into one big funeral, and their names become unfamiliar to me.  For a moment, I was changed by them and the thousand tiny changes all combine to make bigger change.  One day at a time, I am still learning to live, learning to cope in this world I now see from a different lens, and in my new role of being a bereaved parent.

And I still grieve, everyday.  The tears don’t come as often, the tightness around my heart has loosened, but that sense of cavernous loss has not dissipated.  Stella and her short life are integral in every aspect of my life.  When I breathe, it is her breath that enters my lungs and permeates my soul.  When I smile, it is the noise of her mouth smiling that I hear.  When I hold someone’s hand, it is her hand that I see.

As I get ready to board the plane to Kentucky now, I am struck by the irony of what I am doing.  Flying halfway across the continent to learn how to effectively commemorate a life through funerals. “Life Well Celebrated” is the name of the training.

I’m excited to be going, the funeral geek in me thrilled to share ideas with other funeral professionals on unique funeral ideas and experiences.

But I don’t believe we can use funerals to make a life memorable because, as the saying goes, the true way to never be forgotten, is to first live a life worth remembering.

Like Stella did.

Our boys are growing and changing each and everyday.  My greatest joys are seeing them grow into their own people, and watching their relationship with each other as well as Gracie and Xavier:

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Remember when. June 2011:

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October 22, 2014

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It’s 3:09am according to the blinking light of the alarm clock at Great Wolf Lodge.  Neither Aimee nor I can sleep, plagued by bittersweet memories of the life and death of our precious girl.

Dates are hard.  Hard because on specific ones, you can remember exactly where you were and what you were feeling.  Two years ago today Aimee and I were broken as we held Stella’s frail, failing body in our arms while she gasped her last few breaths on this earth.

October 22, 2014.  A date that seemed a lifetime away on that afternoon two years ago.  But now…almost suddenly…here we are.

Last year on the first anniversary of Stella’s death, we gathered around her tree at Riverdale Farm with family and ate chocolate titbits, lit candles, cried, laughed, remembered.  This year we thought we would do something for the boys.  Always remembering that Sam’s birthday is less than 48 hours before Stella’s death-date, we decided to acknowledge both dates by going to Great Wolf Lodge.  Stella’s favourite away-from-home destination.  We calculated that she came here 5 times in her short life, which is more than most people probably come here in their entire lives.  The last time we were all here together was when I was 9 months pregnant with Hugo (I gave birth 3 days after we returned—talk about cutting it close!).  Stella lived another 12 weeks after our last trip here.

We arrived yesterday, after making a stop at her tree in Riverdale Farm.  The boys visited all her favourite animals, told the pigs they were stinky and then laid their “offerings” at the foot of her tree— flowers from Hugo, a gourd from Sam.  Then we stopped at Tim Horton’s for chocolate Timbits and drove straight to Niagara Falls and Great Wolf Lodge, met Gracie and her mommies and unleashed the children on this world of excess that Stella loved so much.  The boys love it here.  With big cousin Gracie showing them around, they ran up and down the halls, splashed in the water, whooped it up down the slides, danced around the lobby and ate massive bowls of vanilla ice cream with sprinkles on that melted down their chins and stained the front of their pyjamas.  They were still awake at 10:00pm last night, unable to calm down from all the excitement.

So today, we will mourn and celebrate our little girl at a place that gave her much happiness in her life. We will miss her but we will watch her brothers laugh and live and also feel lucky for all the blessings in our life and the family and friends who supported us then, and continue to think of us and support us now.

And to anyone reading this…remember, this is the day that you eat ice cream for breakfast and feed yourself and your children chocolate Timbits!  C’mon…the wilder and crazier everyone gets from the sugar, the happier Stella would have been.

A Timbit Toast to everyone there in cyberland.  Thanks for remembering our little girl.

We miss you Stella.

 Hugo and Sam bring their gifts to Stella’s tree in Riverdale Farm:

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Great Wolf Lodge! (not good pics as it’s been a whirlwind and they are too fast to snap pics of!)

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Dinner at Great Wolf Lodge:

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Bedtime movies with Gracie and Sam at Great Wolf Lodge: 

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Stella’s last trip to Great Wolf Lodge….July 30, 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.

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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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