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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Team Stella Stars!

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Team Stella’s Stars is All Geared Up and Ready to Ride for YOU Stella!

We’re ready Stella.  Your Auntie Juju just bought a bike.  That’s right.  She bought a black bike and she’s clipped in – just for you.  Fred has been sitting on our mantle all year, right beside your Dora doll and the Stella doll that looks just like you.  In less than two weeks, I will take Fred off of her perch and carefully pack her in my bag along side of the chicken that you used to torment me with.  I have the velcro that we’ll need to adorn our bikes with photos of your beautiful face and ties to secure Fred and chicken to our handle bars.

We’re ready.

We’re ready to push ourselves far enough out of our comfort zones that we wonder if we’ll ever come back and we’re ready to tax our bodies beyond imagination.

We’re ready to ride for YOU.

There’s something about this ride that makes me feel so close to you – like you’re here with me.  Second only to the feeling I get when I stand in the door way of your room, which is now your little brother Hugo’s room.  The first time I did this ride it had only been 10 months since you died in my arms.  It was the first time in two years that I felt strong – physically and emotionally.  I was so proud to wear your face on my back.  Proud, comforted and sickened all at the same time.  Never, in my worst nightmares, did I ever imagine that it would be me who was wearing a shirt with my dead daughters face on it.  That was always someone else – the parent in that tragic story I read about on the front page of the paper – and now that person was me.

My Stella’s Stars jersey’s are folded, clean and ready.  Your Auntie Juju and I can’t wait to throw them on and join hundreds of other riders in pedalling our hearts out to do something that’s truly extraordinary – send kids to camp.  The funds raised from this incredible ride go towards making kids lives better.  Kids just like you, Stella, will get the chance to experience the magic of camp.  They’ll get the chance to realize that they’re not alone.  They’ll have the chance to make friends and to have fun.  You would have loved camp – I just know it.  From the day you were born, I had it all planned out.  You would go to Camp Tanamakoon when you were 7.  That day never came and there is a special place in my heart for the loss of what could have been.  I never had that chance to send you to camp but this bike ride gives me the chance to help send kids just like you to camp.

So this week, I will clean my bike, pack my gear and wait patiently for August 14th to arrive.

I know you’ll be sitting over your shoulders cackling your head off all the way as we huff, puff, spit and sputter our way up the endless hills just hoping that one of us will fall – something that I know you would find more humour in than anything on earth.  When my legs ache and my throat burns and I don’t think I can make it up one more hill – I will think of you.  I will remember the look in your eyes as you used your whole body to try and muster up the strength to stick your tongue out to communicate the word “yes”.  I will remember the day that you taught yourself to hold a paint brush between your teeth when cancer stole your ability to use your hands.  I will remember the sound of your laugh and I will remember what it felt like to hold you in my arms.

On August 14, 2015- I will ride for you big girl.

Please help give kids like my Stella the chance to go to camp by sponsoring our ride!

To donate click on the following link:

https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2697865&langPref=en-CA&Referrer=%26Referrer%3dhttp%253a%252f%252fwww.tourforkids.com%252fontario%252fdonate%252f#&panel1-1

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April 18, 2015

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Stella would have been six years old today, April 18th 2015.

There are some “days” in this journey of grief that are harder than others.  Her birthday is a doozy.  Because it is a “date”.  Something we can use to measure how long it’s been since she lived and died.  It’s a time that we remember the excitement of awaiting our first born child.  The moment I got to call Aimee at work and tell her I was in labour.  The moment that Stella was born with a group of 10 enthusiastic adults in the room all there to witness the incredible moment that Aimee shouted, “It’s a girl!” and the room erupted with cheers and tears of JOY.  Stella Joy.

It’s also a day to reflect on how different life turned out from what we expected that first day of her life.  We pictured the first day of kindergarten, soccer matches, high school graduation, laughter and a lifetime of getting to know our little red-headed miracle.

But life had something else in store for us.

Sometimes when I think about what we were robbed of, I get so angry.  Incredibly angry.  Because the world not only took our daughter away, it took away our blissful ignorance of the terrible things that can happen.  It took away our dreams of the future.  It took away our plans and hopes.  It robbed us of beautiful friendships that didn’t survive after our daughter died.  It robbed us of the life we planned for ourselves.  It’s very easy to get sucked in to a vortex of anger and bitterness.  It’s very easy to fee as though life is unfair and you have been so deeply wronged that you have the right to be angry all the time.

The anger comes easily to me.  And when I feel it bubbling up, I work hard to remember all the gifts and beauty that Stella’s life and death gave me.

I have to consciously remind myself of the new friendships that have grown from her cancer and death.  I have to remind myself that Aimee and I have become better parents, better daughters, better people because of the lessons she taught us.  I have to look at Sam and Hugo and allow their laughter and love of life to wash over me and cleanse the anger from my soul.  I have to look in the mirror and think about how brave Aimee and I are.  How proud I am of what we have accomplished and the people we have become.  I have to say out loud, “Stella would be proud of you”.

Some days I can cope better than others.  I find myself trying to push memories aside as a coping mechanism.  I don’t flip through photo albums of Stella.  I don’t keep her little shoes where I can see them, but bury them deep inside my closet.  I never read the old entries from the blog.  I try to live in the present all the time.  To enjoy where I am and what I’m doing and who I’m with.  I try not to think of the “what if’s” and get envious of Stella’s thriving friends who are doing all the things that she should have had the chance to do. I try not to stare at little girls in the mall and feel jealous.

Lately though, I’ve been finding that even when I try to push things aside, the memories find me.  If I go up to the attic to put away the boys winter clothes, I see all the bins that hold Stella’s things.  Her clothing, her favourite dolls, art and then the guest books from her funeral.  Yesterday I needed to thin out the children’s books that drip off of our shelves and I kept finding books I remembered reading to Stella.  I couldn’t bring myself to give them away, so I just shoved them to the back of the shelf. We still keep Stella’s baby bottles on the top shelf of our kitchen cupboards.  We need the space they occupy for other things, but neither Aimee nor I can bring ourselves to throw them out.  And even almost three years after Stella has died, Aimee and I sleep with a space between us.  The space that was occupied by Stella throughout her illness.  The exact space that she took her last breath.  We never talk about it, but neither of us touches that gap between us.  Her “Pink Kitty” stuffed animal sits there day and night.  Almost like a placeholder, waiting for her to come back and snuggle in.  A hole in the bed, mirroring the holes in our hearts.  A physical space that acts as a constant reminder of the little girl we loved and lost.

Stella fast asleep on Pink Kitty, at age 1:

Stella kitty 1 year

In some ways, Aimee and I live in a world now where Stella isn’t on the hearts and minds of many of the people we see.  Aimee’s work has seen many staffing changes with old staff leaving and new staff coming in.  Staff that know nothing of Stella or her journey.  I’ve begun a new career and there is no one at my place of work that met Stella or read the blog, or has any idea about the long days and nights we spent caring for her.  Old friends have drifted off, new friends have come in.  Of course you tell people about her, but it isn’t the same as those people who were with us from the beginning.  Those that cared and watched and waited and grieved right along with us.  It’s hard to go into work on “those” days (for example, I’ll be working on Stella’s birthday), and act as if everything is normal when you’re heart feels like it’s been ripped right out of your chest.  I don’t have the right words to explain to people who weren’t here what it is like to wake up on your dead child’s birthday and not have her there to hug and sing Happy Birthday to, and tell funny stories about the day she was born.

For Stella’s birthday this year, I will be running a funeral.  A funeral for a baby that didn’t get a chance to live past its parents imagination and hearts.  I will push aside my own grief and stand with them as they mourn the future that they were robbed of because of “bad luck” or “circumstances”.  I won’t tell them anything about Stella.  They will have no idea that my heart is also broken.  They won’t know that when I look into their eyes and tell them, “I’m so sorry for your loss,” that I’m not just saying the words, I’m actually sorry because I can feel the same sharp pangs in my chest that they can.  People at work will wish me a Happy Birthday, and I will smile and say thank-you.  They won’t think to wish Stella a happy birthday too, because even though they may know we shared the same birthday, it won’t occur to them to say anything.  After I run the funeral and help another family bury their baby, I will head to Chuck E Cheese with my family.  In a place of chaos, noise and screaming children we will both celebrate and mourn the little girl who couldn’t be at her own birthday party.  There will be a balloon on the table with her name and age.  There will be family.  There will be cold pizza and warm pop.  There will be cake.  But Stella will be missing.

Everyday Stella is missing.

I worked a funeral two weeks ago for another young girl who cancer stole away from the world.  Her mother ended the Eulogy by recalling a conversation between a child and it’s mother:

“Mama…why did she have to die?  Why her?  She was the most beautiful, the most perfect, the most incredible person”.

“Yes, she was.  Le me ask you… when you choose a flower from the garden, which one do you choose?  Isn’t it always the most beautiful, the most perfect, the most incredible?”

She sure was.

Happy Birthday baby girl.

Stella JOY (age 2):

Stella Cell Phone age 1.5

The boys eat ice cream “just because” in honour of their sister:

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Gracie, Sam and Hugo hunt for Easter eggs:

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Happy Birthday Stella!

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The future is in the past

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A few weeks ago on one of my (extremely rare) Saturday’s off, I wanted to take the boys to Kimbourne drop-in centre.  This is a place that Stella spent a lot of time at when she was young, and a place that both Hugo and Sam went to with cousin Xavier almost every single Saturday for almost two years.  My sister Heather and I had a routine.  She would come over on Saturday mornings at around 9 with Xavier and the boys would play while one of us went to Tim Horton’s for tea.  We would leave just after 10am and play at Kimbourne until about 12.  Then we would come home, give the kids lunch and it would be nap time.  We did this every weekend almost without fail.  Then we got a cottage and I got an internship that has me working 4 out of every 6 weekends, and suddenly we hadn’t been there in over 7 months.  When I called Heather to tell her we were going to Kimbourne she paused for a moment on the phone then said, “Actually, Daniel [Xavier’s dad] takes Xavier on Saturday’s now.  They go to Scarborough Town Centre Mall then to his dad’s and then his mom’s so I can clean the house and do my homework”.  Daniel used to work every weekend, but several months ago he got a Mon-Fri job, and I hadn’t realized since I was working/cottaging so much that they had slipped into a new routine.  “Oh,” I said, “Okay, no problem”.  When I hung up the phone, I felt like bursting into tears.  Change has never been harder for me than since Stella died.  Although I continue to move and grow, I somehow forget that the rest of the world is doing the same thing. Changing. Moving.

Luckily, Aimee agreed to come to Kimbourne with me, so I still got to go.  As I walked through the doors and smelt the familiar smells, I heard the unmistakeable shriek of laughter that always hits me when I first walk in.  I smiled at the familiarity of it all.  But once I got the kids out of their jackets and watched them take off towards the toys, I realized something was different.

I didn’t recognize anyone.

For so long I had been going there on a regular basis and knew all the parents, all the children and all the teachers.  But now there was nothing but new faces filling the nooks and crannies.  And suddenly, my kids were “big”.  Kimbourne is popular with the baby/toddler set and my 2 and 3 year olds were now amongst the biggest, fastest, strongest there.  It felt strange.  I also found out that one of the teachers that had worked there for close to 2 decades had died recently.  “Stella’s Snuggling Corner” that opened at Kimbourne back in 2012 is still there, but her photo is gone as is the little plaque explaining who she was. These people didn’t kmow Stella. They didn’t know me. I felt awkward.  The kids had a great time, but I kept looking around trying to figure out who all these people were.  I finally did see a mom I knew and she was balancing a new baby on her hip.  I didn’t even know she was pregnant last time I was there.

I left feeling a bit sad.  Although I knew that stepping into a new career of Funeral Directing would be challenging for my family and I, I underestimated how difficult it would be to lose so much of the life I was familiar with.  I rarely get to see the group of moms and kids that were so close to me when Stella was alive.  I work evenings, I work weekends. I work when they are all socializing and hosting birthday parties and taking the kids to swimming lessons.  Stella’s friends have formed new friendships, the parents have paired off into different cliques and groups.  I find that it feels like I’m swimming against the current.  Needing to move forward, but wanting to allow myself to be pulled back as well because it’s just so damn exhausting to just leave it all behind and forge forward.

I plugged in an old external drive that housed photos and videos from Stella’s days pre-DIPG diagnosis.  I got sucked in to watching video after video of her and it truly felt like I was watching somebody else’s life, somebody else’s child.  There was Stella carving a pumpkin with a younger looking, thinner version of myself.  My brother was there in the video too, shorter with a slightly higher voice.  I heard her voice and saw her facial expressions and felt somehow disconnected from it all.

I don’t remember that life, that world.

Maybe that’s part of grief, to block it out because it hurts to much to realize all that has been lost.  Here I am forging forward with life and getting caught up in my new career, my sons, cooking, cleaning, laundry.  I don’t remember that life and that world on a daily basis.  I watched video after video and tried to understand what happened to that world I was watching.  What happened to the bright-eyed, chatty, beautiful little girl that in one of the videos walks up to her Uncle Tristan and out of nowhere nails him on the head with a huge metal spoon, then smiles and walks away nonchalantly.

The truth is, I was always so afraid that I would forget Stella, but that hasn’t happened.  I have, however, started to forget the person I was when she was alive.  I have forgotten the way the house looked when it wasn’t covered in the boys dinosaurs and train sets.  When I zipped up dresses instead of fly’s. When mornings started at 5am and I struggled to explain to my daughter why Tutus weren’t considered winter outer wear.

On November 13th, I went to a very special event at Women’s College Hospital in Toronto.  it was the opening of “Stella’s Playroom”.  This room is a free, supervised playroom for children to be in while their families are in healthcare appointments at the hospital.  Aimee and I know firsthand from having to drag Sam and/or Hugo to psychiatrist appointments there when they were babies how disruptive and difficult it can be to balance caring for your child while you are trying to deal with your own health concerns.  You can read more about it at:

http://www.womenscollegehospital.ca/programs-and-services/mental-health/Stellas-Playroom

Anyhow, there was a big ribbon-cutting event at the hospital.  Aimee had taken care of inviting all the people there as I was drowning in work and life.  As the people started to arrive and fill the room, I got a crazy sense of being catapulted back in time.  There, standing in one room, were the people who had been there through Stella’s illness and death.  Her friends, their parents, Cath Porter the Toronto Star reporter who followed us for a year to write newspaper articles about Stella, the psychiatrist that we saw every single week for over three years, our family, friends, neighbours.

Aimee and I stood in front of these people and cried and spoke about our little girl.  They were there.  And so was I.

Afterwards, Sam said to me from the backseat of the car, “I didn’t see Stella at the party”.  I felt my heart smash into a thousand pieces as I realized that he was probably excited to go to “the party for Stella” (as we kept calling it), because he assumed she would be there.  That girl from the photos whose toys he plays with, whose mommies he shares, who he looks for but can never quite see. “Stella wasn’t there because she died,” explained Aimee without missing a beat, “Remember?  Her body didn’t work anymore”.  Sam nodded, content with that explanation, but I still felt sad.  How badly I wished that Stella was able to  be at that party.  But maybe she was, in a way.

It’s different now.  I don’t get to see those people very often anymore, or experience things the same way.  But that old world, it’s still there.  It’s in the personal memories of all the people whose lives Stella touched, no matter how fleeting or small.  It’s in the ways she changed Aimee and I from the inside out.  It’s in those videos, those spaces she once skipped through.

It’s on the carpet of Great Wolf Lodge that she threw up on when she was 11-months old in the front lobby.  When we were there with the boys last month, I purposely sat right on the spot I remembered she had been sick.

It’s in the silly singing snowman she used to crawl towards and laugh at when she was 8-months old for her first Christmas that I just unpacked for the boys from the attic and introduced them to last night.

It’s in her Olivia blanket that Sam had claimed for his own, and her purple teddy bear that Hugo cuddles up to at night.

It’s in me.  She grew in me, she died in my arms, she has seeped into my pores and affected every inch of me.

I think whenever I really want to find Stella, all I have to do is look in the mirror.

 

P.S.  Catherine Porter did a follow-up article on Stella’s Family for the Toronto Star in honour of Stella’s death-anniversary last month.  If you didn’t get a chance to read it, check it out!!!

http://www.thestar.com/news/insight/2014/10/26/three_years_after_her_death_child_stricken_with_brain_cancer_still_inspires.html

 Gracie and Sam at Great Wolf Lodge, October 2014:

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Hugo and Sam helping to close the cottage, October 2014:

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Ready for daycare! (Nov. 2014):

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Stella in Auntie Heather’s arms, June 2012:

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TEAM STELLA’S STARS IS ALL GEARED UP FOR TOUR FOR KIDS 2014!

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TFK

 STELLA – WE RIDE FOR YOU!

From the moment a team of doctors entered our two-year old daughter’s hospital room at 12:30a.m. on June 24, 2011, looked us in the eyes and told us that her MRI showed a mass on her brainstem and that we would be referred to the oncology team – the incredible life that Mishi and I had built for ourselves exploded, destroying every facet of the world we knew one piece at a time.

In the days, weeks and months to come following Stella’s diagnosis, MIshi and I would learn to live knowing that our beloved daughter, our Stella – the love our lives- was going to die and that there was absolutely nothing we could do about it.  Getting up each day, taking turns holding Stella (who could no longer walk) on the couch in our living room, while the laughter of the kids outside riding their bikes rang through our house, was like shrapnel to the soul.  In those days, I couldn’t fathom how we would ever truly feel any kind of happiness again.  There are no words to describe the incredible hopelessness that washes over a parent when they are faced with the imminent reality of losing their child forever.

I remember sitting in our living room, watching Dora the Explorer for twelve hours at a time.  Stella found such comfort from Dora during that time and the rest of us were losing our minds each time the theme song started.  Just when I swore that I couldn’t take one more second of Dora, another episode started…..again and again.  The funny thing is that now, I find more comfort in that theme song than I ever imagined I could.  Back then, we had constant headaches, stomach aches and sore bodies.  We sat and we sat.  Watching.  Waiting.  Is this another dip?  We would ask ourselves.  Stella has slept for days.  Will she plateau like she always does, or is this it?

It was a form of emotional torture that I wouldn’t wish upon my worst enemy.

During that last summer we had with our girl, I fell in love with cycling.  Somehow I managed to get myself off the couch one sunny afternoon and onto a bike I had borrowed from a friend.  One thing led to another and all of a sudden I had found my release.  A way to cope.  A way to break up the day, stretch my body and feel strong again.

Inspired by an extraordinary young man named Adam Fedosoff, one day, shortly after Stella died, I decided to do something bigger than I had ever done before.  I decided to step outside of my comfort zone.  WAY outside.  I called up my beloved sister-in-law, Julia, and roped her into signing up to do the Tour for Kids bike ride with me.  A 100km/day, four day cycling event that supports the three cancer camps in Ontario – Camp Oochigeas, Camp Trillium and Camp Quality.  Yes that’s right – 100km a day for four days.  What was I thinking?!  Actually, I know what I was thinking.  I was thinking that I wanted to do something to honour my Stella and this was it. One day when I was out on a ride, I found myself envisioning Stella’s beautiful face and mischievous smile on the back of a shirt – my shirt.  That was it.  I knew right then that I had to do it.  That night, I sat on Stella’s couch, logged into my desktop at work and marked the date registration opened for the ride in my calendar.

Before I knew it, we were registered.  Stella’s Stars – a team of two.

Nothing could have prepared me for the impact that participating in the Tour for Kids ride had on who I am and the way I face the new life that DIPG forced upon us.  Standing at the start line on Day 1 of the ride, my bike adorned with photos of Stella, a picture of her beautiful face stretched across my back and my heart beating out of my chest, was a moment that I will carry with me for the rest of my life.  There we were, Stella’s Auntie Jula, her stuffed animal, “Fred” and her mommy – standing tall with 600 other riders.  600 riders who were there to give as much as they could physically and emotionally over the next 4 days to make a difference in the lives of children affected by cancer.

Julia and I spent those four days in August busting our butts (literally), pushing ourselves beyond, cycling headlong into our stretch zones, and healing parts of our souls that we never imagined could feel better.  Being there, in the thick of it, with other parents who have suffered the same horrible loss that I have, provided me with a sense of comfort, sadness and inspiration that I can’t describe in words.

The cause that Tour for Kids supports is simple and extraordinary all at the same time – it provides kids with cancer with a chance to go to camp. A chance to make friends, connect with people, challenge themselves and above all else, have fun.  I grew up going to camp and I’m well aware of how camp enriches one’s life but I’m also lucky enough to work at Camp Oochigeas and I’ve seen first hand the magic that occurs around a campfire at night, part way up the climbing tower or in a small interaction between two people.

At Camp Oochigeas, kids realize that they’re not alone.  How can anyone not want to get behind that cause?  Stella didn’t live long enough to go to camp, but I would have given anything for her to have had the chance.

Tour for Kids was an incredible journey of freedom and healing for me and I am forever grateful to have had the chance to be a part of something so inspiring and to be in the company of such extraordinary people.

I am forever changed.

So thank you Adam – for your unstoppable drive, unwavering commitment, incredible courage, and for getting me on a bike and helping me look outside of myself.  All this, without ever having met you.

And thank you Stella – for packing enough joy into my soul to carry me through this life without you by my side.

On August 14, 2014 – I will ride for you.

Please help give kids like my Stella the chance to go to camp by sponsoring my ride!

To donate click on the following link:

https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2220086&langPref=en-CA&Referrer=http%3a%2f%2fwww2.tourforkids.com%2fontario%2fdonate%2f#&panel1-1

 

Tour For Kids 2013:

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Sesame Street Land, August 2011:Stella Elmo

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