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

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 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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Jersey's

 

Finish Line(2)

 

 

Sesame Street Land, August 2011:Stella Elmo

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Hurry-Hurry

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I started my internship at a Toronto Funeral Home earlier this week.  It’s been absolutely bonkers.  The truth is, I haven’t worked a real, paying job since the day Stella got diagnosed, June 24, 2011, when I called in to say I’d be a few hours late because we were taking Stella in to the Doctors.  I never made it back, ever again.

The hours at the Funeral Home are tough…lots of 14 hour days (in heels- ouch, inhumane!), lots of evenings and most weekends.  It’s been a really difficult adjustment for all of us.  I miss my kids.  I miss my weekends.  I miss sitting with Aimee on the couch at night and talking about our days.  I miss folding laundry.  Miss reading bedtime stories.  Miss seeing Heather and Xavier.  Miss flat shoes.

Aimee has been incredible, just picking up the reins and stepping in to do the majority of the kid stuff while I chase this dream of mine (she even makes my lunches and dinners…thanks honey!).  In my first week at the Funeral Home, I’ve been thinking of Stella a lot.  She is, after all, the one who led me on this path.  On the days that I’ve burst into tears and convinced myself that I can’t do this— it’s too hard, too much to learn, too stressful— I’ve tried to remember her smiling little face and the things she endured, all the while appreciating each moment she was given.  Sometimes it works, other times I just want to run away and hide in the home I’m so comfortable in, where the memories dance in shadows on the wall and the kids laughter echoes from the ceiling.  But I remember reading somewhere once that if you don’t do something every single day that challenges you and makes your heart race a little it, you’re not really living. So, I remind myself that new things are always hard, and I force myself to go back.  I want to do this, so even though it is exhausting to stretch myself emotionally and physically and mentally each day, I am doing it.  And as the days go by, I am slowly learning and am confident that someday it won’t all feel so foreign and awkward.

One thing I’m having trouble with is the rush, rush, rush of daily life that I’ve been thrust back into. Before Stella was diagnosed with DIPG, I used to over plan and overbook her days and nights because I just wanted to get through them.  Parenting Stella was challenging.  A lot of it was about “killing time” until that blessed moment when she fell asleep in my arms on the couch and Aimee and I could breathe a sigh of relief and put a black “X” on the calendar for, “made it through that day!”.  After she was diagnosed, it was the opposite.  We dreaded what the next day, the next moment, would bring so we slowed down almost to a halt.  Each smile, each tear was cherished and rolled around in our hearts like a precious jewel.  I got used to taking things slowly.  However, life at a funeral home is again all about hurry hurry, rush, rush and I can feel my pulse and legs quickening and ramping up already.

It’s ironic really, because death is the moment when time stops completely for somebody.  When it ceases to matter, and everything just halts.  How strange that this moment is marked for everyone else with “hurry, hurry”.  When a death occurs in a nursing home, generally the family has only 24 hours to clear out their loved ones room so that somebody else can be moved it.  At the funeral home there is a rush to get the body embalmed (or cremated) before nature takes its course.  Then a juggling act to fit in multiple families who are looking for visitations and services and burials.  So it’s hurry to get the room emptied, hurry to get the body removed, hurry to figure out the when’s and where’s of a service.

When people come in for visitations or services, over and over again I see groups forming circles, hugging and kissing and saying, “I haven’t seen you in ages…we must stop meeting like this”.  People pour in and then, more often than not, they sneak out early citing things like work requirements, other meetings or not wanting to get caught up in rush hour traffic.  And I’m not saying that these aren’t valid reasons but…if we even rush through saying goodbye to someone who has died, if we think sitting in traffic an hour less on a Tuesday night is more important than saying a proper goodbye, what kind of message are we sending about the importance of a person’s life?  Showing up isn‪’t enough‪.  We need to FEEL something‪.  How can we say that we are living each moment to its fullest, celebrating the little things when a person‪’s life is n‪ot worth a little traffic‪?  We live while we are alive.  But once we die, is it also not important to stop the mad rush– just for a few hours— to reflect on life‪?  If you didn’t know the person that well, maybe they were a work colleague’s parent or something, it doesn’t make their life any less important.  Just because you didn’t know them personally, doesn’t mean it’s not “worth it” for you to spend an afternoon sitting in a space with other people and grieving.  I’ve written several times now that there are very few “safe” spaces with which we are allowed to cry and mourn.  It‪’s why I choose to go to events like Blue Christmas at my Church, or the annual Memorial Service at Sick Kids Hospital.  Because they create a time and a place to cry and be sad.  I think funerals or memorial services should be seen as something similar.  It is not a duty.  It is not something you “have” to do because otherwise your work colleague would think you were an ass, it is a privilege and a gift to have time to sit and reflect.  You can cry for your own parent, cry for the divorce you just went through, cry for the miscarriage from 22 years ago.  It doesn’t matter what or who you are grieving.   I have also seen people leave a funeral to check their Blackberries or cellphones.  It could be important— maybe they have a sick or dying relative themselves.  But more often than not, it’s work.  Or facebook.  We are so busy trying to get to the next thing, we have no time for now.  It constantly feels as though you are fighting against a whirlpool or demands as you walk through life, so of course it is hard not to get sucked into the running, running, running.  But how can a person that walked this Earth for 82 years, that ate and drank and laughed and loved and joked and raged and smiled and cried, not be worth 45 minutes in your day to reflect on and think about.  How can we be so proud of accomplishments like a high score on Candy Crush and not of how we chose to remember the lady three doors down who gave us tomatoes every fall from her garden?

I have tried to slow down in my life.  I have tried to focus less on “getting there” and more on the journey.  Tried to be present.  Not texting when I should be reading bedtime stories to the kids.  Not writing a grocery list from the bathtub when I’m supposed to be relaxing. It’s hard though, you’re constantly fighting to put the brakes on in a world that thrives on speed and immediacy.  Stella’s days after she was diagnosed were spent simply enjoying whatever came.  In the early days, it was trips to Riverdale Farm and Great Wolf Lodge.  Later, as her body began to fail her, it was sitting watching Dora the Explorer or Golden Girls and having her nails painted.  Later still, when she could do almost nothing, it was simply laying out in the sunshine under the tree in our front yard and being read to or listening to music or getting her nails painted.  It didn’t matter.  Stella was never in a hurry.  She savoured each bite of ice cream, rolled it on her tongue and often smiled after every single bite.  Sam is similar.  When he has something he likes (for him it’s popcorn), he eats it slowly and stops every once in awhile to give a big smile and say, “Mmmmmm.  Yummy in my tummy”.

Stella lived life full-tilt.  She was always on the go, always excited about what was around the corner, always bursting with energy.  But she also knew when it was time to stop.  To look at the gnarled roots of a tree and wonder how they got that way.  To screech to a halt when the ice cream trucks bells could be heard faintly three blocks over.  To sing a song.  We have to sometime shave a “pause” button in life, otherwise the moments get lost in the days.

As I drove to work yesterday, I noticed that the tulips had finally begun to poke their heads out of the ground and the trees have finally burst into umbrellas of green after an incredibly long winter.    Nature was in no hurry for the flowers to bloom yet they came eventually, when the time was right.  Because there is always time to live.  The secret of nature is patience.  Time should never be hurried.

 “The butterfly counts not months but moments, 
and has time enough.”- Tagore


 Birthday Cakes for no reason in honour of Stella:

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Mother’s Day Treats: 

IMG_6918Hugo loves swinging and so did Stella:

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Sam discovers the cottage beach as a new season begins:

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Sam, Hugo and Gracie roast marshmallows at the cottage:

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Miss your sweet face Stella

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River

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IMG_0409The River in front of BlueBird Cottage

Last weekend, when the first tulips finally pushed themselves out of the ground after a long, hard, cold winter, Aimee and I headed up to our beloved BlueBird to officially “open” the cottage for the season.  As we stood looking out at the fast-flowing river, I began to think about the ancient saying, “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.” ― Heraclitus.  As the water twisted and turned, flowing over rocks and rushing past tree trunks partially submerged, I thought about how true that saying is, especially after the death of Stella.  Life is like the river itself, always flowing, always different.  And it rushes past, not stopping for anything or anyone.  The river doesn’t look back.  It can’t.  It is unable to change direction…or maybe, unwilling.

Those who grieve are profoundly different from those who have not yet experienced life-altering loss, yet we all have to stand in the same river.  But, the difference is, we experience it in a new way.

Since Stella’s diagnosis and death, Aimee and I are completely transformed.  We are not even remotely the same as before DIPG entered our lives.  Those who are close to us can see and feel it, and even some blog readers that have followed along have likely noticed the shifts.  But change is hard.  Most people don’t purposely choose it.  Aimee and I were thrust into change, and so were our friends and family.  We didn’t ask for Stella to get DIPG, we didn’t ask for her to die, but once it all happened, we couldn’t help but be deeply affected by it all.  The personal growth we have experienced through our pain has been difficult, and we are still struggling to find our footing sometimes.  I notice this especially when I feel jealous of other people’s families and milestones.  I notice it when I hesitate to discipline Sam and Hugo, or lie so as to not disappoint them, because I want so badly for them to always smile and always be happy, even though I know it’s my job to gently teach them that life is sometimes difficult and unfair.    I notice it when I react to everyday situations in a way contrary to what most people would, and have to remind myself that they have not felt the same loss that I have, so don’t understand why I experience things differently.

Change is hard, yet since June 24, 2011 I feel as though Aimee and I have done nothing but change.

I used to always tell people that I thought of life as a great big patchwork quilt, and each small square was a separate era or time we experienced that, once sewn together, told the story of our entire life— complete with clashing patterns, zigzag stitches, uneven shapes, bright patches, dull pieces and forgotten textures.  I still think of life in this way— many small pieces forming a large blanket that reflects all the moments in our lives.  But, lately, I’ve been having trouble figuring out how to cut the threads on all the Stella patches.

As life moves forward, it is not only her absence that is felt, but the absence of the way life used to be.  Many of the friendships Aimee and I made were centered around Stella.  Now there is a disconnect.  It’s  not anyone’s fault, it’s just the way the river continued to move forward for others, while we stood rooted in the same spot for a bit longer, struggling against the current that swept everyone else up and carried them along.

Last week I attended a presentation with a guest speaker who spoke about the role of humour in grief.  It was a great speech, and the part that stuck with me most was when the speaker said that in her bereavement groups for the last decade or so, she always asks people to fill out a form and one of the questions she asks is, “Would the person you are grieving want you to move forward and be happy in your life?”.  She said that in all the years she’s been asking this, 100% of the time the answer that has come back is “yes”.  Of course our loved ones want us to carry on and enjoy our lives and keep laughing and loving and living.  But there is still this guilt I feel when I experience joy that Stella is not a part of.  When I think about the quilt of my life and how Stella was the centre of it for such an intense and magical period, it seems wrong somehow to keep adding patches of life afterwards.  There is a physical and linear distance between Stella and I now, but it’s harder to accept the emotional distance that is naturally occurring as well.

You see, Stella is no longer the first thing I think of when I open my eyes in the morning.  I still carry her with me, but usually I wake up to the sound of Sam and/or Hugo calling for me.  And as I swing my legs over the bed to go to whoever is saying “Ma-maaaaa!” loudest, my thoughts are focused only on my sons and the fact that they need me.  And then I have to think about the tasks of the day.  Getting up, getting dressed, going where we need to go and doing what we need to do.  Stella is always there, but she is in the background now as opposed to in the centre of everything.  She has almost become like the ring I wear on my right hand that is imprinted with her thumbprint; I know the ring is there, yet I don’t notice it or feel it all the time.  Sometimes it catches my eye, and I twist it around my finger, or stroke the indents that form the whorls and lines of her individuality, and I focus on the bright band around my finger.  But then I have to snap out of it and continue whatever task I was in the middle of.  So the ring is there, but unnoticed.

Stella only lived for 3 ½ years.  A small pearl in the necklace that makes up the average lifespan of a person, but she changed Aimee and I so much that the entire pattern of the quilt of my life doesn’t always make sense anymore.  Which brings me back to the river.  The river that is always changing, that we can’t step in twice.

We can never go back to what once was.

And that’s the only truth that matters, even as I struggle to adapt to all the changes in life.  Once I could fully comprehend and appreciate this truth, it reinforced the immense value of today.  The quilt of my life is full of patterns from the past, and my dreams and wishes form the future.  But nothing is more tangible and real than the present.

Standing in the river, wrapped in a quilt, letting JOY in.

“Live in the present. Launch yourself on every wave, Find your eternity in each moment.” – Thoreau

 

The boys are honest, and real at all times…”naked” one might say…

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Gracie and Sam have a sleepover: 

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Hugo, Xavier and Sam do crafts at Sunday School:

IMG_6847Hugo isn’t a baby anymore!

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Stella, age 8 months:

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