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

 

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Sesame Street Land, August 2011:Stella Elmo

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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:

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Stella, age 8 months:

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Music To My Ears

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Parents whose children have died have to think about and overcome small daily struggles that other people never have to think about, or even pretend to understand.

For example, when I go on the Toronto Community Centre websites to register the boys up for swimming, I need to select from a drop-down list the child that I’m trying to sign up.  Next to Stella’s name is a note that says Stella Bruner-Methven: INACTIVE.  I asked them if they could just remove her name from the list, but they’re insistent that they can’t (which is total bullshit but you try getting someone who works for the City of Toronto to listen to you), so now each time I’m on the system I have to scroll past my daughter’s name and that horrible note until I get to Sam or Hugo’s name.  It makes my eyes prickle with tears every single time.  She is not “INACTIVE”  I bluster to myself.  She is DEAD.

And when I called the Canada Revenue Agency just after Stella died to tell them of her death so that they would stop sending the $100/month “baby bonus” you get here in Canada for each child, they advised me sternly that I owed them $100.  Why?  Because the October baby bonus for Stella had already been deposited into my account, but she died October 22nd, before the end of the month.  So I shouldn’t have gotten that $100 for October and needed to give it back.  “If she had lived to October 31st, you could have kept it,” the woman on the phone helpfully explained to me.  “Oh, and you will also see a reduction in your GST cheques because you’re going from 3 children to 2”.  Thanks, Canadian Government.

In the last two months we have gotten phone calls from daycares that we put Stella’s name on the lists for years ago.  Once in awhile, we still get chirpy messages saying, “This is Dandelion Daycare.  We just wanted to let you know that we have a spot for Stella.  Please call us to let us know if she is able to start on Monday March 25th…”  Aimee is the one who always calls back.  In case there was any doubt, she is a much nicer person than me.  She always just politely says that we are no longer in need of the spot, and leaves it at that.  If I were to call back I would tell them why.  I would say, “You can take us off your list because Stella DIED last year”.  I would want to shock them, to jolt them out of their sleepiness about the harsh reality of life and the fact that the little girl I hopefully and excitedly put on their stupid lists 4 years ago is gone now.  I want them to whisper about it in the staff room, and think about it and want to know more about the little girl that could have been there, but isn’t.  However, I am well aware it’s mean and pointless and petty, so I let Aimee make the calls.

Each birthday party invitation for Aimee and I needs to be weighed and measured and discussed for days as we lay in the bed our daughter died in.  Who is it for?  How old are they turning?  What types of feelings does the party bring up?  Jealousy? Anger? Sadness? Bitterness? Joy? Hope? Celebration?  We bat words back and forth like a tennis ball until we come to a decision about it.  We always have good intentions, but sometimes we just can’t take the final steps out the door and go to the party we had RSVPd for.

A dash to the supermarket for milk becomes an exercise in grief as I hurry past the inviting piles of green avocados that Stella used to shop with me for.  A trip to the attic to bring down an extra blanket fills my heart with heaviness as I see the line of boxes in the corner neatly labeled “Stella’s Room”, “Stella’s Memory Box”, “Stella’s Funeral”.  A walk to the library past giggling 5-year old girls in pink jackets and jaunty winter hats makes my chest burn.  You go on living your life, even loving your life, but the grief is always there, just beneath the surface, ready to burst through at any moment with its heavy, hot lava of pain.

Even happy moments have a twist of sadness to them.  Aimee had always fantasized about Stella joining soccer, but she never got the chance.  She was supposed to join up in the fall, but was diagnosed at the beginning of summer and by fall she couldn’t walk anymore.  So, this time, as soon as Sam and Hugo were old enough, we signed them up.  Even though it’s expensive and they are really still babies, we have waited a long time to see one of our kids in a soccer shirt so we love taking them.  You should see Sam and Hugo and Xavier all running around a gym in these tiny soccer uniforms… it’s just about the cutest thing ever!  No matter that most of the time it’s like herding cats trying to get them to do anything they’re supposed to, it is a joy to watch and experience.  But it’s sad too, of course, because we are all thinking about Stella and how she should have been there too.

After soccer yesterday, Aimee and I took the boys home and Gracie was with us as well while Auntie Angie volunteered with Baby Stephanie (she is going to write an update about baby Stephanie for you all soon!!!).  The three kids literally destroyed our house playing in it.  I’m surprised no one broke a bone they were so energized and excited.  They adore each other, and it’s fun to see them playing together even though my throat is in my heart most of the time as they leap from high heights and careen screaming through the halls narrowly missing furniture corners as they run by.

After Gracie went home and dinner was over, Aimee took the boys downstairs so I could make a weak attempt to put the house back together after a long weekend of chaos and activity.  I thought rather grumpily about how pointless it is to have nice things when you have young children.  The house we had painted a year ago is already in need of painting again— there are scuff marks and chips and dirt and crayon marks all over the place.  The nicely recovered couch is used daily by the boys as a trampoline.  They throw pillows on the ground and drool and pee and spread crumbs all over it.  Dishes from our matching set have been broken.  The tiny iron angel we got from Aimee’s Nana’s house when she died had its wing broken off on Friday when Sam threw it.  Photographs in frames are knocked over constantly.  We have about 6 broken frames laying around waiting to be repaired.  There are dried cheerios in the sink, piles of laundry that we just can’t seem to get under control and a fridge that could be a science experiment.  There is stuff everywhere.  It’s overwhelming.  It’s not that I need things to be pristine or totally clean and organized, but it’s also disheartening to constantly be putting a million tiny pieces of toys away only to have the bins dumped back out moments later and toys strewn around in every crack and crevice within seconds.  So, I took a deep breath and started to tidy up a bit, just enough so I felt like I had a tiny bit of control over my environment.

After picking up by hand tiny grains of rice from between the floorboards and stacking books on top of more books in the living room, I stood at the sink washing pots.  As the warm soapy water poured over my hands and I sighed thinking about ll the work left to do, I heard Aimee singing loudly in the basement.  I cocked my head slightly to the side to see if I was hearing what I thought I did.  And I smiled.

Aimee was playing guitar for Sam and Hugo.

She used to play guitar for Stella all the time, and so did our friend Brad, but since Stella died there has mostly been silence where the music used to be.  It was too sad to hear her favourite songs and remember her crooked smile and the way she danced with her arms waving and head bobbing.  I put the pot down, wiped my hands on the tea towel and headed downstairs.  As I walked into the basement, I saw Aimee standing in front of the boys with her guitar strumming and making up words to a silly song while they danced.  Sam strummed Stella’s old ukulele and Hugo was going between a maraca and bells, shaking and shimmying.  They both danced comical little dances, rocking their hips back and forth.  I laughed out loud to see how alive and happy my family was.  I grabbed the camera and tried to capture the moment, but it wasn’t really possible.  Photographs are amazing for certain things, but I’m not convinced they can fully capture off-the-cuff moments of silliness and love.  After a couple of shots, I put the camera down and joined my family.  We danced and played music until past the boys bedtime.

The dishes would wait until later.  The laundry would wait until later.  The music was here, and it was making me laugh and making my heart sing.  And Stella’s watchful eyes from the photograph on the wall, twinkled down at us.  I realized that my life is not perfect, and never will be.  But it is mine and I treasure it.

As I picked up Hugo and spun him in a twirl with me, I remembered one of my favourite sayings about how if you did not know true sorrow, you would not recognize true joy.  So while I would never go so far as to say I am grateful for Stella’s death, I am grateful for her life.  And I am lucky to have experienced gut-wrenching, terrible pain and sadness because now, when the music is happening, I can hear it clearly.

Last Night’s Impromptu Dance Party:

IMG_0886Hugo Beckham plays soccer:

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Gracie and Sam playing some odd game they invented that required face masks:

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Hugging brothers:

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Colouring Brothers:

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Winter trip to Jungle Cat World (photos by Kenneth Tinnish):

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7r5N-2JOqMJ75lh8NYD6v9VL1lZ3RwqJNAZjqBjL39o,BbRM3lMiyPCx4KFkn4UGUIukUZXMAM-nXkyBrVGW7MQStella could always, ALWAYS hear the music:

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Thinking About Death

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Thinking about Death

 

One thing about being a student in Funeral Services is that I think about death.  A lot.

I’ve seen babies who died.  Old people.  Middle-aged people.  Rich people with rack of lamb served at the funeral, and people having the government funded “Social Services” funeral.  People who were sick, people who died suddenly, people with 1000 well-wishers at their funeral, and people with only 1 or 2.  In death, those details become completely unimportant.  What is important is that whoever the person is, they are gone from this Earth forever.  Doesn’t matter if they were rich or poor, popular or solitary, kind or cruel.  Death is the great equalizer.

 

It always surprises me a little bit when I see a deceased person because, usually, everything about them is fairly intact other than the fact they’re dead.  I look at gnarled knuckles that I know someone probably used to run their thumb over in an act of affection. I touch feathery-soft hair that still bears the smell of shampoo.  I see lips that once left butterfly kisses on someone’s brow, and legs that ran across a beach, tiny bits of sand squeezing between toes.  All the parts of the person are still there, but in death it all stops and becomes still.  The person is suspended in time, frozen forever in that moment they took their last breath.

 

I think that’s why sometimes it’s so hard to see children that I haven’t seen in awhile.  Because they have, undoubtedly, gotten bigger.  They are older and doing new things and changing rapidly.  But Stella is frozen forever as a 3 ½ year old.  Passages of time for anyone—birthdays and anniversaries especially, are a concrete reminder of the fact she is not getting any older and never will.  No more firsts for her.  When I see kids that two years ago were babies who are now walking and talking human beings, or toddlers from then that are now zipping around on ice skates, or teenagers that are going to College this year, I am overcome with the reality that time does not stop for anyone…unless they are dead.

 

Last weekend I worked the funeral of a gentleman who had been diagnosed with an aggressive cancer and given 3 months to live.  A week later, before his wife and child had the chance to adjust to this shocking diagnosis, he died suddenly of an (unrelated) massive heart attack.

 

It brought the oft-used term “live each day as if it were your last” new meaning in my mind because even when you think you know when you will die, you don’t.  No guarantees.

 

I think a lot about trying to live each day to its fullest and think a lot about the mortality of those I love.  Sometimes I try to picture someone telling me I had three months to live.  What would I do with the time I had left?  What would be most important to me?  And if I didn’t get advanced notice, if I just didn’t wake up tomorrow, would I be proud of the person I am and the things I’ve accomplished?  Is my life meaningful?  Am I making a difference at all?

 

One thing about my grief is that it complicates everything.  Nothing seems easy anymore.  An innocent, simple social invitation turns into a huge commitment from me because I need to be mentally and physically prepared for what it will bring up.  Uncomfortable feelings of jealousy, self-pity and sometimes anger that threaten my promise to  “find the joy” in everyday.  It’s a process, obviously.  And where you think you will be, or what you think you will want, is not always clear.

 

The trouble is, the answer depends on the day.  And to be honest, it’s a lot of pressure to put on yourself– to have extraordinary moments each day.  Sometimes I just barely scrape by, ending the day on my knees wiping up pee from the floor, my greasy hair flopping into half-closed eyes.  Days I didn’t even manage to shower, let alone “change the world”.  Some days I am invigorated and excited, bursting with love and gratitude.  But most often, what I feel is neither up nor down, just an irritating restlessness. I spring ideas and dreams about my life off Aimee and they jump around like bouncy balls, confusing her, confusing me.

 

I want to have another baby— maybe.  It’s so much work.  The timing isn’t right.  We don’t have any money.  My kids are what bring me the most happiness, why wouldn’t I want more happiness? My career would have to wait- again. Things are manageable now and with another child, it would tip the scales.  But imagine how lovely it would be to hold another precious life in my arms…back and forth we debate this question.

 

I want to move out of Toronto—some days.  I long for the small town, community feeling of Waterloo, Guelph or Lindsay.  I want to live in a place where I can shop locally and where people know your name at the library and where the community group makes a skating rink for all the neighbourhood kids and maintains it and hands out hot chocolate on a Sunday morning.  But I don’t want to be far away from my family.  I don’t want to have to commute to Toronto for a job.  I don’t want to miss out on all the activities of Toronto (events and festivals) and I don’t want to go into 30 years of debt on a new mortgage.

 

I want to travel to far-flung places.  Sort of.  I want to see the beauty of foreign lands with my own eyes, run my hands over history, experience the excitement of new foods and new cultures.  But new things also make me uncomfortable.  And I don’t like not having running water or flushing toilets.  Sometimes the unsanitary conditions of places I’ve visited stressed me out to the point of tears.  And I get nervous about trusting people in places I’m unfamiliar with.  Travelling to foreign places always seems like it’s fun and exciting, but sometimes the reality isn’t as wonderful.  And it’s so expensive to travel, especially with kids.  But the rewards can be immeasurable.

 

Back and forth, bounce, bounce, bounce.  I’m unsettled and jumpy.

 

I try to figure out what I really want, but the problem lies in the fact that the only thing I know 100% for sure, is that I want Stella back.  And that can never happen.  So I find myself searching for something else to fill the void. But there is nothing.

There is no child that can ever be born with her mischievous grin, warm hands and bouncy curls.

There is no house or community in the world that she will be waiting for me inside, eyes wide open, waiting for the next adventure.

There is no country that she will suddenly appear in to give me a hug and lead me around by the arm.

There is no job and no course that can fulfill me the way being her mother did.

 

 

I keep trying to find my footing, and failing.  It always feels like something is missing, like the answer to the question isn’t quite right and nothing really fits properly in my world.  It’s because she’s gone.  From the day she was born, she was the axis upon which my world turned.  After her diagnosis, the focus was even more on her.  Then she was gone and there are hundreds of directions to turn in, but none of them have her, so my world is off the axis and spinning wildly through the universe.

 

Sometimes I think that’s why it’s difficult to find my way — because I am frantically trying to escape from who I am, trying to be like everyone else.  What I should be doing instead is looking inward and honouring the fact that I am different because Stella lived and Stella died and that reality makes me experience things differently.

 

I think about and see death every single day.  I know both how ugly and beautiful it can be.  And remembering that we will all die someday is a very powerful tool for focusing on what matters most in life.  I don’t have to change the world to be important or to say I lived a good life, I just have to be myself.

 

“Your time is limited.  Don’t waste it living someone else’s life” – Steve Jobs

Boys paint together at Stella’s beloved Kimbourne Drop-In Centre:

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 Sweet Little Hugo:

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Sam, Gracie, Hugo and Auntie Juju make cupcakes:

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Joy:

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One Day At A Time

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Christmas has come and gone.  It was a whirlwind of food, bright wrapping paper, music, children chasing each other in circles and laughter.  Even though she wasn’t here physically, Stella was everywhere.  There were stars all over our Christmas tree, representing our little girl.  We set a place for her at the table for each Holiday meal, a plate with her photo and a lit candle.  Her stocking hung with the other kids on the mantle and we decorated her tree at Riverdale Farm.  Like most other days, there were moments of laughter and fun and moments, when the kids were ripping into their gifts, that instead of feeling happiness I felt a raw ache in my chest as I looked vainly for red curls in the crowd.  We lived in the present, we remembered the past, and we mourned both.  There were nights when Aimee and I sat on the couch together and cried quiet tears of pure heartbreak.  There were other times when we laughed wholeheartedly at the antics of the boys, or each other.  As expected, it was a mixture of happy and sad flashes woven tightly together in one big blanket of moments.

As we muddled through the holidays, I was especially grateful for all the people who thought to text or send a card or an email saying they were thinking of Stella and us.  On the DIPG website that I belong to (www.dipg.net), some bereaved parents talked about how no one acknowledged their children at all over the holidays’, and how much it hurt.  I am so grateful to have a group of family and friends (including blog followers!) who keep us—all of us— in their thoughts and reached out to let us know they were thinking of our family and the missing red-headed girl whose laugh still rings in my ears.  It’s funny because there are so few people who read this blog anymore, yet those that continue to follow are faithful and loving and generous with their comments and support.  Most of our family and friends don’t even read it, but those who do mean a lot to us because you understand that this journey is far from over.  Stella is gone, but we are just beginning to figure out how to do this life without her.  The story of Stella, her life and death, is far from over.

It occurred to me over the last few days how many strange decisions that bereaved parents need to make around the Holidays.  For example, when we get our annual “personalized” Christmas ornament with family names on it…do we include Stella, or not?  When we sign gifts we are giving to people, do we put “Love, Aimee, Mishi, Sam and Hugo”, or “Aimee, Mishi, Stella, Sam and Hugo?”.  It feels so wrong to not put her name on things, yet she is gone forever and we need to somehow acknowledge that as well.  Do we put anything in her stocking?  What about toys and books? As the boys brought home presents from their respective grand-parents home, we realized we needed to thin out some of the things they don’t play with anymore.  Some of Stella’s toys that they have outgrown. What do we do with them?   It hurts to give them away— to give away objects that she once touched, and that we have memories of her playing with, but we can’t keep everything.  And photos.  Stella’s face is plastered on every wall and surface in our house.  But we also have photos of the boys now, more and more of them, that need a spot as well.  And though we want, and need, Sam and Hugo to know their sister through us, we are also conscious of the fact that we need to celebrate their accomplishments and personalities separately from her— not just compare them to Stella.  Because we miss her, we are constantly trying to find little pieces of her in Sam and Hugo.  A certain look, a certain way they say a word, a certain dance move.  We delight in saying, “Oh my gosh, remember when Stella did that”…”Wow, when he makes that face he looks SO much like Stella”…”Stella never would have let us put that sweater on her…” etc. etc.  But at some point, they will move out from under her shadow.  They will move past the stages she was in and he comparisons will not happen anymore.  Both because they can’t and they shouldn’t.  I wonder if we will lose a little bit more of her when that happens.  Already Sam is almost the exact same age Stella was at diagnosis.  She was 26 months, 6 days old when DIPG became part of our vocabulary.  Today, Sam is 26 months, 7 days old.  From here on in, we are like new parents, exploring and watching what it’s like to have a “normal” 26 month old, not one saddled with a fatal diagnosis.

There is both sadness and joy in having Sam reach this milestone— the age Stella was when her future was snatched from underneath her.  Often when I see Sam and Gracie playing together, I wonder how different things would be if Stella were still there.  Would it be Stella and Gracie teaming up against Sam?  Now Sam and Gracie play together and laugh and chase each other, with little Hugo always bringing up the rear and trying to catch up.  I wonder if Sam would look at Gracie with the same complete adoration, and if Gracie would have as much time and energy and love for her little cousins if Stella were still here, her partner in crime for everything.  I wonder how we could ever live without our sweet little Hugo, smiling his way through life with his easygoing personality and love of books and hugs.  I wonder what this next stretch of our life will be like— where (we hope), we will get to the stages we just missed with Stella.  Soccer and ice skating and first day of school.  I wonder what it will be like to parent through these next stages.

Even now, so many months after Stella’s diagnosis we are still not sure what we are doing.  Every day brings a new challenge, a new emotion, a new thing for us to puzzle through and figure out.  But we will.  One day at a time.

 

Yesterday….Today…..Tomorrow  

(Poem that preceeds most AA meetings in Toronto)

There are two days in every week about which we should not worry, two days which should be kept free from fear and apprehension.

One of these days is Yesterday, with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed beyond our control.

All the money in the world cannot bring back yesterday. We cannot undo a single act we performed; we cannot erase a single word we said

 Yesterday is gone.

 The other day we should not worry about is tomorrow, with its possible adversaries, its burdens, its large promise and poor performance. Tomorrow is also beyond immediate control.

Tomorrow’s sun will rise, either in splendor or behind a mask of clouds, but it will rise. Until it does, we have no stake in tomorrow for it is as yet unborn.

This leaves only one day today. Any man can fight the battle of just one day. It is only when you and I add the burdens of those two awful eternities.

Yesterday and tomorrow, that we break down. It is not the experience of today that drives men mad.

It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow will bring.

Let us therefore live but one day at a time!

Stella’s Tree at Riverdale Farm, all dressed up for the Holiday’s:

IMG_2899Stella’s Spot at the Christmas Table:

IMG_2959Christmas Chaos at Nanny and Grand-Pa’s house:

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Energetic boys! (Sam, Xavier, Hugo):

IMG_0558Sam and Hugo get doll strollers for Christmas:

IMG_0647In 2010, Stella and Gracie got strollers for Christmas too:

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