Life, Death, Ice Cream

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I’ve written before about how one of the frustrating things to me when Stella was alive was reading other people’s DIPG blogs and then having them suddenly end just days or weeks after their child died.  As a parent standing on the edge of an abyss of darkness, I wanted to…NEEDED to…read about others journey’s.  I needed the reassurance that someday it would all be okay.  So even though I don’t feel like I have much to write nowadays, and even though there are few people who still follow this blog, I continue to write when I can because I keep thinking of all the “new” DIPG parents out there who may be trolling the Internet in the middle of the night, looking for assurances that they will survive their personal nightmare.

So… in case you were wondering, we are still standing.

Stella’s youngest brother, Hugo, turned two on August 2nd.  He is such a little character.  Built just like Stella, same mischievous grin and same bright blue eyes.  But he is so very different as well.  As we sang happy birthday to him, both Aimee and I blinked back tears remembering Stella’s 2nd birthday.  It was our last few weeks of innocence, but we had no idea back then what was about to happen to our lives.  In may ways, Hugo saved me.  I was in such a dark place and when I got pregnant with him I had to care again.  Having this little life inside me forced me to start looking after myself.  I felt so betrayed by the world when I realized my daughter was going to be taken from me— not just taken, but slowly eradicated— and I lost all the confidence I had that there was any point in trying to protect your children.  When Sam was born I was terrified for the first little while, and I got pregnant with Hugo when Sam was still a newborn himself.  What a crazy time.  But having a baby growing inside me meant I had to eat and sleep and look after myself.  Hugo has helped lessen the sting from the loss of Stella.  Though nothing can ever make up for the death of our curly-haired, energetic daughter, Sam and Hugo together have given us so much joy.  They gave Aimee and I back our lives—both literally and figuratively.

There are some days now that I don’t feel sad at all, and others when the tears won’t stop flowing.  And I find that sometimes, it’s at funny and unexpected times that grief will hit.  I was looking at photos of the kids that we put up at the cottage last year and thinking about how we need to update them since the Sam, Hugo, Gracie and Xavier are so much bigger now.  Then I realized that the ones of Stella on that same wall will never be updated.  There are no more new photos of her.  She is forever 3 1/2.  When I thought about that, my heart hurt so much I thought it would burst out of my chest in a cascade of salty tears.  Sadness weighed me down in that moment.  I tried to imagine what she would look like had she lived.  We probably never would have cut her curls so they would likely have been cascading down her back by now.  She may have been longer and leaner too.  I pictured her with green nail polish and a brightly coloured bathing suit.  I wondered if she would have chosen the bathing suit with Dora on it, or the one with flowers or hearts.  Pink or purple crocs?  Maybe neither.  The first pair of crocs she insisted on when she was 15 months old were plain shit brown and there was nothing we could do to convince her the other colours were nicer. Now Sam wears pink Dora crocs and Hugo likes his blue Thomas the Train.  I wondered if Stella and Gracie would have ganged up on Sam.  He would have had no Hugo to chum around with, so I wonder what that dynamic would have been like.  Probably freckles would have started appearing on her chubby cheeks.  Perfect white chicklet teeth, bright blue eyes, bubbling giggle.  My head can picture it so clearly if I try, but it hurts to think too hard about it, so I didn’t let myself sit and wonder for too long.  It’s healthier for me to stay in the here and now.  So I stopped that train of thinking and allows the “now” moment to seep into me.  Using all my senses, I watches the boys play with Gracie, felt the sun on my arms, listened to the rustle of the trees as a light summer breeze passed by, smelt the mixture of sunscreen/sweat that heralds summer fun and tasted the grape freezee, a familiar manufactured flavour that is unchanged from my own childhood, 30 years ago.

Staying in the here and now is also how I’m getting through this extremely challenging Funeral Director internship year.  The hours are long, working weekends and holiday’s is hard on my family.  I’m struggling.  A lot of it is the driving.  I only got my license (for the first time in my life!) this past May, so I’ve been driving for less than 3 months.  Driving in Toronto traffic is extremely stressful for me.  For anyone else who works at the funeral home, if they are given a simple task such as, “go to Toronto General Hospital and pick up a body from the morgue”, they grab the keys and whistle Dixie right out the door.  Not me.  As soon as I’m told to drive somewhere, the knot in my stomach starts to tighten and the blood rushes to my head.  Immediately, my brain goes into overdrive about how many times I’m going to have to change lanes, what time it is so I can gage traffic, how many left turns there might be, if I may need to back up somewhere, etc. etc.  My hands shake as I grab the keys and feel like I’m going to vomit the entire drive there and back.  There is ALOT of driving when you are a Funeral Director intern.  Drop off flowers, pick up Clergy, drop off body at the crematorium, pick up cleaning supplies, drop off body at the airport, pick up body at the morgue, etc. etc. etc. I can’t back the Coach (aka hearse) up into the garage and I can’t park the lead car completely straight under the carport.  I feel embarrassed.  I know I have so much to offer, but the driving is not showing anyone what I’ve got, but rather just points out my weaknesses.  Aimee holds me at night when I come home crying and says, “You can DO this!  You’ve done harder things”.  But that’s the point, I tell her, I don’t want to do hard things anymore.  I’m tired of doing hard things, I want something to be easy and fun and enjoyable.  I want so desperately to do this, and to be good at my new career, but each time a situation occurs that necessitates me driving, or doing something unfamiliar and stressful, my stomach knots up and that voice inside my head gets louder and louder, “You can’t do this.  It’s too hard.  Quit”.  Some days I don’t know how I’ll make it.  Other days, something almost magical happens and I get a moment of pride and accomplishment that spurs me on to the next day.  At one point last week I had a particularly trying day where another Funeral Director reamed me out for multiple things, and I was a mess of nerves, my spirit broken. 15 minutes before the end of my shift, a young couple came in to pick up the cremated remains of their stillborn baby.  As they sat on the couch waiting for the impersonal cardboard box that contained their broken dreams and hopes in it, I recognized their name and remembered that it was I who had looked after their baby.  After talking myself out of it half a dozen times, I went up to them and introduced myself.  “Hello,” I said, “my name is Mishi.  I see you’re here to pick up Baby C. I just wanted to let you know that I was one of the people who looked after her.  I wrapped her in a hand-knit yellow blanket with a matching little hat that had a pink ribbon on it.  I held her and took good care of her for you”.  When I saw the look of relief come over their faces and the tears roll down their cheeks, I felt like it was the right thing to do.  I wanted to know that Stella was looked after once I handed her over to the Funeral Home, and I think that these parents needed to hear that as well.  I felt good about it.  Even though the situations are totally different, sometimes plodding through this new career stuff feels much like navigating Stella’s illness.  It’s all a big unknown, a leap of faith. A long, exhausting journey that has lessons around each corner…some welcome, some not so much.  It’s a reminder about the extraordinary things human beings can do, but also about the fact that we all have our limits.

My life is, ultimately, a love letter to my daughter.  A promise to live life the way she did—- honestly, fully, defiantly.  So, whether I am mulling over Hugo’s birthday, Gracie’s latest growth spurt, traffic jams or what ice cream flavour to choose, I am taking it all in.

I am loving what I have.  And on the hardest days, I have a great big bowl of ice cream for breakfast.

These boys mean everything to us.  Sam wishes Hugo a happy 2nd birthday!

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Family pic at the cottage:

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Gracie and her cousins go shopping:

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Stella, 8 weeks before she died, giving Hugo cuddles:

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Ready, Set, Go

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I don’t have much time to write anymore.  I don’t have much time to do anything anymore.  Working close to 50 hours a week as an intern funeral director and balancing that with the needs of an almost-2 and almost-3 year old in addition to all the regular crap like laundry and dishes and bill paying and there just isn’t much left.  In some ways I feel the same way I did when each of the kids was a newborn…overwhelmed, anxious, excited, happy, sad and, of course, your biggest craving is for sleep, and you never seem to be able to get enough.

So here I am, 2 months into my one-year internship in Funeral Services and I want so badly to love it— I’m trying hard to love it all the time, but the thing about being an intern is that you have to learn how to do everything, and that includes (to a large degree), the less glamorous parts of funeral services.  Such as vacuuming an entire funeral home (including Chapel), scrubbing urinals, picking up garbage, cleaning out rain gutters and hauling oversized funeral flower arrangements from the funeral home to the church and then cemetery.  It’s all part of the job, and it’s all important work, but I’d be lying if I said it isn’t backbreaking, monotonous and stressful at times.  I find I spend much of my day being anxious about whether or not I am doing something correctly and/or safely. Luckily the people I work with have been exceptionally patient and generous with their knowledge and there are moments that it all seems to mesh, and I feel really good.  But there are also moments I want to burst into tears and run away.  A lot of my anxiety has to do with how new everything is.  There is a massive learning curve for me happening, but at the same time Funeral Services is not the type of industry that you can make very many mistakes in.  The result of these two things is that I am living at a high level of stress most of the time.

Stella is what gets me through the hard days.  The ones where I get home after 11pm at night, knowing I need to leave for work again by 6:45 the next morning, without seeing my kids or wife at all.  The days there is a baby or young person lying on the embalming room table.  The days when I make a mistake and 15 different people at the funeral home make jokes about it.  The days I feel lost and overwhelmed; incompetent and useless.  When I feel like giving up, admitting defeat and applying for another desk job, I reach inside and find my inner Stella Joy.  The stubborn, fearless, unrelenting parts of her that I promised I would adopt to my own personality after she died.  And then, somehow, just like she did, I keep on going.  I can see huge changes in myself already and there are many things I’ve accomplished during this internship that I’m proud of, so I think that no matter what happens long-term I will be grateful for the growth and lessons I experience each and everyday.  It’s sure as heck never boring!!!

I keep a Stella Star in my locker at work and when I’m rifling through in the morning looking for the appropriate outfit (we have funeral suits, evening suits, grubby clothes and embalming uniforms), it swings and clangs against the metal sides.  Her photo always catches my eye as it’s crookedly taped to the wall next to my schedule.  “Good morning, baby” I always think to myself.

Stella has been dead for almost 2 years now.  I can hardly believe it.  I can hardly believe it’s been that long since I felt the soft, warm weight of her body nestled into mine.  It’s funny because during the first year I feel like I really needed concrete reminders of her.  My “F**k you cancer- Stella bracelet, my Stella necklace, one of her little t-shirts, photos, etc.  But now I feel as though she is steeped right into my pores and when I breathe and think and speak, she is part of all of it but without me thinking consciously about it.  Just as she once physically lived in me, now she mentally lives in me.  I am different because of her.  I am better because of her.  And I see her in her brothers as well.  The boys are active.  They are running, talking, leaping little people.  It takes a team of us sometimes to spell each other off on all the energy the boys need to shake before they can collapse into bed.  Even as Aimee and I are sitting in their room reading books to them, they are running around us, jumping from the bed and chasing each other in circles.  Their energy is beautiful and their smiles as they sit side-by-side eating crackers from a bowl in their pyjamas and giggling as they wiggle their toes makes me want to freeze time and never leave that moment.

I can’t believe how much they are changing and growing.  Much of Stella’s physical growth stopped at 26 months of age, so it’s been amazing to see the growth and changes in Sam, who is 33 months now (if you even count in months at that age).  He hasn’t met anything he can’t climb, cocks his head to the side and says things like, “You fell Xavier?  That’s why we don’t run here, we only walk”, tells me I’m beautiful and starts most sentences with “hey guys…”  Hugo runs along behind him, a little ball of excitement and single-mindedness.  I feel like I have finally arrived at the place that DIPG robbed Aimee and I of that warm June day in 2011.  I have arrived at the moment and age where our kids are old enough to be signed up for soccer and gymnastics, to go on playdates without a parent, to talk and grow into their personalities.  Time continues to march forward, and it seems impossible to think, or to say out loud, but Aimee and I and our family…we are okay.  We are happy.

And being around death all the time certainly has a way of helping to keep me focused on what’s really important.  Death really and truly is a random thing.  The youngest body I’ve had on the table in the embalming room was a 15-week old baby.  The oldest was a 103 year old man.  But I’ve seen everything in between too.  Young, old, frail, strong, sudden death, long illness, suicide, murder.  It doesn’t matter how or what or when, it’s truly the one common denominator of all living things.  And I’ve sat through dozens and dozens of funeral services now.  I can tell you I’ve never once had anyone say in a service or eulogy that someone would be missed because their house was always cleaned and organized, or their clothing was ironed nicely.  No one ever says they will miss the fancy car that person drove, or the expensive house they lived in, or the Rolex watch they wore.  All these “things” we spend our lives collecting turn out to be totally meaningless after all.  When someone dies, the stories that are told are about kind gestures, generosity, making other people feel good, loving and being loved.  I try to remind myself of this on a daily basis when I start to feel overwhelmed by staying on top of work and life.  Life isn’t laundry, life is laughter.

So, for any loyal blog readers left out there who have been checking in and seeing no updates for awhile, my apologies.  We love that you still check in on us, and love that you still care.  If I’m not writing, it’s probably because the boys and I are spending the evening looking at a rainbow and wishing on a star and by the time we finish…we’ve fallen asleep (o:

“Perhaps our eyes need to be washed with tears once in awhile, to help us see clearly again”  - Alex Tan

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Set…

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GO!!!!!!!!

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Poppa reads the boys a story: 

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Big-girl Gracie reads to her cousins:

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Hugo’s silly face:

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Ice Cream for Stella:

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Stella and Mama, September 2011:

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D-day (By: Aimee Bruner)

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By: Aimee

Three years ago today, my life fell apart in the dim light of a hospital room at 12:30a.m. With cartoons playing on an old TV attached to the ceiling, Mishi snuggled into the hospital bed, cradling Stella in her arms, I was curled up on the hard bench attached to the wall, slowly drifting into the state you reach seconds before you fall asleep.  Then it all stopped.  The door swung open, a sliver of light filled the room and a team of doctors in scrubs lined up along the wall.  As the lights came on, one of them started to speak.  To this day, the only words that came out of  “Dr. Doom’s” mouth that I remember are “mass”, “brain”, “oncology”.   I remember Mishi lurching forward, looking at me in hopeless desperation and saying “Aim – NO NO NO!”  I was frozen, unable to move, just watching it happen.  One of the residents had to help me move across the room to be at Mishi and Stella’s side.  Stella knew something was wrong right away and started to squirm to look at Mishi.  Mishi’s eyes rolled back in her head and she fainted – out cold.  Our world was exploding and we were being crushed under it’ weight.

 

There we were, alone – losing everything we had.  Earlier that night, we had sent our family home because we were told that we would not receive the MRI results until the morning.  As four doctors worked on Mishi who was still unconscious, I was franticly trying to clutch Stella in my arms as she screamed for her mama – “I want my mama!  What’s wrong with mama?!”  As she hit and kicked me, I managed to get my cell phone out of my pocket.  I needed my parents and I needed my sister.  They came.  They came right away – and they never left.

 

Although the excruciating moments that unfolded over the next four days and the weeks to come will never be gone from my memory, I won’t recant them any further on this page.  Mishi has since been diagnosed with PTSD from the experience of Stella’s diagnosis and I won’t drag her back through it on this blog that is so sacred to her.  She won’t be reading this post as I’ve warned her not to.  It’s just too hard.

 

From the very beginning, my defense mechanism has been a form of denial that only allowed me to take in minimal information at a time.  When Stella was diagnosed, I was the only one in my family who didn’t Google DIPG.  I was afraid to.  Just knowing that my daughter was going to die from an inoperable brain tumour wrapped around her brain stem was enough information that my mind, heart and soul could handle.  Lately however, three years later, I’ve found myself wanting and needing to know more.  Mishi and I made the decision early on to donate Stella’s tumour.  Two weeks after her diagnosis, after we watched our daughter be wheeled out of the doors of the pre-op room on her way to the O.R., where they would biopsy her tumour, there was a nice, quiet man hovering by the door way.  I knew why he was there and as we walked out I said to him “are you waiting for us”.  He said “yes” in a meek, nervous voice and as he clutched onto his clipboard we put him out of his misery.  We asked him if he wanted to know if we would donate Stella’s tumour and he said yes.  He handed us a package that was an inch thick and I can tell you right now, neither one of us read a word of it.  We just asked him where we needed to sign and that was it.  The details of what we had just signed to were not important to us.

 

After Stella died, people kept asking us when/if we were going to find out what they learned from the donation of her tumour.  I wasn’t ready.  As little information as possible – that is how I had been coping.  For the past few months however, I’ve been haunted by the feeling of not knowing and I realized that I needed to know what the tumour looked like, how big it was or whether it looked different because it was never treated with chemo or radiation.  I found myself wanting to know why Stella was an “outlier” from the beginning.  I needed to know it all.  They cut into my baby after all – I deserved to know.  So after reading about Stella’s pathologist, Dr. Cynthia Hawkins, who just received a million dollar grant for her groundbreaking  research and recent  DIPG discovery – I made an appointment.

 

Two weeks ago, my mom, sister and I walked through the doors of SickKids hospital once again.  Immediately, my stomach was in knots as we rode the glass elevator up to the 8th floor.  “The 8th floor” – a term that three years ago meant something different to me.  As a long time employee of Camp Oochigeas, “the 8th floor” is a term that I am all to familiar with as it’s mentioned multiple times a day.  It’s where the magic happens.  Where kids with cancer get to participate in camp programs led by my incredible co-workers who are so good at making kids smile.  Now, “the 8th floor” is where I was going to hear the results of my firstborn child’s autopsy.

 

As we sat in the same room that we did three years ago, when they delivered the news that the biopsy results confirmed that Stella did indeed have DIPG, I could feel myself going into “robot mode” for survival.  Stella’s Oncologist, Dr. Bartels and her pathologist, Dr. Hawkins were very gracious and spent an hour with us.  They answered all of the questions we had and they let us look at the scans from Stella’s MRI.  Yes, it’s true – that was the very first time that I laid eyes on her scans.  Survival.   In the days leading up to this meeting, I had prepared myself for the moment that we looked at scans of her brain.  I am still triggered by any images of the brain.  I was prepared to see the tumour.  I was prepared to feel sick and sad.  What I was not prepared for was the impact of seeing the outline of her face on the scan.  There she was, my beautiful little girl, with her turned up nose, defined chin like her Poppa, and her perfectly round head.  I wasn’t looking at a brain – I was looking at my Stella.  I swallowed hard, blinked the tears from my eyes and tried to suppress the overwhelming sick and sad feeling that was washing over me.  My sister snapped a photo of the scans and I later sent them to Stella’s Auntie Ray who says that the tumour looks like a monster.  She is right.  It does.  It was.

 

After peppering the doctors with questions, we learned that as it turns out, not only is Stella’s tumour being used in the DIPG research – her little brain is changing lives.

 

It is playing a significant role in the groundbreaking research that Dr. Hawkins is currently doing.  Dr. Hawkins has discovered that there are 3 sub-groups of DIPG.  Stella fell into one of those sub-groups.  Through recent learnings, they have been able to determine that there are certain types of DIPG tumours that will never respond to radiation.  This will allow doctors to tailor treatments to each child based on the type of DIPG tumour they have.  In laymans terms – kids with tumours that will not respond to treatment will potentially not be radiated at all.  Stella’s tumour is constantly being referenced and compared with other cases.  For many reasons, I find so much comfort in that.

 

 

So Stella – on this day, as my heart sits heavily in my chest, I want you to know that YOU are changing lives.  YOU MATTER.  I miss you every minute of every day and I’m so proud of the impact you’ve had on this world.

 

Mommy loves you big girl.

 

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Happy Father’s Day, Daddy

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Dear Dad,

Working in Funeral Services over the past month, I have had the privilege of watching many, many funerals.  Several of them have been the death of a man and, at the funeral, his children give short eulogies honouring their father’s life.  It’s been interesting to hear all the things, over a lifetime, that children choose to talk about once their father passes away.  I reflected on what a shame it is that only after someone dies, do we take the time to tell them how wonderful they are.  I began to think about what I would say if someone charged me with the task of summing up in just a few minutes, what my dad has meant to me and my life.

So, for Father’s Day this year, (because I was too broke and disorganized to come up with a better present), I have decided to write a Eulogy for you.  This way, you know how important and wonderful you are, and can be alive to bask in it (o:

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Eulogy for my dad- Noel Methven*

      * not dead yet, and I’m so glad you’re alive and well!!!!

Noel Methven was many things to many people over his lifetime.  He was a son, brother, uncle, friend, husband, boyfriend, grand-pa, musician and business owner.  But of all the titles he has held, there are only two people in the entire world who had the privilege and pride of calling him “dad” and that’s my sister Heather and I.

 

Noel Methven was a great father.  The best dad anyone could ever ask for.  He would have given Heather and I the moon if he could have.  No matter what was going on his life, or how old Heather and I got, he was always right there.  I don’t remember him ever saying “no” to us.  He said “yes” to a $600 dog I wanted, “yes” to paying for accordion lessons, “yes” to driving Heather to Buffalo to check out a University, “yes” to co-signing a loan for me, “yes” to buying me 6 budgies and a turtle, “yes” to playing trumpet at my wedding, “yes” to driving our kids to Scarborough (1.5 hours roundtrip) every single weekday morning for daycare and “yes” “yes” “yes” to any and every request we ever made to him.  One of my earliest memories is my dad and I at the old Harborfront Antique Market.  I desperately wanted a collectible teddy bear from a vendor, but it was expensive.  I put out my bottom lip and pouted the way only a 6-year old can, and my dad, with no hesitation, went and bought me the stuffed animal I would love and cherish my whole life,  “Jacques”  (also known as “Jacky-poo-poo”).  When he handed it to me, I remember running my finger over Jacques’ threaded mouth and musing out loud, “he looks a bit sad”.  “Oh, ok” replied my dad wryly, “if he’s not happy with us, then let’s return him because he cost me $65”.  Then he patted my head and laughed at my horrified face.  I loved to watch my dad laugh.  He would throw his head back, and if it was something really funny, no sound would come out.  When he laughed his mouth opened, the corners of his eyes crinkled and he laughed right from the heart in a way that was catching.

 

Because he worked from home, my dad looked after Heather and I when we were home sick.  He went on class field trips, brushed tangles out of our hair, made bologna, ketchup and butter sandwiches for our lunches, and sometimes— with mixed results— tried to buy us clothes.  I remember one year he proudly presented Heather and I with matching sweat suits.  Heather’s was pea green, mine was corn yellow, and there were silk ribbons sewn up the sides of the pants and sleeves.  He was proud of those sweat suits.  Heather and I were horrified.  We wore them once at my Nana’s cottage, and then hid them until we outgrew them.  But, of course, there were photos taken that one day that we wore them, and so the sweatsuits live on forever in family photo albums.  I have memories of him reading me the Bernstein Bears at bedtime, playing hide-and-go-seek and his lame attempts at cooking Heather and I dinner. “Chicken in a bag” was a perennial Noel Methven favourite and if you don’t know what that is, count yourself lucky.  His own parents, who lived a block away, got used to seeing him every single day of their lives.  When they were alive, he would pop in a few times a day to make sure they didn’t need anything.  When I grew up and bought my own house, right across the street from him of course, he took to popping into my place, often bringing milk for the kids, or little twinkies from the variety store he would sneak to me when no one else was looking.

 

My dad loved a good deal.  The $1.49 breakfast at Ikea was always a big hit and “It was on sale, so I bought 7 of them” was a common quote.  We made fun of him and his tendency to never give up a deal if he thought he found one, as well as his habit of picking up a perfectly good “whatever” from the side of the road, or keeping for decades something he figured someone would need someday.  I used to tell him that most people, when their garage gets too full, clear out some stuff.  Not my dad.  He would just build another garage.  At one point he had two garages chock full of stuff as well as a temporary garage tent thing set up behind his house.  No backyard, just rows of garages.  Later on in his life, he “borrowed” space from other people on the street and had things in multiple garages around the neighbourhood.  The way some people collect stamps, he collected garages.  But, even though we made fun of him, if we needed anything we would just make a call or take a walk over to “Methven’s Hardware” store as we called his sheds, and it would be there.  Vacuum cleaner?  He bought 3 on sale five years ago, take one.  Window?  He has 6 leaded glass ones he got from a house they were knocking down in 1995.  Church pew?  Yep, we have two of those -one from Riverdale United and one from Simpson Avenue.  Screws, nails, marble countertop he’s had since 1976, doors, hinges, bookshelves, scrap wood, antique washing machine, mini fridge, carpet scraps, birdcage.  And that’s not counting what he stored in his attic.  Sometimes, just for kicks, I would call him from the car and say, “Dad…the people at #221 are throwing out a perfectly good wooden chair…”  By the next morning, it would join the pile in one of the garages and my dad would spend a few days fawning over his new find before it got banished to the back corner of the shed, sure to be used by someone at sometime, “someday”.

 

Speaking of neighbourhoods, my dad never really left his.  He lived his entire life within the same 5 block radius of East York.  When I was a teenager/young adult going through the horrific, “I know it all stage”, I thought my dad was dreadfully un-cultured.  He spoke no other languages, had never gone to college or university, had no interest in art or theatre, didn’t have any desire to travel.  He had the opportunity to travel a few times in his life, but he was never that interested in seeing the world.  I asked him once if he could go anywhere, where he would want to go.  He was silent for awhile, and I thought he was thinking about all the incredible and exotic places there are to go.  But, when he responded, he just shrugged and said he was happiest just spending time at home and didn’t feel the need to travel.   As an adult, I realized that my dad might not have seen the world, but he had instead invested his time in something a lot more precious— cultivating friendships.  He knew the names and stories of every single person who lived on our block.  I have lived there almost as long as him, and don’t recognize people who live three doors down.  My dad not only knows them, but has probably mowed their lawn and met their brothers and sisters at a family BBQ.  Looking back, I realize that this makes him a much more learned and cultured man than anyone else I know.  I may have seen the Tower of Pisa, but he helped an elderly lady shovel snow and at the end of the day, that is much, much more important.

 

As I grew up, I realized my dad had life figured out better than a lot of other people who might think themselves more worldly, more educated, richer, smarter, better.  Anyone who believes that doesn’t get it.  My dad was happy with what he had. He knew what was important.  Family.  Friends.  Health.  That was it.  He found true joy and pleasure in the simple things of life.  A really good chocolate soft serve ice cream cone.  Hearing the life story of someone else.  A cold glass of Pepsi.  A sunny day spent with friends and family outside.  He understood what really matters better than anyone else I know.

My dad had tea and toast for breakfast almost every single morning of his life.  The toast would either have raspberry jam or corn syrup dumped on it.  He liked meat, potatoes, white wonder bread and doughnuts.  He never pretended to be someone he wasn’t, which gave my sister and I the ability to be our own people without worrying what other people thought.  What an amazing role-model.  He didn’t need to continue to experience and search for things, because he was perfectly happy with what he had.

 

A few years ago, my dad was sick in the hospital for four days with a ruptured gallbladder.  It was the first time in his life he ever had to be in hospital for anything.  When he got out, he told me that he was so grateful to be able to walk around and be healthy again that he wanted to mow lawns.  That was 6 years ago and he mowed lawns regularly ever since.  He mowed at least 5 lawns a week in the neighbourhood, including mine.  The funny thing is, my dad didn’t even have a lawn.  He had a paved front yard, but he bought a lawnmower just so he could mow everyone else’s lawn.  That’s the kind of guy he was.

 

Later on in his life, I used to tease my dad and say he was like a goldfish because he didn’t remember things, so like a goldfish swimming around and around in its bowl, rediscovering the same piece of plastic seaweed, he was constantly experiencing “new” things— even if he’d experienced them before.  One of our cousins makes a Boar Stew and passes it on to us every couple of months.  Without fail, my dad used to open up the fridge, see the container and say, “Boar stew?  I’ve never had that before, I’d like to try it”.  Then he would eat a little and say, “That’s very good.  Different…tasty”.  A few months later when it reappeared in the fridge, he would go over the same exercise again, telling me he’d never had it before.  I didn’t mind.  The same forgetfulness served Heather and I well with gifts and borrowing money.  He could never remember what we had given him for Christmas or his birthday, or if he had leant us money, so we stopped giving him presents and stopped paying him back. It worked great for us.  Of course, sometimes it worked against us.  For example, one year he was snowblowing our driveway, which I know we should be grateful for, and he ran the snowblower up the side of our car, scratching it from bumper to bumper.  But whenever I brought up that story, he always said he didn’t remember doing that.

 

My dad didn’t always talk a lot, but he didn’t need to.  He lived his life by setting an example for my sister and I.  He was always there when we needed him, would drop anything to come to us if we called.  When my daughter Stella got diagnosed with a DIPG brain tumor in June of 2011, the second night in the hospital when I woke up in the hospital bed clutching my precious baby, wracked with the immense pain of pure grief, I saw my dad sitting at the bottom of the bed just looking, waiting for me to wake up.  he had arrived sometime in the middle of the night, unable to stay away when he knew how much I needed him.  He said nothing, just squeezed my feet under the sheets and stared at me, his own eyes and face just as drawn and devastated as mine.  Stella was my little girl, but I was his little girl, and his heart was breaking for me.    Throughout Stella’s illness, my dad came over every single morning, 7 days a week and made breakfast for us.  He got Stella anything and everything she wanted day or night.  Doughnuts, cupcakes, presents.  When Sam, Xavier and Hugo were born, they soon learned that “Poppa” was the person to go to for treats.   All three of his grandsons adored him and clamoured, “Poppa, poppa!” whenever he walked through the door.

 

My dad had a lot of things he could be proud of.  He ran a successful rubber stamp business from home for over 25 years.  He was one of the premiere trumpet players in Toronto.  He could build a fence, or a garage, do wiring, painting, plumbing.  But he used to give Heather and I big hugs all the time and tell us that he was most proud of us.  And I believe that.

 

My dad has taught me so much in my life, and though he is gone, his legacy will be all of the ways he shaped my sister and I in our lives, and all of the lessons, both big and small, he imparted on us.

 

My dad taught me that after you eat the savoury part of the pizza, the crust is really just like a piece of freshly baked bread and if you add jam to it, you have dessert!

 

My dad taught me that Pepsi is a breakfast drink.

 

My dad taught me not to sweat the small stuff.  In fact, he never sweated anything— big, small or monumental.

 

My dad taught me to always carry Werthers butterscotch candy in my pockets.

 

My dad never told me how to live.  He just lived, and let me learn from his actions.

 

Daddy, in my thoughts

in my heart

in every part of my life.

You are always with me, dad.

And always will be because you live on in me, Heather and our children.

 

I love you and I’m so glad this is a FAKE eulogy and I will have (hopefully many!) more years to love and learn from you.

 

 Aimee and I are so blessed to have such incredible father’s!

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Stella and her beloved Poppa (May, 2011)

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Daddy, Me, Heather and Stella (July, 2011):

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Poppa and Hugo, April 2013:

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Poppa and Sam, July 2013: 

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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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Jersey's

 

Finish Line(2)

 

 

Sesame Street Land, August 2011:Stella Elmo

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