Joy and Sorrow

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Khalil Gibran says of Joy and Sorrow:

“Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that holds your wine the very cup that was burned in the potter’s oven?

And is not the lute that soothes your spirit, the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.” But I say unto you, they are inseparable.

Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced. When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.”

 

Aimee and I are missing Stella a lot these days.  Maybe it’s the weather.  Maybe it’s the impending October 22nd date.  But I think it’s just that she’s been gone for what feels like a long time now, and since our lives have settled into a “new normal”, we feel her absence deeply.

 

I recently admitted to Aimee that I’ve been staring at the big blow up photos we have of Stella.  They are the posters that our friends Ray and Brad made for Stella’s funeral and if you look closely, you can see the pores of her skin.  You can even see little droplets of milk in her downy blonde moustache.  And her perfect little teeth, all lined up in a row with a little space between the two front ones.  I find myself spending copious amounts of time staring at each laugh line and eyebrow hair, willing myself to remember exactly what she looked like.  I stare at her curls and marvel at home some of the photos were good enough to capture the colour of each individual strand.  Some are blonde, some are red, some are so light they look white.  After I admitted this to Aimee, she confided that she, too, had been looking at pictures of Stella.  She said she looks at ones on the laptop computer and zooms in as close as she possibly can to her eyes and the curve of her cupid-bow lips.  In our own ways, we are both desperate to hang on to the details we remember about her body.

 

When I look at her photo and run my fingers over the flat cardboard, wishing with all my heart to feel some warmth underneath, the physical pain I once felt all the time returns instantly.  It’s a weight in my chest that has sharp edges to it.  It makes me feel as though I am carrying 100 extra pounds just beneath my ribcage, and it hurts to breathe sometimes.
As we integrate ourselves back into the “outside” world, I struggle to remember that Stella’s life was not just a flash in the pan, but a real and meaningful journey.  I have transitioned back into a world where people push each other away from subway doors, click their tongues loudly when they feel the Tim Horton’s cashier isn’t moving fast enough, and become one of the masses.  A nameless, faceless figure moving through the hallways of school, fading quietly into the background as I assimilate with the other students.  It is hard in this environment to remember the beauty and safety that was my life for 16 months.  16 months where, though we were doing something impossibly sad and difficult, we had people holding our hands the whole way.  Now we have been released into the big, bad, world and though I’m much more sure of myself then I once was, Stella’s cancer has made me cautious.  I guard my heart and keep my cards a bit closer to my chest.  I have known pain and sorrow and gone to dark, dark places and am in no hurry to go back.

 

I was giving the boys a bath last night, and for some reason I flashed back to the morning after Sam was born.  I had the worst anxiety attack of my life just after he exploded into the world.  I sobbed in my father’s arms in the hospital feeling as though I were being sucked into a big black hole and that if I let go of his fuzzy orange shirt for just one second, I would never be able to climb back up again.  I remember going home feeling completely drained, exhausted, sleep deprived, and  stressed beyond belief.  I went into the bathroom and just collapsed on the ground.  I was so, so sad.  Devastated that the little boy who was just born wouldn’t get to know his big sister.  Plagued with memories of the happy day Stella was born, and the knowledge that she would soon die.  Distraught that I wasn’t at the hospital with Aimee and Sam where I wanted to be because I hadn’t been strong enough.  I didn’t know how I was going to muster the strength to get up off that floor, let alone see Stella through her cancer and eventual death.  I remember feeling the cool tiles on my cheek and the painful waves of sadness that ricocheted through my body, ripping through everything like a grenade.  It was darkness and pain.  I shook myself out of the memory and stared at Hugo and Sam who were playing their own version of “peek-a-boo” together and belly laughing.  The pure joy and delight they were experiencing was such a contrast to the dark place I had been that day.  I remember the thing that got me up off the floor was the knowledge that Stella was sitting, waiting for me to join her on the couch and watch Dora The Explorer with her.  I reflected on how first it was Stella herself, then later Sam and Hugo who were the reasons I got out of bed for many, many, months.  And though I am working on building our life back up by going to school and starting new routines and new memories, I don’t think I can yet say that I get out of bed for myself yet.  It is still my children that keep me going.  I think I’ll get there.  Get to the point that it’s my whole life that makes me happy, but right now I still have lots of times that I want to pull the covers over my head and disappear.

 

I miss Stella’s cackle.  Miss her grin when she knew she was about to get in trouble.  Miss the soft clicking noise she made when she slept.  I miss buying little girls clothing and dressing her up for the Holidays.  I miss listening to her sing the Golden Girls theme song, and dance her heart out.  I miss looking down at the crook of my arm and seeing her face resting there, long lashes resting softly on her porcelain skin.  I miss the “blam blam” ice cream march that we did every day, twice a day to get her to take her medications.  I miss stretching my imagination to find things to do with her on the couch; tea parties, pedicures, puppet shows, reading, singing.  I miss having a singular focus and goal, which was to keep her happy.

 

I used to always make wishes, but now I don’t know what I wish anymore.

 

For a long time, I wished (of course) that she had never gotten DIPG.  Now I’m not so sure I can wish that anymore because if she hadn’t gotten sick we would never have had the incredible perspective we have now.  We wouldn’t have Hugo.  We wouldn’t have the knowledge of how to parent in the present. We wouldn’t have many of the amazing friends that fill our lives with joy whom we met through Stella’s illness.  We wouldn’t have the same level of simplicity and honesty and fearlessness in our lives.  Yet it seems crazy to say you wouldn’t wish that your child was here and healthy.  It’s like being locked in between shadow and light.  There are so many things I don’t understand, so many things that make no sense to me now.

 

But I know that when I see the leaves turning I miss my daughter.  And though I can’t say that I am unhappy in my life, I am sad at moments when I allow myself to fantasize about how she would look and what she would be saying to me right now.  Aimee and I fluctuate between moments of tearful disbelief, powerful sadness, huge gratitude, intense pride, and pure joy.

 

I think it is as I’ve always suspected; that happiness and sadness exist together in my world and in my heart and there is a place for both of them.  Someone once said that if you think of life as a piano, the white keys are the happy times, the black keys are the sad times, and only when you play them together do you get the purest, most beautiful music.

 Sam and Hugo play their own version of “Peek-A-Boo”IMG_4428

Sam enjoys his yogurt:IMG_4286

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photo-31 Our friends Holden (3) and Nate (4) ran in honour of our girlIMG_4396

 

IMG_0727 Missing You Stella.  October 2011

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It’s Raining, It’s Pouring

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It’s Raining, It’s Pouring

 

So Monday came and went, the dreaded “Diagnosis Day” anniversary.  I was quite emotional leading up to it.  Aimee and I cried a lot, hugged a lot. I personally decided to mark the day by doing something in Stella’s honour- getting my learner’s permit for driving.  Driving is something that I’ve always had a huge fear of.  I tried to get my license when I was 17, and instead became so scared of driving that I’d given up completely on the idea.  Even standing on a street corner and watching Toronto traffic makes me feel anxious and out of control.  But my beloved Stella has died, and I promised myself that I would honour her by living each day with a bit of “Stella” in it, which means fearlessly and without boundaries.  For me, this includes getting over my phobia of driving and trying it again.  So, on Monday along with a group of about 25 youth with braces and acne, I wrote my Learner’s Test and signed up for driving lessons. I fiddled with my Stella ring and bracelet the whole time, and passed!  So now I can officially learn to drive (that’s how it works in Ontario, you need to pass a written exam to be allowed to learn to drive an actual car, then two more road tests before you’re a fully licensed driver).

While I was sweating it out doing my written driving exam, Aimee went to Stella’s tree in Riverdale Park with her mom and sister. They hung ribbons, sat in silence, and cried.  Then they went across the street to Necropolis Cemetery, where Stella’s plaque in the scattering garden was finally installed after months of waiting and perfecting.  The end result was lovely, although I still find it sickening to see my child’s name on a funeral marker.  Later, Aimee and I spent 3 hours in Ikea.  It was fitting somehow.  Ikea is a big, overwhelming and generic place with no windows or clocks.  We wandered around and allowed ourselves to get lost in the world of trying to decide between blue or green dish towels. We ate boiled hotdogs and sat on couches to determine which was most comfortable. We wandered through the kiddie section and dreamed about when Sam and Hugo might share a room in bunk beds. Most of all, we just needed to be together.  Needed to walk around and be physically close, be emotionally there for each other on a date that changed our lives so quickly and harshly two years ago.  And in the evening, we lit a candle for Stella and shed a few tears for what could have been.  Then we snuck into Sam and Hugo’s bedrooms, gave them kisses and went to bed.  Just like that, the day was over.

Just as it had two years ago when our lives fell apart, the world just kept spinning and we were forced to either keep up, or drop out.  So, we got up the next day and kept going.  It just so happened that Tuesday in Toronto was a rainy day.  Periods of light rain, but also periods of torrential downpour that would soak you in five seconds flat.  During one of these periods of heavy rain, when the sky was black and the raindrops were fast, furious and large, Sam stood at the door and was insistent on going out into the backyard, saying over and over again, “Mama, rain”.  I am pretty good about letting my kids splash around in puddles and the wading pool, but there is something about a rainstorm that I still can’t deal with it.  It just looks so icky and cold and…well, for lack of a better word, wet.  But seeing Sam looking so forlornly out the window and knowing Hugo wouldn’t be home for at least an hour, I relented with a huge sigh and said.  “Okay.  We can play in the rain”.  A saying that I often repeat to myself is that if you’re not stretching your comfort zone a tiny bit every single day, you’re not really living.  So, I decided to get wet.  But I was feeling pretty grumpy about it.

Heading outside, I squinted and struggled to see between the raindrops.  It was miserable outside.  But Sam was ecstatic to be outside and ran, laughing towards the grass.  I stood aside and just watched him, still trying to shrink a little bit to minimize how wet I was getting.  But it was no use.  Within moments, I was soaked.  And then, suddenly, I was fine to be out there. Sam thought it was hilarious to run as fast as he could through all the rivulets that formed in our pea gravel.  He liked watching the sand in the sandbox turn to mud.  He slipped and slid down the slide, landing hard on his bum but getting up each time and climbing back up again calling, “Mama! Mama!” to make sure I was there to watch and kiss the “boo-boo’s” as he calls them, away. We got wet, we got dirty, but we also laughed a lot.  It reminded me that many times in my life I’ve been walking along and gotten caught in an unexpected rainstorm.  After the initial discomfort and trying to hurry along, there comes a time when you get so saturated, that there is no longer any point in running or trying to find shelter.  You accept the rain, and maybe even feel a bit exhilarated in it.  As my hair and clothing stuck to my skin in the backyard Tuesday, I felt very alive.  I was aware of the raindrops splashing on my freckled arms, aware of the smell of wet grass as I walked on the lawn, aware of the puddles my flip flops splashed into as I stood on the deck.  Suddenly, I had a memory of Stella in the rain.

One Saturday morning after Stella had awoken at her usual hour of 5am, I took her to the playground around 7.  It was raining out but I didn’t care, I just wanted to get out of the house as two hours of Stella in a tiny East York bungalow was past the limits of anyone’s capabilities.  I put her in a pink rain suit (pants and jacket) we had inherited from her second cousin Hannah, and we went to the park.  The rain suit was rubber and it prevented her from going down the slide.  She kept climbing to the top, of the slide, sitting down, pushing off and then she would get stuck on her way down, the wet plastic of her rain suit sticking to the slide.  It would have been my expectation that she would get frustrated by this, but instead she would laugh with delight and look up at me, ecstatic that she was defying all the rules and laws of slides around going up and down.  At one point, she even stayed in the middle of the slide, halfway between up and down, and requested her snack of crackers which she ate happily with the rain spitting down around us. That was Stella- embracing whatever came her way with awe and enthusiasm.  Delighted at the surprises in life, paying no mind at all to the fact everything was soggy and cold.

And it got me to thinking.  Sometimes there are hard things that come to us in life.  Things that just soak us right through to the bone with their difficulty.  We have two choices: run for cover, or turn your face up to the sky and welcome the rain.  Stella would have chosen rain every single time, so in remembrance of her, I turned my head up the sky on Tuesday and let myself feel every drop as it washed over me.

Because the truth is, without rain, there would be no life.

 Stella’s Plaque in the Scattering Garden and Necropolis Cemetery:

Sam feeds the lemurs at the (awesome!) Oshawa Zoo:


Hugo at the park:


Aimee pulls the boys around the Oshawa Zoo:


This is not how we normally dress Sam.  He is wearing one of Hugo’s outfits as he got his all wet…in the rain, of course!

Stella never got to learn how to drive.  But I think she would have been a daredevil!

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Permission to be Happy

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Permission to be Happy

 

Today is a perfect summer’s day in Toronto.  It’s 24 degrees, sunny, quiet.  There are birds fluttering around the tree outside and children everywhere, finishing their last week at school.  All seems well, except for the fact that Stella isn’t here.

 

Today reminds me so much of the Monday before Stella got diagnosed.  Aimee and I had taken the day off  and we went shopping then out for lunch.  Sitting on a patio at Yonge and Eglinton, our shoulders warmed by the sun, a lifetime of happiness stretched out in front of us. We ordered beers and toasted our lives together.  We marveled about how perfect everything was, how fortunate we were to have our daughter, with another child on the way.  We acknowledged how amazing it was that we had such a solid group of friends and supportive family.  We talked about how life was  beautiful, and agreed that we were the luckiest people we knew.

 

5 days later our world fell apart.

 

I’ve often thought about that day on the patio.  Thought about the fact that no matter how many wonderful, happy and incredible things happen in our lives, we will never again be as blissfully ignorant to the cruelty of the world as we were on that day. 

 

Monday marks the two year anniversary of when Stella was diagnosed with DIPG.  I think that this day, more than any other, brings back feelings of heartache and helplessness.  Last year on that day, though we were sad, there was still a feeling of triumph, because Stella was here with us, defying daily her prognosis.  But this year, it is yet another day without Stella. 

The nightmare and horror of diagnosis day sometimes bubbles to the surface of my brain, but I resolutely push it away.  I will not remember.  I cannot remember that day.  Bits and pieces of it flash like jolts of poison.  I remember the way my stomach twisted and turned as words tumbled out of some nameless, faceless Doctor.  I remember the mass confusion and the bloodcurling screams that rose up from a place so deep inside me, I didn’t even know it existed until that day.  I remember sitting by myself at 2am in the hospital hallway on a bench, sobs wracking my body as I wrapped myself in the skirt I had been wearing for two days, trying to convince myself not to jump from the balcony onto the shiny tiles below.  I remember waves of people coming with hugs and shocked looks on their faces.  I remember our friend Jeremy, sitting on a bench in the hospital hallway, looking at me with tears in his eyes. I remember Stella, the centre of everyone’s attention, blissfully unaware and playing happily day in and day out, delighted that all her favourite people in the world were there to see her.  Then I can’t remember anymore without falling into a deep, black hole, so I force myself to skip over that day in my personal history.   I choose to remember the days of sheer joy I felt parenting Stella when I gave myself persmission to love her for who she was, not who I wanted her to be.  I choose to rewrite history, so that I can survive it.

 

After Stella was diagnosed, whenever I pictured living life without her, my heart would constrict and the breath would come out of me in a huge rush of pure agony.  I had no idea how we were going to survive her death.  Now we’ve been living without her for 8 months and the pain isn’t as intense as I thought it would be.  It comes in waves or “landmines” as the DIPG boards refer to it as.  You just walk along living your life, until seemingly out of nowhere something hits you that hurts so badly it brings you to your knees.  But, surprisingly, more often than not, I am not overwhelmed with the pain and sorrow of losing Stella.  There isn’t a day that goes by that I don’t miss her, but she is almost like a beautiful dream to me now.  I look at photos of us together and if feels like a lifetime ago.  It has only been months since she was on this Earth, only two years since she ran, giggling through the park while I chased her.  But when someone gets DIPG and then dies,  time loses all meaning and so it might as well have been in a different life that I experienced her.  Sometimes I feel like I’m looking at someone else’s past when I see the pictures.  Did we really do all that?  Did we really survive the slow death of our first born, our daughter with the infectious smile and bouncy curls?  It’s often too much to comprehend and more often than not, I can’t spend too long looking at photos and videos, so I just close the laptop and focus on what’s happening in front of me, instead of what’s contained in that little silver machine with the apple on its lid.  And I’ve had to learn to give myself permission to feel happiness, without the inevitable guilt that tries to sneak in whenever my heart bubbles with laughter.

I find that, just as when she was alive, the only way to get through the days now that Stella is dead is by staying present in the moment.  Like everything else that’s new, it takes practice.  Sometimes I forget and I’m so busy checking my phone for emails or texts, that I miss little moments with my kids.  Sometimes I get lost in m own thoughts and memories and forget what I’m supposed to be doing or watching.  Sometimes the words I want to speak get lost in my chest, so I just stay silent then regret it later.  It’s not natural to live in the here and now.  Every message we receive from society is all about planning for the future, remembering the past and hurrying to get to the next marker in life.  But I’m still too bruised to live life that way, so I just take tiny steps.  I am not able to convince myself anymore that the future with my family is guaranteed, the way I was so certain it was on that sunny June day two years ago before Stella was diagnosed.  So I just take it a day at a time. 

When I’m home with Hugo all day, I often just sit on the floor with him and play.  I don’t think I ever did that when Stella was a baby, or even Sam.  It’s amazing just to sit with him and see what he sees, notice the way that the wheels of the truck spin, laugh at the sounds that come out of the Wiggles microphone, or discover hitting the book in the middle makes it squeak.  His looks of fascination and delight are like sugar to me, giving me a buzz of pure delight.  When I pick Sam up from daycare, we go to the backyard and I watch him play with the hose.  He is completely fascinated by the water that drips out of it.  Seeing my sons delight in the tiny miracles that surround us is what makes life livable right now.  I know that our decision to have Hugo so soon after Sam’s birth, in the midst of Stella’s cancer, was a controversial decision (in our own lives, not just online!), but I just can’t imagine life without the two boys that fill my heart and days with their curiosity, smiles, and energy.  They are the source of my strength, the reason I have given myself permission to be happy.  When I am at my best, it’s usually because  Sam and Hugo are around.

 

I miss Stella.  I miss her everyday, with every breath I take.  But I’m not sad.  I can say that with complete certainty.  The gifts that she gave me while she was alive, the perspective I gained from parenting such a special child, have made me a better person.  I don’t wish what happened to us on anyone.  In fact, I have trouble going on the DIPG websites and reading about newly diagnosed children because I have an idea of the living Hell these families are embarking on.  I feel so badly for them, and I feel so acutely heartbroken on their behalf.  But,  I don’t feel sorry for myself anymore.  How can I be sorry about a journey that has brought so much peace and perspective and love to my life?  So many new friends and a firsthand view of the generosity of other people and the boundless kindness that goes unnoticed if you don’t pay close enough attention.  I hate that Stella died.  Hate it and grieve for all that was lost.  But to be sad everyday would be to disregard all the lessons she taught me about finding happiness in the smallest spaces of your heart.  Kind of like dancing between the raindrops. 

 

Monday June 24th is going to be a very difficult day for all of us, but I am hoping to be able to take back some of the pure joy that Stella blessed us with during her life.  I never know until a day arrives how it will play out, but Aimee and I will spend the day together both mourning the child we lost, celebrating the children we have and honouring the range of emotions that come with each day.  Just like everyday, we will allow ourselves to feel both happy and sad, each feeling getting its own space in our hearts and lives.

 

Even after everything we went through, I still think Aimee and I are some of the luckiest people I know.  Just like two years ago, we will toast our lives on Monday, and remember the little girl who taught us more about life and love than anyone or anything else in the entire world.

 

“Cheers!”

 

“L’Chaim!”

 

and,

 

“Thank you for being a friend!”

 

Here is the video of an impromptu sing-along we had with Stella (Auntie Heather, Mommy Aimee, Mama Mishi and Uncle Tristan), a few months before she died of DIPG.  Finding Joy in the unlikeliest of places:

 

Life’s too short to not eat Chocolate Timbits, right Hugo!?

The endless fascination of a sprinkler:


Sam at Stella’s beloved Kimbourne, testing out the green paint:

GrandPa plays with Sam, Hugo and Gracie in his backyard:


Stella, 4 months old:


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Happy Birthday Big Girl! (By: Aimee Bruner_

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Happy Birthday Big Girl! (By: Aimee Bruner)

My firstborn and the love of my life turned four last Thursday. As I sit on our beloved couch and write this, an oversized helium balloon hovers over my shoulder. It has a big, yellow star on it and an even bigger picture of everyone’s favourite mouse – Chuck E Cheese. In black marker, it reads “STELLA 4!”

Right now, at Riverdale Farm, Stella’s tree shows signs of new life. Buds are starting to find their place on the branches and there are four balloons gently tied there, dancing overhead. The balloons are each a different colour – green, pink, purple and blue. Stella’s favourite.

On Thursday morning, Mish and I woke up under the weight of the day. This day that was once so sacred, so joyous, has become one that’s riddled with the greatest heartache we have ever known. She’s not here. On a day that we should have been racing around planning our daughter’s 4th birthday party, wrapping presents and putting the finishing touches on loot bags for her friends – we were baking a cake that she would never get to eat. We were wiping tears away as we piled into the van to go to Riverdale Farm to visit her tree. We were broken. We ARE broken. As we pulled up to the farm, our friends and family were waiting for us. We all took the day off work to be together and to remember our girl.

We brought the essentials with us – a “Stella Star”, a birthday candle and the biggest box of chocolate Tim Bits you’ve ever seen. The birthday candle was one that I bought last month and is in the shape of a 4. When I bent down to place the candle at the base of the tree, I felt like I could never get up. It was as if someone was standing on my chest, pinning me to the ground. I remember thinking “how the hell did we get here?” How is it that I’m leaning over a plaque with my child’s name and the dates marking her short life on it? It’s a question that I know no one will ever be able to answer for me. Just when I felt stuck there, holding the bottom of the tree as if it was a piece of Stella, that huge box of Tim Bits that Poppa had brought in memory of his girl, caught the corner of my eye.

There it was, sitting proudly in the middle of Stella’s bench that’s right beside her tree. A smile washed over my face and my cheeks forced the tears that had been brimming in my eyes, to fall. Stella loved Tim Bits. There they sat, right underneath her beautiful name. Not only did Stella love Tim Bits – she LOVED her birthday! Right then and there, the day became just a little bit easier for me. I wanted to celebrate her. I needed to celebrate her.

For the rest of the day, I found myself being comforted by the thought of her being so happy on her birthday. She would have let everyone know (in the loudest voice possible) that it was her birthday. She would have loved her number 4 candle and her balloons but most of all – she would have loved the fact that she was surrounded by all of her favourite people in the world. After making the rounds at the farm and paying a special visit to “Stella’s pigs”, Poppa played his famous rendition of Happy Birthday on his trumpet, our eyes filled with tears once again and we took the kids home for a nap. As family and friends started to trickle into our house, it began to fill with a soft but ever present energy. I know this energy. This is the energy formed by the people who held us up during the darkest days of our lives and it’s what became the small glimmer of joy that came out of the most horrific reality Mishi and I could have ever imagined for our lives. It was nice to have our house brimming with people again. I find so much comfort in having Gracie, my niece and Stella’s big cousin, around. Watching her bounce around the room, picking up Sam, reminds me of when she used to do the same with Stella. My heart breaks when I watch her make up her own games. I wish Stella was here to play with her, to keep her company.

I wish Stella was here.

Mish planned a big party at Chuck E Cheese for Stella that evening. She invited our family and friends, booked the reservation, ordered the food and made a cake covered in chocolate Tim Bits. She did all of this for Stella. She did this to celebrate a day. This day. This incredible day that marks the date that both Stella and Mishi came into the world decades apart. On a day that she should have been showered with birthday wishes and cracks about getting older – she ran a birthday party for her dead daughter. Not only did Mishi lose her daughter, she lost her birthday too (she’s asked us not to celebrate it because it’s too painful for her). I hope that one day, the thought that they share a birthday, makes Mishi feel tightly tethered to Stella instead of shattered and unraveled.

When we arrived at Chuck E Cheese, Mishi and I took a deep breath, held hands and braced ourselves for what we were about to walk into. Chuck E Cheese was exactly how I remembered it from the last time we were there with Stella – bright, loud, over stimulating and FUN! It really is a kids dream. Stella loved it (and so does Mishi). When we arrived at the table, it was flooded with decorations, party hats and balloons. I felt like my heart was in a vice, crushing further everywhere I looked. There was a big balloon tied to the table with her name on it, only, she wasn’t there. Her friends started to arrive and so did their parents – many of whom were wearing green for Stella. As people started to file in, it occurred to me, that they were there not only for us but for their profound love for Stella.

As we spent the rest of the evening running around, chasing kids, stuffing our faces with greasy pizza, dancing, laughing and crying – all I could think about was how much Stella would have loved the party. When it was time to sing Happy Birthday, you could feel the adults in the room quietly brace themselves. We sang Happy Birthday to our girl and then her best buddies in the whole world blew out her candles.

Happy Birthday Big Girl!





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Walk the Walk

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Walking the Walk

I was giving Sam and Hugo a bath the other night, when I glanced at the side of the tub and noticed a green crayon mark.  I smiled to myself as I remembered the day that Stella had (unbeknownst to me), thrown a green crayon into the bathtub while I was running it, so that when she got in, she was able to get a big green swipe on the pristine white porcelain before I grabbed it from her hand with a startled, “Stella, No!”  I remember she giggled and splashed at me as I tried furiously to rub it off the tub.  I thought I’d gotten it all, but evidently there was a second small scribble that I had missed because there is was, looking like a crooked smile on the inside of the tub.

As I sat there watching the boys splash around, I wondered if my reaction would be the same now if Sam or Hugo suddenly produced a crayon from the bubbles and began to colour.  When Stella did it, I was upset.  I was frustrated and gritting my teeth at the fact that the tub was “ruined”.  One of the things I often talk about to people and in my blog is Stella’s lesson about living each day to the fullest, and not sweating the small stuff.  I began to wonder if, 20 months post-diagnosis, 3 ½ months post-death, I’m truly walking the walk of living better, loving better and parenting better.

The thing about change is that it’s hard and long-term change takes a huge effort.  It’s easy to change for a short time, but sooner or later most people revert back to their most comfortable selves or place.  So I began to think about whether or not there have been any truly lasting changes that I’ve been able to make.  It’s so easy to say, “I’m living a better life”, but is there concrete proof of it?  Here is what I came up with:

I know I walk the walk of “People are more important than things”.  I’ve really stopped focusing almost completely on objects.  I don’t care if the clothes I’m wearing are “cool” as long as they’re comfortable and seasonally appropriate.    I am now a huge proponent of buying clothing at Value Village (thanks Heather!).  I can’t bring myself to pay full price for something in a department store when I know I can get good quality clothes for a fraction of the price.  They’re gently used, but I’ve never had anyone look at me or my kids and say, “hey…did you buy that used?”  I would rather spend time with my friends and family than clean the house.  If I was offered a high paying job that meant I had to work 60 hours a week, I wouldn’t take it.  I even (gasp!) let the boys play with my iPhone.  They both love watching videos of Stella on there, and because she’s my screensaver Sam takes the phone every morning and kisses her picture, jabbing his finger at the screen and saying, “Della. Della. Della”.  Last week the screen of my iPhone shattered.  I didn’t care.  It still works and I wouldn’t give up the memories of Sam looking at his sister and kissing the screen each morning for anything.  So now the phone is encased, broken screen and all, in a protective carrier and the kids still get to play with it.

I know I walk the walk of “Now is what matters”.  I spend less time dreaming about the future, and more time being grounded in the present.  I used to always be trying to multitask; answering messages while cooking dinner, texting while bathing the kids, doing homework while eating dinner with Aimee.  Now I try really hard to make time for everything, without having to do multiple things at once.  Instead of getting frustrated and shoving toys at Sam so I can try to empty the dishwasher, I involve him in the process.  I talk to him and engage him and let him “help”, even though his helping means having to rewash all the spoons he bangs on the floor or sucks on.  It makes a chore fun.  It makes my time with him more rewarding.  It allows me to focus on him and empty the dishwasher as a secondary thing instead of the other way around.  I have gotten bad at responding to emails and voicemails.  Sometimes I’m weeks behind, but it’s  okay because I’d rather be playing with the kids, helping Tristan with his homework, watching a video with Gracie or visiting with friends and family than sitting in front of the computer by myself.  I feel like I’m enjoying life more by simply focusing on one thing at a time instead of multitasking.  Multitasking is no longer a goal of mine, it’s something to be avoided when possible.

I know I’m walking the walk of “Fearlessness”.  There are so many things I used to be scared of that I just shrug off now.  Simple things used to throw me off, like having to ask for help carrying my stroller over a snowbank.  I would walk two blocks out of the way to avoid asking for help.  Two days ago I flagged down a stranger from the opposite side of the street to help me lift Sam and Hugo’s stroller over a puddle.  I shouted at him over two lanes of traffic and pretty much shamed him into helping me.  It’s a small thing, but a big change for me.  There are still lots of times that I feel as though I don’t fit in, or I don’t want to do things because they make me sad but I’m not afraid of them.  I can go to a wedding by myself now.  I can introduce myself to strangers.  I can speak publically.  I can disagree with people.  I’ve been looking into some career choices that are a bit unorthodox because Stella would have told me I could do anything I wanted.  Stella was brave and daring and I learned by watching her.

I’m not quite at my goal of “Making a real difference” yet.  This is not something that I’ve gotten to where I want to be on.  We have been overwhelmed with generosity, friendship and love over the last 20 months.  I have attempted to respond to emails, give verbal thanks, to show appreciation and be.  But I think the best way for me to show how much these have meant to me is to give back, and I haven’t gotten there yet.  Those that I’m closest to all seem to be giving back in some way.  Aimee has gone back to work at Camp Oochigeas (camp for kids with cancer), where their entire reason for existence is ensuring children get the most out of camp experience, despite their illness.  Auntie Angie works at the YWCA (see a very cool video she did in one of her programs here: http://www.youtube.com/watch?v=vDCBPKPG-YU         ) where they are dedicated to girls programs meant to empower and educate young women, especially those who are marginalized or at risk.  My sister Heather is a Special Education teacher as well as a respite worker and has spent her life dedicated to teaching those children who have often fallen through the cracks of the education system, giving them a chance to succeed.  Auntie Juju works at the 519 community centre where she runs programs for the homeless and underhoused and advocates for the LGBTQ community.  All these people also volunteer in their spare time.  Me?  I have yet to discover a career that speaks to me.  I have yet to reach out and help others in a concrete way.  I have yet to fulfill the promise I made to myself to make the world better, the way that Stella did.  I still give excuses when people ask me about volunteering that I’m too busy, have two babies at home, etc.  I am not selfless.  If this were a report card, I would get a “Needs Improvement”.

Many of the ways in which I’ve changed are small.  Small changes that have made a big difference.  But here is something else I’ve learned about change.  Not only is it difficult to put into practice, but it can result in losing some relationships, because when you change your values may no longer be in line with the people you were once closest to.  Personally, I can’t stand being in an environment where things I perceive as petty are being discussed at length.  It’s not anyone’s fault, but I just can’t be around it.  As a result, there are certain people or situations that I am no longer interested in being part of.  And it’s hard.  Hard for those I may have hurt by my decision to not spend time with them, and hard for me to accept that I can’t be the person I once was.  But you know what?  I think it’s worth it.  I think it’s worth it to be true to yourself, even when it means having to accept that the person you once were wasn’t good enough.  To change the world, first I will need to continue working on changing myself.

Many people have commented since the blog started about different things they have done because of Stella.  I LOVE hearing that someone has taken their kids on a vacation, even though they won’t remember it, because it’s more important to see them having fun in the moment than wait until they’re old enough to appreciate it.  I LOVE knowing that someone took the time to volunteer at a hospice organization because they were inspired by Stella.  I LOVE seeing Stella’s friends find ways to incorporate her into their lives even though she died.  I LOVE meeting new people and telling them about Stella, or hearing from them about how Stella made a difference to them.

As I drained Sam and Hugo’s bath that night, Sam put his fingers up in the air and wiggled them.  I smiled.  This is his sign for wanting to sing “Twinkle Twinkle” little star.  He and Hugo splashed in the rapidly draining water both laughing as I belted out the song with my “spirit fingers” wildly waving, my heart and head nowhere but in the bathroom with my sons.  Out of tune, but not out of step.

Grief doesn’t just change you, it reveals you.

Sam at the library:

Hugo eating his cracker:

The boys enjoy a big dump of snow:

Remembering When: 


 

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