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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Stella She

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“Stella She”

 Stella She

I was trying to set up an email account for something a few days ago, when I had a vague memory that at one point I had a gmail account I had set up because I wanted to start blogging about Stella.  When I was pregnant with her, I was obsessed with reading those “baby on the way” blogs that some people write.  I thought it was so cool to be able to track your physical changes, your emotions and joys and plans for the baby.  Moms-to-be post photos of their stomachs expanding, the nurseries they decorated, the outfits their babies will come home in, ultrasound pictures.  Those blogs were endlessly entertaining to me, but by the time I found them I felt it was too late to start one for my pregnancy with Stella.  Instead, about a year into parenthood, I tried to start a blog…just for myself, not public, that would be a type of journal in which I would write for Stella, so that when she was older I could show it to her and she would see a different side of herself, me and our burgeoning relationship.  Embarrassingly, it was called “Mishi Me—Life with Stella She”.  I almost gagged when I saw the title.  I don’t remember making it up, but I’m sure I thought it was mighty clever at the time!  I ended up only writing in it 11 times in the space of 4 months.  There never seemed to be enough time, or things to write about.  In fact, I completely forgot about it.  So it was a strange—very strange— experience to remember about it a few days ago, find it online, and read my own writing.

Writing I don’t remember at all.

I write about my excitement in finding out that Aimee was pregnant, and my concerns about how Stella would adjust to a new baby.  A few weeks later I reveal my devastation when Aimee miscarried that baby and talk about how the hopes and dreams we made were dashed when she was only 10 weeks pregnant.  I wax poetic about the changing nature of friendships and how friends come and go in your life depending on where you are and your common interests, as well as proximity and need.  I muse about how adults often try to make their children into mini versions of themselves.  But there, smack in the middle of all these fluffy reflections about life, was an entry about Stella trying to teach me to slow down.  I read the entry with a mixture of horror and interest.  Here it was, the same lesson that it took Stella dying to really make sink in.  Here, almost two years to the day before she died, was written proof that Stella had always been trying to give me that lesson about slowing down and appreciating the moments.  In the entry, it appears as though I was listening, but obviously the lesson didn’t sink in, because I know I went right back to being the same way I always was.  Until that day in June, 2011 when the world as I knew it came crashing down around me and I was forced to grow up and take a good, hard look at who I was.  And change.  A lot.  For myself, for my children, but, mostly, for Stella.

I try very hard not to live with regrets as I feel that it doesn’t accomplish anything.  But I couldn’t help but wonder as I read the old entry, if I had really taken in the lesson of that day, a full 8 months before she was diagnosed with DIPG, if things would have unfolded differently.  Mostly, I wonder if there would be more happy, content and good memories for my brain to sift through late at night when I fill the hole in my heart by remembering all my favourite times with the sweet little red head that burst into my life like a firecracker, and then eased out of it like an ember.

Here is the original blog entry, in its entirety:

October 25, 2010

 

I am an overachiever, overscheduler, rushrushrush kind of person.  I feel as though if I’m not doing something, it’s a waste of time.  Getting from one place to another is never about the journey, but always the destination.

 

This weekend I took Stella on our usual Saturday morning visit to see my mom (“Dee Dee” as Stella calls her…she didn’t want to be GrandMa).  We always walk to Dee Dee’s since it’s only one block away and we take the laneway between our two houses so there are no cars or other people/pets to worry about.  I rushed Stella through the visit since I always have to chase her away from the multiple steep staircases and breakable art.  It makes it a bit stressful, though DeeDee and Stella both thoroughly enjoy these visits.  As we were walking up the laneway on our way home, I began to get frustrated with Stella as she was dawdling.  She insisted on walking herself up the laneway but instead of taking the direct path home, she kept breaking away and looking at other things.  She stopped to stare at a puddle.  She ran over and banged on a garage door.  She peered at the tires of a car.  I caught myself huffing and puffing and pulling at her arm trying to get her to keep walking home.  She looked up at me and smiled, her strawberry blonde curls whipping in the early morning wind.  “Mama!” she exclaimed excitedly pointing, “tree!”.  I stopped and looked at where she was toddling off to.  There was indeed a tree just to the left of the laneway.  I’ve probably passed that tree 10,000 times in my life, but have never really stopped to look at it. 

 

Suddenly, I realized that I was missing all the beautiful and wonderful things my daughter was trying to show me, and for nothing.  I had nowhere to be.  It was 7:30am on a Saturday morning.  Aimee was still sleeping, we had no plans until the afternoon.  Stella and I had both been up since 5:00am, so we were showered and fed and dressed.  I looked down at my beautiful, perfect child and repeated after her, “tree”.  She grabbed my hand and led me to the tree where we spent the next few minutes touching the trunk and talking about how rough it was.  We picked up dried brightly coloured leaves from underneath it and threw them in the air.  As they rained down around Stella, she laughed delightedly and tried to catch them in her chubby little hands.  We went back to the puddle and played in it for awhile, making a symphony of splishing, splashing and giggling.  We looked through the wire fence at neighbour Rose’s house and counted the cucumbers hanging off the vine. 

 

The walk through the laneway which normally takes a minute took 30 minutes.  But I was so happy.  I felt present.  I felt as though I was really enjoying this walk, this moment with my daughter, this gorgeous fall day.

 

I need to do that more often.  I need to slow down and enjoy the beauty around me.  I need to live in the present.

 

Thank-you Stella, your Mama learned a valuable lesson.

 

Doctors think that Stella had the DIPG tumor for a long time before the symptoms of it started to appear, so chances are the monster was already percolating in her brainstem when we had this moment together.  What if????  I won’t torture myself with what if’s, but I will chide myself for not taking more to heart the lesson I learned that Saturday morning.  I will forever wonder if Stella had been teaching me her whole life, but I was just too busy and blind to really take it in.

I have often thought about how change, real change, requires you to become so accustomed to the “new” way of living, that you don’t even think about the old way anymore.  It’s true that I take my time more, that I take on fewer things, that I schedule less.  It’s true that I let Sam and Hugo get soaking wet playing in the backyard and don’t care about having to peel muddy clothes and shoes off them before heading in for dinner.  It’s true that I let myself sit down and have a hot cup of tea in the evenings after the kids go to bed, before I tackle cleaning the kitchen and my homework.  It’s true that I buy ice cream from the truck when it sings by the house, and sometimes let everyone stay up past their bedtime if we’re having too much fun singing and reading to stop yet.  But the one thing I haven’t been doing yet, that I would like to try, is to see the world through the eyes of my children.  Through Stella’s eyes.  As a place of constant wonderment.

So yesterday, as an experiment, I decided to try to be acutely aware of my surroundings.  And I found unexpected beauty all around me.

There was a chickadee pecking at the ground that stared at me for two full seconds before hopping away.

There was dandelion fluff blowing in the breeze.  I watched in fascination as it tumbled and almost fell, only to be swept up again, spinning and literally dancing in the wind.

There were raindrops that I let fall on my skin, instead of running and ducking for cover.  They fell with big “plops”, and make little rivulet patters between the freckles on my arms.

There was the smell of damp warmth, freshly mowed lawns and coffee.

There was the hum of traffic on a nearby street.

There was a breeze that sang in the leaves of the trees and moved my eyelashes around as I walked.

And I visited that tree in the laneway I had written about a lifetime ago.  It was still there, still bent over with the roughness of the years and the seasons engraved in its trunk.  I don’t think I’ve noticed it since that day with Stella.  But it was still there, just waiting to be discovered again.  I ran my finger through a puddle that rested at its roots and noticed in wonderment how the ripple lapped out in a perfect circle beneath my hand.  I watched an ant march steadfastly over my wrist towards a pile of sand nearby.  I fingered the green leaves on the tree.  They were alive and bright, unlike the almost-gone golden-hued ones I had thrown on Stella the day of that old blog entry. I allowed myself to feel, and I cried for the first time in weeks.  As the tears rolled down my cheeks and pooled at the hollow in my neck, I realized that I still need to let myself mourn, even as I strive to live each day to the fullest and enjoy all the little moments, not just the big ones.

Stella gave me so many gifts in her 3 ½ years on this Earth.  Even now, after she has died, she continues to give.  She lives in all the beautiful things I see around me, in the changes I have made in my life and in the laughter of her two brothers as we make mud pies in the backyard, smears of dirt in our hair, stains on our knees, smiles on our faces.

Two little monkey’s jumping on the bed:

“Old Man Sam” takes a tea break in front of Stella’s playhouse:


Auntie Heather and the boys picnic at Woodbine Beach:

Hugo, 10 months old already:


Stella, October 2010.  The same week that blog entry was written:


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“How Are You Doing?”

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“How are you doing?”

 

“How are you doing?”.  That question, though I expect it and have answered it a thousand times now, still makes me pause.  Because when people who know ask it, it is not just a general conversation starter but rather a true question that they want a true answer for.  Depending on who asks me and in what context, I try to answer as honestly as possible.  Usually it starts with a shrug and I sort of stutter off a, “You know…some days are harder than others, but mostly we’re doing okay”.  That answer seems to satisfy them, and it’s true, so it satisfies me too.

 

But if I were to really and truly answer that question…. if I were to actually spill out all the words that are tucked into my mouth, the answer would be much longer and more complex than one I could make in a casual social setting.  For the most part, we have settled into “normal” life again.  Our days are like any other young families.  Our kids wake up (too) early, we feed them breakfast, get them dressed, play a little then it’s off to daycare and work.  We grocery shop and clean the house and cook.  I pick Sam up from daycare and bring him home and he and Hugo play in the backyard for a bit, then it’s dinner time, bath time, read books, bed.  Wake up the next day and repeat.

Sometimes when I stand next to the slide at the playground and look around, I realize that I have the appearance of being exactly like all the other parents that are standing there watching their kids.  I look like them, I drink Tim Horton’s like them, I shout “be careful!” to my children like them.  But I’m not one of them.  I have this deep, gaping wound that they can’t see.  I sometimes wish I had a visible scar on my face, a sign so that everyone would know that I am, and forever will be, the mother of a child who died.  Not because I want to be different, but because I want people to ask about Stella.  I want them to say, “tell me about her”, and I want them to see her picture, to laugh at stories about her, to keep her alive in thoughts and feelings.  Because even though we are mostly doing okay, what happened to us—to our child— is not okay.  And the thought of her being forgotten or her memory fading makes my heart ache.

 

Summer has finally come to Toronto, and with the change in seasons there is always an acute reminder that we are living without our daughter.  In a few weeks it will be the dreaded two year diagnosis-versary (or “D-Day” as we call it).  Stella died just over 7 months ago.  7 months is a lifetime when you’re dealing with young children.  Since Stella died, Sam has learned to walk and talk.  He runs and climbs and plays in the sprinkler.  He loves cars and trucks, and is very affectionate and cuddly.  Hugo was not even 10 weeks old when Stella died, so he has changed a lot as well.  He crawls and cruises and babbles.  He eats crazy amounts of food, and he and Sam sometimes just look at each other and laugh their heads off.  Gracie has almost completed her first year of school, and is writing and reading.  But Stella hasn’t changed.  The thing about death is that the person who dies is frozen in that time and age at which they died.  So while Sam and Hugo and Gracie and Xavier and Flora and Arin and all Stella’s other friends keep growing and changing, she remains the smiling little toddler scamp she was when she was diagnosed almost two years ago.  Her stories, photos and time on earth are finite, there will never be anymore than what we already have.

 

When I look at other children running around and playing, I am envious.  When I see her friends all together playing, I wonder at the randomness that it was my child who died and even though I want to be there, want to be with my friends and their children, it’s still hard to see them all getting older and knowing that their playmate is a pile of ashes that looks all too similar to the sand they are playing in.  Though I am there with Sam and Hugo, and I am happy, I ache for what is also not there.  But even that thought is a complicated one, because if Stella hadn’t gotten sick and died, we never would have had Hugo.  And whenever Hugo looks up at me with his gorgeous eyes and beautiful smile, I wonder how I ever would have lived without him.  I see him and Sam playing together in the bathtub, and I marvel at how amazing it’s going to be to have brothers (and Xavier too) grow up only 10 months apart in age.  So I feel happy and sad, lucky and unlucky, content and envious all at the same time.  It’s unsettling, but that’s just the way it is right now.

 

 

When Stella was alive, and just after she died, every single photo on the wall and the fridge was of her brilliant smile and soft curls.  She still beams up at us from every corner of the house.  But slowly…very, very slowly…in almost imperceptible ways, some of her photos have been moved around to make room for new ones.  Now the fridge also has pictures of Sam and Xavier playing in the snow during the winter.  There is a school photograph of Gracie, staring down the camera with one hand on her hip.  There is Hugo laughing, dried snot under his nose like a moustache.  There is me holding the two boys.  Aimee with Sam at Riverdale Farm.  The boys each “made” us Mother’s Day crafts, and those two have found space on our walls and fridge.  The meshing of new and old tells the story of the life we lived and the life we are living.  We are being forced to move forward, and even though Stella is always in our hearts and heads, she isn’t always in our space anymore.

 

At first I was heartbroken at the thought of changing anything in the house that had to do with her.  But eventually we painted, moved Sam into her bedroom, packed away some of her toys to make room for dump trucks and excavators, thinned her books to have space for “Night Night Construction Site” and “Twinkle Twinkle”.  When you wander through the house you can visually see “before and after”.  There’s Stella’s painting that she created, the coffee mug she made with Auntie Heather, her stuffed animal Pink Kitty and her “Stella doll” made by a blog reader.  But there’s also Sam’s trucks, Hugo’s toy cash register, little boy running shoes and baseball caps and sippy cups.  The Golden Girls DVDs we kept in the living room for Stella have been replaced by Disney’s Cars and The Wiggles.  Stella’s face is still all over the house, but so are Sam and Hugo’s.  The basement and backyard that I once blogged about as being covered in dust and overgrown from not being used is once again alive with action and colour and mess.  It is obvious that children live here.

 

So, back to that question, “How are you doing?”.  We are living.  That’s what Stella did and that’s what she would have been doing if she had never gotten that awful DIPG bullshit.  So in her honour, we are living too.  Each day is another day without Stella, but a day we are grateful for our faithful friends and family members, our community, our blog readers, our children and each other.

 

 

“How are you doing?” really means, “How are you surviving without Stella?”  We survive the only way we know how.  By remembering, appreciating, learning and living.

 

Oh, and eating chocolate Timbits and ice cream for breakfast.

 

Sam and Hugo head to the Science Centre:

Gracie had her first “Lemolade” stand this weekend.  She asked her moms to put Stella’s picture on the table:


Another Lemonade Stand, “The Joy Cafe” that Aimee’s friend Ash is running with her children this summer in honour of Stella:

Sam, Hugo and Xavier playing Stella and Arin’s favourite game, “jump in the bed”:


 

Stella and I in Picton, July 2011:


 

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