Telling Stories

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Yesterday in school, we had to do an exercise where you paired up with someone in class you don’t know and told them “your death story”—i.e. the story of a death that changed your life and, for many people, the reason they decided to become a Funeral Director.  The idea was to experience how difficult it is to share something sad and personal with a total stranger, to simulate what a family might feel the first time they walk into a Funeral Home and meet with you after their loved one has passed away.

 

The person I paired up with was very nice, and shared with me a story of a boyhood classmate who had drowned, teaching her at the awkward age of 13 how short and random life can be.  She then listened wide-eyed as I explained a bit about Stella.  I talked about the day she was diagnosed and the day that Aimee and I left our bouncing girl at home playing happily with friends while we drove to Mount Pleasant Visitation Centre and planned her funeral and how amazing the staff there were.  I spoke about how “good” her death was, how full of love and support and how she inspires me in what I do and say every single day.  I shared with her that I feel Stella’s death has made me better in many ways.

 

Afterwards, we debriefed in the class about our mutual experiences.  Many people had gotten extremely emotional in telling their stories.  Some were angry, many wiped tears from their eyes and one woman wept as she recalled having to put her beloved horse down.  One person didn’t even do the exercise as speaking about his personal loss was too raw.  He left the classroom instead.  When my partner was asked about her experience with me, she furrowed her brows slightly and said…”Well…the story was sad, I mean it should have broken my heart, but Mishi was smiling the whole time she was telling it…glowing almost”.  My partner seemed perplexed by this and I immediately turned beet-red.  It wasn’t a criticism, it was just that she was surprised I spoke so effortlessly and unemotionally about something so tragic.  I let her words sink in and have spent the last several hours mulling them over in my head.  I suppose the reason I tell Stella’s story with a smile on my face is because I have rewritten parts of the narrative of how she died.  I have turned her story into the Happy Ending type that I prefer to read.  Knowing and loving Stella and talking about her makes me happy, but that’s only because of what I choose to remember and tell people about.

 

Sometimes when we’re talking, Aimee will bring up something to do with Stella’s diagnosis day, or cancer, or funeral planning and I will have absolutely no recollection of what she’s talking about, leading her to make jokes about how I only remember the things I want to— but she’s not wrong.  I find that my brain has sieved through all the experiences of the time since Stella was diagnosed, and chosen only to keep the ones that stop me from falling to my knees, my chest exploding with grief.  When I tell Stella’s story, I focus on all the good things.  I talk about how happy she was and how, as a family, we found a way to laugh and live around Stella’s cancer.  The story I tell is about how Stella didn’t seem to mind when she lost each of her faculties, she still smiled and laughed and communicated with us.  I have memories of her playing with her friends and cousin Gracie even after she couldn’t walk or talk anymore.  I remember days spent in the sunshine under the tree in our front yard visiting with people, reading books and painting Stella’s toenails.  When Stella couldn’t see he pictures anymore, I would tell her the story of Cinderella.  She always smiled when the clock started to toll midnight, “DING-DONG”.  I think about ice cream and Timbits for breakfast.  I remember how it seemed every single person we knew, or who found out about Stella, did kind things for us.  I witnessed more acts of selfless generosity and love in those 16 months than I knew existed in the world.  Even now, a year after her death, people still send me trinkets that make them think of Stella and write me that they have not forgotten her.

 

I remember the moment she died as being very peaceful and quiet.  A tiny last breath as Aimee and I sat on either side of her, cushioned on “the big girl bed”.  If I am honest with myself and reach deeply into the recesses of my brain, I can remember how horrific the days were as we waited for that last peaceful moment.  Watching Stella’s eyes glaze over with a red film, suck in a half open-half closed state.  Watching her chest rise and fall, panting.  How she didn’t eat or drink for 12 days and it looked like she was starving to death.  How her body started to bruise all over from blood coagulating as she lay on one side, everything slowing down.  I try not to think about having to clean her mouth out with special solutions because it was getting thick and fuzzy from bacteria and lack of moisture.  If I think very hard, I remember hurting so much I couldn’t breathe.  I remember escaping to the basement to sleep for hours on the day she finally died because I couldn’t be with her anymore.  Couldn’t watch.  It was all my most precious dreams panting, dying, starving right before my unblinking eyes. And now as I write this, tears stream down my face and pool into my neck because it hurts so much to remember.

 

When I tell Stella’s story, I don’t focus on the nightmare of those first few weeks after diagnosis, when I couldn’t stand to be in the same room with Stella because the pain was overwhelming and made me vomit where I stood.  I never tell people (unless they read the blog from the beginning, I guess), about how jealous and angry I would sometimes get watching her friends run circles around her.  I don’t talk about how frustrating it was for all of us— Stella included— when she began to lose her ability to speak.  When something that once came so easily was something that needed to be pushed out painfully one syllable at a time, and often after all her efforts that left her panting and wide-eyed, we had no idea what she was trying to say.  Finally, one day, no more sounds came out.  Except laughter.  Right to the end, if she wasn’t too tired, she could always make a cackle-y laugh that ended with an out-of-tune series of three little giggles.

 

I have chosen to rewrite parts of Stella’s story, not to change anything that happened, but to leave some things out so that I can share the good, positive parts of her life and death.

 

The experience that my partner had in class, was of me being happy and proud of the life and death we gave Stella.  I have told her story so often and so publically— written on the blog, a couple of articles, given speeches at schools and Church, that it has become a narrative—a planned out, chronological, “feel good” story.  I’ll never forget when I was asked to speak to a group of 7 and 8th graders for Terry Fox Day last year and the Principal cautioned me that he wanted the speech to be “uplifting” as opposed to sad.  That’s what people want to hear.  They want to be inspired and feel good at the end of a story.  They want to believe that even though Stella died of this horrible monster called DIPG, her story is not a sad one.  And that is my mantra when I tell people about her.  The title I often use for stories and speeches is Stella Joy- A Love Story, because for me, that’s what it has become.   I suppose that’s one reason that this blog is important for me and Sam and Hugo to have.  I have never gone back and re-read anything I wrote, but I know that within these type-written pages, there are those pushed-aside feelings of anger and grief and frustration and horrific sadness.  They are all here, easily read and acknowledged.  Each entry of this blog builds on the last and forms the full story of Stella and what happened to her.  Catherine Porter’s articles and E-Book about Stella are the same, chronicling the ups and downs of our experience.  But the story I have written for Stella, the one I choose to tell when people ask me, is not a sad story.  It has sad parts to it, but it is the story of overcoming pain and learning to embrace life in small moments, not big chunks.  It is about love and community and believing that good things can come from horrible situations.  It is about honouring a life lived by focusing on the beauty, not the ugly, twisted tumour that stole my daughter’s life.

 

I have often said that my life mantra has become, “Find the Joy”.  But perhaps, more accurately, it should be: “Find the Joy.  And if you can’t find it, make it up”.

Sam and Hugo play with some special wish stars that a blog reader from the UK kindly sent us this week:

IMG_6403Playtime:

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Stella, Summer 2010:

Stella Muskoka chair 1 year

Stella and I, a few days before she died: 

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Morning Gory

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Morning Gory

I think mornings are difficult in every household.  When Stella was here, the early part of the day was usually the most challenging.  I used to refer to it as “Morning Gory”.  When I think back, all I remember is sitting on the couch at 5:10am, the darkness of night still covering the street, cool breezes hitting my neck from the antique windows behind me and Stella sitting on my lap drinking her bottle and demanding my attention, energy and alertness even though I was still half asleep and trying to secretly close my eyes without her seeing me (because if she caught me, she would smack my face and say, “Mama! Wake up!”).  Stella was super cranky in the mornings.  I don’t know how many times I would say to her, “Stella, I’m not the one who wanted to get up this early.  If you’re going to insist on getting up this early, at least try to be a bit pleasant”.  She would just glare at me and throw something.  She whined and cried and wouldn’t let me put my head down, or my feet up on the couch.  “Noooooo!” she would cry, pounding her little fists. 

Thankfully, Sam and Hugo are much more civil in their wake up times.  Usually between 6 and 7, which I can deal with.  And, generally, they are pretty happy.  Especially Hugo, who actually wakes up smiling! But the other day, Sam just wouldn’t stop crying after he got up (around 6:15am).  He cried and threw the egg he insisted I make for him all over the ground.  He screamed and fought me with all his toddler power when I tried to get him dressed, wailing and rolling and screeching.  He threw a wooden hammer toy at Hugo, who spent the entire morning also crying at me with his arms permanently stuck in the “pick me up” position.  He crawled after me as I tried to manage Sam, pulling himself up on my leg and trying to climb up each time he caught me.  The house was a cacophony of screams, cries, chaos. 

I was frazzled.  My hair kept flopping into my face.  I was sweating, and the noise of two unhappy boys followed me everywhere.  In trying to keep them both happy, I was making neither one happy.  I kept putting my morning tea down, losing track of it, then trying to reheat and drink it.  I must have done that half a dozen times before I finally gave up.  Later, I found the cold tea sitting inside the bathroom vanity cupboard behind the Dora band-aids.  That’s the kind of morning it was.  I was overwhelmed with the urge to cover my ears, shut my eyes and find a “happy” place in my own brain to escape to. I was having very intense and anxiety-producing flashbacks of mornings with Stella.  But, mostly, I was mad at myself because I kept trying to find that wonderful perspective I had gotten with Stella’s too-short life, and I couldn’t locate it anywhere in the tears and cries of the boys.  I reminded myself how lucky I am to have two beautiful, healthy and fun children in my life, but I still fantasized about trapping them in a crib and plying them with gravol until they fell asleep so I could hear myself think again.  I thought about the blog readers who have told me that whenever they feel angry or overwhelmed with the ir children they  think of Stella and calm themselves down.  So I tried.  Tried to channel my inner zen mom, but Sam’s crying and throwing combined with Hugo’s whining and climbing was making my head spin.  So I just sat down on the ground for a minute to try to stop the insanity.  And that made Sam pull at me, crying even louder.  And it made Hugo plop onto my lap and try climbing up my back because I had finally stopped moving.  So I sat there in a heap on the floor and tried to collect myself, but I felt just awful.  I was not enjoying being a mom at this particular moment, and the guilt of it weighed on me like a 100 pound brick.

Then somewhere between the tears, pulls on my hair and screams, it hit me.  I don’t have to enjoy every single moment with the boys.  I can’t.  No one can.  When I look back on the times I had with Stella, there are some absolutely horrible days, but overall the experience of being her mother was completely magical.  Sometimes I focus on the hard and bad times, because Stella died and I go over and over again in my brain what I could have done differently to have more of her smiles locked in my brain.  But when I think back on her life as a whole, I usually don’t remember the terrible days, I remember the amazing ones.  I remember picking her up from daycare and having her literally run to me and jump into my arms, her curls bouncing against her shoulders, her huge smile repeating, “Mama, Mama!” over and over again as she skipped to me.  I remember how much she giggled when I sang “The Grand Old Duke of York” to her and Gracie.  She never got tired of it, from the time she was 10 weeks old and I started singing it to her, to the weeks before she died when she smiled up at me as I sang it softly in her ear. I remember sitting with her after daycare, sharing a bag of cheese flavoured rice cakes and watching the Golden Girls.  She would point at the TV and name them all as they appeared on screen.  Blanche, Dorothy,Rose and Sophia.  I remember laughter and butterflies and flowers and slides and family dinners.  I remember first words and first steps and first holidays.  I remember exploring the farm and the library and the park and the science centre.  I remember us both learning, both teaching, both experiencing.  I remember her falling asleep in my arms after a busy day and finally being able to stare down at the face of a daughter who never sat still in her waking hours.

It’s like anything else you do— maybe when you look back on a vacation you took, or a job you had, you look on it as a whole and not a series of hundreds of individual moments, some good and bad.  You just say, “that was a great vacation!” or “that was a terrible job”.  So it’s okay for me to not love being with my kids all the time because, overall, it’s amazing and that is what I will remember at the end of the day looking back.  Not the small, individual moments that tried me, but the big picture.  And in the big picture, I adore my sons.  I love being with them and love parenting them and am so excited about all that has been and all that is coming.  This was a huge moment of relief and realization for me.  I have been operating under this pressure cooker of parenting where I had a child who died, so I have a perspective and an appreciation for my surviving children that makes me feel awful if I don’t find the magic in every moment.  I’ve often thought about what I wouldn’t give to go back to those mornings with Stella, and appreciate them more.  But maybe that’s silly.  Maybe I would have had more patience, a better sense of humor, a calmer demeanor.  But I doubt I still would have enjoyed being yelled at by a toddler at 5-something in the mornings.  That’s just not fun no matter how you look at it.  So I have given myself permission to admit that it isn’t all fun.  And it won’t all be fun.  Just because Stella died doesn’t mean I have to be a martyr, or pretend I’ve got it all figured out.  Parenting is hard, but that is also what makes it so wonderful and interesting.

I believe my sons will have a better life because of what I learned from Stella.  I really don’t sweat the small stuff.  Sam is allowed to get soaking wet playing with the hose every afternoon after daycare.  I don’t care.  He gets drenched, he laughs and has a great time, then we go inside and take his clothes off.  He loves it.  I sigh when he goes for the hose, but gamely turn on the water for him and then laugh as he discovers that putting his sneaker under the stream of water causes it to hit his face. Similarly, Hugo gets little bites of ice cream, even at only 9 months of age.  He loves it, just like Stella did.  I give him small teaspoons sometimes, and ignore the voice inside my head (or the one outside my head that comes in the form of Aimee!), telling me that ice cream isn’t good for babies.  He grabs for the spoon and smiles as though this is the best thing in the entire world.  His excitement makes me laugh.  Aimee and I fight so much less over the laundry, money, the condition of the grass in the backyard.  Losing Stella didn’t make me perfect, it just made me less stressed about trying to be perfect. 

I am free to try, to fail, to suceed, to learn, to grow, to create, to love.

Stella wasn’t perfect.  Far from it.  But she was happy.  She found great delight in everything she did.  It’s yet another thing she taught me in the three and a half short years she was here— find joy in imperfections.  Who you are is enough. 

“Above the clouds and their shadows, lie the stars and their light”– Pythagores

Sam and Nanny play in the backyard:

Sam watches hockey with neighbour Ken:

Aimee takes Hugo on the slide:

Sam and Hugo both got their first haircuts this week:


Stella at a friends cottage, August 2011:


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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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Heartache

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HEARTACHE

They call it heartache because your heart really does hurt.  I’ve found it so interesting that grief and mourning is such a physical process.  Of course your mind is constantly churning out messages to you, but it’s my body that often gives up at the end of the day.  My brain throbs from working so hard to not think about Stella every second as I go through the motions of life.  My heart aches from missing her so much.  My throat hurts from swallowing tears and pain hour after hour.  My shoulders and neck burn from carrying all the stress around.  My arms and legs seize from the sheer effort of forcing them to keep mechanically moving when I just want to curl into a ball and disappear.

I hurt all the time.  Sometimes it’s intense and overwhelming pain, but most often it’s just a dull ache that niggles at me, always constant, always there to remind me that my daughter died and nothing will ever be the same.

Did you know May is National Brain Tumor Awareness Month?  I didn’t know either.  It’s not a pretty or popular cause, and likely the only people who really know about it or participate are those who have been touched by it.  I certainly never knew that “grey ribbons” existed, or meant anything.  But now I do.  I’m part of a small minority of people who know about brain tumors, and an even smaller group who know about watching their child die.

Thankfully for most people, their children won’t die before them.  It’s one of those “worst nightmare” things that we all hear about happening to “other people”.  You listen to a story about someone whose child died and shake your head, saying, “Ugh.  That’s awful”.  But you don’t really feel any emotion when you say it because it’s so far removed from you.  Then you get to go on with your life.  That’s how it should be. That’s how it used to be for me.  Now when I hear about a child dying, my whole body shrinks with the agony of knowing another family is having to deal with the overwhelming reality of losing their most precious treasure.

So, in honour of brain tumor awareness month, let me tell you a little bit about what it means to lose your child, in my experience.

Losing your child upsets the natural order of the universe.  It’s investing all the time, energy and effort into pregnancy, birth, parenting books, tantrums, the alphabet, kisses, good night cuddles, bath time, laughter and then being left with an empty bedroom where your child once slept, neatly folded clothing that your child once wore and dust covered toys that your child once brought to life.

Losing your child is spending hours looking at the finite amount of photos and videos you have of them, trying to remember each angle of their face and the sound of their laughter.  It’s closing your eyes and forcing yourself to remember how it was before because thinking about how it is now hurt too much.

Losing your child means learning to laugh even when it sounds hollow, learning to keep moving when your whole body wants to shut down, learning to push through the pain and hurt and exhaustion because everyone keeps telling you that time will heal, even though time just passes.

Losing your child means never knowing when you will be overcome with raw grief that shudders through your veins and emerges in an explosion of silent screams and hot tears.

Losing your child is cradling a cold, lifeless body in your arms and trying to reconcile your brain’s memory of an energetic, laughing, smiling human being with this shrunken bruised waif that stares at you with unseeing eyes and slack  jaw.

Losing your child is handing over their body to a stranger to take to the morgue, then getting back a tiny, cold box that holds grey, dull ashes.  All that’s left of your beautiful baby.

Losing your child is packing away their things into boxes that you don’t know what to do with, clutching the stained clothing to your chest hoping it will soothe the stabbing pain in your heart, desperate to catch a small hint of the smell of their skin buried somewhere in the folds of the fabric.

Losing your child is showing great restraint when people tell you to be grateful for the children you have left, or say “you can always have another one”, as if your child is replaceable.

Losing your child is forever grappling with feelings of guilt and regret.  No matter what anyone tells you, your mind won’t let you think that there wasn’t something you did wrong that caused your child to die.  Diet while pregnant? Using a non microwaveable dish? A flame-retardant mattress in the crib?  There is no end to the crazy, inane and far-fetched reasons you will come up with to torture yourself.

Losing your child is being forced to watch people whom you love very much live out the dreams you had for your own child, and fighting a fresh wave of grief each time their child reaches a milestone that your child won’t.

Losing your child is being shut out of the play groups you planned on attending, because you don’t have a child that age any longer.  It’s skipping social events and birthday parties because you don’t want to put a damper on the party by bursting into tears at an inopportune time.

Losing your child means losing the friends and family members who aren’t able or willing to give you what you need.  It means accepting that you are changed and having to let go of a lot of people that you care for very much because you can’t bear to be around them and their lack of understanding.

Losing your child means separating the years you have lived into two different worlds, the “before” and “after”.  They don’t always match up, they don’t always reconcile themselves, and it can be difficult to remember what it was like to be blessedly ignorant about the cruelty of a world that betrayed you so badly.

Losing your child is forever losing a part of yourself.

Sometimes late at night when I can finally hear myself think, I remember all my favourite “Stella Stories”.  It frustrates me that I only have a few dozen to sift through and remember.  Today I will share one of my precious memories with you.

When Stella was two I picked her up from daycare.  As happened on many days, the daycare teacher walked over to me to talk about Stella’s day (by this time I knew enough that if they make the effort to do more than wave goodbye and smile, it’s not usually good news).  “Stella had a difficult day,” I was told.  “She was doing a lot of hitting.  I think she needs to be spoken to about it”.  I looked at Stella who was happily sitting on the stool by her cubby, swinging her legs and smiling up at me.  “Stella,” I said sternly, “it’s not nice to hit your friends”.

“But Mama,” she explained, stretching her arms out as far as she could, “I hit all, all, ALL my friends!!!”  With a big smile she hopped off the bench for a hug.  I remember trying to stifle a laugh as I buried my face in her curls.

If there was one thing Stella was, it was fair.  But what happened to her wasn’t.

Picnic at Stella’s beloved farm with Sam, Kari, Hugo, Xavier and Arin (behind Stella’s bench):

Sam has been introduced (by Poppa, of course) to Stella’s favourite…the ice cream truck!

Xavier, Sam and Hugo play in the backyard:


Stella visited the farm in March, 2012:


 

 

 

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