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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Ray of Light

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Ray of Light

 

Mother’s Day is not a holiday full of sappy cards, brunches at a restaurant or potted plants in our house.  It’s a day of reflection, of memories and going through the motions of a holiday that has lost much of its lustre.  Aimee and I both wholly respect and love our mother’s dearly and are eternally grateful for the gifts they have given us throughout our lives, but we try to celebrate them everyday, so “mother’s day” is yet another reminder of all we have lost in our own lives.

 

This year a team of our closest family and friends took part in Meagan’s Walk, a fundraiser in Toronto that was started 12 years ago in memory of Meagan, who died of DIPG at age 5.  It’s a 5km walk that raises money for brain tumor research at Sick Kids Hospital.  It was an early start time (8:30am), and I was so honoured and impressed that our friends came, especially those who dragged their small children to downtown Toronto on subways, streetcars and buses lugging strollers, diaper bags and ziploc’s full of home made muffins.  Donning our “Stella’s Stars” T-shirts, we sauntered through downtown Toronto with thousands of other families and friends of people affected by brain tumors.  To be honest, I wasn’t feeling particularly emotional while we walked.  It was actually a very fun, social event and a chance for me to catch up with friends I don’t get to see nearly often enough, so I was a bit distracted from the actual purpose of the event, which was to raise awareness of brain tumors.  But at the end of Meagan’s Walk, everyone (all two thousand of us) lined up and “hugged” Sick Kids Hospital by forming a human chain around the block.  As we gathered to complete the hug, Aimee remarked to me softly, “Isn’t it f—ked that we’re walking behind people wearing our kids face on their shirts”.  I knew what she meant.  Stella’s face beamed out at us from the back of a t-shirt with a very succinct 2009-2012 below it.  Blech.  The emotions began to bubble up to the surface as the magnitude of all we lost worked its way into my brain once again.  As Aimee and I stood arm-in-arm with the people who have held us up the past almost two years, I couldn’t stop crying.  I cried for Stella.  I cried for Emma and Johnny and Evie and Miette and Oliver and Joseph and David and Jaclyn’s Family and Willa and Mackenzie and Jonathan and on and on and on.  I cried for the children pressing their faces against the windows and staring down at us from inside the hospital.  I cried for the mother’s celebrating mother’s day tomorrow who lost their child(ren).  I cried for friends and strangers.  I cried and cried and cried.

 

And I thought about Quinn.

 

This year, along with being our first mother’s day without Stella, it is also the first mother’s day for our best friends Ray and Brad, who, two weeks ago, welcomed their daughter Quinn Elora Needham to the world. She is tiny and dark haired, with little fighting fists and an adorable pouty mouth.  Ray has been Aimee’s best friend since they were 16 years old, and when Aimee and I started dating 10 years ago (Ray and Brad got together the same year), we became a natural foursome of friends.  I always think of us as Lucy-Desi-Ethel-Fred (although who’s who is up for debate.  Personally, I think Brad is closest to Lucy).  When Ray got pregnant, we were as excited and happy for them as we would be if it was our own child.  It was a long, hard and complicated road for Ray and Brad, so their pregnancy was about as close to a miracle as I’ve experienced personally.  As soon as I knew Ray was pregnant, I knew it would be a girl.  Stella was aware Ray was going to have a baby, and was excited as well.  She would smile and stick her tongue out when I would ask her if she was excited to meet Ray and Brad’s baby.  After Stella died, the baby inside Ray continued to grow and thrive.  Our grief with Stella grew and changed at a similar pace to Ray’s pregnancy.  I would look at her swollen belly knowing there was a life growing and flourishing inside, and remember distinctly being pregnant with Stella.  I remembered when her little kicks fluttering within me were like butterflies, then stomps.   I remembered when Aimee and I would cuddle on the couch at night and marvel at the life under our hands, the way Ray and Brad did as they awaited their child.  I would see Brad put a palm on his wife’s swollen belly and smile as he was rewarded with a small kick, and my heart would squeeze in a mixture of happiness for our friends and sadness for ourselves.  As Stella lay dying, this baby was living.

 

Back in December, when Aimee and I were in Hawaii, Ray and Brad were scheduled to find out the sex of their baby.  I knew it was a girl.  I don’t know how I knew, but I did without a doubt. That morning, we were waiting by Aimee’s phone for the text message that would confirm my knowledge of “girl”.  Instead, we got a message stating that the amniotic fluid was low and they were awaiting another ultrasound.  If it turned out her fluid was leaking, Ray would lose the baby.  Aimee and I felt sick to our stomachs.  Our friends couldn’t lose this baby, life couldn’t be that cruel.  As we wandered, dazed, down the hotel hallway and past the shops, we floated into a personalized Christmas Ornament Store that I had discovered the day before.  I was drawn to it because when I had walked in previously, all of the “sample” personalized ornaments had the name “Stella” on them.  Crazy.  But today, I noticed something else.  Next to one of the Stella ornaments, there was another one that said “Quinne” on it.  I was stunned as “Quinn” was the name that Ray and Brad had told us they would name their baby, regardless of its sex.   This ornament had an extra “e” at the end, but still…it was too much of a coincidence. In this case, the name was on a pink ornament…girl as I suspected!  As soon as I saw those two ornaments hanging next to one another, I knew that Ray and Brad’s baby was going to be okay.  I don’t know what I believe as far as spirits and afterlife and messages from beyond, but I knew without a doubt that this was some sort of sign from Stella letting us know she was looking after her little friend.  There they were, side-by-side, Stella and Quinn(e).

 

Later that week, we found out that Ray’s fluid was fine, and that the baby was, indeed, a girl.  I love being right.

 

On April 25th, 2013, exactly a week after Stella’s birthday, Quinn burst into the world.  Two days later, I headed to the hospital to meet her for myself.  As Aimee and I entered the doors, I was nervous.  I wasn’t sure how I was going to react when I met Quinn.  When I walked into the hospital room though, I walked into a room where the love and friendship was palatable, and because of that, I relaxed immediately.  This was a safe space and it was okay to cry here.  Seeing another little girl, looking down at a bundle of faith and dreams in my arms both broke my heart and reminded me of all the hope and joy I have for the future.  Quinn’s eyes were closed as she sighed quietly and nuzzled into my arms.  I allowed myself to imagine Quinn as a little girl, dark curls bouncing on her shoulders as she giggled at the cottage.  I thought about what she would look like as a sturdy toddler, toothy 9 year old, and athletic teenager.  I wondered if she would be a good writer like her parents, an athlete, a scholar, a goofball.  I inhaled the sweetness of her newborn scent, stroking my finger on her cheek, breathing in her promise and breathing out her potential.  I noted dark eyelashes resting on ivory eyelids, pink fingernails and wisps of hair tickling her forehead.  I fell in love at first site and my heart, without reservation, welcomed her in.  She would forever be one of “my” kids, joining an elite club of special little people that fill my heart.

 

Weeks after Stella was diagnosed in June of 2011, her two best friends (Flora and Arin) each welcomed sisters to their families.  Flora’s sister Alice Caroline Joy was born on July 30, 2011 and Arin’s sister Ayokari Estella (Ayokari means “joy is all around in Yoruba), was born on August 1, 2011.  I’ve always thought it was incredible that just as we were losing our little girl, Stella’s best friends were each gifted with one.  It has to mean something. It has to.  Each of these little girls will always be extra special, and each carries a bit of Stella with her, both in their names and their personalities.  We don’t have our little girl on Earth with us, but we have Gracie and Alice and Kari, and now Quinn.  A whole little army of smart, strong, spirited little girls who, along with our sons and Xavier and other kids we love, help fill the gaping hole left behind by Stella’s death.

 

Standing side-by-side at Meagan’s walk today, part of a massive hug, made me think of the circle of life.  Births, deaths, little girls, mother’s day.  It all filled my heart and spilled over into salty tears down my cheeks. And I thought about how different everything is this mother’s day, and how sometimes you have to let yourself die inside so you can rise from the ashes and become a new, hopefully better, person.

 

Oh, and Ray and Brad picked out the middle name “Elora” after they read the blog

because Elora means “ray of light”, which reminded them of Stella.  And then Ray pointed out her name was Quinn E.  “Quinne”.  Guess Stella knew best after all.  She always did.

 

For Mother’s Day today, I wish everyone- parent or not, the gift of learning to build bridges, not walls.

 

Our Meagan’s Walk Team— these people are amongst those who literally held us up over the last 20 months.  More pictures of the day can be found here: http://www.flickr.com/photos/11952371@N04/

Aimee and I do Meagan’s Walk:


Xavier and Sam take part in the human hug:

April 25th, 2013: Ray and Brad welcome Baby Quinn:

Quinn Elora, two weeks old:

The ornaments, Stella and Quinne:

Stella painting, October 2011:

Meagan’s Walk:


 

 

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