Gracie’s Grace

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Gracie’s Grace:

Gracie was the first baby to be born into our family.  She arrived in the spring of 2008 and dozens and dozens of family members and friends celebrated her birth.  The first niece.  The first grandchild.  The first daughter.  The first child to carry the hopes and dreams of the next generation in her dimpled little fingers.

When I got pregnant with Stella, Gracie was 4 months old.  Aimee and I were thrilled that our child would be so close in age to Gracie.  We didn’t find out the sex of our baby, but both whispered excitedly at night as we dreamed of our future, that it would be amazing if it were a girl so that our daughter and Gracie could be “besties” forever.  Retrospectively, I’m not sure why we felt so sure that only another girl would be best friends with Gracie.  I think it’s likely because Aimee and I are both best friends with our sisters, so it seemed natural that another girl would be the right fit.  When Stella burst into the world, just before Gracie turned 13-months old, one of the first things Aimee and I said to each other was that our little girl was destined to be best friends forever with Gracie. With her doe-like green eyes, dark brown a-symmetrical haircuts, lean frame and olive skin, Gracie was the polar opposite (in looks) to our chubby, porcelain, mop-top daughter.  But somehow, right from the beginning, they just fit together and complemented each other perfectly.

Everything we did was for or with “the girls”.  We bought them matching pyjamas to wear at Christmas.  We took them everywhere together…to watch Tutu skate, to Great Wolf Lodge, to Mexico, to the park, to concerts, to drop-in centres, swimming, cottaging, Maple Syrup-ing, etc. etc.  The girls were inseparable.  Stella became Gracie’s “Stellie” and Stella called Gracie, “Gwacie”.  Gracie was the perfect older cousin.  She was always very gentle with Stella, very caring and protective.  When Stella could only crawl, Gracie would crawl too, even though she was capable of running circles around her.  Stella was always more outgoing and daring than Gracie.  I remember taking them to a petting zoo when Stella was 11 months old and Gracie was days away from turning two.  Gracie shied away from the bleating sheep, while we had to restrain Stella from pushing both her chubby hands through the split-rail fence and into the sheep’s eyes.  Gracie was sweet.  Stella was cheeky.  Gracie was timid.  Stella was bold.  Gracie was athletic.  Stella was clumsy.  Gracie was tender.  Stella was rough. Gracie liked sitting for movies and shows and books.  Stella liked running and throwing and sliding.  They both loved to dance.  They both loved Great Wolf Lodge. They both loved animals and they both thought the other was the funniest person they’d ever met.

The hours after we received Stella’s fatal diagnosis are mostly a blur to me.  I’ve tried hard not to think too much about them because it is too traumatic to relive.  But, one memory which always stands out clearly from the rest, is a vivid picture of Andrea–_Stella’s beloved Auntie Andgie—crouched over on a wooden bench on the 5th floor of Sick Kids Hospital, tears streaming down her face.  I remember her looking up and saying, to no one in particular, “What are we going to do about Gracie?”  Our hearts sunk even lower than they already had.  The despair and sadness swallowed me up whole in that moment.  Not only would Aimee and I have to learn to let our daughter go, but Gracie was going to have to grow up without her “bestie”.  It was nauseating.

With the help of our friend and resident Children’s Grief expert Andrea Warnick, we were all able to speak to Gracie about Stella’s tumor and for the most part we think she understood.  As Stella’s body changed, Gracie changed her playing to accommodate her.  Chasing each other around in circles became playing tea party together when Stella couldn’t walk anymore.  Watching puppet shows became reading books and eventually, when her eyesight and motor skills were fading, watching TV, became just cuddling.

Gracie was present every step of the way as Stella lost her faculties.  She never seemed jealous of the attention Stella got, never got mad about the weekly birthday parties we threw for her, never fought for attention from doting grandparents who admonished her to “be gentle” with Stella.  Gracie sometimes asked questions about Stella’s tumor, and once in awhile expressed her wish that Stella would be able to run again and talk again and “not die”.  But for the most part she just bounded into the house day after day and stretched her imagination to its limit as she found ways to engage with Stella in a much more natural and healthy way than any of the adults ever could.  She was always the caregiver in their relationship, but she also took on some of Stella’s bravery and boundless energy when Stella’s started to wane.  Gracie was at the house just moments after Stella took her last breath.  She spent time with her body after she died, and wailed in raw agony as the black car carrying Stella’s body drove out of our driveway.  But for the most part, Gracie seems to be dealing with Stella’s death in the same way she accepted her physical changes—quietly and openly.

Gracie talks often about Stella.  Saturday she peeked out the window in Stella’s room and said to us, “I’m just checking to see if Stella’s spirit is still playing outside.  She said the backyard is her favourite place”.  Gracie constantly draws pictures of herself with Stella.  In these drawings, Gracie is always twice as big (because she’s the “big” cousin, after all!) and she always puts mounds of curls on top of Stella’s head.

Gracie still comes to the house.  She often goes into Stella’s room and pulls out a piece of her clothing to wear.  The clothes are all too small, but she puts them on regardless and breathes life back into Stella’s toys and spaces, which is like a balm for our bruised souls.

Now it is Sam whom Gracie runs to when she walks into our house.  It is Sam who follows her reverently around, basking in her energy and attention.  It is Sam who she chases and grabs in big hugs.  Now it is Hugo who she looks after.  It is Hugo she protects.  It is Hugo she feeds bottles to, and holds.  Gracie has a different relationship with our boys than with Stella.  But she loves them just as fiercely, and I am confident that despite a 4-year age gap and difference in sex, their relationship will continue to grow and will become vitally important to all of them.   And Xavier is in the mix of cousins too.  When Sam and Xavier were born just hours apart in October of 2011, I said that they were destined to be best friends.  Then Aimee and I began to cry because we remembered another set of cousins who were supposed to grow up as close as siblings as well.  Xavier is a sweet-faced boy who is twice the size of Sam, but a gentle giant who has already shown a love for music and cuddles.  Together, this motley group of children bring laughter into an otherwise weeping house and hope where hopelessness grows much too easily.

I am curious to see the kind of person Gracie will be as the years pass.  It will always be bittersweet to watch her navigate life without Stella.  I know I will always wonder, “what if…” and I know I will always cry when Gracie experiences or accomplishes something that Stella should have been there for. But, in the absence of my own daughter, Gracie is there to wear dresses and listen to my crazy theories on how Cinderella and Sleeping Beauty were sisters.  Gracie is there to alternatively play with, and tease, Sam and Hugo.  Gracie is there to dance in the living room and colour pictures for the fridge.

Just like Stella Joy, Gracie is aptly named.  Her name means “Thanks”, and I am very grateful for her indeed.

This is a video made by our friend Chris Yap.  It was shown at Stella’s Funeral (aka Stellabration of Life aka Stella’s Celebration of Love).  I have never gotten through this video without bawling, because I think it really highlights how much love Stella had in her life.  And it shows clearly the adoration of Gracie, and her best friend/cousin:

Some of the drawings Gracie has done recently of her and “Stellie”:

The boys:


 

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Hearing Through The Quiet

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Hearing Yourself in the Quiet

 

This afternoon I am sitting in the back of my house, in Stella’s room.  Stella’s room is dark until about 4:30 in the afternoon, when the sun starts to stream in and casts dozens of rainbows on the pale green walls thanks to a “Rainbow Maker” that Tutu bought for her last year.

 

I often find myself drawn to her room when the day is quiet.  Hugo is sleeping and everyone else is away at work or school/daycare.  Even though Sam has been sleeping in this room for the last 8 months, we still call it “Stella’s” room and it is still full of all her things.  The books on the shelf are the ones I used to sit on the floor and read to her…or, more accurately, that she would pull off the shelf and hurl across the room while giggling loudly.  The stuffed animals in the corner are the ones she used to drag around by their ears, and toss down the slide at the park.   The drawers are still full of her clothes (Sam’s are kept in Hugo’s room).  Some of the art has changed.  It says “SAM” above the change table, but there are still black marks on the wall behind his name from when Stella used to kick the old picture that hung there as I attempted to change her diaper.  The far wall has one of the posters from her Funeral on it. Her smiling face looks down on me each night as I tuck Sam into Stella’s old crib.  Her pink baseball cap sits in one corner, high up, where we strategically placed it after she died.

 

It’s unbelievably quiet here nowadays.  The large community that rallied around us when Stella was sick and when she died has been disbanded.  Our family and friends are still here for us, just not in such a physically present way.  But there are many people who were staples in our home that have vanished.  Because after Stella died, their work with us was done.  There was Chris, Stella’s nurse who came to our house every week and always called Stella “Boo” as she deftly went about her work, often sharing stories of her own two daughters and their comings and goings.  There were the palliative care Doctors, Kevin and Brar, who would sit on our couch, listen to our greatest fears, assure and reassure us continuously, prescribe medicine for Stella and share limitless comforting words with us.  Their patience as Aimee and I pestered them with questions about “when” and “how” seemed endless.  There was the local pharmacist, Barry, who got to know us, and Stella’s ever-changing prescriptions, with impressive accuracy.  There was our awesome volunteer music therapist, Christina, who filled our home with beautiful music and generosity.  There was Cath (journalist) and Tara (photographer) who intimately documented Stella’s last year with us, visiting us and asking questions about how we were feeling, how we were managing, how we were living; snapping photographs capturing both the ordinary and extraordinary things we were doing.  At one point there was a co-worker of mine who was stopping by regularly, bringing gifts of fun socks and funny stories, but she disappeared sometime in the summer. There were the neighbours whose son died just 11 days before Stella.  We clung to each other during the last couple months of our children’s lives, crying, hearts breaking, but haven’t been in contact since late October.  There were energetic morning and afternoon visits from Auntie Andgie and Auntie Heather that have slowly petered off.   The cupcakes from Christie, morning Timbits from Poppa, homemade applesauce from neighbor Ken…it’s all disappeared.  Or maybe disappeared isn’t the right word, but every interaction is different now.  Less intense.  Less purposeful.

 

Now the phone doesn’t ring, the door stays shut and it’s mostly just Hugo and I in the house all day.  It’s not necessarily a terrible thing to be creating a new semblance of “normal”, it’s just different.  Quiet.  So quiet that I can often hear the birds chirping outside from the living room couch.  Even though Stella hasn’t been out to feed them this winter, they still loyally sing away in our tree.  Now that it’s just me off on leave by myself, I’m trying to create a pattern to my days.  But the thing about grief is that there is very little predictability

 

I signed up for a class at Glendon on Thursday evenings.  I’m the oldest in the class (probably by a decade), which became painfully obvious when I pulled out a notepad and pen while everyone else booted up their iPad.  I’m completely anonymous in class.  Nobody there has ever laid eyes on me before.  It’s both refreshing and nerve-wracking.  Ditto for the “Mom and Baby Groove” dance class I’m taking on Friday mornings in the West End of the city.  I went to the first class last week and quickly realized that I was, once again, the social misfit I remembered from my youth.  I was a white-running-shoes and black-leggings third-time mom in a room full of high-top sneakered, fluorescent coloured, fedora-wearing first time moms.  I was both envious and resentful of their innocence, speaking to each other with great enthusiasm about how little Cole learned how to roll over, baby Finn’s perceived love of the colour chartreuse, a husbands eye-rolling worthy attempt to play with baby James and watch the hockey game.  I had nothing to add to the conversations, so stayed awkwardly silent, pretending to study my iPhone with great interest.

 

Then yesterday, the journalist Cath came over just to hang out with me.  I was surprised after spending so much time with her how jittery I was about it.  But I was nervous because there was nobody here but me.  No other people to take the attention off me, no other person to depend on for conversation topics, no opportunity to discreetly excuse myself to another room if I began to feel too awkward.  No Stella to talk to, no Aimee to bounce conversations off of.  I was completely insecure.  Scared that I wouldn’t be stimulating enough or keep up conversation that was interesting or intelligent enough.

 

I’ve realized that along with the intense grieving that goes along with losing Stella, I’m also needing to face my biggest fears again of not belonging anywhere specific. I’ve always been a bit of an “odd duck” as my Nana used to call me, but in some ways Stella’s illness was a shield to me.  As one friend joked a couple of weeks ago, “People have to be kind to you.  They’re like— ‘hey, be nice to her, her kid died’, there’s a lot of power in that”.  It’s funny, but also true in a way.  Most people who know about Stella probably cut Aimee and I a bit more slack when it comes to relationships and social cues.  But now, in the “new normal”, not everyone knows about Stella.  I’m just another mom in a dance class, another student in a class, another person out on a walk with a friend.  And I feel awkward because I don’t quite fit in this new role, I’m not entirely sure where the person I’m morphing into belongs.

 

Since I gave birth to Hugo five months ago, none of my clothing fits.  I’m still carrying around some extra weight.  Since Stella died, my life doesn’t fit anymore.  Physically, mentally and emotionally I’ve got some work to do to make it all fit again.

 

Stella was so good at adapting.  Within a period of 16 months she had every single physical part of her ruthlessly stripped away.  And still she laughed.  Still she lived.  Despite the fact she was only three years old, she intuitively knew that trying to be someone else is a waste of who you really are.

 

So for now, cuddled up in Stella’s room, surrounded by her things, I guess I have to accept that I’m in an “in-between” place.  I am still learning how to sit back and just let the rainbows dance on my face in this quiet room.  I am staying present in this peaceful moment, letting all my insecurities and worries melt away, and allowing my mind to drift back to when these walls had the laughter of pure, curly-haired joy dancing in their shadows.  My God, I miss that giggle.

Sam and Xavier having a bath…perhaps Sam has a bit of Stella in him after all…:

Sam:

Nanny and GrandPa read to the boys:


Stella about two years ago…she was such a character!  Blurry because that’s what parenting her was like—she was always moving so darn fast.


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Stella’s Funeral

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The Program from Stella’s Funeral (designed by Brad and Ray)

Funeral

 

Stella’s Funeral— or “Stellabration of Love” as we like to call it—took place on November 1, 2012.

Even now, 2 1/2 months later, it still feels pretty surreal.  We said goodbye to Stella.  Said goodbye to the most *alive* person I’ve ever met.  Aimee and I worked hard on this farewell to our girl.  We planned it a year in advance with our incredible officiant (A Life Celebrant named Linda Stuart), and the wonderful people at Mount Pleasant Funeral Group.  When it was all over, we were proud of it.  We felt we had done our girl right.

The night before the service, a big team of us went to the venue and transformed it into a Stellabratory place.  It was covered in huge pictures of our beaming daughter, the fabric “hugs” our friends and family had made that covered Stella as she took her last breaths, pictures of Stella from the Stella and Sam book/TV series that she so adored, stars and the “What I Learned from Stella” messages that hundreds of blog and forum readers shared with us were taped to the back of all the chairs.  It was truly breathtaking.  The day of the funeral, the incredible Mount Pleasant Staff ordered 500 chocolate timbits that greeted people as they walked in the doors.

Even though we were so involved in every single aspect of the funeral and it planning, it was very much an “out of body” experience to be there, in that room, trying to say goodbye to Stella.  I remember very little of what happened that day.  Just small flashes sometimes come to me.  I remember kissing the warm cheeks of my co-worker Jackie.  I remember seeing our friend/midwife Christie bouncing Hugo while I spoke.  I remember when I was trying to give my Eulogy, my nose was dripping and I had to stop to ask for kleenex which everyone assumed was for my tears, but with which I had to (subtly) wipe my nose.  I remember trying to stifle a giggle when I noticed Gracie using Juju’s legs as a slide during the service and trying desperately to adjust the Spanx I was wearing, to mask the extra 25 pounds I was carrying post-Hugo, without looking like I was itching my butt.

What I don’t remember is who was there.  What anybody said.  What it smelled like.  I don’t recall when or if I cried.  I couldn’t tell you what food we served, or if I ate any of it.  The service was important for us and those who loved Stella, and there are many people from the cyber-world or friends who weren’t there that have expressed interest in seeing it for themselves.

We were lucky enough to have Tara Walton (our friend/photographer) videotape that service.  She did it because of the Toronto Star article that Catherine Porter was writing, in lieu of Catherine having to take notes.  She gave it to us and about 90% of the Stellabration of Love is captured on her videos.

I wasn’t sure about posting it.  I’m not sure how many people are truly interested in watching it again, or watching it at all.  It’s a frightening thing to have video of yourself so obviously exposed and bleeding from the soul outwards.  In these videos, you can clearly see how broken we all are, but also how committed we were to ensuring Stella was honoured.

If you are so inclined, I invite you to watch and celebrate Stella with us all over again.

When I look back on this day, I don’t think of it as the day I said a final goodbye to Stella. I always assumed a funeral was a final farewell, but the thing is, I can still see and feel her around me.  I think many of us can.  Gracie called me just a couple of hours ago to tell me that she had kept Stella in her pocket this afternoon, and made a special blanket for her to also keep in her pocket so “Stellie will be snuggy and warm”.

I miss my girl so much.  But if she can’t be snuggly and warm in my arms, I’m happy to know she is safe in Gracie’s pocket instead.

PART 1:

PART 2:

PART 3:

PART 4:

PART 5:

 

Hugo and I the morning before we left for the service:


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Boxes

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Boxes

My house is full of boxes.  It’s the way my brain works— everything must be able to be neatly labeled and put in a box somewhere, if need be.  Boxes marked “miscellaneous” are the bane of my existence.  I don’t believe in them.  There has to be SOMEWHERE that the contents belong.  I like boxes because, to me, they symbolize order and logic in a chaotic and illogical world.  As a result of my love of boxes to put things, both our attic and basement have stacks of plastic bins labeled with such exciting titles as, “Hallowe’en Costumer 2T-4T”, “Hugo Wardrobe Summer 2013”, and “Christmas- Singing Toys”.

When I was a baby, my mother bought my sister and I each a massive steamer trunk.  She dubbed these our “Memory Trunks”, and with each passing year of our lives she would select a few things that represented that year and carefully place them in there.  When we moved out of our childhood home as adults, we had a personal time capsule full of favourite outfits (I can’t believe the size of the shoulder pads kids wore in 1987!), school projects (do you know I once wrote an entire essay dedicated to the lost art of the Accordion?), memorabilia from important moments (i.e. dried flowers from my stint as Flower girl in 1984), etc.  These Memory Trunks are precious to my sister Heather and I.  They are a glimpse of us as little girls, a reminder of awkward teenage years, first dates, hobbies, friends and memories of a time long gone.  We always get a kick out of revisiting our past when we paw through the trunks once every few years and often spoke about how funny our children would think it was to go through these trunks with us when they were older.

When Stella was born, I wanted to continue this tradition of a Memory Trunk, so from the time she was born, I carefully put away favourite outfits of hers and labeled them with little notes and memories.  On a tiny white gown I wrote, “This is the hospital gown they put you in just after you were born at St. Michael’s Hospital on April 18th, 2009”.  On her first bathing suit I wrote, “This bathing suit was bought for you by DeeDee when you were 3 months old and you wore it all summer to the cottage in Coboconk, Thunder Beach and at your very first swimming lessons with your friend Arin”.  I put in the little wooden box she made for us at Daycare with the neatly typed poem on top stating, “This box is full of love inside”.  I put in her first doll, “Sassy”.  There are piles of neatly folded clothing washed and ready for Stella to pull out someday and laugh with me about.  Her birth announcement.  Cards from her first birthday party.  I put it all away with love and ignorance; picturing the day her own children might wear some of the outfits and giggle at the stilly styles of the decade.  Someday.  Someday.

As you know, that “someday” day never came.  As Aimee and I packed away the Christmas Ornaments in their designated boxes and hauled them up to the attic yesterday, I caught a glimpse of Stella’s Memory Trunk.  Up in a corner of the attic, it sits next to a stack of neatly piled bins.  Two of them say “Stella’s Room” and one of them, the biggest one with the blue lid, says “Stella’s Funeral”.  Inside “Stella’s Room” are items that once adorned the shelves in her room that her brother Sam now stays in.  Things like her “Stella” alien doll given to her by Flora’s family her first Christmas.  A finger-painting that Gracie made Stella for her second birthday.  A “My First Years” scrapbook partially filled out.  The Winnie-The-Pooh mobile Uncle Tristan picked out that lulled her to sleep the first 8 months of her life.  A photo of me pregnant with Stella, holding my stomach and smiling widely at the camera, my face full of excitement and anticipation.  Inside the “Stella’s Funeral” box is the leftover programs from her Celebration of Life, a huge stack of sympathy cards, the fabric “hugs” friends and family made to cover her in as she lay dying, and that later decorated the room in the funeral parlors where her service took place.  There are all the contractual forms we signed, indicating that we agree to have her cremated, that we want the ashes placed in a certain box, the bill for her place in the Scattering Garden at Necropolis Cemetery, and the bill for her funeral with all the itemized parts of it (you know, like cremation cost, administration, floral arrangements, etc.).  It looked so messed up to me to see all those boxes lined up in the attic:

Stella’s Memory Trunk.

Stella’s Room.

Stella’s Funeral.

I found myself wondering how the Hell all this had happened and how my life had become so out of control that all the boxes in the world can’t make me understand or contain the emotions inside.  I know if I crack open any of those boxes feelings and memories will come spewing out of the lid like poisonous snakes.  Tears, anger, horror, regret and profound, deep, sadness.

When you box something you put it away, you don’t see it.  You know it’s in there, but it’s hidden from view.  I have no idea why I can’t throw out the funeral stuff.  It’s not like I ever see myself pulling things out and reminiscing happily about that day.  I have no Memory Trunk for Hugo or Sam.  I always meant to make them each one, but I began to wonder what I’m supposed to do with all the bins and boxes I already have.  All of a sudden they make no sense.

The trouble with all these boxes filled with objects, is that I still want to see Stella and feel her.  I want to run my hands over the paintings where her fingers once happily spread rainbows of colour.  I want to smell her bathing suit and imagine that she’s once again running across Great Wolf Lodge in her little brown crocs with Gracie.  I want to remember the pure joy and excitement I felt when she was living inside my stomach.  But how can I?  How can I when I’m afraid to open those boxes and feel all the other emotions that come with remembering.  The hard and heart-breaking ones.

Stella’s stuff is still all over the house.  Her toys fill the toybox, her photos cover the walls, her clothing remains in her drawers and is actively worn by Gracie on the weekends.  I know in time we will slowly start to replace a few of these things with new toys, new photos of our lives, new clothing to fill the drawers.  I know the newspaper articles about Stella will someday start to fade and crack.  I know the paper she drew on will become brittle and yellow. I know her toys will get broken and thrown out.  The objects I have of hers at the end are not the things that will sustain me or fill my heart, only the memories in my heart and head can serve that purpose.

Stella never fit into a box before, and she sure as Hell isn’t fitting into one now either. I hope someday all those bins in the attic with Stella’s name on them will be like little boxes of magic that, in some small ways, bring a bit of Stella back to life for me.  For now, they are just organized chaos, a reflection of how I’m surviving these days by forcing myself to box and compartmentalize all the things that, right now, are too hard to look at.

The irony of boxes is that they are, utimately ambiguous.  They represent both freedom and confinement.  Which, strangely enough, is exactly what Stella’s life was like at the end.  Her body confined her, but her spirit ran free and wild right to the very end.

Perhaps one day I will see the boxes for what they are—discovery and consciousness.  For now, they are just a place to put all the crap that threatens to clog the future.

Uncle Tristan, DeeDee and Hugo in New York:

Gracie and Sam on the slide:

Hugo with our friend Omo (Arin’s Mama):

Hugo and Sam playing early in the morning:


Stella last year…’cause Aimee said we should always remember her smile! 


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