Team Stella Stars!

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Team Stella’s Stars is All Geared Up and Ready to Ride for YOU Stella!

We’re ready Stella.  Your Auntie Juju just bought a bike.  That’s right.  She bought a black bike and she’s clipped in – just for you.  Fred has been sitting on our mantle all year, right beside your Dora doll and the Stella doll that looks just like you.  In less than two weeks, I will take Fred off of her perch and carefully pack her in my bag along side of the chicken that you used to torment me with.  I have the velcro that we’ll need to adorn our bikes with photos of your beautiful face and ties to secure Fred and chicken to our handle bars.

We’re ready.

We’re ready to push ourselves far enough out of our comfort zones that we wonder if we’ll ever come back and we’re ready to tax our bodies beyond imagination.

We’re ready to ride for YOU.

There’s something about this ride that makes me feel so close to you – like you’re here with me.  Second only to the feeling I get when I stand in the door way of your room, which is now your little brother Hugo’s room.  The first time I did this ride it had only been 10 months since you died in my arms.  It was the first time in two years that I felt strong – physically and emotionally.  I was so proud to wear your face on my back.  Proud, comforted and sickened all at the same time.  Never, in my worst nightmares, did I ever imagine that it would be me who was wearing a shirt with my dead daughters face on it.  That was always someone else – the parent in that tragic story I read about on the front page of the paper – and now that person was me.

My Stella’s Stars jersey’s are folded, clean and ready.  Your Auntie Juju and I can’t wait to throw them on and join hundreds of other riders in pedalling our hearts out to do something that’s truly extraordinary – send kids to camp.  The funds raised from this incredible ride go towards making kids lives better.  Kids just like you, Stella, will get the chance to experience the magic of camp.  They’ll get the chance to realize that they’re not alone.  They’ll have the chance to make friends and to have fun.  You would have loved camp – I just know it.  From the day you were born, I had it all planned out.  You would go to Camp Tanamakoon when you were 7.  That day never came and there is a special place in my heart for the loss of what could have been.  I never had that chance to send you to camp but this bike ride gives me the chance to help send kids just like you to camp.

So this week, I will clean my bike, pack my gear and wait patiently for August 14th to arrive.

I know you’ll be sitting over your shoulders cackling your head off all the way as we huff, puff, spit and sputter our way up the endless hills just hoping that one of us will fall – something that I know you would find more humour in than anything on earth.  When my legs ache and my throat burns and I don’t think I can make it up one more hill – I will think of you.  I will remember the look in your eyes as you used your whole body to try and muster up the strength to stick your tongue out to communicate the word “yes”.  I will remember the day that you taught yourself to hold a paint brush between your teeth when cancer stole your ability to use your hands.  I will remember the sound of your laugh and I will remember what it felt like to hold you in my arms.

On August 14, 2015- I will ride for you big girl.

Please help give kids like my Stella the chance to go to camp by sponsoring our ride!

To donate click on the following link:

https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2697865&langPref=en-CA&Referrer=%26Referrer%3dhttp%253a%252f%252fwww.tourforkids.com%252fontario%252fdonate%252f#&panel1-1

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The Worst Day of My Life (by: Aimee Bruner)

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I should have been dropping you off at school today Stella.  Just like all the other parents are doing as they wrestle through the chaos of their morning routines, sipping coffee while trying to get to work on time.  This warm Wednesday in June should have been like any other – but it’s not.  This is the day, three years ago, they told us you were going to die.  June 24th, 2011 – the worst day of my life.  This day is one that your mama and I, along with those who love us, have tried to erase from history.  It’s one that I’ve buried as far down into the depths of my being as it will go but it always manages to creep back up and make its way through the cracks in my heart.  If you scratch just beneath the surface – it’s there.  The trauma of that day is etched into me with no detail left behind.  I remember what I wore that day.  I remember what you wore.  The green shirt with a bicycle on it, the brown hat I had just bought you from Roots and of course – your new “doctor’s shoes”.   Those white and pink shoes mama bought you were what we used to bribe you into going to SickKids that morning.  I remember the smell of the atrium, the echo of the Starbucks line and the green cages above the railings on each floor.  I remember your aunties arriving one by one as they (unbeknown to us) became increasingly worried about what could be wrong with their curly haired, smart mouthed, exquisite, imp of a niece.

I remember the subtle glance that the intern neurologist gave to the 3rd specialist that examined you when he caught sight of your big toe sticking up.  Looking back now, I know they knew something horrific was lurking in your head.  I remember wandering through the gift shop looking for the best thing to buy you.  I settled on a little Dora doll and you loved it.  I remember glancing down at a book in that store – “C is for Cancer” it was called.  When I saw it, I felt sad inside for the parents whose kids had cancer.  I remember the toy doctor’s kit your aunties bought you from that store, equipped with everything a doctor would need, including the little, round, blue glasses that you would put on and never take off for the 5 days that followed.

I remember all of it and it makes me sick.

I remember hearing the words “mass”, “oncology” and “brainstem”.  I remember the sad, weighted look on the doctor’s face when I asked him whether there was a chance that the tumour was benign and I remember how quickly and confidently he said “no”.  I remember watching your mama fall to the floor as the medical team worked to revive her from her terrified, faint and traumatized state.  I remember retreating to the bathroom near the nursing station over and over.  Staring at myself in the mirror, pregnant belly and all, asking myself out loud “what are we going to do?  why is this happening?”  while pounding my fists against the wall.

I remember how much fun you were having in the hospital.  Running from floor to floor, wearing a pink tutu, eating 3 hamburgers a day, holding court while surrounded by your family, friends and favourite people in the world.  I remember how hard I laughed when you started to cry and tantrum when it was time to leave the hospital.  “I don’t want to go home!”  “I want to stay in this hospital!”  It was the first time I had laughed in days.

When I look back on the horror of that day, four years later, I am amazed that we lived to tell about it.  Human survival is an amazing thing.  That, the army of people that joined forces to lift us up and hold us where we needed to be to make it through each day, and of course – you.

Last week, as I sat in the 3rd row at your mama’s graduation, I was overcome with emotion.  There I sat, for over an hour as I waited for the ceremony to start, in a fountain of tears.  Flashes of June 24th, ran through my mind and I my thoughts were filled with the weight and enormity of what your mama had to overcome to be there.  Standing in a graduation gown, holding her diploma – a funeral director, because of you.  You would be so proud of how she has chosen to live the rest of her life honouring you and what you’ve taught all of us.

Stella – because of you, we are still here.  In so many extraordinary ways, you’re still here too, tethered tightly to us.

We love you big girl – on this day and every day.

Love,

Mommy

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Stella the day after she was released from hospital

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Sam & Hugo, Stella’s greatest legacy:

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April 18, 2015

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Stella would have been six years old today, April 18th 2015.

There are some “days” in this journey of grief that are harder than others.  Her birthday is a doozy.  Because it is a “date”.  Something we can use to measure how long it’s been since she lived and died.  It’s a time that we remember the excitement of awaiting our first born child.  The moment I got to call Aimee at work and tell her I was in labour.  The moment that Stella was born with a group of 10 enthusiastic adults in the room all there to witness the incredible moment that Aimee shouted, “It’s a girl!” and the room erupted with cheers and tears of JOY.  Stella Joy.

It’s also a day to reflect on how different life turned out from what we expected that first day of her life.  We pictured the first day of kindergarten, soccer matches, high school graduation, laughter and a lifetime of getting to know our little red-headed miracle.

But life had something else in store for us.

Sometimes when I think about what we were robbed of, I get so angry.  Incredibly angry.  Because the world not only took our daughter away, it took away our blissful ignorance of the terrible things that can happen.  It took away our dreams of the future.  It took away our plans and hopes.  It robbed us of beautiful friendships that didn’t survive after our daughter died.  It robbed us of the life we planned for ourselves.  It’s very easy to get sucked in to a vortex of anger and bitterness.  It’s very easy to fee as though life is unfair and you have been so deeply wronged that you have the right to be angry all the time.

The anger comes easily to me.  And when I feel it bubbling up, I work hard to remember all the gifts and beauty that Stella’s life and death gave me.

I have to consciously remind myself of the new friendships that have grown from her cancer and death.  I have to remind myself that Aimee and I have become better parents, better daughters, better people because of the lessons she taught us.  I have to look at Sam and Hugo and allow their laughter and love of life to wash over me and cleanse the anger from my soul.  I have to look in the mirror and think about how brave Aimee and I are.  How proud I am of what we have accomplished and the people we have become.  I have to say out loud, “Stella would be proud of you”.

Some days I can cope better than others.  I find myself trying to push memories aside as a coping mechanism.  I don’t flip through photo albums of Stella.  I don’t keep her little shoes where I can see them, but bury them deep inside my closet.  I never read the old entries from the blog.  I try to live in the present all the time.  To enjoy where I am and what I’m doing and who I’m with.  I try not to think of the “what if’s” and get envious of Stella’s thriving friends who are doing all the things that she should have had the chance to do. I try not to stare at little girls in the mall and feel jealous.

Lately though, I’ve been finding that even when I try to push things aside, the memories find me.  If I go up to the attic to put away the boys winter clothes, I see all the bins that hold Stella’s things.  Her clothing, her favourite dolls, art and then the guest books from her funeral.  Yesterday I needed to thin out the children’s books that drip off of our shelves and I kept finding books I remembered reading to Stella.  I couldn’t bring myself to give them away, so I just shoved them to the back of the shelf. We still keep Stella’s baby bottles on the top shelf of our kitchen cupboards.  We need the space they occupy for other things, but neither Aimee nor I can bring ourselves to throw them out.  And even almost three years after Stella has died, Aimee and I sleep with a space between us.  The space that was occupied by Stella throughout her illness.  The exact space that she took her last breath.  We never talk about it, but neither of us touches that gap between us.  Her “Pink Kitty” stuffed animal sits there day and night.  Almost like a placeholder, waiting for her to come back and snuggle in.  A hole in the bed, mirroring the holes in our hearts.  A physical space that acts as a constant reminder of the little girl we loved and lost.

Stella fast asleep on Pink Kitty, at age 1:

Stella kitty 1 year

In some ways, Aimee and I live in a world now where Stella isn’t on the hearts and minds of many of the people we see.  Aimee’s work has seen many staffing changes with old staff leaving and new staff coming in.  Staff that know nothing of Stella or her journey.  I’ve begun a new career and there is no one at my place of work that met Stella or read the blog, or has any idea about the long days and nights we spent caring for her.  Old friends have drifted off, new friends have come in.  Of course you tell people about her, but it isn’t the same as those people who were with us from the beginning.  Those that cared and watched and waited and grieved right along with us.  It’s hard to go into work on “those” days (for example, I’ll be working on Stella’s birthday), and act as if everything is normal when you’re heart feels like it’s been ripped right out of your chest.  I don’t have the right words to explain to people who weren’t here what it is like to wake up on your dead child’s birthday and not have her there to hug and sing Happy Birthday to, and tell funny stories about the day she was born.

For Stella’s birthday this year, I will be running a funeral.  A funeral for a baby that didn’t get a chance to live past its parents imagination and hearts.  I will push aside my own grief and stand with them as they mourn the future that they were robbed of because of “bad luck” or “circumstances”.  I won’t tell them anything about Stella.  They will have no idea that my heart is also broken.  They won’t know that when I look into their eyes and tell them, “I’m so sorry for your loss,” that I’m not just saying the words, I’m actually sorry because I can feel the same sharp pangs in my chest that they can.  People at work will wish me a Happy Birthday, and I will smile and say thank-you.  They won’t think to wish Stella a happy birthday too, because even though they may know we shared the same birthday, it won’t occur to them to say anything.  After I run the funeral and help another family bury their baby, I will head to Chuck E Cheese with my family.  In a place of chaos, noise and screaming children we will both celebrate and mourn the little girl who couldn’t be at her own birthday party.  There will be a balloon on the table with her name and age.  There will be family.  There will be cold pizza and warm pop.  There will be cake.  But Stella will be missing.

Everyday Stella is missing.

I worked a funeral two weeks ago for another young girl who cancer stole away from the world.  Her mother ended the Eulogy by recalling a conversation between a child and it’s mother:

“Mama…why did she have to die?  Why her?  She was the most beautiful, the most perfect, the most incredible person”.

“Yes, she was.  Le me ask you… when you choose a flower from the garden, which one do you choose?  Isn’t it always the most beautiful, the most perfect, the most incredible?”

She sure was.

Happy Birthday baby girl.

Stella JOY (age 2):

Stella Cell Phone age 1.5

The boys eat ice cream “just because” in honour of their sister:

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Gracie, Sam and Hugo hunt for Easter eggs:

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Happy Birthday Stella!

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Beside Me (by: Aimee Bruner)

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From the moment you could walk I spent most of my waking hours chasing you around.  Never for one minute did you sit in the same place for longer than a few seconds – it just wasn’t your thing.  I remember trying to hang on for dear life when you used to hug me, wishing the hug would last just a moment longer and just when I thought it might, you’d twist and wiggle right out of it, giggling all the way.  On Saturday mornings, when it was my turn to sleep in, I remember hearing the pitter patter of your little feet tearing around our house.  You were making waffles with mama.  I always knew that my sleep in was nearing an end when it got quiet all of a sudden as you plotted with mama to wake me up.  Once the bedroom door swung open – it was all over.  As you climbed up onto the bed, cackling with every move, it was hard for me to pretend to be asleep without smiling.  I remember the smell of maple syrup on your face like it was yesterday as you planted a sticky kiss on my cheek.  Again, no matter how hard I’d try to hug you or get you to sit on that bed with me, you always managed to escape.

There’s a photo of you and I posted on the bulletin board in my office.  We’re walking together in Mexico.  Just you and I, side by side.  You’re not holding my hand of course but when I look at it, I can feel you walking beside me.  Mama was walking behind us when she took that photo, so the image is of us walking away in the distance.  Sometimes when I look at that photo, I imagine that we’re there, on that trip, in that moment, frozen in time.  That photo is one of my most prized possessions.

I remember when you used to get a cold or fever, secretly loving the fact that you would want to cuddle into my lap.  It really was the only time in your life, that you would stay.  DIPG changed all of that.  As the tumour invaded your brainstem and stole your ability to walk, you finally wanted to be held.  You needed to be held and I needed to hold you.  There you were on the couch.  On my lap.  In my arms. Beside me.  For a year and a half, I got to hold you.  Your mama got to hold you. That is a gift that DIPG slammed on our doorstep as it tried to extinguish you.  A gift we would take even though it brought us both moments of joy that were often overshadowed by excruciating pain that debilitated our souls.  We held you in our arms as we were forced to do things that parents should never have to do to and for their child.  We held you in our arms when our bodies were broken and our hearts couldn’t see past tomorrow.  We held you.  I remember the feeling of holding you for hours on end.  My left arm would fall asleep and my shoulder (that will never be the same) would ache.  When I was sure that you were finally asleep, I would slip out from underneath you and sneak away for a long awaited washroom break and a glass of water.  I would always find myself back on that couch though, with you right beside me.

We worked so hard to sleep train you as a baby and as a toddler over and over again.  All that to one day buy a king sized bed just so that you could spend the rest of your time on earth sleeping right beside us.  The big girl bed.  That’s what we called it.  One of my biggest fears back then was that you would take your last breath in the night without us knowing and that we would wake up to find you gone.  I spent most of the the night clutching your tiny bicep while keeping one finger on your chest so that I could feel your heartbeat and your chest rise and fall beside me.  Now I sleep with my outstretched arm across your empty spot in the middle.

You see Stella, I never imagined that there would come a time when you weren’t right beside me.  Now, memories of you lie neatly packed into a box beside my bed.  Shortly after you died, I found myself very possessive over certain things that were yours.  I started to collect them and put them in the box so that I always knew where they were – right beside me.  The box is bursting at the seams now as your brightly coloured hair bands push open the lid.  Your mini book about shapes is in there too along with small pieces of your t-shirts, the green wrist band you loved to wear, the chicken that you used to torture me with that cock-a-doodle-doos and pieces of your perfect curls – each one carefully tied up with a white ribbon.  You were unconscious when your mama and I washed your hair for the last time.  We brought a tub of warm water onto the bed and carefully washed your beautiful curls as you lay on our arms.  It was torture but we had to do it.  We knew that this would be the last time we washed our baby girl’s hair and we knew that we needed to keep some of your curls here with us.  So we lay there that day and watched your hair dry for hours.  We found each curl that we couldn’t be without and carefully cut it.  I was determined to make sure that no one could tell that your hair had been cut because I wanted you to look as you always did.

The fact that my first born has been reduced to a box of curls beside my bed devastates me in an unimaginable way that no one, who hasn’t experienced it themselves, can understand but I am so glad to have those curls.  I open that box every night before I go to sleep and every time I peek at your shiny red curls, I smile as I remember just how perfectly orange they were and how they managed to catch the light in just the right places.  Although my weighted heart aches as I feel your absence with my every being, when I close the lid and roll over to turn out the light, I close my eyes knowing that the pieces of you are right beside me.  Where they belong.

Sam and Hugo wearing their new matching “Gwinches” shirts:

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Winter is finally coming to an end…Sam and I celebrated by heading to the park!

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Hugo’s new haircut.  Ready to join the military!

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Mama and Sam:

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I remember every single pore of Stella’s beautiful face:

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“You never write on the blog anymore,” is a common refrain amongst my family and friends.  People demand to know why, as though I owe them an answer.  Well, I don’t have one.  I write when I want to, I write when I have something to say.  I don’t write for anyone but myself.  And Stella.  This blog was to tell Stella’s story, to make a record of her extraordinary life for her brother’s and Aimee and I to look back on and remember.  So that we would never forget all the things she taught us and all the ups and downs we weathered.  We were writing her story.  Now that she’s gone, we are still writing her story but it is a little bit slower.  More spaced out.

So I didn’t write before Christmas, or during Christmas.  Or on the New Year.  But I can write about it now.  Now that we’ve gotten through it and I’ve had time to digest it all.  To remember and reflect.

“How was your Christmas?”

It was heavy.  And not heavy as in I gained 20 pounds from eating chocolate and and gravy-covered meat dishes (although that part is true too).  It was emotionally heavy.

That is the only word I have to describe it.  I went through all the “special” days feeling as though there was a huge weight on my chest.  The Holidays’ this year were fast and furious, and I missed a lot of it because I was working.  I straddled my life and the life of a funeral director and sometimes the two parts crossed over into one another.

Christmas Eve I wrapped presents and visited St. Lawrence Market with Aim and our friends Kate and Christie, then rushed off to work where I embalmed and dressed people and answered calls from people whose loved ones had just died.  When I got off work, I arrived at my mom’s just as everyone was sitting down to the table for Christmas dinner.  I scarfed down some food then rushed home to fill stockings and prepare for the next day.  Christmas morning, the kids started opening presents, and I quickly shoved breakfast down my throat then ran out the door to work as they were opening gifts.   Work was another whirlwind of answering calls from people, preparing bodies and rooms for visitations, paperwork and picking up bodies.  At the end of the day, I rushed to Aimee’s moms and arrived just as dinner was being  cleared from the table and the kids had finished opening their gifts.  Boxing day I woke up and headed off to work again, leaving the kids and Aimee playing with all the new toys.  Back and forth I ran, a series of spending time with the living and then leaving to go care for the dead.

The last couple of months the management has let me do more than just parking lot duty and flower runs.  I have gotten to help run some funerals, I have been on the front line with families.  And the truth is, I have seen a lot of death in the last 7 months.  Witnessed a lot of heartbreak, tears, shock, fear, raw pain. And as the holiday season approached, I found myself feeling weighted down, not only by my own struggle to continue to survive in a world without my vibrant daughter, but by the pain of all the families I had helped over the last half year.

Just days before Christmas I ran my first solo service.  It was at a crematorium and I was the only one from the Funeral Home who was there.  I brought with me, buckled in the front seat of a black sedan, a tiny white 18” casket containing the hopes and dreams of a young couple.  A beautiful, full-term little girl who was born dead and no one knew quite why.  I had gently dressed her in a pink knit bonnet and frock, covered her in a white crocheted blanket and then placed her in a casket.  At the crematorium chapel, friends and family gathered to pay their last respects.  I guided everyone through the impromptu, informal service where we covered the baby in rose petals, spoke about how she had been taken too soon did some prayers, and then I pressed a button that opened a metal gate.  Behind the gate was a concrete room, cold and grey.  My footsteps echoed loudly on the cement floor as I placed the tiny casket on a rolling table and helped load it in to the retort (aka the kiln), then stood by while a solemn faced crematorium operator pressed the button which ignited the fire inside.  Flames rose up and quickly swallowed up the physical body of that baby and casket, filling the room with dry heat and an orange glow.  The parents stood together, sobbing loudly and clutching their hearts in pure agony as we all waited for the right moment to retreat from that room, close the heavy metal gate and return to the chapel full of its flowers and stained glass windows.

I didn’t go to the crematorium to watch Stella’s little body get swallowed up.  I didn’t want to be haunted by the nightmare of it all.  Aimee and her sister and mother went and though I have never asked Aimee about it, and don’t want to know any details, I know she is deeply scarred by it.  Her eyes go empty when she remembers that day.  I don’t know what happened with Stella when she went into the retort, but I know the process.  I know the sights and sounds and smells of it all.  I know the horror and the emptiness.

So when I entered into the Christmas season this year, I took with me the memory of that couple at the crematorium who had likely already bought a “Baby’s First Christmas” outfit for their dead daughter.  I took with me the memory of the three teenage girls who had buried their cancer-ravaged mother just the month before.  I took with me the memory of the grey-haired widower who had just buried his wife of 52 years.  I remember his heavy footsteps as he trudged out into the winter weather, and I wondered how it would feel for him to wake up Christmas morning alone for the first time in more than half a century.

As I drove around Christmas Eve and Christmas Day, picking up dead bodies all over Toronto, I thought a lot about Stella.  I thought about how hard holiday’s are without her and how difficult they would be for each of the families that I was going to meet in the next few days.  Each death call we received over the holiday’s was magnified by the fact it was “Christmas”.  There were the daughters who went to their dad’s house Christmas morning with all the grand-kids and found him dead in his bed.  The husband whose wife put the turkey in the oven then said she didn’t feel well and went to lie down, dying a few hours later.  The two stillbirths— Christmas babies who didn’t make it.  Whether the death was expected or unexpected, someone old or young, each story left its weight in my heart.  So though my heart swelled with happiness Christmas morning when Sam and Hugo joined Aimee and I in bed to rip open their stockings, and though I loved seeing their rapt faced when Santa Claus showed up at my mom’s house Christmas Eve (thanks Uncle Daniel!!!), all my joy came with a certain amount of sadness.  Maybe it’s not sadness so much as perspective.  Knowing that there is more going on in the world than what was happening in my little living room with the wrapping paper and brightly coloured toys.

On Boxing Day the front of the Toronto Star newspaper featured stories of “the best gift ever”, highlighting babies born on Christmas Day. I wanted to rip it into tiny pieces.  All I could think about were the parents whose babies were born and died on Christmas Day.  As if they weren’t hurting enough, now they were going to be tortured by reading about other people’s Christmas babies— the amazing, beautiful story that should have been theirs too.

Heavy.

I still feel the weight of all these stories now, two weeks after Christmas.  I feel the weight of the knowledge that there are countless families like Aimee’s and mine which are not quite ever complete at the Holiday’s.  Or any day.  Aimee and I only got three Christmases with Stella, and only two “pre-diagnosis” when we still believed in the magic of Christmas.  Christmas had never really been the same to me.

But even though I missed most of the “traditional” aspects of Christmas this year… the dinners and the present opening and the frantic pre/post holiday shopping, I found my own Holiday spirit.  In the quiet, in-between moments where there was sun shining down and Christmas carols playing on the car radio.  When the boys first laid eyes on their bulging stockings.  When I bit into my favourite Christmas morning breakfast of bagels, lox and cream cheese.  When I got warm hugs and hot chocolate.  The heaviness was still there.  The grief of Stella’s absence went with me everywhere.  But every time I saw a star light up on someone’s house, or the street, or a tree, I could hear a high-pitched cackle-y laugh and knew that Stella was with me.

Reminding me that the heavier the weight, the stronger I will become.

Hugo admires Stella’s tree at Riverdale Farm that we decorated for Christmas:IMG_9410

 

Gracie and Sam play at Great Wolf Lodge, our Christmas gift to them:IMG_9375

Sam and Hugo help decorate Stella’s tree:IMG_9306

Sam and Hugo play at the park on Boxing Day:

 

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Hugo, Gracie and Sam have a movie-night sleepover:

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One of the very few photos Aimee and I have of all three of our children.  Stella died 3 weeks after this photo was taken:

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