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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Weight

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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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The future is in the past

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A few weeks ago on one of my (extremely rare) Saturday’s off, I wanted to take the boys to Kimbourne drop-in centre.  This is a place that Stella spent a lot of time at when she was young, and a place that both Hugo and Sam went to with cousin Xavier almost every single Saturday for almost two years.  My sister Heather and I had a routine.  She would come over on Saturday mornings at around 9 with Xavier and the boys would play while one of us went to Tim Horton’s for tea.  We would leave just after 10am and play at Kimbourne until about 12.  Then we would come home, give the kids lunch and it would be nap time.  We did this every weekend almost without fail.  Then we got a cottage and I got an internship that has me working 4 out of every 6 weekends, and suddenly we hadn’t been there in over 7 months.  When I called Heather to tell her we were going to Kimbourne she paused for a moment on the phone then said, “Actually, Daniel [Xavier’s dad] takes Xavier on Saturday’s now.  They go to Scarborough Town Centre Mall then to his dad’s and then his mom’s so I can clean the house and do my homework”.  Daniel used to work every weekend, but several months ago he got a Mon-Fri job, and I hadn’t realized since I was working/cottaging so much that they had slipped into a new routine.  “Oh,” I said, “Okay, no problem”.  When I hung up the phone, I felt like bursting into tears.  Change has never been harder for me than since Stella died.  Although I continue to move and grow, I somehow forget that the rest of the world is doing the same thing. Changing. Moving.

Luckily, Aimee agreed to come to Kimbourne with me, so I still got to go.  As I walked through the doors and smelt the familiar smells, I heard the unmistakeable shriek of laughter that always hits me when I first walk in.  I smiled at the familiarity of it all.  But once I got the kids out of their jackets and watched them take off towards the toys, I realized something was different.

I didn’t recognize anyone.

For so long I had been going there on a regular basis and knew all the parents, all the children and all the teachers.  But now there was nothing but new faces filling the nooks and crannies.  And suddenly, my kids were “big”.  Kimbourne is popular with the baby/toddler set and my 2 and 3 year olds were now amongst the biggest, fastest, strongest there.  It felt strange.  I also found out that one of the teachers that had worked there for close to 2 decades had died recently.  “Stella’s Snuggling Corner” that opened at Kimbourne back in 2012 is still there, but her photo is gone as is the little plaque explaining who she was. These people didn’t kmow Stella. They didn’t know me. I felt awkward.  The kids had a great time, but I kept looking around trying to figure out who all these people were.  I finally did see a mom I knew and she was balancing a new baby on her hip.  I didn’t even know she was pregnant last time I was there.

I left feeling a bit sad.  Although I knew that stepping into a new career of Funeral Directing would be challenging for my family and I, I underestimated how difficult it would be to lose so much of the life I was familiar with.  I rarely get to see the group of moms and kids that were so close to me when Stella was alive.  I work evenings, I work weekends. I work when they are all socializing and hosting birthday parties and taking the kids to swimming lessons.  Stella’s friends have formed new friendships, the parents have paired off into different cliques and groups.  I find that it feels like I’m swimming against the current.  Needing to move forward, but wanting to allow myself to be pulled back as well because it’s just so damn exhausting to just leave it all behind and forge forward.

I plugged in an old external drive that housed photos and videos from Stella’s days pre-DIPG diagnosis.  I got sucked in to watching video after video of her and it truly felt like I was watching somebody else’s life, somebody else’s child.  There was Stella carving a pumpkin with a younger looking, thinner version of myself.  My brother was there in the video too, shorter with a slightly higher voice.  I heard her voice and saw her facial expressions and felt somehow disconnected from it all.

I don’t remember that life, that world.

Maybe that’s part of grief, to block it out because it hurts to much to realize all that has been lost.  Here I am forging forward with life and getting caught up in my new career, my sons, cooking, cleaning, laundry.  I don’t remember that life and that world on a daily basis.  I watched video after video and tried to understand what happened to that world I was watching.  What happened to the bright-eyed, chatty, beautiful little girl that in one of the videos walks up to her Uncle Tristan and out of nowhere nails him on the head with a huge metal spoon, then smiles and walks away nonchalantly.

The truth is, I was always so afraid that I would forget Stella, but that hasn’t happened.  I have, however, started to forget the person I was when she was alive.  I have forgotten the way the house looked when it wasn’t covered in the boys dinosaurs and train sets.  When I zipped up dresses instead of fly’s. When mornings started at 5am and I struggled to explain to my daughter why Tutus weren’t considered winter outer wear.

On November 13th, I went to a very special event at Women’s College Hospital in Toronto.  it was the opening of “Stella’s Playroom”.  This room is a free, supervised playroom for children to be in while their families are in healthcare appointments at the hospital.  Aimee and I know firsthand from having to drag Sam and/or Hugo to psychiatrist appointments there when they were babies how disruptive and difficult it can be to balance caring for your child while you are trying to deal with your own health concerns.  You can read more about it at:

http://www.womenscollegehospital.ca/programs-and-services/mental-health/Stellas-Playroom

Anyhow, there was a big ribbon-cutting event at the hospital.  Aimee had taken care of inviting all the people there as I was drowning in work and life.  As the people started to arrive and fill the room, I got a crazy sense of being catapulted back in time.  There, standing in one room, were the people who had been there through Stella’s illness and death.  Her friends, their parents, Cath Porter the Toronto Star reporter who followed us for a year to write newspaper articles about Stella, the psychiatrist that we saw every single week for over three years, our family, friends, neighbours.

Aimee and I stood in front of these people and cried and spoke about our little girl.  They were there.  And so was I.

Afterwards, Sam said to me from the backseat of the car, “I didn’t see Stella at the party”.  I felt my heart smash into a thousand pieces as I realized that he was probably excited to go to “the party for Stella” (as we kept calling it), because he assumed she would be there.  That girl from the photos whose toys he plays with, whose mommies he shares, who he looks for but can never quite see. “Stella wasn’t there because she died,” explained Aimee without missing a beat, “Remember?  Her body didn’t work anymore”.  Sam nodded, content with that explanation, but I still felt sad.  How badly I wished that Stella was able to  be at that party.  But maybe she was, in a way.

It’s different now.  I don’t get to see those people very often anymore, or experience things the same way.  But that old world, it’s still there.  It’s in the personal memories of all the people whose lives Stella touched, no matter how fleeting or small.  It’s in the ways she changed Aimee and I from the inside out.  It’s in those videos, those spaces she once skipped through.

It’s on the carpet of Great Wolf Lodge that she threw up on when she was 11-months old in the front lobby.  When we were there with the boys last month, I purposely sat right on the spot I remembered she had been sick.

It’s in the silly singing snowman she used to crawl towards and laugh at when she was 8-months old for her first Christmas that I just unpacked for the boys from the attic and introduced them to last night.

It’s in her Olivia blanket that Sam had claimed for his own, and her purple teddy bear that Hugo cuddles up to at night.

It’s in me.  She grew in me, she died in my arms, she has seeped into my pores and affected every inch of me.

I think whenever I really want to find Stella, all I have to do is look in the mirror.

 

P.S.  Catherine Porter did a follow-up article on Stella’s Family for the Toronto Star in honour of Stella’s death-anniversary last month.  If you didn’t get a chance to read it, check it out!!!

http://www.thestar.com/news/insight/2014/10/26/three_years_after_her_death_child_stricken_with_brain_cancer_still_inspires.html

 Gracie and Sam at Great Wolf Lodge, October 2014:

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Hugo and Sam helping to close the cottage, October 2014:

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Ready for daycare! (Nov. 2014):

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Stella in Auntie Heather’s arms, June 2012:

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October 22, 2014

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It’s 3:09am according to the blinking light of the alarm clock at Great Wolf Lodge.  Neither Aimee nor I can sleep, plagued by bittersweet memories of the life and death of our precious girl.

Dates are hard.  Hard because on specific ones, you can remember exactly where you were and what you were feeling.  Two years ago today Aimee and I were broken as we held Stella’s frail, failing body in our arms while she gasped her last few breaths on this earth.

October 22, 2014.  A date that seemed a lifetime away on that afternoon two years ago.  But now…almost suddenly…here we are.

Last year on the first anniversary of Stella’s death, we gathered around her tree at Riverdale Farm with family and ate chocolate titbits, lit candles, cried, laughed, remembered.  This year we thought we would do something for the boys.  Always remembering that Sam’s birthday is less than 48 hours before Stella’s death-date, we decided to acknowledge both dates by going to Great Wolf Lodge.  Stella’s favourite away-from-home destination.  We calculated that she came here 5 times in her short life, which is more than most people probably come here in their entire lives.  The last time we were all here together was when I was 9 months pregnant with Hugo (I gave birth 3 days after we returned—talk about cutting it close!).  Stella lived another 12 weeks after our last trip here.

We arrived yesterday, after making a stop at her tree in Riverdale Farm.  The boys visited all her favourite animals, told the pigs they were stinky and then laid their “offerings” at the foot of her tree— flowers from Hugo, a gourd from Sam.  Then we stopped at Tim Horton’s for chocolate Timbits and drove straight to Niagara Falls and Great Wolf Lodge, met Gracie and her mommies and unleashed the children on this world of excess that Stella loved so much.  The boys love it here.  With big cousin Gracie showing them around, they ran up and down the halls, splashed in the water, whooped it up down the slides, danced around the lobby and ate massive bowls of vanilla ice cream with sprinkles on that melted down their chins and stained the front of their pyjamas.  They were still awake at 10:00pm last night, unable to calm down from all the excitement.

So today, we will mourn and celebrate our little girl at a place that gave her much happiness in her life. We will miss her but we will watch her brothers laugh and live and also feel lucky for all the blessings in our life and the family and friends who supported us then, and continue to think of us and support us now.

And to anyone reading this…remember, this is the day that you eat ice cream for breakfast and feed yourself and your children chocolate Timbits!  C’mon…the wilder and crazier everyone gets from the sugar, the happier Stella would have been.

A Timbit Toast to everyone there in cyberland.  Thanks for remembering our little girl.

We miss you Stella.

 Hugo and Sam bring their gifts to Stella’s tree in Riverdale Farm:

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Great Wolf Lodge! (not good pics as it’s been a whirlwind and they are too fast to snap pics of!)

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Dinner at Great Wolf Lodge:

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Bedtime movies with Gracie and Sam at Great Wolf Lodge: 

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Stella’s last trip to Great Wolf Lodge….July 30, 2012:

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Fall Changes

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Fall is always considered a season of change.  For Aimee and I, it is the season in which we lost our precious girl.  A season of bittersweet memories marked by last kisses, warm rain and crisp evenings.  As soon as the leaves start to change, Aimee and I can feel our hearts tightening as we enter into the season of Stella’s death.
 
I took Sam to our local playground, Aldwych Park a few weeks ago.  Stella used to call it “Sandwich Park” and tantrumed mightily each time it was time to go home.  Once I made the mistake of taking her in the wagon and when it was time to leave, I couldn’t make her sit so I had to call Aimee to come get us in the car.  She was a wild one.  When Sam and I arrived at Aldwych, I noticed that one of the old slides with a steering wheel that Stella liked to play on was gone.  It had been replaced with a new climbing structure shaped like a firetruck.  Sam happily climbed up and began to play, but I was struck with how sad I felt that the old slide was gone.  It is yet another thing that has changed since Stella walked on this Earth.  The more time passes since her death, the more disconnected I feel to the things we used to do, the way we used to be.  Now when I walk into Aldwych “Sandwich” Park, I will no longer have that faded pink plastic slide— a concrete object to tie my memories of Stella to. That’s hard. Sometimes Aimee and I put an old t-shirt or pair of pyjamas that used to belong to Stella on the boys.  But they have outgrown almost all of her clothes, and soon we won’t be able to do that anymore.  Stella’s room has now become “Hugo’s room”.  Even Aimee and I call it that, without even thinking.  Though her essence is still there, the room itself has been overtaken by books about construction vehicles, Toy Story dolls and baseball caps.  At a BBQ heralding the beginning of the school year, her friends were called together for a “Senior Kindergarten” picture.  Seeing them all there, smiling at the camera made my heart ache.  They are so grown-up now.  So different from the way they were when Stella was part of the group.  My job with its crazy hours and weekends keeps me away from so many social activities and I just feel so distant from the world I once lived in with Stella.
 
In just a couple of weeks it will be 2 years since she took her last breath.  2 years since her soft, warm weight filled my arms and the smell of her maple & brown sugar porridge breath filled the air.  2 years since I nuzzled her shoulder, since I heard her cackle-y laugh.  Hugo is now almost the exact same age to the day that Stella was when she was diagnosed.  His energy, his smile, his mischievousness is so much like his older sister, yet he is a person all his own.  Sam is going to be 3 on October 20th, and has surpassed Stella in much of his development since her physical capabilities got stalled at age 2 years and 2 months.  Sometimes, he wakes up early in the morning and asks to come into bed with Aimee and I.  Though Aimee can’t sleep with kids in the bed, I will sneak him in and cuddle up, closing my eyes and breathing in the scent of play-doh and milk.  I put my head on his shoulder the way I used to do with Stella and close my eyes and sometimes pretend that he is her.  I’m sure a therapist or psychiatrist would have something to say about that…but I don’t think it’s unhealthy.  It’s just one way that I can still feel connected to her.  Remembering how it felt to have her sleeping peacefully between Aimee and I.  Sam is skinny, just like Stella was her last several months and his gangly legs and even breath is so familiar and comforting to me.  Once I even woke up and in the confusion of those first few moments of wakefulness, forgot that Stella had died and went to go smooth her curls.  The short, flat sheen of Sam’s hair jolted me out of my memory and the pain of her loss hit me full-force.
 
We had a great summer.  Despite the fact that the hours at the funeral home are challenging to manage, whenever I am off I find that I am energized and excited to spend time with the boys.  They are so full of energy right now.  They just run and leap and play from morning to night.  It’s exhausting and exhilarating all at the same time.  Sam and Gracie have become very connected.  Hugo sometimes gets in on the action, but he is content to play by himself sometimes, and often pairs off with Xavier whereas Sam follows Gracie around as though she is a celebrity.  They play well together and she looks after him.  The way she always looked after her cousin “Stellie”.
 
I was visiting with my friend Christie last week and we were remembering what it was like when Stella was alive.  Although it was a devastating diagnosis and difficult time, it was also a wonderful and magical time.  Our entire family was together day after day with the sole goal of making Stella’s life as fun and happy as possible.  We spent hours visiting, eating ice cream, putting on puppet shows, going for leisurely walks.  We were surrounded by friends and strangers who joined us in our goal and life was just a series of incredible experiences with other peoples generosity and selflessness.  Meals sent to us, people popping in with gifts for Stella, trips to Riverdale Farm and Great Wolf Lodge whenever we felt like it.  Now, we are back to the “regular” world, dealing with traffic, grocery shopping, laundry and working full-time, trying desperately to find time to visit and see all the people we love.  It’s hard.  It’s been hard to navigate all these changes.  Sometimes I get sad because my new schedule keeps me away from some of the people I was most connected with during Stella’s illness.  Sometimes I struggle with watching the world change so quickly around me while I still long for the days before my daughter was ripped from my arms.  Sometimes I allow myself to fantasize what life would have been like if things had been different.  But I can’t let myself live in the past, because I don’t want to miss all the wonderful things that are right in front of me.  So, Aimee and I have started talking about Sam starting kindergarten next year (sign-up is this coming February).  We did research on a gymnastics class that I think Sam would like to take.  Hugo has shown an interest in basketball (thanks to the movie High School Musical and its anthem, “Get Your Head In the Game”) that he has memorized.  Aimee continues to train on her bike, setting her sights higher each time.  I am navigating the challenging world of training to become a Funeral Director.  And with each day that passes, we experience change.  Changes in the seasons.  Changes in our community.  Changes in our lives.  It’s not all bad, it’s just a challenge.
 
 
Sam and Hugo enjoy watermelon at the cottage:
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Sam swinging at the park:
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Hugo loves going on canoe rides!
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Sam runs around the playground:
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Hugo does some “construction” work on Stella’s playhouse:
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Miss you baby.  Stella (August 2012):
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