Searching for Stella

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Well, here I am sitting on the itchy, crumb-covered carpet at Great Wolf Lodge while the kids colour Power Rangers pictures next to me and Aimee watches CNN—hanging on to every detail of the upcoming US election (sigh).  It’s a slightly different scene every year, but the cast of characters never changes.  Me, Aimee, Gracie, Sam, Hugo, Auntie Angie (and, until this year, Juju— but she had to work) show up at the doors of Great Wolf Lodge to both celebrate and grieve the death of our beloved Stella.  As soon as the big glass doors swing open and we are greeted by the animatronic howls of wolves, we all feel a sense of deep sadness, as well as comfort.  Even though the outside world continues to change and move, Great Wolf Lodge stays the same.  We have been coming here for 7 years now and they serve the same bread pudding in the restaurant, tell the same jokes at the end of kids story time, sell the same t-shirts in the giftshop and have the same wallpaper on all the bathrooms in the entire lodge.  It’s incredibly comforting.  When you come here it doesn’t matter what time it is, what day, or what season, because inside it always smells, looks and feels the same.  Because Sam’s birthday is two days before Stella’s death anniversary, we are always here for his birthday.  He thinks that’s why we come.  We definitely celebrate his birthday while we are here, but it is also our escape from the sadness of “that” day— October 22, 2012.  We immerse ourselves in the chaos of noise, sugar and temper tantrums and wait for the day to pass.  All the while spending insane amounts of money on sparkly temporary tattoos, oversized cookies and cheap souvenirs.

As soon as Aimee and I start to feel the first hint of autumn in the air, we steel ourselves for that feeling of intense sadness that comes as Stella’s death anniversary approaches. It’s almost a relief when it’s over because the build up is so painful.  As each date passes, we are forced to relive those horrible last days which, although they were peaceful and full of love, were excruciating to endure.  October 1 was the last day we took Stella out for ice cream.  October 9th was the last day Stella opened her eyes and really responded to us.  October 11 was the day we thought she was going to die as she gasped for air and shuddered in our arms.  October 20th was Sam’s first birthday, and October 21st was Xavier’s.  Stella lay dying in our bed, her bony chest slowly rising and falling and we sang “Happy Birthday” to the little kids and held lit cupcakes in front of her motionless body.  The tears, which don’t come as often anymore, come easily around these dates.  I remember we went to the Funeral Home on Hallowe’en Eve to prepare for her funeral, and then the actually funeral was on November 1.  The following week we had her Stellabration at Riverdale Park.  The details of all those days play in my brain like an old movie.  No matter how I try to distract myself, the memories flood to the surface.  I have her little face flash in my mind when I’m unloading the dishwasher.  The last outfit Aimee and I dressed her in floats in front of my face as I wait at a traffic light on the way to work.  The feel of her soft skin on my chest as she slept next to me wakes me up at night, and it sometimes takes me a second to realize it’s Sam or Hugo that’s crawled into my bed, and not her. Sometimes when I make toast in the morning, I make two pieces of white bread and put honey on one, and jam on the other then cut them into 4’s because that’s how my dad served me breakfast every morning for a year while Stella sat on my lap.  When I wake up at night after uneasy dreams, I can’t remember if Stella’s DIPG was a nightmare, or really happened.  Then my eyes adjust to the dark and I see the paintings at the end of our bed with her footprints on it, and I remember that she really is gone.

It hurts every single time.

Now she’s been gone 4 years, which means she’s been dead longer than she was alive.  Yet the three and a half years she lived I can recall with great detail, whereas the 4 years that have passed since come to me in small chunks.  I can remember lots of things, but there are huge chunks of the last four years that are missing.  For example, I barely remember Hugo’s first year of life.  i don’t know what I did with him all day, I don’t remember when he first spoke, or walked, or got his first tooth.  I just know that he was 10 weeks old when Stella died, then suddenly he was 2 and I started remembering again.  I know I learned to drive and got my license, but I don’t remember any of my driving lessons.  I have forgotten how to cook my Nana’s scalloped potatoes.  But I can tell you exactly what I was wearing the day Stella got diagnosed.

I usually reflect as her death anniversary approaches what has changed in the way we live.  And as the years pass, the changes become more permanent and pronounced.

I recently realized that one difference in the time that has passed since her death is how I find her. When Stella first died, Aimee and I felt as though we really needed to hang on to her things. Each toy, every piece of clothing, each physical space that she had been in was a memory.  We couldn’t stand the thought of getting rid of anything that Stella had touched.

Recently, I’ve been trying to convince Aimee that we should move out of our home. I want to save money and get out of the city. I feel happiest up at the cottage surrounded by trees and water and where the boys can run and not have to worry about cars. I like the pace of life out of there. There is always time to stop an look closely at a turtle crossing the dirt road. The people who live there ask at the grocery store checkout how so and so’s mother is feeling and we spend time as a family reading books and doing crafts instead of being stuck in traffic. But when I talk to Aimee about moving, she always says, “I am never leaving this house. This is Stella’s house…how could you ever want to leave here?”. I have come to realize that Aimee still finds Stella in the walls of that physical space.  She can’t stand the thought of leaving the space that Stella was born into, lived in and died in.  And when she comes to Great Wolf Lodge, Aimee looks for Stella in the Cub Club and the Warm Pool, and she remembers her little yellow bathing suit and finds her in the shadows under the fake trees in the lobby.  But I don’t see Stella on the living room couch, or the splash pad at Great Wolf Lodge.  I don’t find Stella in her bedroom at home, or in her little pink teapot that still hang around the house getting played with once in a blue moon by the boys.  Aimee loves wearing the t-shirts or sweatshirts we’ve had made over the years that have Stella’s name and picture on them.  But I have to be reminded to wear them because although I like them, I don’t find Stella there either.

So I started to ask myself…where do I find Stella?  If not in her room, or her toys, or her clothes, or the house…where is she?

I came to the conclusion that because so much of me…my identity, my way of looking at life, my hopes and dreams…have changed since Stella’s diagnosis and death, I find Stella in the way I live my life.  I find her when I don’t get frustrated waiting in line at the grocery store because my cashier is “in training”.  I find her when I don’t have enough money to pay my phone bill, but I take the kids to Toys’R’Us and spend $40.00 on Lego.  I find her at work when a family I’ve helped hugs me after their Funeral and thanks me for making a difference for them.  I find her when I give the kids a second cookie after dinner, or let Sam wear pyjama pants to school.  I find her when I go for walks and take time to feel the sun on my face and watch an ant crossing in front of me.  I find her within me.  I have tried to take all the best parts of her and make them a part of me.  I don’t need to look for her in a physical sense anymore, because she is in every breath I take.

A few weeks ago, I ran into a very difficult situation at work.  After being told I was to be transferred to a new location, I had a concern regarding my new schedule and how it would affect my life at home.  “We don’t make business decisions based on personal lives,” I was told.  Any questions I asked were either ignored or answered with “that will be decided once you are at the new location”. I was frustrated beyond belief, and that’s when I found Stella.  Because as I was sitting in that room, listening to someone tell me that my family took second place to my duty as an employee, I got a moment of intense clarity.  There is nothing more important to me than time with my family.  I’d rather sell the house and live in an apartment than work a job that keeps me away from birthday parties, thanksgiving dinner, the Christmas Eve church pageant and my kids weekend soccer games.  Becoming a Funeral Director has made it abundantly clear to me that tomorrow isn’t guaranteed for anyone.  If we are lucky, we get to live to a ripe old age, but even then it is someone’s parent, sister, friend, aunt who dies.  And out of all the eulogies I’ve listened to, they all boil down to the same theme— the good times the deceased spent with the important people in their life.  What is the purpose of living a life where we forget the things that truly matter?  So even though it would make more sense for me to find Stella at the playground she used to love, the Dairy Queen I walked her to, or the yellow monkey shirt of hers Sam sometimes wears, I actually found her in a sterile funeral home office during an intense and difficult conversation.  It reminded me of a saying I read a long time ago on a card that said, “She will never be there when you want her, but she will always be there when you need her”.

Sometimes Aimee and I talk about how even though the time after Stella’s diagnosis was the worst time of our lives, it was also the best.  Because we had no purpose in life other than to be surrounded by the friends and family who meant the most to us.  And even though it is not possible to live a life like that every single day— obviously we need to work and clean and cook— I never want to forget that the most important thing in the world is spending time with the people you love.

So even though I could say that I find Stella on this itchy green carpet at Great Wolf Lodge, I think I really find her in my conviction that the one thing you can never get back, is time.  Whenever I want to find her, I just look for the part of myself that is braver now, surer now, and is letting her kids stay up past their bedtime right now because, hey, we’re at Great Wolf Lodge and Stella would have wanted it that way.  And yes, Stella, we will be having ice cream for breakfast tomorrow.

xoxoxox

We stopped at Stella’s tree on our way to Great Wolf Lodge to bring some flowers and Timbits (Hugo, Mishi, Gracie, Andge & Sam):

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Violet brought Sam his birthday cake at Great Wolf Lodge:

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The first day of school…Issac, Mishi, Sam, Hugo & Xavier:

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Stella’s little brothers… 4 and 5 already!

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We wish we could see Stella in person, instead of visiting her grave at Necropolis Cemetery, but Sam always finds her plaque and gives it a little kiss:

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Missing you sweet girl

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5:18am

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5:18am and I’m sitting at the airport waiting for a flight to Kentucky so I can further my training as a Funeral Director by becoming involved in something called “Life Well Celebrated”.  Due to poor weather in Toronto, I missed my connecting flight to Kentucky last night and spent all night in the airport.  Armed with a thin blanket and $10 food voucher (thanks United!) I have spent the last 12 hours in relative quiet.  And the same thought keeps going through my head… how did I get here?  Not just here at the Washington airport, but here… in this life.

While trying to sleep last night (a task made nearly impossible by the hard seats, 24-hour blasting of CNN on multiple television sets, bright fluorescent lights and cold air being pumped in from somewhere), the last 7 years of my life kept playing in my head like a movie reel.  Stella’s birth.  Her first steps.  First birthday.  I remember who was there, what we all wore, the songs we sang.  I think about her special Easter dress, I remember her diaper bag in great detail.  The way her forehead smelled.  The way she laughed and ran away.  Like a scratch on the DVD, my brain skips over the diagnosis part of her DIPG and settles in on ice cream for breakfast and trips to cottages and Riverdale Farm.  I remember the puppet shows in the living room, walks to the park and trips to the grocery store for avocados.  Somehow the pictures in my brain erased the morphine pump and chapped lips.  Sometimes I don’t know if my memories are real or just a combination of photographs we have and stories that have been told and retold until they are almost fables whose message is clear, but whose details have been changed somewhat so that the truth lies somewhere between the lines of the story.  Her story has been retold so many times, in so many ways, to so many different people.  But still I know that I am the only person in the entire world that knows what it was like to hear her call, “Mama!” from her crib at 5 a.m. and then greet me with arms outstretched and a big smile, floppy curls framing her blue eyes like a porcelain doll.

Aimee has been bugging me to write on the blog for weeks.  Months really.  My dad too.  No one else really mentions it though.  Sometimes I don’t know why so much time passes between blog entries these days.  Part of it is that we live in a state of constant exhaustion as we try to navigate the age-old tasks of working full time, parenting, going to school part-time and trying to maintain relationships at the same time.  There are days I write entire blog posts in my mind as I drive to and from work, but by the time I get where I am going, the tiredness sets in and I find myself unable to type even one word.  My new identity as a Funeral Director is wonderful, for the most part.  I really feel like I have the opportunity to make a difference but it is gruelling at times.  Aside from all the details… music, food, speeches, clergy, cars, maps, flowers, caskets, candles, bodies, cosmetics, etc. etc. there is an emotional weight that comes with every family.  Sometimes the family reveres the funeral director, other times they loathe them.  Some regard us with quiet awe, others think we are blood-sucking salesmen trying to prey on them in their hour of need.  But regardless of how others see me, I try to give each and every family 100%.  Which can be totally exhausting at times.  Sitting with them as they sort through decades of family dynamics that seethe just under the surface, trying to keep them focused on the tasks at hand, but knowing that the 20-year old sibling rivalry sitting across from me will eventually boil down to, “does mom prefer yellow or pink roses for her casket spray?”   I love it, but it’s sometimes hard to balance.  There have been many nights— too many recently— where I have needed to miss bedtime snuggles and family dinner because I had to work late.  But Aimee and I are managing.  We are learning together, and separately.

A few weeks ago Aimee drove Hugo and Sam past the place we got married almost 10 years ago.  This led to a discussion about what it means to be married (after a long explanation, Sam summed it up perfectly by stating with complete certainly, “getting married means you are going to stick together”).  Since that day, the boys have asked about our wedding and so finally I dragged out the wedding album.  As I flipped through the photographs I barely recognized the people captured that beautiful evening.  My heart aches when I see the youthful optimism we exuded.  We had no idea what was coming, how could we have known?  Many of the people that are in the photos from that night are still with us, still very much the foundation that holds us up each and every day.  Others have disappeared completely from our lives, casualties of time or space or change.  Even death.  I used to love looking at my grandparents wedding album.  Tracing the outlines of the faces I knew, but when they were younger and full of the unknown of what life would bring.  I did the same to my own face now.  Remembering when the hardest decision I had to make was whether to choose Belize or Costa Rica for our honeymoon destination.  When I look in the mirror, I don’t think Aimee and I have changed that much in the near decade since our wedding.  But when I look more closely I can see a few more wrinkles now.  Grey hairs popping through.  An extra 15 pounds on my frame.  But most of all I look at the photos and see our eyes.  Shining, glowing, so full of hope and optimism.  The world was at our feet.  It still is in many ways, but now we step more gingerly into the future because we know nothing is certain.

I have needed to mould my life and my grief into something I can tolerate.  I need to be deliberate about it.  For example, I can talk about Stella to anyone and everyone, but I will not allow myself to look at photos of her on the computer, or watch videos.  I will not allow myself to fantasize about what she would look like or be like had she lived.  It makes the loss too real.  I have learned the hard way that letting myself go there is like a rabbit hole of grief from which I have to claw my way back out again.  So I make a choice to keep myself at the edge of that place.  I balance tenuously, and on the occasions that Aimee tears up and says, “I can’t believe that happened to us…” and begins watching hour after hour of video, or thumbs through thousands of digital photos on the computer, I manage only a cursory, “I know” and then leave the room.  It may seem cruel to her, I don’t know, I’ve never asked.  But it’s the only way I can protect myself from going to “that” place again.  The fear of teetering one step too far and plunging back into the darkness of painful anxiety, grief and depression keeps me at arms length sometimes.  When I start to feel myself losing my balance on the edge of the black hole, I pull myself out by willing myself not to remember.  Maybe it’s not the healthiest thing to do, but I need to survive and that’s how I’ve figured out how to do it.

On the outset, Aimee and I and our families have healed well from our journey with Stella.  But we all still carry the deep battle scars and sometimes speak very slowly and deliberately with each other so as not to disturb the careful scabs that are covering gaping wounds just beneath the surface.  We have all changed.  So drastically.  And it’s sometimes hard to reconcile the people we were then compared to the people we are now.

Our boys, Hugo and Sam, are thriving.  Both perfectly healthy, happy little people who are allowing Aimee and I to live out our dreams of parenting.  They are both older now than Stella was when she died.  Stella’s friends will all be turning 7 shortly.  They are so far removed from what they were when Stella was alive that it is hard to reconcile they are the same.  They have lost their front teeth, entered French Immersion school, ice skate, play musical instruments.  Age 3 & 4 where our boys sit, and age 7 where they are, seem like light years apart in kid-time.  We have stopped trying to run and catch up because we realized that we never will.  Our friendships have changed as well.  They are not lost, but rather reimagined.  We see people less, but the bond is still there and still strong.  While our friends kids are being shuttled to various organized activities, we are still building forts from sheets in the living room and visiting Riverdale Farm.  The boys are so different.  Different from Stella and different from each other. They are not babies anymore, but becoming fully formed humans with their own strengths, weaknesses, fears and dreams.  They have a strong relationship with each other, and with cousin Xavier and cousin Gracie.  They accept that Stella is their sister in a way that is so natural and pain-free for them.  They draw her pictures and sometimes tell me that they love Stella.  They include her in their recitation of who is in their family.  And when we go to Riverdale Farm, along with visiting Stella’s bench and tree and stinky pigs, they have taken to enjoying visiting the cemetery across the street where Stella’s official “grave” is.  They especially love to run among the stones on the ground, and then enter into the small, victorian chapel that sit on the premises.  There, they gleefully slide into hard wooden church pews and then I go to the front of the chapel and we “play” funeral.  They prompt me from their seats and shout things like, “don’t forget to say we love and miss you Stella!”.  I give my funeral “speech” and then they applaud happily.  It’s heartbreaking and heartwarming all at the same time.  A childish game that carries so much weight with it.  But I have to admit, I get strangely giddy when they ask me if we can visit the cemetery and play.  Because in my world where death is more than a preoccupation, I relish sharing some of the feelings of peace and, yes, even enjoyment, that a funeral can give to someone.  I love that the children along with playing lego and superheroes have an interest and reverence in our death rituals as well.  It’s a funny feeling.  A wry pride.

My fears of Stella being forgotten have abated somewhat.  When I get chided for not writing on the blog, people tell me that no one will come visit anymore, no one will remember her if I don’t keep writing.  Two years ago, I would have agreed but now I have come to a tacit understanding with the universe that those who remember Stella, will always remember her and those who don’t, probably never would have anyway.  And I can’t be responsible for the big or small ways in which her life affected others.  I often think it’s similar to the job I do as a Funeral Director.  For a moment— a few days at most, I am important to a family.  I am their link, their connection to the loved one they have lost.  We work closely together, we share highly charged, emotional moments.  And then, when the funeral home services are no longer needed, they disappear.  But for a moment, I was there.  And I helped them.  It’s a mutual relationship as each family stays with m somehow.  Teaches me.  Even if it’s just for a second.  Even if they are meld together into one big funeral, and their names become unfamiliar to me.  For a moment, I was changed by them and the thousand tiny changes all combine to make bigger change.  One day at a time, I am still learning to live, learning to cope in this world I now see from a different lens, and in my new role of being a bereaved parent.

And I still grieve, everyday.  The tears don’t come as often, the tightness around my heart has loosened, but that sense of cavernous loss has not dissipated.  Stella and her short life are integral in every aspect of my life.  When I breathe, it is her breath that enters my lungs and permeates my soul.  When I smile, it is the noise of her mouth smiling that I hear.  When I hold someone’s hand, it is her hand that I see.

As I get ready to board the plane to Kentucky now, I am struck by the irony of what I am doing.  Flying halfway across the continent to learn how to effectively commemorate a life through funerals. “Life Well Celebrated” is the name of the training.

I’m excited to be going, the funeral geek in me thrilled to share ideas with other funeral professionals on unique funeral ideas and experiences.

But I don’t believe we can use funerals to make a life memorable because, as the saying goes, the true way to never be forgotten, is to first live a life worth remembering.

Like Stella did.

Our boys are growing and changing each and everyday.  My greatest joys are seeing them grow into their own people, and watching their relationship with each other as well as Gracie and Xavier:

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Remember when. June 2011:

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The Pain of Wisdom

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October and the change of summer into Fall is always hard for Aimee and I. We struggle with so many conflicting emotions. Happiness at our family and our two amazing sons, and the acute knowledge that something is missing— out little girl—and she is always missing from everything that we do. Every dinner, every Friday Family Movie night we have at home, ever holiday, every moment of everyday something is missing. It is difficult to live with the ghost of the past and all of the “should have been” or “could have been”’s that we think about. Just last night I was at the grocery store. It was all so mundane. The guy checking me out did the usual, “Hi how are you” and I said, “Great. How are you?” and he responded then I watched him bag the groceries. It struck me how surreal it was to be standing at the grocery store now, almost 3 years after Stella’s death. The same grocery store her and I walked to on a daily basis when I was on maternity leave with her. And when she got diagnosed with DIPG, we walked there all the time for Avocados and fresh air. And now there I was standing completely normally, having a meaningless conversation with someone, hiding completely what I’d been though. Suppressing the vivid memories I have of Stella at that same store. It’s such a tricky thing to remember and honour her without getting stuck in the past and without focusing so much on the heartbreak and sorrow that you miss all the gifts and joy of the present.  Some days are easier than others.  Almost 3 years after her death, it is easy to look back and think how far we’ve come.

But oh my God, I miss her.

I miss her laugh. I miss kissing the top of her forehead where the curls started. I miss watching the soft rise and fall of her chest as she slept. I miss all the dreams and hopes I had for her life. Last week I got in the mail a catalogue for a line of dolls called Maplelea. At first I was so excited because I love dolls and clothing and all the amazing accessories. But then I thought about the little girl I always imagined sharing that love with and I burst into tears. Poor Aimee didn’t quite know what to do with a blubbering 36-year old holding a doll catalogue and raging at the injustice of not having my daughter to share it with. So she just held me and let me cry. We don’t even know if Stella would have had any interest at all in dolls (truthfully my sense is no—whenever we gave her one, she would try to rip it’s head off…), but that’s part of the anger of it all. We don’t KNOW what she would have done or liked or disliked. And we will never know. All I have are 3.5 years of memories and a tear-stained doll magazine that is now at the bottom of a pile of bills. There are other little girls in my life that will look at the magazine with me. But I wanted it so badly to be MY little girl. The boys…well, I never really believed that boys are boys and girls are girls, but truthfully my guys show no interest in dolls. They like sword fights, zombies, lego and bike riding. They are constantly leaping off of furniture, running in circles and climbing anything they can find.

It’s very interesting to me the way that Aimee and I have reorganized our lives since Stella died. My new career as a funeral director turned out to be the best decision I could have made. Being around other people and their acute grief is comforting to me somehow. It makes me feel less alone, and stronger, when I see the way that all human beings must deal with and overcome that final separation of death. And there is such a feeling of accomplishment and peace for me when a family thanks me for helping them. Stella comes up often in my work. I share her with anyone and everyone when it is pertinent, or I think it will be helpful. I have also had the incredible opportunity of sharing Stella’s story at various conferences around Canada in the last year, sharing with groups of Funeral and Cemetery professionals the lessons and legacy of Stella Joy. I have needed to find a way to keep saying her name. To keep proving to myself, and to others, that she mattered. That she only lived three years but she made a difference.

She is the reason that I have the opportunity to wake up each morning and help another family trying to navigate the deep and complex waters of grief and trying to plan a ceremony to honour their loved one. She is the reason that my kids have been to Medieval Times twice in two months, to the zoo, the pumpkin patch, bike riding after school. She is why they get trips to the store for ice cream and any Hallowe’en costume they want (Hugo was THIS close to being Tinkerbell this year, but changed to a knight at the last minute swayed by the little plastic sword). He is why Aimee and I never seem to have money to go out for dinner, but always have enough to take them to Great Wolf Lodge. She made our family stronger and closer. She reminds me not to get frustrated at traffic or lineups. To tell people that I love them whenever I get the chance. She taught me to enjoy the little moments of life, the bath times and the evening walks. Because, the little things are really the big things.

We will be spending Stella’s death-anniversary at Great Wolf Lodge again. Since all the dates are so close, we will also celebrate Sam and Xavier’s birthdays there. (Sam turns 4 October 20, Xavier turns 4 October 21 and Stella died October 22). It’s been interesting seeing how happy and excited the boys are to be going to Great Wolf Lodge to celebrate birthdays while the adults know that we are also going to mark an occasion we would rather forget. This cluster of dates is such a reflection of what our life is like now. Balancing joy and heartbreak all in the same breath, learning to find happiness and joy in while still honouring grief as we navigate both happy and sad occasions.

We are in a rhythm now. We know how to mark certain days and how to anticipate what is coming. There is normalcy again. There is hope and light and laughter and true joy. We are guided by our precious Stella star who reminds us each and every day to find something to be grateful for. I would give anything to hold her again and to tell her how amazing she is, but I know I can’t. So instead, I will continue to look to her for strength and find her inside of me whenever I am lonely.

“Pain can change you. But that doesn’t mean it has to be a bad change, if you take that pain and turn it into wisdom”.

Love you always baby girl.

A little ice cream at the zoo for Stella:

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Change of Season…fall for Sam & Hugo:

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Letter to Stella from cousin Gracie:

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At the Pumpkin Patch:

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Remembering that smile always and forever.  Stella, age 2:

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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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