Give Me A Happy Ending

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When I was little my sister and I were obsessed with a 1982 rip-off of the Pirates of Penzance film called “The Pirate Movie”.  It’s a poorly acted, low-budget 80’s film that her and I both have a soft spot for even as adults.  We have both tried to get other people to watch it and love it as we do, but so far everyone thinks it’s terrible.  Still, we know all the songs and sometimes quote entire scenes to each other.  It’s one of those comforting memories from our childhood.

One of the things I love about that movie is that it is so happy.  It even ends with a song called “Give Me A Happy Ending”.  It’s exactly how I want movies to end, with a wedding and everyone being happy and healthy and friends forever.  It’s been a joke for everyone my whole life that “Mishi won’t watch movies or read books unless there’s a happy ending”.  My best friends know to vette movies for me and will say, “You won’t like it.  It doesn’t have a happy ending…”.  I’ve never enjoyed watching the nightly news because I always felt like it was all bad news.  Maybe I lived by the “ignorance is bliss” mantra.

When Stella was diagnosed with DIPG in June of 2011, along with the intense grief and heartache there was an ultimate feeling of injustice.  The “why is this happening?”…”how can this be happening?”… “what do you mean there is no cure?…  For someone like me who is fixated on happy endings and refused to watch “Titanic” or “The Notebook” because they were too sad for me, living my own story of heartbreak was incredibly difficult.  I still remember the feeling of wanting so badly to crawl out of my skin because I couldn’t stand the pain of living the reality of watching my daughter die.  I’ve never wanted to escape from my own life so badly.  It was at some points excruciating to be existing in a world where I knew there would be no happy ending for my daughter and I.  Eventually, Stella taught me to find the joy in the everyday, and I stopped focusing so much on the “ending” and tried to enjoy the journey instead.  Retrospectively, life is a series of beginnings and endings, a quilt of separate blocks all stitched together to create a life.  But not straight, organized blocks.  Ones that all run into each other where the threads cross over and the shapes are different and sometimes clash.  Like a “crazy quilt” I once saw at pioneer village made entirely of leftover fabric pieces.  There are natural starts and stops, but no true endings.  Even after someone dies, the story doesn’t necessarily end.

I am living life without my beautiful, funny, energetic and incredible daughter Stella, but I am not unhappy.  I laugh each and everyday.  I sleep at night.  I make plans for the future.

When I see photos of Stella, or videos of her, it almost feels like an out of body experience.  That life, that world, seems so distant from the one I am ensconced in now.  Sam and Hugo are extremely close as brothers and I have trouble imagining life any other way.  Sometimes I try to picture Stella there being a big sister to Sam, and no Hugo. But I find it nearly impossible to imagine because the two boys in front of me that are singing and laughing and jumping on the couch in their underwear are so real and three-dimensional whereas Stella is a colour photograph sitting on the mantle behind them.  She existed.  She lived and she mattered and she changed everything I thought I knew and wanted.  But she is not here being part of our daily routine of waffles for breakfast and packing backpacks for school.  I don’t even know if Stella ever ate a waffle.  She ate maple & brown sugar porridge.  That was a different block of the quilt.

Like most parents, Aimee and I are exhausted nearly all the time.  Between working full time and making dinners and lunches and cleaning the house and doing laundry, we always seem to be short on time and energy.  But last night Hugo and Sam asked us to be special guests at a show they were putting on.  They moved the kitchen chairs to in front of the couch, took the cushions off the couch to create their “stage” and invited us in.  With whispered plans to one another, they started strumming on their “canjo’s” (like a banjo, but made out of a can) and singing the Barenaked Ladies tune, “If I had a million dollars”.  Aimee and I were in stitches.   They were so funny and watching them interact was beautiful.  Aim turned to me and said, “Sometimes when I watch them like this my heart feels so full, I’m so happy”.

It’s moments like those that we treasure and cherish.  The non-public, non-planned, silly little family moments that take place within the walls of our tiny bungalow in East York.

it’s moments like those that made Aimee and I want to have one more child.  One more chance to create silly, funny memories.

After years of negotiating, talking, saving and planning, we decided to try to have one more.  We doubted ourselves, doubted our ability to manage another child.  We questioned whether the want was part of a never-ending wish to fill the void left by Stella that we know can never be filled, but we live with everyday.  We talked about the financial strain, the exhaustion, how old we now are.  We discussed if the same sperm donor that we used for Stella, Sam and Hugo wasn’t available, was it a deal-breaker for us.  We talked and discussed and disagreed for over two years.  We went back and forth.  It was one of those decisions that makes no sense whatsoever on paper, that is completely illogical and maybe even a bit irresponsible.  But somehow, eventually, during one of those magical moments where the house was clean and the boys were sitting colouring quietly, it just felt like the right thing to do.

We said we would try once.  So we did, and it didn’t work.  When the pregnancy test came back negative, part of us was sad and part of us was relieved.  We thought maybe it was too crazy anyway.

It took 6 months to save up enough money to try again.  We agreed that if it didn’t work we would just be happy with our sons because we didn’t have the money to keep trying and we rationalized that maybe it was the universe— or more precisely Stella— telling us not to be selfish, and just be fulfilled with the incredible life that we already had.

So we tried one more time.  The LAST time, we said.

It worked.  Positive pregnancy test.

And then we waited to see if the pregnancy would be viable.  I was 37, my job was physical, so many things could go wrong.  So we waited.  And everything seemed to be fine.

So, if all goes well, I will be giving birth to our baby #4 in late April.

Our friends and family were surprised.  In fact, when we started sharing the news with people, there was a mixed bag of reactions.  Some people seemed thrilled, some people seemed cautiously excited and some people came right out and said they thought it was a bad idea.  Some of the comments hurt.  It was hard to feel judged and hard to remain strong in our conviction that this was the right thing to do when so many people seemed so judgemental.  It made me angry that people outside of our little private family unit thought they had a say in our decision.  “What gives them the right?” I raged at Aimee.  She, much calmer than me, rationalized that everyone loves us and was worried about us.  They weren’t privy to the two years of discussions we had, the therapy and the whispered conversations at night.  But still, it hurt.  Telling people we were pregnant was totally different from our other experiences.  When I was pregnant with Stella, everyone was absolutely over the moon excited.  Sam was the same.  When I got pregnant with Hugo, I think a lot of people thought we were being rash and crazy, but they didn’t say anything because Stella was dying and the pregnancy with Hugo was keeping me alive.  But with this one… we felt openly judged.  We know people were whispering behind our backs questioning our reasons and our sanity.  So we didn’t tell too many people.  It was an odd feeling to be so excited about something and yet afraid to tell people.

When I was 20 weeks pregnant we were able to have an ultrasound that would tell us if the baby looked healthy, and the sex.  For the most part, I wanted the sex to be a surprise because I really and truly didn’t care if it was a boy or a girl, but Aimee thought it was important that we know— she said if there was any emotional fallout based on sex, we should try to deal with it ahead of time.  So we went together to the ultrasound.  The night before I had a very vivid dream of Stella.  it was surprising to me because I never dream about Stella.  But there she was.  In my dream she was tiny like a little fairy with wings and she was flying around my head.  She said to me, “Mama…the new baby is a boy.  I don’t want you to be sad Mama, but I want to be your only girl”.  In my dream, I assured Stella that I wasn’t sad it was a boy.  I told her that I loved her brothers very much and that I loved how they were close to Xavier and the three boys do all their activities together, and since my sister just had another boy in May, I told her that it would be nice for the younger two boys to have each other too.  Then I reminded her that Gracie was like a little mother to all the boys, and would be happy to have another one to look after.

When I woke up that morning, I told Aimee about my dream and felt completely and totally relaxed going into the ultrasound.  I felt very at peace and very excited at the thought of having another boy.  The technician was very quiet though out the ultrasound and then he invited Aimee in to see the baby at the end.  Aimee asked the technician whether he could tell if it was a boy or a girl.  He nodded that he did and asked if we wanted to know.  Aimee said, “yes, what is it?”  He pulled up a fuzzy black and white ultrasound image, pointed at a blurry part near the middle and said, “it’s a girl”.  “It’s a girl!??” Aimee practically shouted.  I felt numb, immediately going in to complete shock.  My pulse quickened and I felt a bit lightheaded.  “Are you sure?” I stuttered.  He pointed at the picture and said with a straight face…”well, I’m not totally sure but there is definitely no penis, so…”   I got up off the table and went into the change room leaving Aimee excitedly texting her parents in the other room.  As I bent over to put my pants on, I saw tears hitting the worn blue carpet beneath my feet.  I hadn’t realized it, but I was crying.  I kept wiping the tears away as I dressed, but they just kept coming.  The wave of emotions was totally overwhelming.  I felt happy, but also sad.  I was shaking a bit.  I was so sure it would be a boy, I had’t really let myself consider that it was a girl.  “a daughter…girl…a daughter…”  I was almost completely quiet on the car ride back home.  Aimee kept saying to me, “what’s wrong with you?” but I couldn’t find the words to explain it.  I was happy, but I was also truly shocked and I couldn’t understand why I would dream of Stella telling me it was a boy, when it wasn’t.  My friend Omo said to me when I told her the story later, “What do you mean, that’s SO Stella…she was totally messing with you!”.  I laughed ruefully at that.  True.  I could so see Stella thinking that was a really funny joke to play on me.

When we told the boys they were excited, but slightly indifferent as well.  Not too surprising.  At 4 and 5, they are way more focused on lego and sword fights than a new baby.  It’s a bit abstract for them.  As more people were told or heart we were pregnant, we kept getting asked, “Do you know if it’s a boy or a girl?”.    It amazes me how many people when told it’s a girl react in a very relieved and “oh, that’s amazing…you needed a girl”.  It makes me think that if this baby was a boy people would be disappointed or upset by it.  My favourite reaction was an acquaintance who said, “Oh my God, it’s a girl!?  That’s amazing!  if your life was a movie, this would be the happy ending!”  As often happens in my life now, this seemingly innocent and very well-meant comment really bothered me.  She may be right—- if my life was a movie, it would probably end with a close up shot of Aimee and I cradling a new baby girl with a picture of smiling Stella just over our shoulders in the background.  But my life isn’t a movie, and having a baby girl isn’t the “happy ending” of Stella’s story.  Like everything else in life, it’s just another piece of the story that continues to unfold.  It is neither an ending nor a beginning, but simply a continuation of a life that is full of joy, pain, grief, stress, love and hope.

I still don’t like to watch movies or tv shoes that are sad.  I still prefer to believe in, and want to see and experience, happiness in the stories I read and watch.

Sometimes late at night when I’m lying in bed and the baby is moving around, I put my hands on my stomach and sing her the lyrics of the Pirate Movie song, “Give Me a Happy Ending”

No more sad times, mad, or bad times,

No more minor keys

Life’s for living, sharing, giving,

Life’s for you and me

When the going’s rough and you’ve had enough,

Leave your troubles and your woes

Turn the other cheek and forget your grief,

Make a friend out of your foe

Give me a happy ending every time

We’ll kiss and make up, 

That’s a very peaceful sign

Give me a happy ending every time

Don’t be unhappy, everything will work out fine. 

Grief is so complicated, even Aimee and I don’t always expect or understand how we feel.  But I know for absolute certain that I am excited to welcome a new baby to our amazing circle of family and friends.  I know that she will be different from Stella and I never want her to feel like she is living in the shadow of her dead sister.  We have no plans to name this baby after Stella, or put her in any of Stella’s old baby clothes.  This is a different child.  She is not a replacement child, she is a new member of our family.  She isn’t our happy ending, but she is certainly a happy part of our life.  And we can’t wait to meet her!!!

 

See you soon little baby!

Xavier, Sam, Hugo & Gracie visit Santa:

Our Valentines:

Showtime… Hugo, Gracie and Sam:

Winter Fun with Xavier, Sam and Hugo:

The boys play the “Canjo’s” at an impromptu concert:

Happy…

 

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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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Five Years

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I can’t believe it’s been almost 3 months since my last blog posting.  Time is such a funny thing.  Sometimes the days and weeks pass so rapidly now that I feel like I barely have time to breathe.  I flip the pages on the calendar in the kitchen and can’t believe it’s been another week…month…season…year.

After spending so much time in what felt like a vacuum where time was meaningless and the only thing that mattered in life was whether or not Stella was still alive that day, I still feel frustrated sometimes by how everything just keeps spinning and we have to run to catch up.  It’s made me think a lot about the whole idea of time and space and grief.  Is it that time really softens the pain, or is it that the world doesn’t give us the time we really need to grieve and remember?

June 24 marked 5 years since the day Stella was diagnosed with DIPG.  It’s a horrible anniversary.  A piece of me died that day, and even though Stella lived for another 16 months and taught me the true meaning of life as she did it, for Aimee and I June 24, 2011 is the day that our future was ripped from our hands and hearts and lay bleeding in front of us.  We didn’t do anything organized to mark the date.  We both cried a lot, and Aimee took the day off work and spent most of it by herself at the Eaton Centre doing shopping therapy., followed by a solo visit to Stella’s tree.  I worked, going to a Catholic Church that day and helping another family say farewell to someone they loved very much and trying not to think about what the day meant to me.  I avoided looking at the clock as much as possible to stop the persistent memories from flooding my brain about what had happened that day 5 years ago at 7am…9am…2pm…etc. etc.  It worked for the most part and Aimee and I got through it with an almost familiar pattern of me trying to forget and avoid the pain of the day, and her needing to feel it.

When I woke up that morning, I thought about how strange it was that this combination of dates was so painful to Aimee and I, yet reflecting how no one else would remember it.  I was shocked when barely into my morning I received a text from my friend Sheri who wished me strength on the day.  Then I got a phone message from my friend Omo and a text from Tasha.  Later my sister Heather showed me a beautiful message my 20-year old “tough guy” brother had posted on Facebook commemorating the day which many others had commented on or “liked”.  I couldn’t believe that people remembered and even though I didn’t really speak to anyone about that day directly, knowing that I wasn’t alone in my grief, knowing that even 5 years later Stella is remembered, was like having a warm blanket pulled over my chilled body.  It was truly touching.  I don’t expect people to remember— Lord knows I remember nearly no dates that are important to my friends— but that day I felt so much less alone than I had expected.

Thank-you for that unexpected gift.

I can’t believe it’s been 5 years since that horrible day.  I can’t believe Hugo is almost 4 and Sam will be turning 5 in the fall.  I can’t believe how unrecognizable my life is.  Slowly Stella’s stuffed animals and tea party set and puppet show and doll stroller have been pushed into the corners which are now overtaken with trains and superheroes.  I know the names of all 6 Power Rangers and can tell you the “secret identity” names of Superman, Spiderman, Batman, Robin, Wonder Woman and more.  I know who Jayna and Zan are.  I am aware of the secret powers of Flash, Green Lantern & Hawkman.  I can have a semi-intelligent conversation about how Lex Luther and Brainiac and Cheetah keep trying to take over the world with their high tech computers and why they keep failing.  Sam plays T-ball and rides his bike incessantly.  Hugo loves to be in the water and wrestling with cousin Xavier.  And sometimes I sit at my desk at work looking at a file and don’t understand how I went from taking minutes at meetings about early psychosis intervention pre-2011, to calling families up and asking them to please bring in a scarf for their loved one to cover the embalming scar.

My sister Heather had a baby at the end of May.  A perfect little boy (named Isaac).  My brother Tristan graduated High School mid-June and he remarked on that day that my son Hugo was born just as he started High School, and now Isaac was born just as he was finishing it.  How is it that life has so many endings and beginnings?  I feel like everything is just moving so quickly and I have to work harder and harder to remember the lessons of Stella about appreciating all the little things and taking time to be in the here and the now.  Sometimes when I’m standing at a grave and the Priest is doing the final committal instead of listening to his words, I try to take in all the tiny things around me.  I concentrate on the subtle pattern my high heels made in the grass as I walked to the grave, or notice how the slight breeze lifts the pages of the Priests book as he reads.  I try to be aware of the warmth of the sun against my cheeks and try to spot the ant crawling around the tombstone.  Only in those moments can I really feel like I’m “there”.

It’s hard to put into words what the long-term effects of such a deep grief are.  How changed I am from the inside out.  I’ve found a way to be happy, worked hard to find the JOY that Stella challenged us to find.  But I’m totally different now.  I can understand how easy it would be for peoples marriages to dissolve after the death of a child because you’re not married to the same person anymore.  Aimee and I have found a way to hold each other up through mutual respect and understanding of our individual needs.  But I’m certainly not the same person, or parent.  I’m lackadaisical… to a fault some people would say.  But I don’t care if the kids wear pyjamas to school or if they strip down to their underwear and jump into a local wading pool on a whim.  I don’t stop them from splashing in mud puddles (even when they are in clean clothes).  I’ll buy them freezies from the store even if they didn’t eat all their broccoli and let them stay up past their bedtime watching movies with me in bed at the cottage on a Saturday night.  If I drip water on the floor, I usually don’t even notice.  I prefer paper plates at Christmas so no one has to spend time doing dishes.  As an employee I’m not likely to volunteer to work overtime, and try to get out of night shifts anytime I can so that I can be with Aimee and the kids as much as possible.  I’m a lazy friend, I never cook (though I love to eat what other people cook!) and I sometimes wear pyjama bottoms and flip flops to the corner store.  In order to survive I’ve had to cut out all the things my brain believes are unimportant…random rules that society sometimes puts out that I just can’t get behind.  I’m sure I’m pretty frustrating to be around for a lot of people.  However, I truly feel less stressed than I used to be and more true to how I want to live my life.

Sam and Hugo were talking about Stella the other day.  They do that sometimes.  Sam was telling Hugo that they never get to see Stella.  They were speaking about her in the context of Isaac.  Auntie was going to have a baby and they waited and waited and now he’s here and they can see and feel him.  But Stella…we celebrate her birthday, we talk about her all the time and they see pictures and her toys, but not her.  They are frustrated by it and even as I said the words, “Yes, you will never ever get to see her with your eyes because she died” the words felt so horribly final to me.  Sometimes I feel like I would do anything just to smell her forehead one more time, or wrap one of her curls around my finger.  It breaks my heart to watch videos of her talking and saying “Momma” to me because the 2-dimensional version of her is not what I wish for.  So I just don’t watch.  I protect my heart by only pushing myself so far.  It’s not denial, but it’s a protective coating for sure.

Now that the dreadful date of June 24th is over, I’m very aware of the summer and all its joys.  I love spending time up at our cottage with family and friends and I never feel as happy as when I’m jumping into the lake with the kids and we all screech with delight at the first feeling of cool water and sunshine on our faces. Five years ago it hurt so much to wake up in the morning, I didn’t want to get out of bed and face the reality of my day.  Now I laugh with pure happiness when I get splashed in the face by a water blaster.  I can still easily get caught in the net of grief and the darkness of all the “what if’s”, but I try not to.  I really believe that Stella lived her short life in a way that I would love to match.  One day at a time, one challenge at a time, and always with a huge smile.  She taught me that there’s always a reason to smile, you just have to find it.

Two of my biggest reasons to smile, Hugo & Sam:

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Welcome to the family!  My sister’s son Isaac Elliott was born May 27, 2016:

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The three musketeers…Sam, Hugo and cousin Xavier spend a lot of time together:

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Big cousin Gracie (she’s 8 now!!!) is still looking after all the boys, still remembering her beloved cousin and BFF Stella:

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Stella at 11 months old.  I can hear her laugh in this picture…

Week 43

 

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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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