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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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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Team Stella Stars!

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

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

We’re ready.

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

We’re ready to ride for YOU.

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

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

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

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

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

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

To donate click on the following link:

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

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Beside Me (by: Aimee Bruner)

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

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

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

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

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

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

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

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

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

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Mama and Sam:

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

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