Birth. Day.

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Birth. Day.

April 18th, 2017 would have been Stella’s 8th birthday.  Picturing Stella at 8 is fairly foreign to me.  Her friends who are that age seem like mini adults to me.  They are not generic little toddlers any longer, but fully formed people with likes, dislikes, hobbies, friends, etc.  I can’t imagine what life would have been like “if”.  We would likely have just had Stella and Sam (who would not have been named Sam), because we never planned on having more than two children.  And they would be 8 and 5 now, so we would be in a totally different part of our lives than what we are now.  I still get jealous sometimes of our friends who have the older kids.  It’s not that I don’t love the choices we’ve made and that I’m not happy with our family and our lives, but I feel like I will always have the feeling that we are “behind” somehow.  It’s complicated and hard to explain, but it’s like being a younger sibling and constantly feeling like your older sibling is getting to do more than you.  You can’t run as fast, you can’t stay up as late, you can’t play the same games.  At some point it all evens out, but I can’t help but feel left behind somehow.  Especially now when we have made the decision to start over again with a newborn baby.

My due date for the new baby was April 17th.  There were camps of people that were hoping the new baby would be born right on Stella’s birthday.  That would be so full circle.  So Hollywood.  I was adamant that this baby could be born any day EXCEPT on Stella’s birthday.  I can’t imagine how difficult it would be for a little girl to have to share her birthday with her dead sister.  I didn’t want to have to deal with another layer of complicated grief on that day.  So I proclaimed to the universe that this baby would have its OWN birthday.  I even did a bit of research to find out what would happen *if* your baby was born one day and when you filled out the paperwork online, you put another date if it would be caught. Just in case.

When Stella’s birthday arrived on April 18th, I breathed a sigh of relief that there were no labour signs.  Compared to past years, her birthday was very quiet.  I struggled quite a bit that day.  It was a very strange feeling to be remembering the birth of our first child, our beloved daughter Stella, while 9 months pregnant with our fourth child, another daughter.  Aimee and I had a couple of big cries, and for the most part we just stayed close to home.  We got lots of texts from friends remembering her on that day, and each one made me cry that even without us reminding people of mentioning it, those people whose lives she touched remembered.  Aimee and I visited her tree and brought some timbits and a balloon and candle to mark what would have been her 8th birthday.  It was a little less emotional than it could have been because it just so happened that while we were there two people had parked themselves on her bench and were drinking and laughing and gossiping loudly with one another the whole time we were there.  I thought Stella probably would have thought that was pretty funny, and it definitely kept our tears at bay as the two women sitting there were oblivious to what we were doing and who we were and continued to talk about their shopping trips and boyfriends and sip on their latte’s while we lovingly wrapped ribbons around the trunk of her tree and put up the balloon with #8 on it.

We then picked the boys up early from school and brought them to Chuck E Cheese for dinner.  It was just the four of us until my sister came, and that was it.  No other family or friends were able to come because it was a Tuesday and everyone was working, but it was perfect in its own way.  The boys loved it and Chuck E Cheese was empty, so they thought it was the greatest thing ever.  When we got home my mom and brother came over and sang Happy Birthday to me and Stella.  Then it was over.  A mixture of happiness, sadness, quiet, noise, grief for the past and anticipation of the future.

Chuck E Cheese:

 

Once her birthday was over, our family and friends went on full “baby watch”.  Since this baby was my third pregnancy, everyone—-even the midwife—- expected me to go fairly close to my due date.  But the days past and nothing happened. I was off work as of April 5th, and filled my days visiting friends, shopping, relaxing and enjoying nights of sleep.  “Any baby yet?” texts filled my phone each day.  As the days passed by, our midwife started asking about induction. At 41 weeks pregnant, we agreed to induce a couple of days later if I didn’t go into labour on my own.  The days passed and still nothing, so at 7:00am on April 26th Aimee and I met our midwife at the hospital and prepared to meet our newest daughter.  I actually thought it was a quite civilized way to do things.  With a known date we were able to arrange for childcare for the kids, let our support people for labour know to take the day off work, and prepare the boys for the day their sister would be born.  It really appealed to my type A personality!

Aimee and I just outside the hospital on our way in for our induction:

Labour itself was—-labourious.  Luckily we have the absolute best midwife in the entire world (Christie who also delivered Sam and Hugo), and when the going got tough, she made it all okay.

After a nerve-wracking few moments during delivery when she got a bit stuck and I swore like a sailor, our baby was born and as she was placed on my chest I turned to my dad and said, “I can’t believe I have a daughter again!”.  The room was fairly vibrating with emotion.  Happiness, sadness, relief, joy.

April 26th, 2017 at 6:58pm we welcomed Adele Margaret Bruner-Methven to our family.  Weighing 8lb 9oz and measuring 53cm.

Her name was fairly easy to settle on.  Stella had named both of her brothers after her favourite books.  Sam is from the Stella & Sam book series, and Hugo she chose for her favourite book King Hugo’s Huge Ego.  When it came time to name our newest child, we went right to Stella’s bookshelf again and pulled another of her favourite books, Adele & Simon.  There are 3 books in the series which focus on Adele and her little brother Simon.  Simon is always losing things and the reader has to find in the picture where he has lost the item.  Stella loved finding things and even as her body failed her she would life her shaking arm and smack her hand down on the page where the items were found.

The kids pose with Stella’s favourite books that inspired their names:

Adele’s middle name Margaret is a family name; both the name of my mother and Aimee’s grandmother.  We also like that the initials are AM (Aimee-Mishi)

The boys are delighted with their new sister.  They vacillate between being fascinated with her, and ignoring her completely, which I imagine is completely normal for a 4 and 5 year old.

Adele is one week old today and we are all still adjusting.  My past of anxiety and depression puts me at high risk for postpartum, which I struggled with after both Stella and Hugo’s births.  I’ve definitely been weepy and emotional the last few days.  I’ve had several bouts of “how the heck are we going to balance all of this” breakdowns.  Thoughts of how active the boys are and how much energy they require and whether it’s humanly possible to keep up with the demands of this new dynamic with our careers and at our ages make me nervous.  So I’m being very gentle with myself.  Trying to sleep as much as I can (with the help of my awesome wife), and remind myself that these feelings are normal.

Adele has much darker hair than either Stella or Hugo, and looks like no one but herself which is comforting in some ways.  As our last baby (yes—-she’s it, promise (o;    ), I am working very hard to be present with her.  I have pretty much zero memories of Sam and Hugo at this age.  We were so grief stricken and moved around in a fog.  We had so many people around all the time to hold the babies.  So this go around I am taking the time to really try to enjoy the way her little body feels when she is sleeping on my chest.  I am taking note of the curve of her little nose and her little rosebud lips.  I am stroking her hair and trying to make a memory of how soft it is, and when I’m up with her at night I keep reminding myself that this stage doesn’t last forever and that someday—- we will sleep again.

Christie our midwife came for a visit a few days ago.  She asked how it was going and I unleashed on her a torrent of words about my insecurities and fears about balancing everything.  I said that the past weekend was hard having her and the boys at home, that I felt overwhelmed and Aimee and I couldn’t figure out how to keep on top of the grocery shopping and laundry and making lunches.  I felt tired and stressed.

Christie listened and gave some advice.  As she was putting her coat on to leave, she said, “it’s nice to have you talk about all these completely average and normal fears”.  She reminded me of how with the last two babies we had people dropping food off all the time, people volunteering to sleep over and do all the overnight shifts with the babies, people to take them out during the day.  Now it’s just us trying to figure it all out.  Her observations stopped me in my tracks and I had to laugh.

She is so right.  Instead of being worried about our dying daughter.  Instead of wondering how we were going to wake up and survive the next day weighed down with so much grief and confusion swirling around, our worries this time are the same as almost all new parents.  And we are trying to do it ourselves.  We need to do the grocery shopping, the laundry, the overnights, the caregiving.  We are a “normal” family.  It’s foreign in a way.  Although it’s our fourth child, we’ve actually never done this before.

This is one of the many, many times in my life when I am drawing on the experiences and lessons that Stella gave us.  To try to look at life in tiny chunks when looking at it for longer is too overwhelming.  When the years seem too long, focus on the month or the day or the hour or even the minute until it passes.  To try to find the joy in each and every day.  When I felt overwhelmed at having the boys and Adele home for dinner at the same time, because the boys were fighting and not listening and I needed to feed Adele, I remembered how lucky I am to have three healthy, energetic children.  Then I decided to stop struggling with them and just make it easy on myself, remembering that having ice cream for breakfast once in awhile doesn’t do any long term harm,  I turned on the TV and let the boys sit on the couch and watch it (which they normally aren’t allowed to do in the evenings).  They calmed right down and peace was restored.  When Aimee isn’t home and I can’t bring myself to cook, I make it okay to order pizza.  And I am allowing myself to look into Adele’s eyes and dream.  I’m allowing myself to picture a future with her and Sam and Hugo and try not to be afraid that it will all be taken away from us again.

As we navigate this new normal, as we adjust to this new stage in our lives, I know that Stella’s legacy will help guide me and continue to teach me.  And I will always find her smile in the smiles of her brothers and now, her sister.

Uncle Tristan reads Adele and Simon to Stella in August, 2012:

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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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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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STELLA – REMEMBERING YOU FROM GREAT WOLF LODGE! (By: Aimee Bruner)

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On this day, Stella, we’ve taken our heavy hearts, flip flops, damp bathing suits and all the junk food and caffeine we could ever wish for and we’ve headed to the water slides at Great Wolf Lodge.  We are here – remembering your smile from your favourite place on earth.  We are together, surrounded by love, screaming children and the smell of chlorine.  Today, we will go to the “club club”, swim in the hot pool and rip down the water slides, thinking of you with every step we take.  Being in this place that you loved so much is so familiar and comforting to me.  When I think of the last time that we were here with you, my heart breaks at the thought of you not being able to move.  We carried you everywhere and spent almost the entire time we were here in the hot pool.  You loved it.  In fact, if I allow myself to stay present in that memory – I can almost feel the grin on your face.  You smiled the whole time.  Whenever we asked you if you wanted to go here or go there, you made sure to stick that tongue out to let us know you approved.  I would give anything to be able to hold you in that hot pool again.  Right now, your brothers and cousin Gracie have taken off to your beloved “club club” with your mama and Auntie Andgie.  I couldn’t bring myself to leave the hotel room without writing you this note.

Xavier, Auntie Heather and Poppa will be here tonight to cerebrate Sam and Xavier’s 4th birthday and even though my heart aches without you here – part of me is so happy to be in this place, remembering you.  The sight and smell of the lobby, which is to most adults – completely offensive to the senses, gives me butterflies when I enter it.  The talking bear and moose, the over indulgent gift shop, and the howling wolf always manage to ignite a slow grin on my face.  I will never forget pacing the hallways, staring at the patterned carpet at 5am just to keep you occupied, when we brought you here for the first time.  You were so little.  I want to go back to that time.  I know we can’t though, so instead, I will put on my cold, damp bathing suit and head off to the water park – that place that made you smile more than anything else could.

I can’t believe it’s been three years today since you died in our arms.  We miss you everyday.

I love you big girl.

Mommy xoxo

A MESSAGE TO THE WORLD: DON’T FORGET TO CHOOSE JOY, EAT CHOCOLATE TIM BITS AND HAVE ICE CREAM FOR BREAKFAST TODAY!   STELLA SAYS – YOU’RE WORTH IT;)

Stella at Great Wolf Lodge, June 2012:

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Sam, Hugo and Gracie at Great Wolf Lodge:

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We visited Stella’s tree and left her some Hallowe’en treats:

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