Five Years

Download PDF

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:

IMG_1413

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

IMG_1405

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

IMG_1710 IMG_1654 IMG_1640 IMG_1637

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

IMG_1795

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

Week 43

 

Download PDF

Happy 7th Birthday Angel

Download PDF

Today, if things were different, Stella would have turned 7 years old.  Probably would have been missing a tooth or two.  With long hair past her shoulders, and a cheeky grin.

Not having her here hurts.

For some reason, this year the memories are sharper and clearer than they have been in years.  Each day leading up to her birthday is haunting.  April 15th was her due date.  I remember going swimming with my friend Deb that day.  I remember how amazing it felt to float in the weightlessness of the water with my 9-month pregnancy belly and how I was almost shaking with anticipation and excitement.  At that time we didn’t know if we were having a boy, or girl so I practiced writing both names we had carefully and lovingly selected on my notepad…

Evan Lawrence Bruner-Methven

Stella Joy Bruner-Methven

Which would it be?  I couldn’t imagine.

I remember on April 16th I was only one day past my due date, but I was despairing that I was never going to have this baby.  I had already been off work for 2 weeks and I was bored and impatient.  In a desperate attempt to entertain myself, I looked up recipes online of things that could be frozen and I decided to walk over to Sobey’s to purchase some ingredients.  I bought green peppers and ground beef and when I was walking home, I could feel liquid dripping down my legs.  I called my midwife and she told me to come in.  2 hours later I called Aimee at work and said the magic words…”my water broke”.  I still wasn’t in labour though, so Aim and I went to her dads for dinner.  We toasted each other with glasses of red wine and thought about what was to come.

April 17th I very slowly started to labour.  At first it was almost comical.  I sat in a big chair and listened to my “Hypnobirthing” CD.  The tiny insignificant first ripples of labour I thought were “it” and was proud of how I was handling the “pain”.  Ha!  First time ignorance.  Aimee and I walked and timed contractions, but it was slow going and everything that felt like it was “true” labour wasn’t really.  When you’ve never been in labour, I guess you don’t really know what it is.  Hours and hours of small tugs weren’t labour.  When full labour finally hit me, it was ugly and I wondered how I could ever have thought when I was sitting in the chair with my eyes closed meditating that I was in labour!!!  Real labour was horrible.  Back pain that brought me to my knees.  Thrashing and screaming and vomiting.  It wasn’t until almost midnight on the 17th that things got bad enough to go to the hospital.  My dad drove, my mom sat in the front seat and Aimee was in the back with me.  It was on that van ride that I realized Stella was gong to be born on my birthday.  I couldn’t think of a better way to ring in my 30th birthday than giving birth to our baby.

It was a long, difficult and extremely painful labour.  Stella was born at 4:10pm on April 18th.  I think Aimee said, “it’s a girl!” and though my heart was full of joy, all I could say was, “I’m going to throw up” and I promptly began vomiting as the midwife stitched me up.  Not exactly a Hallmark moment, but fairly indicative of what parenting is like.  Messy and hard.  Not very glamorous, full of ups and downs.  But, if you pay attention, a myriad of exquisite, unexpected gifts.

That was an amazing day.  I turned 30 years old and became a mother all in one breath.  My daughter burst into the world, with porcelain skin, bawling-face, fists waving and a shock of red hair that made everyone laugh in delight.  There were 10 people in the room as she was born.  Two midwives plus my DeeDee, Poppa, Auntie Heather, Tutu, GrandPa, Auntie Angie, Nanny and Aim’s best friend, Ray.  Sometimes when I picture that happy scene of her birth and her first breath, it overlays a heart-breaking scene 3 1/2 years later when she took her last breath, surrounded by almost exactly the same group of people that stood in a circle and witnessed the miracle of her birth.

Sometimes it feels like all my memories overlap.

A sea of crying faces at her birth.  A circle of sobbing at her death.

Choosing the outfit she would come home from the hospital in.  Choosing the outfit she would be cremated in.

A myriad of candles lighting up the night at our wedding. A path of flickering candles as we carried her body out the door.

Taking photos of her face covered in icing, eating her birthday cake with a “1” flopped over. Taking photos of a tree in the park with a candle that says “7” on it.

Up at night because she cried. Up at night because we cry.

So how do you celebrate the birthday of your first born, when she’s not here?  Funny how we’ve fallen into a routine.  Visit her tree then run away to Great Wolf Lodge.  As always, a mixture of wanting to remember her in her favourite spots, but also needing to try to forget by distracting ourselves with the noise and activity and complete sensory overload.  I have been missing her so much these last weeks.  I always miss her, but I find that as the boys get older and more “boy-like” with burgeoning interests in super heroes and sports, I retreat further into my fantasies of having a daughter.  That’s one of the cruelties of her death, not knowing exactly what she would have been like, what she would have liked or disliked, leaving it all open to speculation and dreams.  And suddenly, I’m seeing little girls everywhere and each one is like a dagger to my heart.  I’m sure there are just as many little boys around, but it’s the girls that have been making my chest hurt.  I suddenly feel like everyone around me has a daughter.  Two nights ago I started to rattle off to Aimee the names of all of our friends and said, “they have a daughter…they have a daughter…they have a daughter…”.  Out of 15 friends I named, only two had no girls.  It suddenly felt momentously unfair to me.  I suddenly felt so jealous that I wanted to scream and rage.  Admitting these feelings is hard.  I don’t like the way they make me feel.  it’s embarrassing.  I confided in one friend a few weeks ago that I wanted my girl back and she said something along the lines of, “But you have two beautiful and healthy boys!”  I immediately felt ashamed of myself for saying anything at all, then angry that I was ashamed.  Having two healthy boys whom I love with all my heart and would do anything for, doesn’t mean that I still can’t mourn the daughter who died, and the fact that I no longer have a little girl to love.  But it’s hard to admit that to people.  Hard to make them understand.  Of course I’m grateful for my sons.  Of course I am happy with them and can’t imagine life without them.  But that doesn’t mean I still don’t miss my girl and feel bitter for everything that was taken away from us.  It doesn’t mean that I don’t feel sad when I see little dresses with crinoline and pink Dora crocs or that I’m not jealous of the little girls in mini blue jeans and pink sunglasses toddling around at the park.  Grief is complex and I’m constantly trying to understand why I act and react certain ways to things.

A family that I served 8 months ago called me Friday.  The woman had lost her father at age 87.  She called to tell me how much she was struggling.  That she was “still” so sad.  She knows about Stella and said that she didn’t know how I did it.  That I’m so strong.  She kept saying that she wouldn’t be able to live if her daughter died.  And that she was embarrassed to still be in such a funk about her dad because, after all, he was old and led a full life. She asked me what my secret was.  I told her my dad always says, “secret weapon…no choice”,  but I also didn’t want her to think that I’ve just risen above grief and grieving.  So I told her the truth.  I said, “What you’re doing is hard.  There’s no timeline.  There’s no magic cure.  I’m on meds.  I take medication everyday for depression and anxiety”. I wanted her to know that even though I’m happy, I still need help.   I’m not ashamed of it.  When I wake up each and every morning, I make a deliberate choice.   I choose to be happy.  I choose to find JOY because I know that is how I can keep Stella alive.  I truly believe that when we are forced to live without someone we love, we need to take a small piece of them and inhale it so deeply it enters our pores and becomes part of our own breath and body.  So I breathe Stella each and everyday.  I breathe her spunkiness.  I breathe her willingness to find joy in small things.  I breathe her inability to be anything but herself.  I breathe her bravery and her cheekiness and her tinkling giggle.  I use the breath I have to parent her brothers with as much understanding and love as I can.  I use it to help the families I serve.  I open my heart a teeny tiny bit to each and every grieving family that sits in front of me and tells me that they have lost someone they love.  I still hurt, but I choose to live.  I keep a yellowed cut out picture of a card I got once.  It’s a dry, dessert scene with a tiny flower growing through the cracked dirt.  And it says, “There are defining moments in a life, when faced with the choice of giving up, or going on”.

That card is taped on the inside of our kitchen cupboard.  Every morning when I get up and I open the cupboard to get my teacup out, I read it.  And I make the choice.

IMG_1307

Choose life.  Choose joy.

In Niagara Falls tonight, Gracie (8 years old already!) wore her Mommy Juju’s wedding dress to dinner.  She looked so beautiful and grown up in it.  It’s a burgundy and cream sundress.  It made me remember my wedding to Aimee.  I remembered the poem that was read that night, 10 years ago this August.  It was a warm summer night.  We had lit the backyard with dozens of flickering candles.  At the time, it was the poem that best reflected the love Aimee and I felt for each other.  But tonight, I thought about the fact that it is for Stella too.  And I read it out loud and wept.

Happy Birthday my beautiful girl.  Despite everything…I’m so glad you were born.  Stella Joy Bruner Methven, April 18, 2009.

i carry your heart with me

ee cummins

i carry your heart with me (i carry it in

my heart) i am never without it (anywhere

i go you go, my dear; and whatever is done

by only me is your doing, my darling)

                                  i fear

no fate (for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than the soul can hope or mind can hide)

and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

And I do.

IMG_5979

Sam lays some flowers at his sister’s tree for her birthday:

IMG_5848

Having a great time at Great Wolf Lodge 

IMG_1306

IMG_5973-2

IMG_5944

Every Friday night is pizza night and “Family Movie Night”.  The boys love it! (Xavier, Sam, Hugo)

IMG_5791

Download PDF

5:18am

Download PDF

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:

IMG_1133 IMG_1079 IMG_1112 IMG_1164 IMG_1167 IMG_1170

Remember when. June 2011:

DSC00945

Download PDF

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

Download PDF

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:

IMG_0023

IMG_0278

Sam, Hugo and Gracie at Great Wolf Lodge:

photo 3

photo 2

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

photo 1

Download PDF

The Pain of Wisdom

Download PDF

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

But oh my God, I miss her.

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

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

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

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

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

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

Love you always baby girl.

A little ice cream at the zoo for Stella:

IMG_0902

Change of Season…fall for Sam & Hugo:

IMG_0923

IMG_0922

Letter to Stella from cousin Gracie:

photo

At the Pumpkin Patch:

IMG_0951

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

SONY DSC

Download PDF