Music To My Ears

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Parents whose children have died have to think about and overcome small daily struggles that other people never have to think about, or even pretend to understand.

For example, when I go on the Toronto Community Centre websites to register the boys up for swimming, I need to select from a drop-down list the child that I’m trying to sign up.  Next to Stella’s name is a note that says Stella Bruner-Methven: INACTIVE.  I asked them if they could just remove her name from the list, but they’re insistent that they can’t (which is total bullshit but you try getting someone who works for the City of Toronto to listen to you), so now each time I’m on the system I have to scroll past my daughter’s name and that horrible note until I get to Sam or Hugo’s name.  It makes my eyes prickle with tears every single time.  She is not “INACTIVE”  I bluster to myself.  She is DEAD.

And when I called the Canada Revenue Agency just after Stella died to tell them of her death so that they would stop sending the $100/month “baby bonus” you get here in Canada for each child, they advised me sternly that I owed them $100.  Why?  Because the October baby bonus for Stella had already been deposited into my account, but she died October 22nd, before the end of the month.  So I shouldn’t have gotten that $100 for October and needed to give it back.  “If she had lived to October 31st, you could have kept it,” the woman on the phone helpfully explained to me.  “Oh, and you will also see a reduction in your GST cheques because you’re going from 3 children to 2”.  Thanks, Canadian Government.

In the last two months we have gotten phone calls from daycares that we put Stella’s name on the lists for years ago.  Once in awhile, we still get chirpy messages saying, “This is Dandelion Daycare.  We just wanted to let you know that we have a spot for Stella.  Please call us to let us know if she is able to start on Monday March 25th…”  Aimee is the one who always calls back.  In case there was any doubt, she is a much nicer person than me.  She always just politely says that we are no longer in need of the spot, and leaves it at that.  If I were to call back I would tell them why.  I would say, “You can take us off your list because Stella DIED last year”.  I would want to shock them, to jolt them out of their sleepiness about the harsh reality of life and the fact that the little girl I hopefully and excitedly put on their stupid lists 4 years ago is gone now.  I want them to whisper about it in the staff room, and think about it and want to know more about the little girl that could have been there, but isn’t.  However, I am well aware it’s mean and pointless and petty, so I let Aimee make the calls.

Each birthday party invitation for Aimee and I needs to be weighed and measured and discussed for days as we lay in the bed our daughter died in.  Who is it for?  How old are they turning?  What types of feelings does the party bring up?  Jealousy? Anger? Sadness? Bitterness? Joy? Hope? Celebration?  We bat words back and forth like a tennis ball until we come to a decision about it.  We always have good intentions, but sometimes we just can’t take the final steps out the door and go to the party we had RSVPd for.

A dash to the supermarket for milk becomes an exercise in grief as I hurry past the inviting piles of green avocados that Stella used to shop with me for.  A trip to the attic to bring down an extra blanket fills my heart with heaviness as I see the line of boxes in the corner neatly labeled “Stella’s Room”, “Stella’s Memory Box”, “Stella’s Funeral”.  A walk to the library past giggling 5-year old girls in pink jackets and jaunty winter hats makes my chest burn.  You go on living your life, even loving your life, but the grief is always there, just beneath the surface, ready to burst through at any moment with its heavy, hot lava of pain.

Even happy moments have a twist of sadness to them.  Aimee had always fantasized about Stella joining soccer, but she never got the chance.  She was supposed to join up in the fall, but was diagnosed at the beginning of summer and by fall she couldn’t walk anymore.  So, this time, as soon as Sam and Hugo were old enough, we signed them up.  Even though it’s expensive and they are really still babies, we have waited a long time to see one of our kids in a soccer shirt so we love taking them.  You should see Sam and Hugo and Xavier all running around a gym in these tiny soccer uniforms… it’s just about the cutest thing ever!  No matter that most of the time it’s like herding cats trying to get them to do anything they’re supposed to, it is a joy to watch and experience.  But it’s sad too, of course, because we are all thinking about Stella and how she should have been there too.

After soccer yesterday, Aimee and I took the boys home and Gracie was with us as well while Auntie Angie volunteered with Baby Stephanie (she is going to write an update about baby Stephanie for you all soon!!!).  The three kids literally destroyed our house playing in it.  I’m surprised no one broke a bone they were so energized and excited.  They adore each other, and it’s fun to see them playing together even though my throat is in my heart most of the time as they leap from high heights and careen screaming through the halls narrowly missing furniture corners as they run by.

After Gracie went home and dinner was over, Aimee took the boys downstairs so I could make a weak attempt to put the house back together after a long weekend of chaos and activity.  I thought rather grumpily about how pointless it is to have nice things when you have young children.  The house we had painted a year ago is already in need of painting again— there are scuff marks and chips and dirt and crayon marks all over the place.  The nicely recovered couch is used daily by the boys as a trampoline.  They throw pillows on the ground and drool and pee and spread crumbs all over it.  Dishes from our matching set have been broken.  The tiny iron angel we got from Aimee’s Nana’s house when she died had its wing broken off on Friday when Sam threw it.  Photographs in frames are knocked over constantly.  We have about 6 broken frames laying around waiting to be repaired.  There are dried cheerios in the sink, piles of laundry that we just can’t seem to get under control and a fridge that could be a science experiment.  There is stuff everywhere.  It’s overwhelming.  It’s not that I need things to be pristine or totally clean and organized, but it’s also disheartening to constantly be putting a million tiny pieces of toys away only to have the bins dumped back out moments later and toys strewn around in every crack and crevice within seconds.  So, I took a deep breath and started to tidy up a bit, just enough so I felt like I had a tiny bit of control over my environment.

After picking up by hand tiny grains of rice from between the floorboards and stacking books on top of more books in the living room, I stood at the sink washing pots.  As the warm soapy water poured over my hands and I sighed thinking about ll the work left to do, I heard Aimee singing loudly in the basement.  I cocked my head slightly to the side to see if I was hearing what I thought I did.  And I smiled.

Aimee was playing guitar for Sam and Hugo.

She used to play guitar for Stella all the time, and so did our friend Brad, but since Stella died there has mostly been silence where the music used to be.  It was too sad to hear her favourite songs and remember her crooked smile and the way she danced with her arms waving and head bobbing.  I put the pot down, wiped my hands on the tea towel and headed downstairs.  As I walked into the basement, I saw Aimee standing in front of the boys with her guitar strumming and making up words to a silly song while they danced.  Sam strummed Stella’s old ukulele and Hugo was going between a maraca and bells, shaking and shimmying.  They both danced comical little dances, rocking their hips back and forth.  I laughed out loud to see how alive and happy my family was.  I grabbed the camera and tried to capture the moment, but it wasn’t really possible.  Photographs are amazing for certain things, but I’m not convinced they can fully capture off-the-cuff moments of silliness and love.  After a couple of shots, I put the camera down and joined my family.  We danced and played music until past the boys bedtime.

The dishes would wait until later.  The laundry would wait until later.  The music was here, and it was making me laugh and making my heart sing.  And Stella’s watchful eyes from the photograph on the wall, twinkled down at us.  I realized that my life is not perfect, and never will be.  But it is mine and I treasure it.

As I picked up Hugo and spun him in a twirl with me, I remembered one of my favourite sayings about how if you did not know true sorrow, you would not recognize true joy.  So while I would never go so far as to say I am grateful for Stella’s death, I am grateful for her life.  And I am lucky to have experienced gut-wrenching, terrible pain and sadness because now, when the music is happening, I can hear it clearly.

Last Night’s Impromptu Dance Party:

IMG_0886Hugo Beckham plays soccer:

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Gracie and Sam playing some odd game they invented that required face masks:

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Hugging brothers:

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Colouring Brothers:

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Winter trip to Jungle Cat World (photos by Kenneth Tinnish):

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Beauty in an Endless Winter

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There is a stillness tonight that I haven’ t experienced in a long time.

Maybe it’s because Toronto is under the siege of (yet another) winter snowfall, which is muffling the noise of the city.  Maybe it is because Aimee is away on a trip with her dad and sister, so I am alone in the house with the boys.  Maybe it’s because it’s late, the kids are sleeping and the TV and lights are off.  I don’t mind quiet, but stillness makes me uneasy. Stillness allows the tears I hide and the sadness I swallow to shuffle to the surface, and gives space for memories of life “before” to try to make themselves known.  But I don’t want to go there.  I won’t.  I still can’t look at videos of Stella, or too many photos.  I can’t allow myself to remember the day she was diagnosed, or the day she died.  I consciously keep my thoughts and memories positive and as un-specific as possible.  It is how I am able to live right now.  Not denial about what happened and how it happened because that would negate the beautiful lessons she taught me, but more deliberate control over what I will think about in order to stop from sliding too far into the dark hole of depression and anxiety. I promised myself that when Stella died I would integrate her qualities into myself, so that I would never lose her.  That’s how I choose to honor her nowadays.  Not by remembering, but by forgetting.  Not forgetting her, but by forgetting all the parts of her diagnosis and illness that were horrible and sad and difficult.  I choose to focus on her laugh and her Spirit and remember her small, soft hands, nails painted all the colours of the rainbow, holding onto mine.

This month, as I brace myself before stepping outside into the winter storms, I’ve been feeling like grieving is one big, long season of freezing winds, snowdrifts and slippery patches of ice.

But sometimes, when you least expect it you can find beauty in the winter.  So, in the cold stillness and silence of tonight, I am also thinking about Baby Stephanie.  Thank-you to everyone who read Auntie Angie’s posting about this special little girl. (LIN HERE).  Sincere thanks to those who shared it, who gave what they could, who spread the word and who took the time to learn about this precious baby whose time on this Earth will be short, but meaningful and important.  Because of the generosity of strangers, Stephanie’s mom Cherry will be able to stay home with Stephanie for a little while longer.  When your life is lived in weeks, not decades, even two months is an amazing amount of time.  Like Stella, Stephanie is a precious gift who reminds us to take nothing for granted, to live one day at a time and to celebrate every single tiny moment in life.  I was so grateful for Auntie Angie’s posting about Stephanie; for the reminder during this endless winter of grieving that there is incredibly good people in this world who care about complete strangers, and for the reminder to tackle the problems of just one day and stop asking the “when-why-how” questions that were so prevalent when Stella was alive.  I’m grateful for Stephanie and her beautiful love story, because I was beginning to feel stale in this month of February.   Beginning to slip back into the dark place of not wanting to do anything anymore because it is too hard.  Because I miss Stella too much.

Because I just don’t belong any longer.

It’s the one thing that I still struggle with, even after all these months of being mother to a dying—and now dead—child.  I just don’t fit into the world.  This society that we live in is built completely on the idea of Justice.  Right from the time of Plato, Justice has been described as the first virtue of social institutions; the foundation on which society is built.  It is a universal concept built on the rudimentary law of physics that for every action, there is an equal and opposite reaction.  But what happened to Aimee and Stella and I was completely unjust.  So how am I supposed to live by the rules and societal norms of a world that betrayed me such in a horrible way?  As much as I am trying to be “normal”, I just can’t stand to hear people complain about things like traffic and coffee and the fact they can’t afford new jeans.  I try so hard to socialize at school and laugh as freely and openly as everyone else, but sometimes I just can’t do it.  Sometimes I actually feel sorry for the people who haven’t experienced a loss like I have, because they are living their lives in a cloud of ignorance about what really matters in life.  It’s so crazy to admit that— the fact that I pity the people who haven’t experienced difficulties in their life, but I do.  Even though it’s incredibly hard, I believe that my life is better for having loved- and lost- Stella.

Most of the people I am meeting nowadays are destined to be acquaintances and not friends.  I don’t think I’ve made one single “best” friend since Stella died, because I don’t know how to interact with someone who didn’t live through that with me.  I know that someday I will have to expand my Horizons, but it’s so damn exhausting to pretend sometimes and I know with the friends and family that traveled the pathway of DIPG with us, I don’t have to make excuses or pretend anything.  I have the best friends in the entire world.  Friends who instead of running away when Stella was diagnosed, ran towards us and enveloped us in love and support.  They never once turned their backs on us, and I am forever grateful.  But at the same time, these friendships come at an emotional cost to me.  There is nothing anyone can do about the fact that Stella’s friends lived, and she died. But each time there is a new milestone for her peers to celebrate, it is a painful reminder that my little girl is not here anymore.  I am still invited to social events, which I am grateful for, but I often can’t join.  A skating party would be okay if I had an almost 5-year old, but a 1 and 2 year old don’t work at an ice rink.  Discussions about French Immersion and learning to read and sleepovers and birthday parties make my heart hurt.  To the 4 and 5 year olds, my boys are still babies.  They just don’t have that much in common yet.  But there is truly nothing to be done about it.  My friends and their children cannot—and should not— stop sharing their lives with me, and I adore them all, so it is a matter of working through the pain when it comes, knowing that the ultimate result (incredible friendships), is worth it.

In so many ways, this long and hard winter is reminiscent of grief.  I’ve learned the trick is to let go and embrace the coldness.

The tree outside our window is full of naked branches…bare, dead-looking in the coldness of the night. But , in reality, the tree is not empty and devoid of life if you look closely enough.  It is actually covered with beautiful ice that sparkles and shines under the streetlights.

And maybe that’s what grief really is…finding beauty in the beast of a long, cold winter. IMG_5803

Xavier and Hugo splash in the winter slush at Riverdale Farm:

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Poppa and the boys have breakfast at McDonalds:

IMG_6199Looking at butterflies at the Butterfly Conservatory in Cambridge:

IMG_6246Hugo and Tutu’s dog, Buddy:

IMG_6118Sam at swimming lessons:

IMG_6247Hugo and Sam have evening cuddles:

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Stella loved every day of her life…even the snow days! February 2012:

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Heartache

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HEARTACHE

They call it heartache because your heart really does hurt.  I’ve found it so interesting that grief and mourning is such a physical process.  Of course your mind is constantly churning out messages to you, but it’s my body that often gives up at the end of the day.  My brain throbs from working so hard to not think about Stella every second as I go through the motions of life.  My heart aches from missing her so much.  My throat hurts from swallowing tears and pain hour after hour.  My shoulders and neck burn from carrying all the stress around.  My arms and legs seize from the sheer effort of forcing them to keep mechanically moving when I just want to curl into a ball and disappear.

I hurt all the time.  Sometimes it’s intense and overwhelming pain, but most often it’s just a dull ache that niggles at me, always constant, always there to remind me that my daughter died and nothing will ever be the same.

Did you know May is National Brain Tumor Awareness Month?  I didn’t know either.  It’s not a pretty or popular cause, and likely the only people who really know about it or participate are those who have been touched by it.  I certainly never knew that “grey ribbons” existed, or meant anything.  But now I do.  I’m part of a small minority of people who know about brain tumors, and an even smaller group who know about watching their child die.

Thankfully for most people, their children won’t die before them.  It’s one of those “worst nightmare” things that we all hear about happening to “other people”.  You listen to a story about someone whose child died and shake your head, saying, “Ugh.  That’s awful”.  But you don’t really feel any emotion when you say it because it’s so far removed from you.  Then you get to go on with your life.  That’s how it should be. That’s how it used to be for me.  Now when I hear about a child dying, my whole body shrinks with the agony of knowing another family is having to deal with the overwhelming reality of losing their most precious treasure.

So, in honour of brain tumor awareness month, let me tell you a little bit about what it means to lose your child, in my experience.

Losing your child upsets the natural order of the universe.  It’s investing all the time, energy and effort into pregnancy, birth, parenting books, tantrums, the alphabet, kisses, good night cuddles, bath time, laughter and then being left with an empty bedroom where your child once slept, neatly folded clothing that your child once wore and dust covered toys that your child once brought to life.

Losing your child is spending hours looking at the finite amount of photos and videos you have of them, trying to remember each angle of their face and the sound of their laughter.  It’s closing your eyes and forcing yourself to remember how it was before because thinking about how it is now hurt too much.

Losing your child means learning to laugh even when it sounds hollow, learning to keep moving when your whole body wants to shut down, learning to push through the pain and hurt and exhaustion because everyone keeps telling you that time will heal, even though time just passes.

Losing your child means never knowing when you will be overcome with raw grief that shudders through your veins and emerges in an explosion of silent screams and hot tears.

Losing your child is cradling a cold, lifeless body in your arms and trying to reconcile your brain’s memory of an energetic, laughing, smiling human being with this shrunken bruised waif that stares at you with unseeing eyes and slack  jaw.

Losing your child is handing over their body to a stranger to take to the morgue, then getting back a tiny, cold box that holds grey, dull ashes.  All that’s left of your beautiful baby.

Losing your child is packing away their things into boxes that you don’t know what to do with, clutching the stained clothing to your chest hoping it will soothe the stabbing pain in your heart, desperate to catch a small hint of the smell of their skin buried somewhere in the folds of the fabric.

Losing your child is showing great restraint when people tell you to be grateful for the children you have left, or say “you can always have another one”, as if your child is replaceable.

Losing your child is forever grappling with feelings of guilt and regret.  No matter what anyone tells you, your mind won’t let you think that there wasn’t something you did wrong that caused your child to die.  Diet while pregnant? Using a non microwaveable dish? A flame-retardant mattress in the crib?  There is no end to the crazy, inane and far-fetched reasons you will come up with to torture yourself.

Losing your child is being forced to watch people whom you love very much live out the dreams you had for your own child, and fighting a fresh wave of grief each time their child reaches a milestone that your child won’t.

Losing your child is being shut out of the play groups you planned on attending, because you don’t have a child that age any longer.  It’s skipping social events and birthday parties because you don’t want to put a damper on the party by bursting into tears at an inopportune time.

Losing your child means losing the friends and family members who aren’t able or willing to give you what you need.  It means accepting that you are changed and having to let go of a lot of people that you care for very much because you can’t bear to be around them and their lack of understanding.

Losing your child means separating the years you have lived into two different worlds, the “before” and “after”.  They don’t always match up, they don’t always reconcile themselves, and it can be difficult to remember what it was like to be blessedly ignorant about the cruelty of a world that betrayed you so badly.

Losing your child is forever losing a part of yourself.

Sometimes late at night when I can finally hear myself think, I remember all my favourite “Stella Stories”.  It frustrates me that I only have a few dozen to sift through and remember.  Today I will share one of my precious memories with you.

When Stella was two I picked her up from daycare.  As happened on many days, the daycare teacher walked over to me to talk about Stella’s day (by this time I knew enough that if they make the effort to do more than wave goodbye and smile, it’s not usually good news).  “Stella had a difficult day,” I was told.  “She was doing a lot of hitting.  I think she needs to be spoken to about it”.  I looked at Stella who was happily sitting on the stool by her cubby, swinging her legs and smiling up at me.  “Stella,” I said sternly, “it’s not nice to hit your friends”.

“But Mama,” she explained, stretching her arms out as far as she could, “I hit all, all, ALL my friends!!!”  With a big smile she hopped off the bench for a hug.  I remember trying to stifle a laugh as I buried my face in her curls.

If there was one thing Stella was, it was fair.  But what happened to her wasn’t.

Picnic at Stella’s beloved farm with Sam, Kari, Hugo, Xavier and Arin (behind Stella’s bench):

Sam has been introduced (by Poppa, of course) to Stella’s favourite…the ice cream truck!

Xavier, Sam and Hugo play in the backyard:


Stella visited the farm in March, 2012:


 

 

 

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Monday Monday- Can’t Trust That Day

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“Monday, Monday. Can’t Trust That Day”

– Mamas and Papas

 

It’s not that, five months after Stella’s death, I think that I’m “fine”.  Far from it.  But I do believe that I’ve been lulled into a sense of existing recently.  I miss Stella everyday, but Aimee and I are busy and so we continue to live full lives.  She is working, I look after Hugo and get Sam off to daycare, go to school, deal with the laundry and dishes and shopping, etc.  We have dinners with friends, playdates, trips to the library and farm.  Living without Stella hurts, but it’s often a numb type of hurt.  A heartache that just won’t go away, so you learn to live with it.  You learn to not shed your tears around people because it makes them uncomfortable, learn to laugh even though it feels hollow to your ears and learn to look forwards instead of backwards because life is pushing you that way no matter how much you fight it.

 

So we are doing it.  Picking up and moving forward with our lives and our dreams and hopes for the future.  Sometimes I am caught in a moment where my brain begins its repetitive song, “My daughter died.  My beautiful, lively, curly-haired, funny daughter is gone from me forever.   How did this happen?  Where is my Stella?  Whose life am I living?”

 

It’s only been 5 months, but so many weeks and holidays and moments have passed without her already that the sadness just feels normal.  So, last week, when Sam threw up on the weekend and so did Hugo, it didn’t really register as too big of a deal.  Chalking it up to a stomach virus, and waiting with baited breath to see when Aimee and I would be struck down with it, we shrugged it off.

 

Sam recovered quickly, but days later Hugo continued to vomit off and on and then spiked a fever.  After a couple of days of waiting for it to go away on its own, we began talking about if we should take him into the Doctor.  I’m always a lot more reluctant to take kids into the Doctor’s office than Aimee is.  All I can think about is how kids get small and minor ailments all the time that generally go away on their own with a bit of Tylenol, how difficult it is to keep them occupied as you wait for the Doctor, how miserable they and you become as they are poked and prodded.  It’s such a chore.  But Monday night, “Monday, Monday” after several days of Hugo showing no improvement and his chubby cheeks starting to hollow out a bit, I relented and with a huge sigh Aimee and I packed him into the minivan and drove him to a local walk-in clinic.

 

The Doctor who finally saw us had very broken English; so many of the words that he spoke were completely lost on Aimee and I.  But a few of them registered.  My brain heard, “fever”-“too high”-“emergency room”-“if meningitis not a second to lose”-“too high now”-“very sick”.  I swallowed and tried to clarify what he was saying to us.  “Do you mean we should take him to Sick Kids emergency right now?” I asked, my mouth dry.  He looked at me and shrugged, “sure”.  Sure.  Sure????  Didn’t this man know that the last time I took one of my children into Sick Kids Emergency, I was told she was going to die!!!!!!???  Of course he didn’t know.  As the Doctor’s words registered with me, I felt the ice cold blanket of raw fear envelop my body.  I began to tremble and hot tears collected behind my eyelids.  The Doctor looked at me, probably thinking I was a lunatic over-reacting mom, and said “sorry to worry you but he very sick.  Fever too high”.  I nodded, not trusting myself to speak as I was afraid I would scream all the hysterical screams I’ve been swallowing for the last two years.

 

Aimee and I grabbed our baby boy and literally ran out of the Doctor’s office, both of us lost in nightmares of the past.  I was nauseous and dizzy.  I was crying, panic-stricken, frenzied.  I felt so helpless and frustrated.  I just couldn’t understand why we could never do anything for our sick children.  What if something happened to Hugo?  What if he died?  I couldn’t stop my brain from jumping to horrible conclusions.  I cried and blubbered in the van as we raced towards home struck anew with how helpless we are as parents to do anything for our children if they are hurt or sick.

 

In that moment, I knew that I couldn’t go back to Sick Kids.  Couldn’t go back to the same emergency room we had sat in with Stella, watching TV and impatiently waiting for Doctors, worried about getting back to work and expecting them to tell us we just needed to get some antibiotics for her ear infection so we could go home.

 

Aimee was upset too, but because I was in such rough shape she took on the “strong” role.  We always seem to be able to balance out when one of us is feeling sad or overwhelmed.  She offered to go to Sick Kids and called her father to go with them.  I was tortured.  I was so upset and felt so guilty that I couldn’t be there with my sick baby, couldn’t take him to the hospital to get the help he needed.  But I was totally paralyzed with the fear and horror of “what if’s”.  But the guilt of not being able to look after Hugo when he needed me ate me up inside, twisting and tearing my insides, a storm of horror.

 

At home, Aimee quickly packed up a diaper bag and waited for her dad to pick her and Hugo up.  I called my sister and told her the update.  She came right over, and both of us sat together in the bathroom crying.  My dad came running over as well when he got the news, and though he was his usual calm self on the outside, I saw fear in his eyes as well.  We were a mess.  All lost in our own thoughts of Stella and Sick Kids and life and death.

 

Aimee left with her dad and Auntie Angie rushed to Sick Kids to meet them.  We all huddled and worried and waited.  I wandered around the house like a ghost, tortured that I was at home and wanting so badly to be with Hugo and Aimee, but literally paralyzed by my fear.  Sam was running around but I couldn’t even put him to bed because I was so incapable of functioning.  He was eating pizza with my dad and Heather and Daniel and Xavier and I at 10:30 at night.

 

Finally, after taking some of my anti-anxiety medications and getting Sam to bed, I crawled onto the couch and my dad held me as we watched the old black and white Marilyn Monroe film, “Some Like it Hot”.  I was beyond exhausted, but sleep wouldn’t come.  Hugo-Stella-Sam kept tumbling through my head.  I began to wonder why Aimee and I had chosen to have children when we couldn’t keep them safe.  Couldn’t keep them healthy.  I was so defeated.

 

At around 1am Aimee called to tell me that they had determined Hugo had a bladder/UTI infection and with a course of antibiotics he would be fine in a few days.  They were on their way home.  The relief that washed over my body was palpatable as some of the tension snaking through my every muscle released.  Within 15 minutes I was sound asleep, trapped in a dreamless black hole of fear, guilt, sadness and relief.

 

Aimee told me later that being at Sick Kids with Angie and her dad was very triggering and difficult for her.  That every second her mind was reliving being there with Stella.  The gift shop.  The waiting room.  The smells and sounds.  She said it was awful.  She said she didn’t think I would ever be able to go back there.  She doesn’t know if she can ever go back either.  She has been crying more often and reliving it over and over again.

 

Hugo has perked up considerably since Monday, and life has begun to pick up its regular pace again. 

 

But Monday reminded me how scarred I still am— how scarred we all are.  My entire family is so traumatized by what happened to our Stella.  Each of us gets up in the morning and goes to work or school or out with friends and we all make small talk and smile and tell people how grateful we are to have Hugo and Sam.  And it’s not a lie.  We are living genuine lives. But just underneath the surface, not even a millimeter away, are gaping, raw, bleeding scars that crisscross every piece of us and are revealed easily with a simple glance at a butterfly, the light of a birthday candle, the sound of a giggle, or even a baby’s fever.

 

I often tell people not to be fooled by appearances, that despite what they see, we are not okay.  But in this case, I really feel like I fooled myself.  I got so busy with school and the boys and my friends that I pushed the hurt and fear away.  But on Monday it all came rushing back and I remembered anew how tender the wounds of losing Stella still are and how far we have to go. 

 

“On Pain”

 

“Your pain is the breaking of the shell that encloses

your understanding.

 

Even as the stone of the fruit must break, that its

heart may stand in the sun, so must you know pain.

 

And could you keep your heart in wonder at the

daily miracles of your life, your pain would not seem

less wondrous than your joy;

 

And you would accept the seasons of your heart,

even as you have always accepted the seasons that

pass over your fields.

And you would watch with serenity through the

winters of your grief.

 

Much of your pain is self-chosen.

It is the bitter potion by which the physician within

you heals your sick self.

 

Therefore trust the physician, and drink his remedy

in silence and tranquillity:

 

For his hand, though heavy and hard, is guided by

the tender hand of the Unseen,

 

And the cup he brings, though it burn your lips, has

been fashioned of the clay which the Potter has

moistened with His own sacred tears.”

 

– Kahlil Gibran, “The Prophet- On Pain”

Daniel, Xavier and Sam eat pizza at 10:30pm on Monday


Xavier at the park:


Hugo is all better!


Spring picnic with Kari:


Miss you, Stellie:


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Time Heals

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Time Will Heal

 

“Time will heal”

Time doesn’t heal.  Time takes Stella both further and farther away from me.  Maybe time numbs, but it doesn’t heal.  Nothing will ever heal me and time is not the answer.

 

“At least you have your sons”

My sons are not Stella.  It doesn’t matter if I had 100 children, none of them would be Stella.  I love them but they don’t make up for losing my daughter.  They are not comparable.

 

“She’s in a better place now”

A better place?  What place could possibly be better than here, in my arms, surrounded by all the people who love her most in the world.

 

“You need a vacation”

You don’t understand.  There is no “vacation”.  There is never a break from the intense pain that comes with every breath.  It doesn’t matter if I’m lying in bed, or lying on a beach, I can’t get away from the grief.

 

“Why don’t you go for a nice, long walk?”

Because when I go for walks, I see three year old girls everywhere.  They skip down the street, curls bouncing merrily on their shoulders as they chatter incessantly to their mothers.

 

“Have you tried a change of scenery?”

It doesn’t matter where I go.  There are avocados at every grocery store.  There is a Tim Horton’s on every corner.  The stores have racks of brightly-coloured dresses and shelves full of Dora The Explorer running shoes.  There are cupcakes and ice cream and poppies and butterflies and stars dotting every corner of this earth.

 

 “She lived a full life.  At least you had her for three years”

Is three years enough?  Is thirty?  Is three hundred?  It doesn’t matter how long we had her for, how happy her life was, there is no good time for your child to die.  There is no way you can tell me that in three years Stella accomplished everything she could have.  Her life should have been so much fuller, so much longer.

 

“You’re so lucky to have such a close-knit and supportive group of family and friends”

I love my family and friends.  I would not be here without them.  I’m blessed.  But don’t tell me I’m lucky.  There is nothing lucky about what I’ve just had to live through and witness.

 

“It was meant to be.  Just look at all you’ve learned and how much you’ve grown through all this.  She did what she was supposed to do”

Losing a child is completely unnatural.  It will never be “meant to be”.  None of the lessons learned are worth the pain that comes with them.  She didn’t do what she was “supposed” to do.  She was supposed to live a long and healthy life.  She was not supposed to die. 

 

“I’m sorry for your loss”

I didn’t lose Stella.  She was taken from me.  She was ripped from my arms by a cruel, aggressive and rare form of cancer.  I didn’t misplace her, she died.

 

“I know how you feel”

No you don’t.  It doesn’t matter if you’ve lost a parent, dog or even a child.  No one knows how I feel.  My feelings are my own.  My thoughts are my own.  My journey is my own. 

 

I am aching.

 

I am sad.

 

I am lonely, though I’m not alone.

 

I have not moved on.  I will never “move on”

 

I can’t forget.  Don’t make me pretend I have.

 

Not talking about it doesn’t make it go away.

 

I am lost.

 

Time does not heal

Time does not heal

Time does not heal

 

Healing is curative.

Grief is not something I can be cured of.

 

Healing means to make something better.

Nothing can make this better.

 

Healing has to do with wholeness. 

Without Stella, I will never be truly whole again.

 

Time does not heal

Time elapses

Time does not heal

Time numbs

Time does not heal

Time hurts

 

“She is still with you.  She is always with you”

Then why can’t I find her?????  I’ve looked in every room.  I’ve called her name until my throat got hoarse.  I’ve closed my eyes and tried to feel the soft weight of her in my arms.  I’ve even searched my dreams late at night.  But she’s gone.

And time has not brought her back.  Time has not healed. 

 

Just tell me you’re sorry.

Just hug me.

Just be there.

Just say her name, shout it, celebrate it.

 

Just give me time.

But don’t expect it to heal me.

 

Visiting Stella’s Memorial Tree at Riverdale Farm with the boys, and our friend Tobin:

Gracie spends time with Hugo at her weekly sleepover:


Aimee and our boys:


I just found this photo on my IPad.  It was taken a year ago, when I was figuring out how to work the camera.  I’ve never seen it before.  I don’t remember much about taking it…which is why I like it.  It’s a new moment with Stella:

 


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