Weight

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“You never write on the blog anymore,” is a common refrain amongst my family and friends.  People demand to know why, as though I owe them an answer.  Well, I don’t have one.  I write when I want to, I write when I have something to say.  I don’t write for anyone but myself.  And Stella.  This blog was to tell Stella’s story, to make a record of her extraordinary life for her brother’s and Aimee and I to look back on and remember.  So that we would never forget all the things she taught us and all the ups and downs we weathered.  We were writing her story.  Now that she’s gone, we are still writing her story but it is a little bit slower.  More spaced out.

So I didn’t write before Christmas, or during Christmas.  Or on the New Year.  But I can write about it now.  Now that we’ve gotten through it and I’ve had time to digest it all.  To remember and reflect.

“How was your Christmas?”

It was heavy.  And not heavy as in I gained 20 pounds from eating chocolate and and gravy-covered meat dishes (although that part is true too).  It was emotionally heavy.

That is the only word I have to describe it.  I went through all the “special” days feeling as though there was a huge weight on my chest.  The Holidays’ this year were fast and furious, and I missed a lot of it because I was working.  I straddled my life and the life of a funeral director and sometimes the two parts crossed over into one another.

Christmas Eve I wrapped presents and visited St. Lawrence Market with Aim and our friends Kate and Christie, then rushed off to work where I embalmed and dressed people and answered calls from people whose loved ones had just died.  When I got off work, I arrived at my mom’s just as everyone was sitting down to the table for Christmas dinner.  I scarfed down some food then rushed home to fill stockings and prepare for the next day.  Christmas morning, the kids started opening presents, and I quickly shoved breakfast down my throat then ran out the door to work as they were opening gifts.   Work was another whirlwind of answering calls from people, preparing bodies and rooms for visitations, paperwork and picking up bodies.  At the end of the day, I rushed to Aimee’s moms and arrived just as dinner was being  cleared from the table and the kids had finished opening their gifts.  Boxing day I woke up and headed off to work again, leaving the kids and Aimee playing with all the new toys.  Back and forth I ran, a series of spending time with the living and then leaving to go care for the dead.

The last couple of months the management has let me do more than just parking lot duty and flower runs.  I have gotten to help run some funerals, I have been on the front line with families.  And the truth is, I have seen a lot of death in the last 7 months.  Witnessed a lot of heartbreak, tears, shock, fear, raw pain. And as the holiday season approached, I found myself feeling weighted down, not only by my own struggle to continue to survive in a world without my vibrant daughter, but by the pain of all the families I had helped over the last half year.

Just days before Christmas I ran my first solo service.  It was at a crematorium and I was the only one from the Funeral Home who was there.  I brought with me, buckled in the front seat of a black sedan, a tiny white 18” casket containing the hopes and dreams of a young couple.  A beautiful, full-term little girl who was born dead and no one knew quite why.  I had gently dressed her in a pink knit bonnet and frock, covered her in a white crocheted blanket and then placed her in a casket.  At the crematorium chapel, friends and family gathered to pay their last respects.  I guided everyone through the impromptu, informal service where we covered the baby in rose petals, spoke about how she had been taken too soon did some prayers, and then I pressed a button that opened a metal gate.  Behind the gate was a concrete room, cold and grey.  My footsteps echoed loudly on the cement floor as I placed the tiny casket on a rolling table and helped load it in to the retort (aka the kiln), then stood by while a solemn faced crematorium operator pressed the button which ignited the fire inside.  Flames rose up and quickly swallowed up the physical body of that baby and casket, filling the room with dry heat and an orange glow.  The parents stood together, sobbing loudly and clutching their hearts in pure agony as we all waited for the right moment to retreat from that room, close the heavy metal gate and return to the chapel full of its flowers and stained glass windows.

I didn’t go to the crematorium to watch Stella’s little body get swallowed up.  I didn’t want to be haunted by the nightmare of it all.  Aimee and her sister and mother went and though I have never asked Aimee about it, and don’t want to know any details, I know she is deeply scarred by it.  Her eyes go empty when she remembers that day.  I don’t know what happened with Stella when she went into the retort, but I know the process.  I know the sights and sounds and smells of it all.  I know the horror and the emptiness.

So when I entered into the Christmas season this year, I took with me the memory of that couple at the crematorium who had likely already bought a “Baby’s First Christmas” outfit for their dead daughter.  I took with me the memory of the three teenage girls who had buried their cancer-ravaged mother just the month before.  I took with me the memory of the grey-haired widower who had just buried his wife of 52 years.  I remember his heavy footsteps as he trudged out into the winter weather, and I wondered how it would feel for him to wake up Christmas morning alone for the first time in more than half a century.

As I drove around Christmas Eve and Christmas Day, picking up dead bodies all over Toronto, I thought a lot about Stella.  I thought about how hard holiday’s are without her and how difficult they would be for each of the families that I was going to meet in the next few days.  Each death call we received over the holiday’s was magnified by the fact it was “Christmas”.  There were the daughters who went to their dad’s house Christmas morning with all the grand-kids and found him dead in his bed.  The husband whose wife put the turkey in the oven then said she didn’t feel well and went to lie down, dying a few hours later.  The two stillbirths— Christmas babies who didn’t make it.  Whether the death was expected or unexpected, someone old or young, each story left its weight in my heart.  So though my heart swelled with happiness Christmas morning when Sam and Hugo joined Aimee and I in bed to rip open their stockings, and though I loved seeing their rapt faced when Santa Claus showed up at my mom’s house Christmas Eve (thanks Uncle Daniel!!!), all my joy came with a certain amount of sadness.  Maybe it’s not sadness so much as perspective.  Knowing that there is more going on in the world than what was happening in my little living room with the wrapping paper and brightly coloured toys.

On Boxing Day the front of the Toronto Star newspaper featured stories of “the best gift ever”, highlighting babies born on Christmas Day. I wanted to rip it into tiny pieces.  All I could think about were the parents whose babies were born and died on Christmas Day.  As if they weren’t hurting enough, now they were going to be tortured by reading about other people’s Christmas babies— the amazing, beautiful story that should have been theirs too.

Heavy.

I still feel the weight of all these stories now, two weeks after Christmas.  I feel the weight of the knowledge that there are countless families like Aimee’s and mine which are not quite ever complete at the Holiday’s.  Or any day.  Aimee and I only got three Christmases with Stella, and only two “pre-diagnosis” when we still believed in the magic of Christmas.  Christmas had never really been the same to me.

But even though I missed most of the “traditional” aspects of Christmas this year… the dinners and the present opening and the frantic pre/post holiday shopping, I found my own Holiday spirit.  In the quiet, in-between moments where there was sun shining down and Christmas carols playing on the car radio.  When the boys first laid eyes on their bulging stockings.  When I bit into my favourite Christmas morning breakfast of bagels, lox and cream cheese.  When I got warm hugs and hot chocolate.  The heaviness was still there.  The grief of Stella’s absence went with me everywhere.  But every time I saw a star light up on someone’s house, or the street, or a tree, I could hear a high-pitched cackle-y laugh and knew that Stella was with me.

Reminding me that the heavier the weight, the stronger I will become.

Hugo admires Stella’s tree at Riverdale Farm that we decorated for Christmas:IMG_9410

 

Gracie and Sam play at Great Wolf Lodge, our Christmas gift to them:IMG_9375

Sam and Hugo help decorate Stella’s tree:IMG_9306

Sam and Hugo play at the park on Boxing Day:

 

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Hugo, Gracie and Sam have a movie-night sleepover:

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One of the very few photos Aimee and I have of all three of our children.  Stella died 3 weeks after this photo was taken:

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Hurry-Hurry

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I started my internship at a Toronto Funeral Home earlier this week.  It’s been absolutely bonkers.  The truth is, I haven’t worked a real, paying job since the day Stella got diagnosed, June 24, 2011, when I called in to say I’d be a few hours late because we were taking Stella in to the Doctors.  I never made it back, ever again.

The hours at the Funeral Home are tough…lots of 14 hour days (in heels- ouch, inhumane!), lots of evenings and most weekends.  It’s been a really difficult adjustment for all of us.  I miss my kids.  I miss my weekends.  I miss sitting with Aimee on the couch at night and talking about our days.  I miss folding laundry.  Miss reading bedtime stories.  Miss seeing Heather and Xavier.  Miss flat shoes.

Aimee has been incredible, just picking up the reins and stepping in to do the majority of the kid stuff while I chase this dream of mine (she even makes my lunches and dinners…thanks honey!).  In my first week at the Funeral Home, I’ve been thinking of Stella a lot.  She is, after all, the one who led me on this path.  On the days that I’ve burst into tears and convinced myself that I can’t do this— it’s too hard, too much to learn, too stressful— I’ve tried to remember her smiling little face and the things she endured, all the while appreciating each moment she was given.  Sometimes it works, other times I just want to run away and hide in the home I’m so comfortable in, where the memories dance in shadows on the wall and the kids laughter echoes from the ceiling.  But I remember reading somewhere once that if you don’t do something every single day that challenges you and makes your heart race a little it, you’re not really living. So, I remind myself that new things are always hard, and I force myself to go back.  I want to do this, so even though it is exhausting to stretch myself emotionally and physically and mentally each day, I am doing it.  And as the days go by, I am slowly learning and am confident that someday it won’t all feel so foreign and awkward.

One thing I’m having trouble with is the rush, rush, rush of daily life that I’ve been thrust back into. Before Stella was diagnosed with DIPG, I used to over plan and overbook her days and nights because I just wanted to get through them.  Parenting Stella was challenging.  A lot of it was about “killing time” until that blessed moment when she fell asleep in my arms on the couch and Aimee and I could breathe a sigh of relief and put a black “X” on the calendar for, “made it through that day!”.  After she was diagnosed, it was the opposite.  We dreaded what the next day, the next moment, would bring so we slowed down almost to a halt.  Each smile, each tear was cherished and rolled around in our hearts like a precious jewel.  I got used to taking things slowly.  However, life at a funeral home is again all about hurry hurry, rush, rush and I can feel my pulse and legs quickening and ramping up already.

It’s ironic really, because death is the moment when time stops completely for somebody.  When it ceases to matter, and everything just halts.  How strange that this moment is marked for everyone else with “hurry, hurry”.  When a death occurs in a nursing home, generally the family has only 24 hours to clear out their loved ones room so that somebody else can be moved it.  At the funeral home there is a rush to get the body embalmed (or cremated) before nature takes its course.  Then a juggling act to fit in multiple families who are looking for visitations and services and burials.  So it’s hurry to get the room emptied, hurry to get the body removed, hurry to figure out the when’s and where’s of a service.

When people come in for visitations or services, over and over again I see groups forming circles, hugging and kissing and saying, “I haven’t seen you in ages…we must stop meeting like this”.  People pour in and then, more often than not, they sneak out early citing things like work requirements, other meetings or not wanting to get caught up in rush hour traffic.  And I’m not saying that these aren’t valid reasons but…if we even rush through saying goodbye to someone who has died, if we think sitting in traffic an hour less on a Tuesday night is more important than saying a proper goodbye, what kind of message are we sending about the importance of a person’s life?  Showing up isn‪’t enough‪.  We need to FEEL something‪.  How can we say that we are living each moment to its fullest, celebrating the little things when a person‪’s life is n‪ot worth a little traffic‪?  We live while we are alive.  But once we die, is it also not important to stop the mad rush– just for a few hours— to reflect on life‪?  If you didn’t know the person that well, maybe they were a work colleague’s parent or something, it doesn’t make their life any less important.  Just because you didn’t know them personally, doesn’t mean it’s not “worth it” for you to spend an afternoon sitting in a space with other people and grieving.  I’ve written several times now that there are very few “safe” spaces with which we are allowed to cry and mourn.  It‪’s why I choose to go to events like Blue Christmas at my Church, or the annual Memorial Service at Sick Kids Hospital.  Because they create a time and a place to cry and be sad.  I think funerals or memorial services should be seen as something similar.  It is not a duty.  It is not something you “have” to do because otherwise your work colleague would think you were an ass, it is a privilege and a gift to have time to sit and reflect.  You can cry for your own parent, cry for the divorce you just went through, cry for the miscarriage from 22 years ago.  It doesn’t matter what or who you are grieving.   I have also seen people leave a funeral to check their Blackberries or cellphones.  It could be important— maybe they have a sick or dying relative themselves.  But more often than not, it’s work.  Or facebook.  We are so busy trying to get to the next thing, we have no time for now.  It constantly feels as though you are fighting against a whirlpool or demands as you walk through life, so of course it is hard not to get sucked into the running, running, running.  But how can a person that walked this Earth for 82 years, that ate and drank and laughed and loved and joked and raged and smiled and cried, not be worth 45 minutes in your day to reflect on and think about.  How can we be so proud of accomplishments like a high score on Candy Crush and not of how we chose to remember the lady three doors down who gave us tomatoes every fall from her garden?

I have tried to slow down in my life.  I have tried to focus less on “getting there” and more on the journey.  Tried to be present.  Not texting when I should be reading bedtime stories to the kids.  Not writing a grocery list from the bathtub when I’m supposed to be relaxing. It’s hard though, you’re constantly fighting to put the brakes on in a world that thrives on speed and immediacy.  Stella’s days after she was diagnosed were spent simply enjoying whatever came.  In the early days, it was trips to Riverdale Farm and Great Wolf Lodge.  Later, as her body began to fail her, it was sitting watching Dora the Explorer or Golden Girls and having her nails painted.  Later still, when she could do almost nothing, it was simply laying out in the sunshine under the tree in our front yard and being read to or listening to music or getting her nails painted.  It didn’t matter.  Stella was never in a hurry.  She savoured each bite of ice cream, rolled it on her tongue and often smiled after every single bite.  Sam is similar.  When he has something he likes (for him it’s popcorn), he eats it slowly and stops every once in awhile to give a big smile and say, “Mmmmmm.  Yummy in my tummy”.

Stella lived life full-tilt.  She was always on the go, always excited about what was around the corner, always bursting with energy.  But she also knew when it was time to stop.  To look at the gnarled roots of a tree and wonder how they got that way.  To screech to a halt when the ice cream trucks bells could be heard faintly three blocks over.  To sing a song.  We have to sometime shave a “pause” button in life, otherwise the moments get lost in the days.

As I drove to work yesterday, I noticed that the tulips had finally begun to poke their heads out of the ground and the trees have finally burst into umbrellas of green after an incredibly long winter.    Nature was in no hurry for the flowers to bloom yet they came eventually, when the time was right.  Because there is always time to live.  The secret of nature is patience.  Time should never be hurried.

 “The butterfly counts not months but moments, 
and has time enough.”- Tagore


 Birthday Cakes for no reason in honour of Stella:

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Mother’s Day Treats: 

IMG_6918Hugo loves swinging and so did Stella:

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Sam discovers the cottage beach as a new season begins:

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Sam, Hugo and Gracie roast marshmallows at the cottage:

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Miss your sweet face Stella

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Joy and Sorrow

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Khalil Gibran says of Joy and Sorrow:

“Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that holds your wine the very cup that was burned in the potter’s oven?

And is not the lute that soothes your spirit, the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.” But I say unto you, they are inseparable.

Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced. When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.”

 

Aimee and I are missing Stella a lot these days.  Maybe it’s the weather.  Maybe it’s the impending October 22nd date.  But I think it’s just that she’s been gone for what feels like a long time now, and since our lives have settled into a “new normal”, we feel her absence deeply.

 

I recently admitted to Aimee that I’ve been staring at the big blow up photos we have of Stella.  They are the posters that our friends Ray and Brad made for Stella’s funeral and if you look closely, you can see the pores of her skin.  You can even see little droplets of milk in her downy blonde moustache.  And her perfect little teeth, all lined up in a row with a little space between the two front ones.  I find myself spending copious amounts of time staring at each laugh line and eyebrow hair, willing myself to remember exactly what she looked like.  I stare at her curls and marvel at home some of the photos were good enough to capture the colour of each individual strand.  Some are blonde, some are red, some are so light they look white.  After I admitted this to Aimee, she confided that she, too, had been looking at pictures of Stella.  She said she looks at ones on the laptop computer and zooms in as close as she possibly can to her eyes and the curve of her cupid-bow lips.  In our own ways, we are both desperate to hang on to the details we remember about her body.

 

When I look at her photo and run my fingers over the flat cardboard, wishing with all my heart to feel some warmth underneath, the physical pain I once felt all the time returns instantly.  It’s a weight in my chest that has sharp edges to it.  It makes me feel as though I am carrying 100 extra pounds just beneath my ribcage, and it hurts to breathe sometimes.
As we integrate ourselves back into the “outside” world, I struggle to remember that Stella’s life was not just a flash in the pan, but a real and meaningful journey.  I have transitioned back into a world where people push each other away from subway doors, click their tongues loudly when they feel the Tim Horton’s cashier isn’t moving fast enough, and become one of the masses.  A nameless, faceless figure moving through the hallways of school, fading quietly into the background as I assimilate with the other students.  It is hard in this environment to remember the beauty and safety that was my life for 16 months.  16 months where, though we were doing something impossibly sad and difficult, we had people holding our hands the whole way.  Now we have been released into the big, bad, world and though I’m much more sure of myself then I once was, Stella’s cancer has made me cautious.  I guard my heart and keep my cards a bit closer to my chest.  I have known pain and sorrow and gone to dark, dark places and am in no hurry to go back.

 

I was giving the boys a bath last night, and for some reason I flashed back to the morning after Sam was born.  I had the worst anxiety attack of my life just after he exploded into the world.  I sobbed in my father’s arms in the hospital feeling as though I were being sucked into a big black hole and that if I let go of his fuzzy orange shirt for just one second, I would never be able to climb back up again.  I remember going home feeling completely drained, exhausted, sleep deprived, and  stressed beyond belief.  I went into the bathroom and just collapsed on the ground.  I was so, so sad.  Devastated that the little boy who was just born wouldn’t get to know his big sister.  Plagued with memories of the happy day Stella was born, and the knowledge that she would soon die.  Distraught that I wasn’t at the hospital with Aimee and Sam where I wanted to be because I hadn’t been strong enough.  I didn’t know how I was going to muster the strength to get up off that floor, let alone see Stella through her cancer and eventual death.  I remember feeling the cool tiles on my cheek and the painful waves of sadness that ricocheted through my body, ripping through everything like a grenade.  It was darkness and pain.  I shook myself out of the memory and stared at Hugo and Sam who were playing their own version of “peek-a-boo” together and belly laughing.  The pure joy and delight they were experiencing was such a contrast to the dark place I had been that day.  I remember the thing that got me up off the floor was the knowledge that Stella was sitting, waiting for me to join her on the couch and watch Dora The Explorer with her.  I reflected on how first it was Stella herself, then later Sam and Hugo who were the reasons I got out of bed for many, many, months.  And though I am working on building our life back up by going to school and starting new routines and new memories, I don’t think I can yet say that I get out of bed for myself yet.  It is still my children that keep me going.  I think I’ll get there.  Get to the point that it’s my whole life that makes me happy, but right now I still have lots of times that I want to pull the covers over my head and disappear.

 

I miss Stella’s cackle.  Miss her grin when she knew she was about to get in trouble.  Miss the soft clicking noise she made when she slept.  I miss buying little girls clothing and dressing her up for the Holidays.  I miss listening to her sing the Golden Girls theme song, and dance her heart out.  I miss looking down at the crook of my arm and seeing her face resting there, long lashes resting softly on her porcelain skin.  I miss the “blam blam” ice cream march that we did every day, twice a day to get her to take her medications.  I miss stretching my imagination to find things to do with her on the couch; tea parties, pedicures, puppet shows, reading, singing.  I miss having a singular focus and goal, which was to keep her happy.

 

I used to always make wishes, but now I don’t know what I wish anymore.

 

For a long time, I wished (of course) that she had never gotten DIPG.  Now I’m not so sure I can wish that anymore because if she hadn’t gotten sick we would never have had the incredible perspective we have now.  We wouldn’t have Hugo.  We wouldn’t have the knowledge of how to parent in the present. We wouldn’t have many of the amazing friends that fill our lives with joy whom we met through Stella’s illness.  We wouldn’t have the same level of simplicity and honesty and fearlessness in our lives.  Yet it seems crazy to say you wouldn’t wish that your child was here and healthy.  It’s like being locked in between shadow and light.  There are so many things I don’t understand, so many things that make no sense to me now.

 

But I know that when I see the leaves turning I miss my daughter.  And though I can’t say that I am unhappy in my life, I am sad at moments when I allow myself to fantasize about how she would look and what she would be saying to me right now.  Aimee and I fluctuate between moments of tearful disbelief, powerful sadness, huge gratitude, intense pride, and pure joy.

 

I think it is as I’ve always suspected; that happiness and sadness exist together in my world and in my heart and there is a place for both of them.  Someone once said that if you think of life as a piano, the white keys are the happy times, the black keys are the sad times, and only when you play them together do you get the purest, most beautiful music.

 Sam and Hugo play their own version of “Peek-A-Boo”IMG_4428

Sam enjoys his yogurt:IMG_4286

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photo-31 Our friends Holden (3) and Nate (4) ran in honour of our girlIMG_4396

 

IMG_0727 Missing You Stella.  October 2011

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Stella She

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“Stella She”

 Stella She

I was trying to set up an email account for something a few days ago, when I had a vague memory that at one point I had a gmail account I had set up because I wanted to start blogging about Stella.  When I was pregnant with her, I was obsessed with reading those “baby on the way” blogs that some people write.  I thought it was so cool to be able to track your physical changes, your emotions and joys and plans for the baby.  Moms-to-be post photos of their stomachs expanding, the nurseries they decorated, the outfits their babies will come home in, ultrasound pictures.  Those blogs were endlessly entertaining to me, but by the time I found them I felt it was too late to start one for my pregnancy with Stella.  Instead, about a year into parenthood, I tried to start a blog…just for myself, not public, that would be a type of journal in which I would write for Stella, so that when she was older I could show it to her and she would see a different side of herself, me and our burgeoning relationship.  Embarrassingly, it was called “Mishi Me—Life with Stella She”.  I almost gagged when I saw the title.  I don’t remember making it up, but I’m sure I thought it was mighty clever at the time!  I ended up only writing in it 11 times in the space of 4 months.  There never seemed to be enough time, or things to write about.  In fact, I completely forgot about it.  So it was a strange—very strange— experience to remember about it a few days ago, find it online, and read my own writing.

Writing I don’t remember at all.

I write about my excitement in finding out that Aimee was pregnant, and my concerns about how Stella would adjust to a new baby.  A few weeks later I reveal my devastation when Aimee miscarried that baby and talk about how the hopes and dreams we made were dashed when she was only 10 weeks pregnant.  I wax poetic about the changing nature of friendships and how friends come and go in your life depending on where you are and your common interests, as well as proximity and need.  I muse about how adults often try to make their children into mini versions of themselves.  But there, smack in the middle of all these fluffy reflections about life, was an entry about Stella trying to teach me to slow down.  I read the entry with a mixture of horror and interest.  Here it was, the same lesson that it took Stella dying to really make sink in.  Here, almost two years to the day before she died, was written proof that Stella had always been trying to give me that lesson about slowing down and appreciating the moments.  In the entry, it appears as though I was listening, but obviously the lesson didn’t sink in, because I know I went right back to being the same way I always was.  Until that day in June, 2011 when the world as I knew it came crashing down around me and I was forced to grow up and take a good, hard look at who I was.  And change.  A lot.  For myself, for my children, but, mostly, for Stella.

I try very hard not to live with regrets as I feel that it doesn’t accomplish anything.  But I couldn’t help but wonder as I read the old entry, if I had really taken in the lesson of that day, a full 8 months before she was diagnosed with DIPG, if things would have unfolded differently.  Mostly, I wonder if there would be more happy, content and good memories for my brain to sift through late at night when I fill the hole in my heart by remembering all my favourite times with the sweet little red head that burst into my life like a firecracker, and then eased out of it like an ember.

Here is the original blog entry, in its entirety:

October 25, 2010

 

I am an overachiever, overscheduler, rushrushrush kind of person.  I feel as though if I’m not doing something, it’s a waste of time.  Getting from one place to another is never about the journey, but always the destination.

 

This weekend I took Stella on our usual Saturday morning visit to see my mom (“Dee Dee” as Stella calls her…she didn’t want to be GrandMa).  We always walk to Dee Dee’s since it’s only one block away and we take the laneway between our two houses so there are no cars or other people/pets to worry about.  I rushed Stella through the visit since I always have to chase her away from the multiple steep staircases and breakable art.  It makes it a bit stressful, though DeeDee and Stella both thoroughly enjoy these visits.  As we were walking up the laneway on our way home, I began to get frustrated with Stella as she was dawdling.  She insisted on walking herself up the laneway but instead of taking the direct path home, she kept breaking away and looking at other things.  She stopped to stare at a puddle.  She ran over and banged on a garage door.  She peered at the tires of a car.  I caught myself huffing and puffing and pulling at her arm trying to get her to keep walking home.  She looked up at me and smiled, her strawberry blonde curls whipping in the early morning wind.  “Mama!” she exclaimed excitedly pointing, “tree!”.  I stopped and looked at where she was toddling off to.  There was indeed a tree just to the left of the laneway.  I’ve probably passed that tree 10,000 times in my life, but have never really stopped to look at it. 

 

Suddenly, I realized that I was missing all the beautiful and wonderful things my daughter was trying to show me, and for nothing.  I had nowhere to be.  It was 7:30am on a Saturday morning.  Aimee was still sleeping, we had no plans until the afternoon.  Stella and I had both been up since 5:00am, so we were showered and fed and dressed.  I looked down at my beautiful, perfect child and repeated after her, “tree”.  She grabbed my hand and led me to the tree where we spent the next few minutes touching the trunk and talking about how rough it was.  We picked up dried brightly coloured leaves from underneath it and threw them in the air.  As they rained down around Stella, she laughed delightedly and tried to catch them in her chubby little hands.  We went back to the puddle and played in it for awhile, making a symphony of splishing, splashing and giggling.  We looked through the wire fence at neighbour Rose’s house and counted the cucumbers hanging off the vine. 

 

The walk through the laneway which normally takes a minute took 30 minutes.  But I was so happy.  I felt present.  I felt as though I was really enjoying this walk, this moment with my daughter, this gorgeous fall day.

 

I need to do that more often.  I need to slow down and enjoy the beauty around me.  I need to live in the present.

 

Thank-you Stella, your Mama learned a valuable lesson.

 

Doctors think that Stella had the DIPG tumor for a long time before the symptoms of it started to appear, so chances are the monster was already percolating in her brainstem when we had this moment together.  What if????  I won’t torture myself with what if’s, but I will chide myself for not taking more to heart the lesson I learned that Saturday morning.  I will forever wonder if Stella had been teaching me her whole life, but I was just too busy and blind to really take it in.

I have often thought about how change, real change, requires you to become so accustomed to the “new” way of living, that you don’t even think about the old way anymore.  It’s true that I take my time more, that I take on fewer things, that I schedule less.  It’s true that I let Sam and Hugo get soaking wet playing in the backyard and don’t care about having to peel muddy clothes and shoes off them before heading in for dinner.  It’s true that I let myself sit down and have a hot cup of tea in the evenings after the kids go to bed, before I tackle cleaning the kitchen and my homework.  It’s true that I buy ice cream from the truck when it sings by the house, and sometimes let everyone stay up past their bedtime if we’re having too much fun singing and reading to stop yet.  But the one thing I haven’t been doing yet, that I would like to try, is to see the world through the eyes of my children.  Through Stella’s eyes.  As a place of constant wonderment.

So yesterday, as an experiment, I decided to try to be acutely aware of my surroundings.  And I found unexpected beauty all around me.

There was a chickadee pecking at the ground that stared at me for two full seconds before hopping away.

There was dandelion fluff blowing in the breeze.  I watched in fascination as it tumbled and almost fell, only to be swept up again, spinning and literally dancing in the wind.

There were raindrops that I let fall on my skin, instead of running and ducking for cover.  They fell with big “plops”, and make little rivulet patters between the freckles on my arms.

There was the smell of damp warmth, freshly mowed lawns and coffee.

There was the hum of traffic on a nearby street.

There was a breeze that sang in the leaves of the trees and moved my eyelashes around as I walked.

And I visited that tree in the laneway I had written about a lifetime ago.  It was still there, still bent over with the roughness of the years and the seasons engraved in its trunk.  I don’t think I’ve noticed it since that day with Stella.  But it was still there, just waiting to be discovered again.  I ran my finger through a puddle that rested at its roots and noticed in wonderment how the ripple lapped out in a perfect circle beneath my hand.  I watched an ant march steadfastly over my wrist towards a pile of sand nearby.  I fingered the green leaves on the tree.  They were alive and bright, unlike the almost-gone golden-hued ones I had thrown on Stella the day of that old blog entry. I allowed myself to feel, and I cried for the first time in weeks.  As the tears rolled down my cheeks and pooled at the hollow in my neck, I realized that I still need to let myself mourn, even as I strive to live each day to the fullest and enjoy all the little moments, not just the big ones.

Stella gave me so many gifts in her 3 ½ years on this Earth.  Even now, after she has died, she continues to give.  She lives in all the beautiful things I see around me, in the changes I have made in my life and in the laughter of her two brothers as we make mud pies in the backyard, smears of dirt in our hair, stains on our knees, smiles on our faces.

Two little monkey’s jumping on the bed:

“Old Man Sam” takes a tea break in front of Stella’s playhouse:


Auntie Heather and the boys picnic at Woodbine Beach:

Hugo, 10 months old already:


Stella, October 2010.  The same week that blog entry was written:


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The Long Winter

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The Long Winter

 

I don’t know where you’re from, but here in Canada around mid-February, winter starts to feel pretty long.

 

It’s cold and grey and the snow is hard and packed down into grey patches of dirty ice that crunch under winter boots that make your feet sweat.  You trudge and slide, cold wind biting at your cheeks and seeping down your shirt.  My kids hate wearing hats and mittens, and getting ready to go anywhere is a marathon of will and patience.  The sky is grey almost everyday.  Slate grey. Silver grey. Ash grey. Dusty grey.  Asphalt grey.  It doesn’t matter how many fancy names you give it, it’s dull looking and depressing.

 

This winter has felt especially long for me.  Aimee went back to work just over a month ago, leaving Hugo and I alone in the house for the most part.  It’s easy to get vacuumed up in sadness when you’re stuck inside the house with a 6-month old who’s cute, but not very adept at conversation.  I could go out, but I don’t feel like it.  I don’t feel like doing very much at all.

 

Our resident grief expert/friend An told me that the 3-4 month mark is often the hardest time for people who are grieving.  She also said January-February is a particularly difficult time because it’s cold and dark outside.  Oh, and and transitions (like Aimee going back to work), so it’s not too surprising that things are hard right now.  I haven’t felt like doing anything much these last couple of weeks.  And when I force myself to go out, I always feel exhausted for days by the effort.  I read recently that, “Grief is not unlike being lost out at sea; waves of different emotions continuously crash over you and you feel as if the current will sweep you out even farther from what you once thought was normal”.  This really resonated with me as grief has been overwhelming with its indecisiveness.  Sometimes I drown in it, sometimes I can swim and sometimes I am able to climb out and dive into life with power.

 

Before Stella died I used to troll on other blogs and websites belonging to parents of kids who had died of DIPG.  I would read the entries immediately before and after the death of the child over and over again.  I wanted to know.  I wanted to know how the different children had died…so I could be better prepared and know when/how it was coming.  Then I wanted to reassure myself that even after their child died, the parents/caregivers were still living and had made it through.

 

What I found was that Stella’s death was not like the ones I had read about.  Despite all my best “preparations”, I was woefully unprepared for watching my daughter physically rot away in front of me, her extremities turning blue one at a time as oxygen got squeezed out of her, her face almost unrecognizably gaunt, bruises on her ears, her eyes half opened and covered with a red film.  The other blogs didn’t tell me that was what it was going to look like. But retrospectively, I shouldn’t have expected to be prepared for my daughter’s death.  It’s not something you can ever prepare for and it’s not something someone else can tell you about or make easier for you.

 

I noticed on these other blogs that after the children die, the parents usually only update intermittently (for the most part).  As a person searching for answers, this used to frustrate me.  But now that I’m on the other side, I understand somewhat.  How many times can you write that your heart and soul are shattered, that you miss your child so much you can barely breathe, that the pain is so raw and real it burns like a thousand bee stings?  After your child dies there isn’t as much to write because you are exhausted just forcing yourself to get up in the morning. But I promised myself I would keep writing.  For myself.  For Stella.  For those who have supported us and followed our journey.  For anyone who comes after me that wants to know if and how we’re still standing.

 

So here we are.  February.  108 days since Stella died.  In that time we’ve had one public and one private Stellabration for her.  We’ve celebrated Hallowe’en, Thanksgiving, Christmas and New Year’s.  Heather, Poppa, Tristan, Nanny and Aimee celebrated Birthday’s.  Aimee went back to work.  I started taking a class at school.  Hugo has learned how to scoot around the house, eat solids and grew two front teeth.  Sam runs and climbs, says “car”, “cracker”, “bubba”, “mama”, “bird”, “DaBa” (GrandPa), “Pada” (Poppa) and “Della” (Stella).  I’ve woken up 108 mornings without being able to see her smile, touch her curls, feel her fingers curl into mine.  I’ve gone to sleep 108 nights wishing with all my heart to visit with her in my dreams.  Sam has given her picture in the living room a kiss 108 times before eating his breakfast.

 

We are in a new rhythm now.  On the weekdays, Aimee and I get up with the kids and Poppa comes over and takes Sam for an hour to DeeDee’s house for breakfast while I deal with Hugo and Aimee gets ready for work.  Sam comes home around 8am and then I play with Sam and Hugo until about 9:30am when Sam leaves for daycare. We read stories and get dressed and snack.  It’s a lovely little time.  After Sam leaves, it’s just Hugo and I, or sometimes Daniel.  We fill our days by visiting friends, taking walks to the grocery store and/or drug store, organizing drawers, reading, singing, playing, chores, etc. etc.  When Sam and Aimee get home we have dinner, then we give both the boys a bath and usually by 9pm we’re settled on the couch watching TV and talking about our days.  It’s a quiet existence.  It looks normal, but it’s not because we constantly feel as though there is a huge hole in our hearts and our lives.

 

Time, so far, has not been kind.  Stella’s presence is missed more and more each day.  The heartache doesn’t go away, it just intensifies.  I have been lucky enough to get emails from a handful of grieving mothers, who assure me that the pain lessens eventually.  But not yet.  Not 108 days in.

 

When Stella was alive and Aimee and I needed to find light we would just look into her eyes, or listen for her laugh.  But now, 108 days in, we need to find alternative ways to ground ourselves.  Last Friday night I was lucky enough to be a special guest at the Meagan’s Walk Gala in Toronto.  Meagan’s Walk is a brain tumor fundraising event that was started 12 years ago by the parents of a little girl who died just after her fifth birthday, of a DIPG tumor.  The annual Mother’s Day walk and gala has raised over $3 million dollars since it began.  Incredible!  http://www.meaganswalk.com

Sitting at a fancy table next to my friend Cath, wearing heels and makeup for the first time in over two years, I felt awkward and a bit out of place.  Then Meagan’s mom, Denise, came over to speak with me and the first thing she said is, “You don’t have to say anything to me because I know without you telling me anything what you’ve been through.  And I’m sorry”.  It was nice to know that sprinkled amongst the Doctors and socialites there were also volunteers, grieving family members and friends.  At our table there was a group of absolutely lovely people who genuinely seemed to care about Stella and Meagan and other children suffering from DIPG and other types of brain tumors.  It was a small glimpse of hope that perhaps my sadness could be turned into something more productive in the future.

 

The very next day, our family and friends headed to Kimbourne Drop-In Centre.  This is a place that Stella frequented her entire life.  I have so many memories of her there.  I first brought her there with Omo and Arin when she was 6 months old, she was also there weeks before she died, and countless times in between.  She used to paint there, run there, climb there, have time-outs on the stairs there, eat her snacks there and she even celebrated her first birthday there.  Thanks to a lovely donation from Aimee’s camp friends (go GV girls!), there was a new couch that the staff had added books and cozy pieces to and dubbed in “Stella’s Cuddling Corner”.  It’s a very sweet tribute to our girl and a small token of thanks to a program that means so much to us.  After the “official” part of the program, Heather ushered a group of Stella’s friends over to the couch for a photo opportunity.  It was lovely to see all these little people gathered around the couch, but my heart also broke as I wondered for the millionth time why Stella wasn’t there sitting amongst her friends.  So I focused instead on feeling grateful for our boys, and our amazing community.

 

The next day, Auntie Heather and Aimee and I took all three of our boys (Xavier, Sam and Hugo) to Stella’s beloved Riverdale Farm.  As the older boys ran around gazing in awe and wonderment at the animals and Hugo surveyed everything from his perch in the stroller, I had a sense of peace and faith in the future.  Today it may be grey and dull outside, but soon Spring will come.  Spring the season of new beginnings and renewal.  The season that Stella was born.  As I’ve been writing this, the grey clouds outside have lifted slightly and there is a faint blue-ish tinge to the sky.

 

A promise of the colours yet to come.

 

 

Sam and Hugo clowning around:


Stella’s friends celebrate the new couch at Kimbourne Drop – In Centre:


Stella at Kimbourne Drop In Centre with her friends Arin and Flora, Feb 2011:

Sam and Xavier visit Stella’s favourite animal (pigs) at Riverdale Farm:


 

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