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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The unmistakeable chill in the air is a sure sign that Fall is coming yet again.  Fall. the season of leaves changing, shorter days and longer nights, first day of school, cooler temperatures.  And, of course, the season in which Stella died.

Both Aimee and I are having similar experiences where we are incredibly triggered by the cooler weather.  There are some parts of our lives that are vague, almost forgotten (I can’t remember my birthdays from ages 20-24 at all), but the days and weeks that lead up to Stella’s death are as crisp and clear as ever.  Even on the days that we would rather forget, we remember.

We remember.

We remember everything.  How as the trees began to drop their brightly coloured leaves, Stella started to fade as well.  How the last trip we made with her was apple picking with Arin’s family.  The last place she was taken before slipping into the sleep she wouldn’t wake up from was Dairy Queen.  We remember the clothing that she wore those last few weeks, the foods that we ate, the television shows that we laughed through.  Aimee and I are watching the calendar.  Watching as the dates pass and that ominous day– that October 22nd date— draws every nearer.  That date that I spent 16 months wondering about.  When will it be?  How will it be?  Now I know, and the knowledge is worse than the wondering.

 

But as we have learned to do, Aimee and I cannot stop living our lives.  How often have I wished I could just pull the covers over my head and shut out the world.  But I can’t stay in bed because there are two little boys who need me to get up and smile at them and feed them and kiss their “boo-boo’s”.  I have to get up each day because that’s what Stella did.  Even when she could do no more than make seal-like noises to wake me up in the morning and swat wildly with her one arm, she got up.  And we lived.  Even if it was 15 hours on the couch, we filled the days.  Aimee and I often laugh about how we never thought we would miss the times when we spent all day on the couch watching Dora the Explorer and the Golden Girls, slowly feeding Stella mouthfuls of porridge.  But we do.  We miss them with all our hearts.  And though I’d be lying if I said on some of those days I wished I were anywhere but trapped on that couch, now that I am free to move and jump and go where I want, when I want, all I sometimes want to do is curl up on the couch and close my eyes and remember when Stella’s soft weight filled my lap and my vision and my heart.

But nowadays Aimee and I are caught up in the rhythm of regular life.  Wake up, feed kids breakfast, grab something to eat yourself, get dressed, get kids dressed, disperse to daycare, work and school.  Come home, make dinner, feed kids, bathe kids, put kids to bed, clean up, collapse into bed.  Wake up and repeat.  Sometimes a day or two goes by and everything seems the same because the pattern is so predictable, but then when you are forced to look back almost a year, you realize how different it all is.  How Sam is almost the age now that Stella was at diagnosis.  How Hugo, a mere 10 weeks old when Stella died, is now a fully-formed little toddler who walks around and loves trucks and laughs at his older brother.  How Aimee is back at work in full force and how I have become a full-time student.  How the house that was once constantly open, bursting at the seams with energy and visitors and shared food now sits quietly, it’s door mostly shut.  Empty all day long.  It’s hard.  We struggle because along with grief, we are dealing with the needs of a 23 month old and a 13 month old.  They don’t sleep well, they bop each other on the head with toys, they don’t like to share.  They challenge us everyday.  “What were we thinking?” we sometimes wonder out loud at the reality that we chose to have children 10 months apart.  Yet, we know we could not live without them.  The sleep deprivation, the time-outs, the tears and struggles disappear when Sam snuggles into my lap for bedtime stories, and Hugo nuzzles my neck after his night time bath.  It may not have been the easiest choice, but it was the best one for us.

Our family this past weekend at Stella’s bench/tree, Riverdale Farm:

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Now I do something I haven’t done since Stella was diagnosed.  I leave the house every single day, get on the subway and travel.  It used to be work and now it’s school, but as I shuffle along with all the other people walking towards the crowded escalators I feel more trapped than I did when I was on the couch all day. I miss the safe little bubble that we created for Stella when she was sick.  When almost every interaction we had was positive, and each day brought a new story about someone or something that had done something ordinary or extraordinary for our girl.

 

Out in the “real world”, it’s scary.  Being a student is a struggle for me.  I enjoy my classes very much, but I feel like an outsider.  The vast majority of my classmates are under 23 years old.  In fact, some are as young as 17.  I hadn’t fully realized before now how my children had become almost my sole interest.  I’m used to being in social settings where the most common question is, “How many kids do you have?” Followed by, “How old are they?” and “Are they in daycare/what school do they go to?” and you just build the conversation from there.  But here…well, here no one cares that I have kids.  I mention it- frequently- but have yet to be asked any follow-up questions to the statement.  The people around me talk about the party they went to on Saturday night and the part-time jobs they have.  They wander the halls walking together in groups, but everyone with their heads down as they furiously text or check facebook messages.  They talk about who is trying to “pick up” whom in class, flirt with each other endlessly and in the margins of their notepads, design the tattoos they are planning on getting. Young and childless, they are able to work evenings and weekends at Funeral Homes and have so much more experience than I do.  When I say I have never done something because I’ve never worked in the business, all the other students do is look at me with a mixture of horror and pity.  I imagine that when I fade back from the group they say to each other, “That old lady is never going to make it”.

 Sam and Hugo at our friends Christina and Kristin’s Wedding this past weekend:

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Sam, Hugo and Gracie spend time at BlueBird cottage:

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Familiar feelings of my awkward High School days have come bubbling up to the surface.  Not quite fitting in, but not a complete social misfit.  I got through High School by minding my own business and flying under the radar.  The mantra I once had is again playing in my brain: “Dress in plain clothing.  Don’t draw attention to yourself.  On breaks and at lunch find a quiet place and keep your head down”.  But that’s not who I wanted to be this time.  This time, I am coming to a school in my mid-thirties.  I have suffered the loss of a child and learned to be brave and stand up for myself and be painfully honest.  I wanted to walk in here and be the open, confident, smiley person that Stella was, and that I promised myself I would become.  But change is hard.  Change is slow.  And this change is fraught with emotion as I struggle to keep up with the realities of living life without Stella.  Part of me wants to quit.  Wants to run away and hide because this is hard.  The classes are challenging, the commute is awful and the social aspects are daunting.  I rationalize by saying that I’ve done harder things before, but then the other part of me says, “exactly, so why do you want to keep doing hard things.  Take a break”.  But there is a lot riding on this crazy idea of mine to go back to school.  A huge financial strain on my family, a huge leap of faith that I will be good at this and employable at the end of it, a huge risk that I will, very publicly, fail.  So I do the only thing I can— the one thing that Stella did every single day— I get up.  If I keep getting up and out of bed, then it means I’m living another day and that I will get through it.  I even had ice cream for breakfast on Tuesday morning before braving my class.

 

But thank goodness it’s Fall.  Thank goodness it’s the season that is most representative of change and not fearing the cold and snow that will follow because spring, with its promise of nice days will eventually come again.  Thank goodness Stella taught me to have patience with myself and to fight only the challenges of one day at a time, because one challenge at a time is do-able even if the entire experience is hard.  Thank goodness I can remember exactly what I was doing on this day last year, and remember how I promised myself to live better and be better.  Thank goodness I have the rhythm of the days to fall back into when the outside world feels too scary.  Thank-goodness I was given the gift of Stella who taught me that even the smallest gain can be a victory.  The little girl who taught herself to paint by grabbing a paintbrush with her mouth.  Who taught herself to communicate by sticking her tongue out for “yes”.  Who taught herself to dance by swinging one hand over her head.  Who taught a community about love and me about life.

 

Thank goodness that even almost a year after her death, I am able to find strength and inspiration in her every single day.  I remember once, before she was diagnosed, Stella tried to climb up the slide.  I kept telling her to go around and climb up the ladder instead.  “Why?” she asked me.  “Because you’re not supposed to go up that way,” I responded.  She looked at me than back at the slide

“Why?” she repeated.  I was flustered.  “Because…because it’s dangerous”.

“No Mama!” She shouted at me.  Stella said “no” to me so often, it just bounced off my back like a rubber ball.

“Fine,” I shrugged knowing she would never make it.  “Climb up the slide, but it’s easier to go up the ladder”.  At that, Stella smiled mischieviously and pushed and pulled and grunted her way up the slide.  She slid backwards several times and I stood with my hands on my hips resisting the urge to pull her off and force her up the ladder.  I knew she wouldn’t make it, and waited for her to see I was right.  It wasn’t that I wanted her to fail, I just couldn’t figure out why she wouldn’t just climb the ladder and be done with it.

 

But you know Stella.  She DID make it up that slide.  Her smile when she arrived at the top was priceless.  She could have easily gone up the ladder, but there was no challenge in that and she knew that making it up the slide was so much sweeter– especially because I had told her she couldn’t.  I remember shaking my head in wonderment.  What a turkey.

 

And so, even though it would probably be easier for Aimee and I to just “take the ladder”, we are going to live our lives Stella style and go up the slide because we know the “made it”! feeling will just be that much sweeter.  And, as Stella taught me, “I told you so” is pretty satisfying too.

 

There are two ways to get to the top of an oak tree;

Climb it,

or sit on an acorn and wait

 Stella, September 21, 2012:

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Morning Gory

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Morning Gory

I think mornings are difficult in every household.  When Stella was here, the early part of the day was usually the most challenging.  I used to refer to it as “Morning Gory”.  When I think back, all I remember is sitting on the couch at 5:10am, the darkness of night still covering the street, cool breezes hitting my neck from the antique windows behind me and Stella sitting on my lap drinking her bottle and demanding my attention, energy and alertness even though I was still half asleep and trying to secretly close my eyes without her seeing me (because if she caught me, she would smack my face and say, “Mama! Wake up!”).  Stella was super cranky in the mornings.  I don’t know how many times I would say to her, “Stella, I’m not the one who wanted to get up this early.  If you’re going to insist on getting up this early, at least try to be a bit pleasant”.  She would just glare at me and throw something.  She whined and cried and wouldn’t let me put my head down, or my feet up on the couch.  “Noooooo!” she would cry, pounding her little fists. 

Thankfully, Sam and Hugo are much more civil in their wake up times.  Usually between 6 and 7, which I can deal with.  And, generally, they are pretty happy.  Especially Hugo, who actually wakes up smiling! But the other day, Sam just wouldn’t stop crying after he got up (around 6:15am).  He cried and threw the egg he insisted I make for him all over the ground.  He screamed and fought me with all his toddler power when I tried to get him dressed, wailing and rolling and screeching.  He threw a wooden hammer toy at Hugo, who spent the entire morning also crying at me with his arms permanently stuck in the “pick me up” position.  He crawled after me as I tried to manage Sam, pulling himself up on my leg and trying to climb up each time he caught me.  The house was a cacophony of screams, cries, chaos. 

I was frazzled.  My hair kept flopping into my face.  I was sweating, and the noise of two unhappy boys followed me everywhere.  In trying to keep them both happy, I was making neither one happy.  I kept putting my morning tea down, losing track of it, then trying to reheat and drink it.  I must have done that half a dozen times before I finally gave up.  Later, I found the cold tea sitting inside the bathroom vanity cupboard behind the Dora band-aids.  That’s the kind of morning it was.  I was overwhelmed with the urge to cover my ears, shut my eyes and find a “happy” place in my own brain to escape to. I was having very intense and anxiety-producing flashbacks of mornings with Stella.  But, mostly, I was mad at myself because I kept trying to find that wonderful perspective I had gotten with Stella’s too-short life, and I couldn’t locate it anywhere in the tears and cries of the boys.  I reminded myself how lucky I am to have two beautiful, healthy and fun children in my life, but I still fantasized about trapping them in a crib and plying them with gravol until they fell asleep so I could hear myself think again.  I thought about the blog readers who have told me that whenever they feel angry or overwhelmed with the ir children they  think of Stella and calm themselves down.  So I tried.  Tried to channel my inner zen mom, but Sam’s crying and throwing combined with Hugo’s whining and climbing was making my head spin.  So I just sat down on the ground for a minute to try to stop the insanity.  And that made Sam pull at me, crying even louder.  And it made Hugo plop onto my lap and try climbing up my back because I had finally stopped moving.  So I sat there in a heap on the floor and tried to collect myself, but I felt just awful.  I was not enjoying being a mom at this particular moment, and the guilt of it weighed on me like a 100 pound brick.

Then somewhere between the tears, pulls on my hair and screams, it hit me.  I don’t have to enjoy every single moment with the boys.  I can’t.  No one can.  When I look back on the times I had with Stella, there are some absolutely horrible days, but overall the experience of being her mother was completely magical.  Sometimes I focus on the hard and bad times, because Stella died and I go over and over again in my brain what I could have done differently to have more of her smiles locked in my brain.  But when I think back on her life as a whole, I usually don’t remember the terrible days, I remember the amazing ones.  I remember picking her up from daycare and having her literally run to me and jump into my arms, her curls bouncing against her shoulders, her huge smile repeating, “Mama, Mama!” over and over again as she skipped to me.  I remember how much she giggled when I sang “The Grand Old Duke of York” to her and Gracie.  She never got tired of it, from the time she was 10 weeks old and I started singing it to her, to the weeks before she died when she smiled up at me as I sang it softly in her ear. I remember sitting with her after daycare, sharing a bag of cheese flavoured rice cakes and watching the Golden Girls.  She would point at the TV and name them all as they appeared on screen.  Blanche, Dorothy,Rose and Sophia.  I remember laughter and butterflies and flowers and slides and family dinners.  I remember first words and first steps and first holidays.  I remember exploring the farm and the library and the park and the science centre.  I remember us both learning, both teaching, both experiencing.  I remember her falling asleep in my arms after a busy day and finally being able to stare down at the face of a daughter who never sat still in her waking hours.

It’s like anything else you do— maybe when you look back on a vacation you took, or a job you had, you look on it as a whole and not a series of hundreds of individual moments, some good and bad.  You just say, “that was a great vacation!” or “that was a terrible job”.  So it’s okay for me to not love being with my kids all the time because, overall, it’s amazing and that is what I will remember at the end of the day looking back.  Not the small, individual moments that tried me, but the big picture.  And in the big picture, I adore my sons.  I love being with them and love parenting them and am so excited about all that has been and all that is coming.  This was a huge moment of relief and realization for me.  I have been operating under this pressure cooker of parenting where I had a child who died, so I have a perspective and an appreciation for my surviving children that makes me feel awful if I don’t find the magic in every moment.  I’ve often thought about what I wouldn’t give to go back to those mornings with Stella, and appreciate them more.  But maybe that’s silly.  Maybe I would have had more patience, a better sense of humor, a calmer demeanor.  But I doubt I still would have enjoyed being yelled at by a toddler at 5-something in the mornings.  That’s just not fun no matter how you look at it.  So I have given myself permission to admit that it isn’t all fun.  And it won’t all be fun.  Just because Stella died doesn’t mean I have to be a martyr, or pretend I’ve got it all figured out.  Parenting is hard, but that is also what makes it so wonderful and interesting.

I believe my sons will have a better life because of what I learned from Stella.  I really don’t sweat the small stuff.  Sam is allowed to get soaking wet playing with the hose every afternoon after daycare.  I don’t care.  He gets drenched, he laughs and has a great time, then we go inside and take his clothes off.  He loves it.  I sigh when he goes for the hose, but gamely turn on the water for him and then laugh as he discovers that putting his sneaker under the stream of water causes it to hit his face. Similarly, Hugo gets little bites of ice cream, even at only 9 months of age.  He loves it, just like Stella did.  I give him small teaspoons sometimes, and ignore the voice inside my head (or the one outside my head that comes in the form of Aimee!), telling me that ice cream isn’t good for babies.  He grabs for the spoon and smiles as though this is the best thing in the entire world.  His excitement makes me laugh.  Aimee and I fight so much less over the laundry, money, the condition of the grass in the backyard.  Losing Stella didn’t make me perfect, it just made me less stressed about trying to be perfect. 

I am free to try, to fail, to suceed, to learn, to grow, to create, to love.

Stella wasn’t perfect.  Far from it.  But she was happy.  She found great delight in everything she did.  It’s yet another thing she taught me in the three and a half short years she was here— find joy in imperfections.  Who you are is enough. 

“Above the clouds and their shadows, lie the stars and their light”– Pythagores

Sam and Nanny play in the backyard:

Sam watches hockey with neighbour Ken:

Aimee takes Hugo on the slide:

Sam and Hugo both got their first haircuts this week:


Stella at a friends cottage, August 2011:


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FOR STELLA (by Aimee)

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By Aimee Bruner

This time last summer, I was losing my daughter right in front of my eyes.  She was weeks away from death and weeks away from slipping through my tight grasp forever.  My heart was breaking in ways that I never knew it could.  Mishi and I spent all day, every day, nestled on the couch, holding Stella in our arms.  Our bodies aching from spending almost a year sitting in the same corner of the couch – one arm cradling Stella’s head and the other doing whatever it needed to do to make her laugh or smile.  My muscles still hurt on the left side of my body from time to time and the carpel tunnel in my left wrist from holding my girl has still not gone away.  I hope it never does because sometimes I feel like it’s the closest thing to her that I have left.

 

I remember feeling so tired, helpless and unbearably sad in those days.  As I sat on the couch, caressing the beautiful curls, soft skin and button nose that I knew I would one day miss too much to survive – the little voices and laughter of the neigbhourhood kids rang out all summer long.  Bike rides, trips to the store for ice cream and riding scooters to the park.  It was happening just outside our living room window as our daughter lay dying just a stones throw away.  It was excruciating and I know, that there is a part of me that will never recover.

 

One day, when I could no longer stand the aching that was going on in my body and the feeling of weakness that went along with it – I decided that I needed to get out of the house and exercise for 30 minutes every few days.  I’m not a runner but I decided to jog anyway.  At first it was so hard – who I’m I kidding – it was always really hard for me, but I loved the way I felt afterwards.  It made me feel alive again.  It was such a release.  I could turn my brain off and just be.  After a while, every time I jogged, I found my mind wandering.  I started picturing the Tour for Kids ride – this is a bike ride that is held every year to raise money for the three cancer camps in Ontario.  I work at Camp Oochigeas – one of the recipients of the funding from the ride.  The ride was approaching and the buzz around it made me start to wonder if I could do it.  It’s a 4-day, 400Km ride and far beyond anything, physically, I had ever done in my life.  I started thinking about it constantly until I just couldn’t let it go.

 

So I borrowed a bike.

 

I started to go for short rides (I didn’t want to be away from Stella for too long) and very quickly fell in love with it.  For the first time in a long time I felt strong.  I tried to get out for a ride anytime I could but shortly after getting into my new favourite pass time, my world came crashing down when Stella died in our arms.   Everything came to a halt.  It was the horrible reality that Mishi and I knew would one day come, in fact, we had a year and a half to “prepare” for it but it was excruciating.  She was gone.  Our baby girl – the one we dreamed of long before she was born – gone.  Mishi and I were devastated and we were lost.  All of us were lost.  For a year and a half, Stella was the focus of every day for all of us.  Mishi and I weren’t just grieving the loss of Stella from this earth – we were grieving the loss of feeling the weight of her little body on our laps.  Her sweaty curls, cherub lips, painted nails, half open eyes, quiet and sometimes fading breath, her stiff legs that would lay crossed at all times and her big toe that would permanently point up as if it was flexed.  Gone.

 

As we pushed through what were some of the darkest days of my life, I stopped wondering IF I could do the Tour for Kids ride and decided that I could do it.  I would do it and that I would do if for Stella.

 

Before I knew it, I had convinced my sister-in-law (who didn’t need much convincing) to register for the ride with me.  Together  we proudly made up the Stella’s Stars Team.  As the months flew by and the ride was approaching, it was all I thought about.  One of the things that preoccupied my thoughts was our team jerseys.  I had been dreaming them up for months.  A very kind friend at work hooked us up with an amazing clothing company called Genumark.  Not only did they donate the jersey’s – they designed them too.  I never imagined that we would be able to capture Stella’s true spirit on a shirt but we did and they looked incredible.  Thank you Marc and the Genumark Team!

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On the day of the ride, my dad dropped Julia off at the start line.  He woke up before 5:00am on a weekend to get us there on time.  It was as if I was 10 years old again and he was taking me to a soccer tournament – he was adorable.  Julia and I were both excited and nervous when we got there and started to set up our bikes.  Julia attached Stella’s beloved puppet Red – who she called Fred – to the handlebars of her bike and we both adorned our bikes with pictures of our girl.  We were ready to go.  As we stood at the start line, we laughed about the fact that neither one of us knew what the hell we were doing or what we were in for.  There we stood, crammed in with 600 other riders – the energy was palpable.  From the microphone up at the front, we listened to a parent speak about their beloved child’s experience with cancer. You could hear a pin drop and suddenly, I could feel a vice grip on my throat.  I felt like someone was kneeling on my chest.  Listening to another parent’s pain, I was standing in a crowd of people and I too was the one with a photo of my dead child on the back of my shirt.  I’m part of this club now – a club that no one should ever have to be a part of.  The sunscreen that was on my skin quickly ran into my eyes that were already brimming with tears.  I took a deep breath, looked at Julia and I felt ready to ride for Stella.

 

So off we went, from Oakville to Waterloo.  116 km, 5hrs and 23 minutes of riding, too many hills to count, 3 rest stops later……and we were there.  Day one was done.  We made it – sore bodies and all.  I was proud of us.  Over the next three days, Julia and I would push ourselves more than we ever have in our lives.  We taxed our bodies beyond belief.  The hills were ridiculous and seemed never ending at times.

 

Each time I found myself struggling to push my way up a hill and it hurt so much that I didn’t think I could go any further – I pictured Stella’s little face. I thought about everything that she went through, everything she lost – and I pushed forward.  She didn’t have a choice in the matter – she had to lose her ability to walk and be anchored to the couch and watch her friends come over and run around playing with her toys.  She had to fight to talk only to let out nothing more than a squeak.  She had to give up her potty for diapers and she had to figure out how to swallow with a tumour strangling her brain stem.

 

All I had to do was ride a bike up a hill.

 

Each day of the ride brought with it new adventures for us.  It was truly amazing to be a part of such a moving and inspiring event and I loved having the chance to do it with my sister-in-law, whom I love deeply, at my side.  Her gentle spirit and quirky sense of humor are a true reflection of who she is and the reason why Stella found so much comfort in being around her.  Julia and I spent most of our time on the ride laughing at each other and ourselves and I feel forever bonded to her.

 

On the last night of our ride, at dinner, I spoke about Stella and about Camp Oochigeas – two incredibly important  stories to tell.  I was asked to speak about Stella months before the ride but I originally declined.  I was too nervous to speak about her for the first time publically, in an environment that was connected to my work.  The only other time I’ve spoken about her was at her funeral.  What if I broke down and couldn’t recover?  A friend talked it through with me and helped me get rid of my cold feet.

 

I came to the realization that I needed to tell her story.

 

I wanted people to understand how incredible she was and I needed them to understand what we lost.  So that night, I threw on a clean Stella’s Stars jersey, took a deep breath and locked eyes with the 600 riders in the audience.  I told them about my beloved curly haired mop top of a kid and the exquisite joy she brought into our lives.  They learned that she had a thing for physical violence, pigs and chocolate Tim Bits and that even though the tumour robbed her of almost all of her faculties one by one – Stella chose joy every time.   I explained her love of ice cream and that we made sure that she was able to eat ice cream for breakfast every day for the rest of her life.

You can watch the speech on YouTube here:

 

The next morning, on our way into the cafeteria, I was stopped every two feet by rider after rider on their way out.  Each one of them saying  “I just ate ice cream for breakfast and I’m riding for Stella today”.  At first, I thought that people were just being kind but as I entered the cafeteria, I saw 600 riders eating ice cream for breakfast!  Each one of them, with the appropriate amount of protein, carbs and fruit on their plates – right beside a big plop of vanilla ice cream.  In the servery, right beside the yogurt station, there was a big vat of ice cream sitting under a sign that read “For Stella”.  My heart was full and for a moment, it felt less shattered.

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Thank you Tour for Kids for honouring my little girl.

On the final day, I spent the last hour of the ride quietly crying on and off.  I kept envisioning the moment that I’ve spent the last year leading up to – crossing the finish line.  I’ve replayed this moment in my head many times over the past year and now it was finally within reach.  As we fumbled towards the finish line and it was finally in sight, Julia and I pulled out the green banner we made to carry across the finish line. “We Miss You Stella”, it said.  We tried to coordinate ourselves by riding just close enough together that we could each take and end of the banner.  After a few failed attempts and close calls with the graveled road below – a friend who has just a touch more skill than we do in the cycling department, came to the rescue.  With her help, we made it.  Pedaling towards the finish line, I felt weightless, just for a moment.  I wanted to yell “We did it!” at the top of my lungs….just like Dora.  The finish line was packed full of our family and friends who were all decked out in Stella’s Stars shirts.

 

As I stopped my bike and looked around, I could feel it – she was there.

 

We did it Stella.

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This ride was incredibly healing for me in ways that I never imagined.  Connecting with other parents – parents who have been forced to walk where I’ve walked and who know the excruciating hell that I know – made me realize that Mishi and I are not alone.  To all brave parents who reached out to me – thank you for sharing and thank you for listening.

 

I learned about a different kind of strength and perseverance.  I learned about the power of group of people coming together with the same goal in mind.  I learned about humanity and I learned about myself.

 

I rode for me – for my broken heart and for her.  I rode for Stella.  I will ride for Stella until I can’t ride a bike anymore.

 

Tour for Kids 2014 – here I come!

 

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First Day of School

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Back just after Stella turned two, I sourced out a person on Etsy.com that did personalized lunchboxes.  I hadn’t ordered it yet, but had planned on getting one for Stella the summer she was four.  It was going to be a Golden Girls lunch box with her name in sparkly purple on it.  $85 U.S., but worth it for her to have something truly original and truly Stella.  From the time she was born, I imagined walking her to school on her first day, picking up her friend Flora and parents on the way (they are in the same district), and standing back and crying  with pride and incredulity that my little girl was starting school.  I used to walk Stella past her local school when she was just a newborn in her stroller and gaze at the flagpole, thinking about that magical day in the not-so-distant future that Stella would march through those doors with her peers.  Class of 2027, I used to think. Now, along with so many other plans and dreams, this one has been broken and lay hemorrhaging on the ground.

 

No matter what I do, or how busy I try to keep myself, I am acutely aware that all of Stella’s peers are starting school on Tuesday.  I have avoided being around or talking to anyone for the last week because even though I know, I don’t want to know.  I want to act like a child and cover my ears, close my eyes and cry, “I can’t hear you!” at the top of my lungs.  Even though the voices I hear reminding me about the first day of kindergarten are coming from the inside, not from an outside place that I can shut it out.  This one hurts.  This, the first very obvious thing that Stella is missing.  I know that my friends will think of Stella as they drop their own children off at school, I know they are sad that she’s not there too.  Knowing that helps a little bit, but I still can’t help the tears from falling and my throat from hurting when I wonder for the millionth time why she isn’t here.

 

But on Tuesday, instead of having the day off work to walk my little girl to her first day of school; instead of proudly presenting her with her custom lunch box, and buying her a little knapsack; instead of having little jitters in my stomach for her, I will be going through it myself.

 

I have decided to go back to school.

 

It was something I have been thinking about for years, but like many other things, your logic gets in the way.  “We can’t afford it”, “I’m too old”, “I’m too tired”.  Then Stella got DIPG and logic went out the window.  All the excuses are still there— we really can’t afford it, I really am kind of old, I really do feel exhausted all the time— but excuses get you nowhere.  Stella gave me the courage to push past all the reasons I couldn’t go back to school, and look inside my own heart.  And my heart was telling me it was time for a change.  I thought long and hard about what I like to do, what makes me feel good.  Despite the myriad of choices I had before me, I kept being drawn to something with death and dying.  It had dominated my thoughts for over a year and a half, and continued to fascinate and challenge me.  So I thought. And I talked.  And I worked a little.  And I decided— I’m going to become a Funeral Director.

 

The news was met with raised eyebrows and forced excitement by most people.  I understand.  It seems like an odd choice at the outset.  I was encouraged to look at other professions…”Don’t you want to be a teacher/lawyer/nurse/physiotherapist/midwife?”

 

All those professions are wonderful.  I’m sure I would enjoy any of them.  But they don’t call to me the way mortuary sciences do.  I think everyone was worried about me—maybe this was a part of my grief process.  Maybe this was just something I thought I wanted to do because I missed Stella so much.  Maybe this was just my way of rebelling.  So, as part of the application to the program, I spent two weeks working at a Funeral Home.  Not just any Funeral Home, I went back to the one where Stella’s service was.  I figured if I wanted to make sure I could do this, I needed to make sure I could do it in the place that held the most trauma and memories for me.  So I went to the very same place that I had cried and shook and felt sick to my stomach in.

 

On my first day I was early, so with self-doubt ripe in my brain, I began walking up and down the rows of graves.  The voices of doubt that well-meaning friends and family had shared echoed in my head.  Was I crazy?  What the Hell was I doing here?  Just as I had almost talked myself out of going into the building, I noticed a white ribbon in the distance.  Narrowing my eyes, wondering if it really could be, I walked towards it.  And there it was.  A Stella Star, shining in the sunlight, hanging from a tree.  I looked around, stunned.  I didn’t even know what part of the cemetery I was in.  I fingered the star with my daughter’s name on it and smiled.  I felt in that moment that it was Stella, telling me to go ahead.  “Be fearless” she would have said with a smile.  There was no sign more obvious and significant to me.  So I smiled, took a deep breath and went in the big double doors of the Funeral Home.
For the next two weeks, I immersed myself in the world of death and funerals.  I did and saw everything and anything people were willing to share with me.  Grieving families, dead bodies, paperwork, music, food, “the freezer”, flowers.  And there, in the midst of death and sadness, I felt the most peace and happiness that I had since Stella’s diagnosis.  Halfway through my two week stint, I accompanied a woman and her son to the crematorium.  The same one my darling daughter had been brought to just a few months earlier.  I looked around the cold grey walls, and made eye contact with the same man who had worked the crematorium the day Stella went into the hot kiln.  I again wondered if I could do this.  As the new widow watched her husband’s coffin get pushed inside the retort and I pictured how Stella’s little coffin must’ve looked, she sobbed once and reached out blindly towards me.  I caught her and she stood there with me, her face buried in my arms.  She squeezed my hand and didn’t let go for a long time.  I felt a jolt of energy go through me.  This was what it was like to be there for someone in their rawest moments.  This woman didn’t know me.  She had likely forgotten my name and would never remember who I was if we ran into each other again.  But in this moment, in this time where she was most vulnerable, I held her up.  And she needed me.  I felt strong and useful.  I felt at peace.  I wanted to be able to do this.

 

Of course being a Funeral Director is a whole bunch of things…it’s being a salesperson, a psychologist, a support, an administrator, a scientist, an artist.  It’s something I think will be challenging and difficult.  But I also think I can make a real difference in people’s lives doing it.  I think about how the people that worked with us on Stella’s Celebration of Life helped us so much and allowed us to honour our daughter in a way that made us proud.  I want to be able to do that for other families.

 

On my last day at the Funeral Home, I told my mentor the story of the Stella Star and we went looking for it.  I went back to the place I had seen it, but it was gone.  I began to wonder if I had invented the whole thing, and started to feel a bit crazy.  Then we saw a white ribbon on the ground in the distance.  A closer look told us it had been chewed by an animal.  After a little search, we found the Stella Star lying on the ground by a tree, almost covered in leaves.  I laughed.  A squirrel had eaten the ribbon and dropped the star.  If I had started my time at the Funeral Home any later than the day I had, I might never have seen that Star.  So, obviously, it was meant to be.

 

And so, on Tuesday, instead of getting Stella dressed for the first day of school, I will get myself dressed.  Instead of walking her to school, I will hop on the bus and take myself.  Instead of having nervous butterflies for her, I will have them for myself.  And as I walk into that classroom, I will think about my little girl and how much she gave to me in her 3.5 years here on Earth.

 

I’m nervous.  I’m scared that I won’t be able to do it.  I wonder if my classmates will like me, or if they’ll think I’m old and nerdy (most of my peers will be 18!).  I wonder if any Funeral Home will want to hire me when I finish.  I am nervous about fainting or throwing up when I embalm my first body.  I am full of self-doubt and nerves.  But I’m also excited to start.  Proud to do something I really want to do in Stella’s name, and honoured to be entering such an important tradition.

 

So, happy first day of school to Arin and Ava and Flora and Noam and William and Eamon and Ethan and Nate and Declan and Rosie and Aurora and Lark and Ayden and all of Stella’s other friends.  And happy first day to me.  And Stella, who will be with me every step of the way.

 

“Education is not the filling of a pail, but the lighting of a fire”

-William Butler Yeats

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Sam and Hugo aren’t sure how they feel about my science lesson

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Swinging Sam!

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What would you have been, little girl?

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Aimee and I hung a Stella Star outside the front entrance of the school Stella would have gone too (on the chain link fence, under the tree just behind the black lamp)

 

 

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