Are you there, God? It’s me, Mishi.

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Are You There, God?  It’s me, Mishi.

Okay, so I totally ripped the title of this post off from that famous book, Are You There God, it’s me, Margaret…but I feel like it’s the right way to start, because this entry is about asking questions.

Maybe because we took the commercialism out of Christmas this year, I have been thinking a lot more about God and religion.  Instead of focusing on presents and rushing around and decorations and shopping, we just spent time as a family visiting and eating and enjoying one another’s company.  It was actually quite lovely and completely stress-free.  I think we may have stumbled upon the secret of getting through the holidays…get rid of the expectations, the formality and the focus on monetary things and you are left with a very basic and stripped down version of Christmas that leaves you feeling grateful, gracious and glad to be where you are.  It was truly wonderful!

But also having some free time reminded me that the original reason for the season, before the advent of Santa Claus and candy canes, was to celebrate the birth of Jesus.  So I watched a few Church services and let my mind wander to that side of the Christmas experience as well.  God and I have an on-again/off-again relationship.  Not for any particular reason, other than that I have wavered on my beliefs, the strength of my beliefs, and what I really think.

I’ve attended a variety of Churches at many different periods in my life.  I’ve tried Episcopalian, Presbyterian, Unitarian and United– I even went to Catholic Mass twice just to see what it’s like.  I was baptized in the Episcopalian Church on Staten Island, New York where my mother is from, and when Stella was 6 months old Aimee and I took her to Staten Island to be baptized at the same baptismal font as my sister and I, my mother and gradfather were all baptized at.  And, no matter where I go, I have found that I actually quite enjoy Church.  I like the ceremony of it, I like the music, I like listening to the sermons with a critical ear and furthering discussions about it in my own mind.  On boring days, I like counting hats in the audience or studying the stained glass windows, looking for the story embedded within.  But I’ve yet to find a congregation that was completely right for me, so I continue to hunt around periodically, not quiet able to put my finger on what I’m looking for.

When you are dealing with something as inconceivable as the slow and cruel death of your daughter, I think it’s only natural to want to find some sort of higher meaning and reason for your loss.  Since Stella’s diagnosis I have read every book I could get my hands on about dealing with the death of a child and overwhelmingly I have found that other parents seem to find their greatest relief and healing through religion.  To be blunt however, when you are the parent of a child who is going to die, reading that other parents found acceptance through belief in God is not all that helpful to me.  I am looking for some concrete and real coping methods, and somehow that solution rings hollow to me.  Maybe I’m just jealous. I really admire people who have an unwavering belief and faith in God.  I think it makes it easier to accept something like what we’re going through.  I think it is comforting to imagine them in “a better place” with God, in Heaven, or as an angel.  It must be endlessly comforting to believe without a shadow of a doubt that some higher power chose you to bear this burden and to live through this loss because of a greater lesson or greater good.  It probably dissipates some bitterness and jealousy you have towards the world if you think that you were meant to suffer and it makes you better in the end.  Over the last six months I’ve tried to find that peace and comfort with Stella’s cancer.  I’ve listened to all the people who tell me they pray for us and that God is watching over us.  I’ve watched some people try to “heal” Stella by praying over her and telling us to believe in miracles.  I want to be able to look to the sky and imagine that some omnipresent person is smiling down and guiding us in this journey.  Some days I can, other days the best I can do is convince myself that Stella came to be with us for a reason and that the randomness of life has simply hit us directly between the eyes.

I really wish that I could just believe, believe, believe, but I am in essence a fact person and I find many of the “facts” that have to do with God a bit questionable.  If you factor in the scientific proof regarding how the earth began, the evolution of man, etc. many of the stories in the Bible begin to sound downright fictional.  I guess that’s why faith is such an abstract concept to me.  It’s like I want to believe so badly, but something keeps stopping me.  Yet, when I feel the most hopeless and helpless, I always look to the sky for guidance as though there will be a message in the clouds.  Today Stella is sleeping quietly on the couch next to me and the sky is just one big, grey blanket covering everything with fluffly white snow just like the movies.  It looks cold and cruel outside, but it is still warm and cozy here on the couch.

This summer I was stopped by our elderly neighbour Rose.  Rose it probably close to 90 years old and has lived next to me my entire life.  She is Italian and speaks very little English.  It was maybe 9 weeks after Stella’s diagnosis and I was walking down the street with Stella.  Rose motioned to be wildly to cross the street, so I dutifully went to go see her.  She frantically started telling a story in broken English.  It was something about that she was “bleeding like a young girl” and was rushed to the hospital.  She said while she was lying there, not sure if she was dead or alive, she felt someone stroking her hair gently and when she looked, it was Stella.  Her eyes grew big as she grabbed my arm and said earnestly, “Mi-ch-e-elle.  She an angel.  It mean she an angel!”.  Rose had no idea about Stella’s diagnosis, nobody had told Rose she was going to die.  I remember standing there stunned, clutching Stella to my chest with tears prickling my eyes.  I wanted so badly to believe that she was right.  That Stella was an Angel who was sent to us to teach us and love us and be with us.  This story might be enough for some people, but I still waver in my beliefs.  Sometimes when I stare at Stella, at her perfect porcelain skin, her straight white teeth, her rosy cheeks, beautiful blue eyes and head of curls I do think she’s an angel…then she opens her mouth!  If she is an angel she is one with sass, attitude and a penitence for mischievousness.  I can only imagine the trouble she will get into with the other angels…

I don’t know God, I guess you and I still have some exploring to do.  I am going to try to go to Church again for a few months.  Someone recommended Eastminster Presbyterian on the Danforth.  I’m not sure if I’ll find what I’m looking for, but any measure of comfort is welcome at the moment.  In the meantime, I’ll just keep looking up at the sky searching for a little ray of light.  Or, when it’s cloudy, I’ll just find it in Stella’s smile.

Her Smile!


Christmas Fun


Is this the face of an Angel!??

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Christmas Gift

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Christmas Gift

 

I am a Christmas fanatic.  As soon as Hallowe’en is over and the stores replace Pumpkins with Garlands, I am ecstatic.  Christmas fills me with a lightness and joy like no other time of year.  I love the music that plays incessantly from every corner, I love the lights, the trees, the over-the-top tacky colours.  I love wrapping presents, watching “A Very Brady Christmas” on television and decorating the tree. I start shopping in September and by the first week of December presents are wrapped, labeled and organized by person under the tree. I decorate everything in the house, including hanging a singing Santa in the bathroom that climbs up and down the window blinds while you pee.  The more people comment on how tacky my decorations are, the happier I get.

 

One of the first things I thought about when Stella was diagnosed this summer was how I was going to get through Christmas—the happiest time of the year—without her.  Months ago, Aimee and I agreed to “cancel” Christmas.  We were going to ignore it completely, head to the Chinese buffet on Christmas Day and then the movie theatre and hide from everything to do with Christmas.

 

Then a funny thing happened…Stella lived.  Stella is still here for this Christmas.  In fact, Christmas Eve marks exactly 6 months since her diagnosis.  Half a year, a full fifth of her entire life.  Talk about a Christmas Miracle.

 

To celebrate that Stella is still with us, and that it is Sam’s first Christmas, we decided to do what we’ve dubbed “A Diet Christmas”.  We bought a tree and decorated it, but did nothing else.  No stockings hung by the chimney with care.  No buying gifts for ourselves, or anyone else.  No wrapping paper littering the living room.  No baking Christmas cookies.  No trolling the malls, taking in Christmas windows and finding the “perfect” gift for someone.  This lack of Christmas had left me with a feeling of emptiness.  Some people commented that maybe we should do “ultimate Christmas” since it will be Stella’s last, but Aimee and I just didn’t have the energy or desire to fake our way though Christmas Cheer.  And, more importantly, neither Stella nor Sam has any frame of reference for Christmas, so they don’t really care one way or the other.  So we’ve just ignored Christmas for the most part this year, although small pieces of it seep into our consciousness.

 

The last month for Stella has been quite good.  She has been stable, she has been happy, she has wanted to go out again.  We have made so many wonderful memories with her this last little while, and I realized this morning that her and Sam are the only things I want this Christmas, or any Christmas.  When I think about the best gifts I have ever been given, it’s never things, it’s always experiences.

 

Memories.  Shared laughter.  Friendships.  Trips.

 

I looked under the Christmas tree this afternoon and although there were no brightly wrapped gifts with my name tucked under the branches, I realized that in these last 6-months, since my world shattered into a million pieces and sliced my soul in half, I have experienced the greatest gifts in the world.  Through the intense pain and sadness, there is joy and hope.

 

The gift of clarity.

This is a gift in which all of the things that don’t matter have fallen away like fall leaves.  When fall comes, the branches are left naked and bare but there is no confusion as to which way they bend or the colour of the bark.  Through Stella’s cancer, I have been able to truly understand what is important in life.  I have seen who in my life has stepped up, and who has slunk into the shadows.  I have let go of all the things that used to clutter my life—that seemed so important, like getting A’s in school, spending $100 on a haircut, being inflexible about cleaning the kitchen every single night, instead of playing with Stella.  I no longer get annoyed when I get in the “wrong” line at the grocery store.  I wear clothes for comfort, not status.  I would rather read books to Stella than check Facebook or write emails.  I look in the mirror and don’t recognize myself or my life, but like that tree forced into revealing itself, I know that whoever I am is the most genuine person I’ve ever been.

 

The gift of time.

Time is such an abstract concept when you think about it.  An arbitrary organization of relatively meaningless ways to organize our lives that causes unnecessary stress (“I need to be married before I’m 30”), unrealistic expectations (“Why doesn’t she have any teeth yet?  She’s 6 months old…when did Jane first roll over?) and unbelievable pressure (“By noon Sunday we have to grocery shop, bring the kids to swimming lessons and host a brunch for 30 of our closest friends…).  The day that Stella was diagnosed, time stopped for Aimee and I.  Our days were not measured in anything tangible any longer, except perhaps medication times.  Now I am in no rush for anything.  As a family, we can take leisurely walks to Sobey’s and spend 10 minutes staring at the lobster tank when we get there.  We can take family naps in the afternoon while Dora drones on in the background.  We can take off to Great Wolf Lodge on a Tuesday afternoon and stop at the park on our way there.  It isn’t just the gift of “time” that we have been given, it is the gift of enjoying that time.  Without work, school and social pressures, we have no obligation other than to eat ice cream and try as hard as we can to catch a fleeting glimpse of one of Stella’s beautiful smiles.

 

The gift of Stella and Sam.

When Aimee and I decided to be parents, we went into it with the same optimism and feeling of entitlement that I think most young people go into it with.  We had no reason to believe that life would be anything but full of playmates, soccer games and bed time snuggles.  But right from the beginning, Stella never followed what she was “supposed” to do.  She didn’t listen to me.  She fought me on everything.  She threw food at the walls, coloured on the fridge, hit her friends, wriggled away when I tried to kiss her and instead of reading her books, ripped them.  More than once I would show up at work in tears and ask my friend Jackie what on earth I was supposed to do with this kid.  But when Stella got diagnosed, and I stopped having expectations for her, I got to see her in a whole new light.  I learned to appreciate her spirit, her independence and her huge amounts of energy.  When I stopped fighting Stella and started listening to her, I fell in love with her…her, not the vision of her I once had.  Because Stella gave me that gift, right from the beginning Sam has gotten to experience me as a parent who is not trying to mould him into my vision of what a son should be, but a parent who wants to get to know him for whoever he is.

 

 

The last few weeks with Stella have been very special.  Without knowing what each day will hold, we have no choice but to enjoy each small miracle we are given.  Each hug from a friend, each smile from our children, each laugh shared with the people we love most in the world.

 

So this Christmas, gifts may not come under the tree, but they are here and they are more special and magical than any other year.

 

Happy Holidays.

 

May you make some memories that last a lifetime.

 

THIS LAST WEEK IN MOMENTS

Friday December 16- Distillery District Christmas Festival


Saturday December 17- Walk to Sobey’s for Avacados


Sunday December 18- Stella meets Santa (thanks Farrugia’s)


Monday December 19- Riverdale Farm


Tuesday December 20- Sam and Xavier Hang Out


Wednesday December 21- Dinner at Arin’s House


Thursday December 22— Dora comes to visit (thanks Sarah Nelles!)


 

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Holding Stella (By: Aimee Bruner)

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Holding Stella (By: Aimee Bruner)

 

I remember the first time I held Stella in my arms as if it was yesterday.  It was at about 4:07pm on April 18, 2009, a few minutes after she burst into the world.  She was tightly wrapped in a pink blanket and her strawberry blond hair that stopped my heart, stuck out from underneath the tiny hat she was wearing.  From the moment that I touched her and felt the weight of her small body in my arms, I knew that I was holding the most incredible gift I would ever have.  This, up until Sam entered the world, by far, was the proudest moment of my life.  Now, they both share that moment.  As a baby, Stella never liked being held in that “still” and “cozy “kind of way all new parents dream of.  If you were going to hold her, she had to be facing out and you as the “holder”,  had to be standing up, bouncing around the room like the energizer bunny.   As she got older, the only way you could get her to sit still in your lap was to bribe her with some kind of food which she would  shove in her mouth just before she leapt off your lap.  At night time, Stella always fell asleep in our arms as she drank her bottle (yes, a habit that we as naive, new parents somehow started and didn’t know how to stop without many “painful” sleep training sessions).  Although it took what often felt like an eternity for her to finally relax enough to stop fidgeting and give up the fight against sleep, eventually her breathing would change and the warm weight of her body started to feel like a blanket on your lap.  This is how you knew that it was then safe to squeeze her tightly and kiss the curls on top of her head without waking her up.  For as long as I live, I will never forget that feeling.

 

I remember my mom telling me once that she secretly used to find a weird sense of comfort when I was sick as a baby because it was the only time that I would lie happily and still in her arms.  Over the last 2.5 years, I found myself feeling the same thing with Stella.  The only time she wanted to be held tightly against us for an extended period of time was when she was sick with a cold.  On these occasions, Mishi and I would sit as still as possible (so as to not to disturb her enough to bring an abrupt end to such a peaceful moment), wrap our arms around her and hold on for dear life.  As she got older, she started to want us to sit and read books to her on a daily basis.  No matter how much she loved the book, she never sat still in your lap.  I’ll never forget her wiggly little body, moving forward, backward and from side to side constantly.  She never stopped.  It became a sporting event just to try to keep her balanced and from falling off your lap.

 

Stella always preferred to be held by Mishi.  If Mishi was anywhere in the house, Stella would “demand” to be with her rather than to sit or play with me.  Although frustrating at times, for the most part, it didn’t bother me.  Stella and I have a special bond that only the two of us could have and I know how much she loves me.  That being said, I would be lying if I didn’t  say that I liked it when Mishi was off doing something and it was just Stella and I.  When it was just the two of us, she happily played with me or “sat” in my lap to read books.  Those moments were always precious to me  and I remember every single one of them.  Just before Sam was born, Stella started wanting ME to hold her on my lap.  At first, it only happened  a few times a week but it made me happier than I’ve felt since late June.  Since Stella’s diagnosis, on particularly hard days, I used to think that I would end up having to sit on the “sidelines” and watch the last few months of my child’s life go by without getting to hold her in my arms.  A selfish thought I know, but one that hovered over me as I cried myself to sleep too many times to count.  I now get to split the time of holding Stella with Mishi every day.  This may have a lot to do with the fact that Stella sees me holding Sam and wants a piece of the action but part of me also thinks that Stella is giving us both what we need right now – for Mishi, it’s a break from the weight of the bittersweet pressure of being the only one to hold Stella, carry Stella and be so intimately and physically tied to the catastrophic reality of what is happening to our child.  For me – it’s the gift of feeling so physically and emotionally close to her that it’s impossible to decipher where our two souls begin and end.

 

Stella, I will be forever grateful for this.

 

Now, most of my days are spent wrapped up in a warm heap of blankets with Stella.  We don’t read books the way we used to but we spend our time hugging and pulling each other close.  I feed her avocado and wipe ice cream from her face.  She pinches my cheeks when I’m having a conversation with someone else in the room and not paying enough attention to her and she wiggles her torso around while dancing to the intro song to Dora.  We have tea parties with her favourite puppets and pull the blanket over our heads to hide from one another.  Every day, usually around 1:00pm, her head starts to sweat.  This is the first sign that sleep is setting in for her nap.  As she tries to fight it, her already laboured and almost non-existent speech gets close to impossible to understand and as it used to when she was a baby, her breathing changes as she falls asleep.  This is when I want to freeze time.  I know that it’s not an option but I want to do it anyway.  I’m terrified for the day that I don’t get to have her on my lap but I work really hard not to allow my thoughts to linger in that space for too long.  Instead, I try to hold on tight and freeze the memory in my mind.  I want that feeling of her warm little body nestled into mine, my face buried in a heap of her sweaty curls and the grip of her grown up “toddler” hand around my thumb, to be one that I can carry with me for the rest of my life.

November, 2011

June, 2011

July, 2011

 

August, 2011

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Ghost Town

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Ghost Town

 

A few days ago I was tidying the house, trying to get a handle on the clutter and mess that constantly creeps into every surface.  There is a complex cobweb that lives in the lower corner of one of our front leaded glass windows; it’s almost a piece of art.  In our attempt to clear out a corner of the living room to make room for a small Christmas Tree, I decided to put a few things in the shed out in our backyard.

 

As I walked across the grass, my boots crunching down on the thin layer of frost on the grass, I was suddenly struck at what a ghost town the backyard looked like.  Stella’s slide set sits under the tree where we moved it in the hot days of summer so it would be shaded and not get too hot for her to slide down.  I remember so vividly how proud she was of herself in early spring when she was able to climb up the ladder and whoosh down the slide by herself.  “WHEEE!” she always exclaimed joyfully as she flew off the end.  I remember when Arin and Flora both came over one evening and the three kids were falling over one another trying to get up and down the slide, giggling and chasing each other around the green grass.

EARLY MAY, 2011

 

Stella can’t sit up unassisted anymore.

 

In the corner of the backyard sits Stella’s playhouse, built for her by Poppa Noel in May of this year.  It’s an awesome playhouse with a cute little door and a stained glass window.  Inside is a toddler sized wicker couch and a cradle with a pillow and tiny mattress.  I peeked through the window and saw Stella’s stuffed giraffe lying forgotten in the cradle, it’s eyes glazed and foggy.  When my dad first finished the playhouse Stella was so excited she refused to come inside with me after daycare when I needed to go to the bathroom.  I remember I left her in the playhouse and when I came back outside a few minutes later, as I rounded the corner I could hear her loudly singing “Itsy Bitsy Spider” to herself.  I opened the door and said “What are you doing!?” loudly and she dissolved into giggles, running forward and pushing the door shut with both her chubby toddler hands.  She loved being in that house so much she sometimes made me bring the potty outside so she could pee in the playhouse.

JUNE, 2011

Stella wears diapers now and  is so weak she needs me to manually help her with bowel movements.

 

Her raised sandbox is pushed against the brick wall that is the outside wall of Sam’s bedroom.  It is plastic and was once brightly coloured, but is now faded from being outside for two summers and a winter.  Stella and Arin used to get into sand fights all the time there.  Arin liked to pour the sand on his head, which when your hair has oil in it, makes seem as though it’s glued in.  One time I turned my back for just one minute and when I turned back they were freely dumping buckets of sand on one another’s heads and crunching contentedly the dirt sticking to their lips.  Ugh.  No matter how many times we would say, “sand stays IN the sandbox…” there was always piles of it down Stella’s shirt and in her little socks.  Aimee loves to BBQ and so we would have lots of family dinners outside.  Stella loved hamburgers the best, smothered in ketchup that dripped down her chin.  I have about eighteen t-shirts with ketchup stains down the front.

SANDBOX WITH FLORA, MAY 2011

Stella can only eat soft foods now.  Applesauce, mashed potatoes, mushed avocado.

 

When I opened the door to the shed, Stella’s bike was the first thing I saw.  She got the bike as a gift for her first birthday from Grand Pa John and Nanny Sandy.  When she got the bike, her legs were way too short to hit the pedals, but she liked to sit on it and we would push her.  She actually loved to put on her helmet and go around and around the block by our house.  This spring, her legs could hit the pedals and we would often take the bike to the park near our house.  Stella would sometimes refuse to get off her bike because she loved it so much, and instead of playing at the park would just pedal round and round in circles through the dry wading pool.

STELLA AND GRACIE, JULY 2011

Stella’s legs don’t move anymore.  They are stiff and weak.

 

Her wagon sits underneath the bike, bright red and full of memories where we went to our friends house, to the park, to the zoo, to cottages.  She loved sitting in the wagon and inviting as many people as possible to join her.  We could fit up to three kids in it!  She liked us to go fast and would laugh out loud when we said, “faster!” and ran up the dirt roads by the cottage to get to the ice cream stores.  She always looked like royalty peeing over the sides and observing everything.  “Look Mama, birds!” she would call out, pointing.  Then we would sing her favourite song, “You Could Have Been a Rutabega,” and wave our hands back and forth saying a loud, “HELLO!!!” to every animal we met along the way.

Stella doesn’t sing anymore.  She can barely make any noises at all.

 

The basement playroom is the same as the backyard—like a snapshot of a time long gone.  It’s as though someone has it set up and it’s just ready and waiting for a kid to come play in it.  Her craft table sits with two chairs at the ready, markers and crayons lay at the foot of one chair where they fell months ago.  She was so good at writing.  As soon as she could hold a pen, she held it properly—with her thumb and forefinger, and did page upon page of neat little lines.  She loved painting…although her foray into art often led to a tantrum that culminated in her throwing a paintbrush dripping with paint against the wall.  Stella’s beloved toy kitchen, a Christmas gift from Tutu Marilyn last year, is still littered with plastic food and a toy teapot the red paint still shiny and new.  Two months ago I made Auntie Andge take all the “mobility” toys and shove them in a dark corner of the attic so I didn’t have to look at them anymore.  They are out of sight, but I can still see their shadows in the playroom, marking the days when excitement bounced off the walls and filled the air with laughter.

APRIL 2011

Stella can’t hold a pen anymore.  Or a paintbrush or spoon.

 

Her bedroom looks more like a storage room than the little girl’s bedroom it once was.  The bed is removed, most of the toys that littered the room and the books from the bookshelf are now stored away in nondescript garbage bags in the attic marked simply, “Stella’s Room 2011”.  Now, instead of lego, the middle of the floor features a cardboard box filled with syringes, cotton balls, medications and a sharps container.

 

Stella doesn’t come here anymore.

 

The term “Ghost Town” always made me kind of sad.  It was hard to believe that entire communities could just disappear and leave behind only useless objects to tell the stories of the vibrant men and women that once walked there.  I remember reading in a book once that a Ghost Town is a community that has faded greatly from its peak and is now just a shadow of its former self.  Seeing all of Stella’s things sitting her unused, their stories silenced by the cancer that is taking Stella away from us, makes me wonder if Stella is just a shadow of her former self.  She has lost almost everything.

 

But no.  It’s not really her.  It’s us.  WE have lost almost everything about the daughter we once had.  She has not lost herself.  She has held onto her spirit, her smile, her stubbornness, her ability to make others laugh.  She has not abandoned her ability to love us unconditionally, hug us, challenge us and confuse the Hell out of us.

 

She is not a shadow of her former self, I am.

 

Parts of our house may be turning into a physical Ghost Town, but the will to live life fully, to love one another wholeheartedly and to smile even when you want to cry means that there is still a vibrant community living here.

 

Not a Ghost Town exactly, just a town who has reinvented itself to focus on love, beauty and life instead of things.  But it still hurts to see all those objects forced into stillness by a horrible disease.

NOVEMBER, 2011

 

 

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WHY? (By: Auntie Heather)

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WHY (By: Auntie Heather)

Why does DIPG exist?
Why does it take so many innocent children?
Why is there no cure?
Why is there no hope?
Why is the only option death?
Why is this happening to sweet, innocent Stella?
Why is it slowly taking away her abilities?
Why is she no longer able to walk?
Why is she no longer able to talk?
Why is she losing her ability to see?
Why is this happening to our family?
Why is she going to be taken away from us?
Why will we have to live without her?
Why am I still in denial?
Why is life so unfair?
Why isn’t God answering my prayers?
WHY?

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