One Day At A Time

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Christmas has come and gone.  It was a whirlwind of food, bright wrapping paper, music, children chasing each other in circles and laughter.  Even though she wasn’t here physically, Stella was everywhere.  There were stars all over our Christmas tree, representing our little girl.  We set a place for her at the table for each Holiday meal, a plate with her photo and a lit candle.  Her stocking hung with the other kids on the mantle and we decorated her tree at Riverdale Farm.  Like most other days, there were moments of laughter and fun and moments, when the kids were ripping into their gifts, that instead of feeling happiness I felt a raw ache in my chest as I looked vainly for red curls in the crowd.  We lived in the present, we remembered the past, and we mourned both.  There were nights when Aimee and I sat on the couch together and cried quiet tears of pure heartbreak.  There were other times when we laughed wholeheartedly at the antics of the boys, or each other.  As expected, it was a mixture of happy and sad flashes woven tightly together in one big blanket of moments.

As we muddled through the holidays, I was especially grateful for all the people who thought to text or send a card or an email saying they were thinking of Stella and us.  On the DIPG website that I belong to (www.dipg.net), some bereaved parents talked about how no one acknowledged their children at all over the holidays’, and how much it hurt.  I am so grateful to have a group of family and friends (including blog followers!) who keep us—all of us— in their thoughts and reached out to let us know they were thinking of our family and the missing red-headed girl whose laugh still rings in my ears.  It’s funny because there are so few people who read this blog anymore, yet those that continue to follow are faithful and loving and generous with their comments and support.  Most of our family and friends don’t even read it, but those who do mean a lot to us because you understand that this journey is far from over.  Stella is gone, but we are just beginning to figure out how to do this life without her.  The story of Stella, her life and death, is far from over.

It occurred to me over the last few days how many strange decisions that bereaved parents need to make around the Holidays.  For example, when we get our annual “personalized” Christmas ornament with family names on it…do we include Stella, or not?  When we sign gifts we are giving to people, do we put “Love, Aimee, Mishi, Sam and Hugo”, or “Aimee, Mishi, Stella, Sam and Hugo?”.  It feels so wrong to not put her name on things, yet she is gone forever and we need to somehow acknowledge that as well.  Do we put anything in her stocking?  What about toys and books? As the boys brought home presents from their respective grand-parents home, we realized we needed to thin out some of the things they don’t play with anymore.  Some of Stella’s toys that they have outgrown. What do we do with them?   It hurts to give them away— to give away objects that she once touched, and that we have memories of her playing with, but we can’t keep everything.  And photos.  Stella’s face is plastered on every wall and surface in our house.  But we also have photos of the boys now, more and more of them, that need a spot as well.  And though we want, and need, Sam and Hugo to know their sister through us, we are also conscious of the fact that we need to celebrate their accomplishments and personalities separately from her— not just compare them to Stella.  Because we miss her, we are constantly trying to find little pieces of her in Sam and Hugo.  A certain look, a certain way they say a word, a certain dance move.  We delight in saying, “Oh my gosh, remember when Stella did that”…”Wow, when he makes that face he looks SO much like Stella”…”Stella never would have let us put that sweater on her…” etc. etc.  But at some point, they will move out from under her shadow.  They will move past the stages she was in and he comparisons will not happen anymore.  Both because they can’t and they shouldn’t.  I wonder if we will lose a little bit more of her when that happens.  Already Sam is almost the exact same age Stella was at diagnosis.  She was 26 months, 6 days old when DIPG became part of our vocabulary.  Today, Sam is 26 months, 7 days old.  From here on in, we are like new parents, exploring and watching what it’s like to have a “normal” 26 month old, not one saddled with a fatal diagnosis.

There is both sadness and joy in having Sam reach this milestone— the age Stella was when her future was snatched from underneath her.  Often when I see Sam and Gracie playing together, I wonder how different things would be if Stella were still there.  Would it be Stella and Gracie teaming up against Sam?  Now Sam and Gracie play together and laugh and chase each other, with little Hugo always bringing up the rear and trying to catch up.  I wonder if Sam would look at Gracie with the same complete adoration, and if Gracie would have as much time and energy and love for her little cousins if Stella were still here, her partner in crime for everything.  I wonder how we could ever live without our sweet little Hugo, smiling his way through life with his easygoing personality and love of books and hugs.  I wonder what this next stretch of our life will be like— where (we hope), we will get to the stages we just missed with Stella.  Soccer and ice skating and first day of school.  I wonder what it will be like to parent through these next stages.

Even now, so many months after Stella’s diagnosis we are still not sure what we are doing.  Every day brings a new challenge, a new emotion, a new thing for us to puzzle through and figure out.  But we will.  One day at a time.

 

Yesterday….Today…..Tomorrow  

(Poem that preceeds most AA meetings in Toronto)

There are two days in every week about which we should not worry, two days which should be kept free from fear and apprehension.

One of these days is Yesterday, with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed beyond our control.

All the money in the world cannot bring back yesterday. We cannot undo a single act we performed; we cannot erase a single word we said

 Yesterday is gone.

 The other day we should not worry about is tomorrow, with its possible adversaries, its burdens, its large promise and poor performance. Tomorrow is also beyond immediate control.

Tomorrow’s sun will rise, either in splendor or behind a mask of clouds, but it will rise. Until it does, we have no stake in tomorrow for it is as yet unborn.

This leaves only one day today. Any man can fight the battle of just one day. It is only when you and I add the burdens of those two awful eternities.

Yesterday and tomorrow, that we break down. It is not the experience of today that drives men mad.

It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow will bring.

Let us therefore live but one day at a time!

Stella’s Tree at Riverdale Farm, all dressed up for the Holiday’s:

IMG_2899Stella’s Spot at the Christmas Table:

IMG_2959Christmas Chaos at Nanny and Grand-Pa’s house:

IMG_0681

 

Energetic boys! (Sam, Xavier, Hugo):

IMG_0558Sam and Hugo get doll strollers for Christmas:

IMG_0647In 2010, Stella and Gracie got strollers for Christmas too:

P1020866

 

 

 

 

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Christmas Crap

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Christmas Crap 

Christmas is over and it was about as awful as I’d imagined.

 

Both the boys were terribly sick with pinkeye, which meant a trip to the after-hours clinic, days of eye drops and whining, and long sleepless nights.

 

Auntie Angie ended up in the hospital with an infection that made her sick as a dog for days.  She was released on Christmas Eve, but was sick again by Boxing Day.

 

Catherine Porter, our beloved friend/Toronto Star journalist, fell jogging on Christmas Eve and was banged up enough to spend the day in the local Emergency Department.

 

I got into a fight with my mother on Christmas Eve that included yelling, tears, some very loud door slamming and an extremely dramatic, “Merry Christmas Mom!” as I stormed out (things were patched up by Christmas morning).

 

Sam, Nanny, Auntie Angie, Poppa, Tutu and I all got struck down with some kind of stomach virus on Boxing Day.  It left me retching in the basement all night while Aimee juggled the two (sick) boys upstairs from 3am onwards.

 

The flight to New York that DeeDee, Uncle Tristan, Hugo and I were scheduled to go on yesterday morning was cancelled after we had already gone to the airport, checked our bags, cleared customs and waited in the airport lounge.

 

But none of these things made Christmas awful. This is just the eye rolling, “man this sucks” kind of stuff that is frustrating, but pretty harmless.

 

What was awful about Christmas was that Stella wasn’t here.  But Stella hasn’t been here in 68 days and each of those days has been equally awful.

 

This year, Stella was well represented at our festivities.  On Christmas Eve, Aimee and I took the boys to Riverdale Farm.  We visited her tree and bench then took Sam and Hugo in to see her beloved pigs.  We ran into a friend who was there with her two young sons as well, and it was nice to have someone to share stories of Stella with as we wandered around the farm.

 

At each Christmas Celebration Aimee and I attended (there were four because both our sets of parents are divorced), an extra place was set at the dinner table and a candle was lit to represent where Stella should have been sitting.

 

Gracie made a gift for her Stellie (a playdoh ornament in the shape of an “S” she lovingly painted, and my sister Heather put together beautiful little star-themed gifts for a bunch of people that included mugs painted by Stella a year ago, pictures, star ornaments and other thoughtful little Stella-inspired touches.

Stella’s name was mentioned in all the prayers that were murmured over lavish meals and her smile gazed down at us from each Christmas tree.  It was obvious that she was on everyone’s mind, and it was nice.

 

But I think there is a bit of a misconception that times like Christmas are the hardest, and that’s simply not true.  Everyday is hard.  It’s not just the “special” times that are difficult; it’s all the in-between times too.  Not having Stella dancing around the Christmas tree is no harder than not having Stella dancing around the backyard. In fact, sometimes days like Christmas are a little bit easier because there is an awareness from people that it might be difficult and so you get lots of voicemails, text messages, emails and support.  Often, it’s the normal days when everyone else is off at work or school, busily cooking dinner for their families and planning weekend trips to the zoo that are the most difficult.  Taking Sam and Hugo for annual Santa photos without Stella was sad, but we have cried a dozen other times for things far more inane, but just as painful.

 

We cried when we watched Gracie and Sam chase each other around the living room.  Our hearts can clearly see the space between them that should have been occupied by a running Stella, giggling and shouting just as loudly.

 

We cried when we let Sam loose in the Science Centre, and noticed how he is a bit timid with the bigger kids. He is shy and clings to our legs.  We let our minds imagine what it would have been like for him if his big sister had been there to lead him around, and protect him.

 

We cried when we signed “from” stickers on a pile of Christmas gifts.  It feels funny to not put Stella’s name on them.  I’ve started putting all the presents from “Hugo and Sam” or “Stella’s Family”.

 

We cried when the first snow came and buried Toronto.  Aimee and I looked out the window and saw kids dragging sleds up the street, mittens hanging down, hats flopping, and wished out loud that Stella was here, diving into the snow with abandon and glee.

 

It’s hard to find a happy space.  When we remember the past, it makes us sad because we have only a finite amount of memories, photos, video clips to keep mulling over.  When we live in the present, we keep finding things that we wish Stella was here to see and experience.  When we look to the future, it seems unbearably long without our girl.  So where do you find the joy?

 

Well, just like grief, which hits at random times (like in the grocery store when you turn a corner and come face to face with a pile of avocadoes), joy comes at random times and unexpected places as well.  Like seeing that a stranger has decorated Stella’s bench in Riverdale Park for Christmas, or watching Sam fall in love with one of Stella’s old stuffed animals.

But joy doesn’t come raining down on us very much.  More often than not, we need to go looking for it.  I haven’t lied on this blog thus far, and I don’t think it’s time to start now so I want to tell you that every single day is hard.  Aimee and I are grateful a million times over for all the incredible things that we have— wonderful families and friends, a cozy little house, enough money to pay the bills, two healthy and thriving little boys, but being grateful for what you have doesn’t take away the sting of missing what you don’t have, which for us, is Stella.

 

Beautiful, funny, precocious, curly top, giggling, blue-eyed Stella.

How can she really be gone from this earth forever?

It’s still unfathomable most of the time.

 

I heard someone say in an interview once that you can’t choose what life throws at you, but you can choose how you react to it.  I keep repeating that to myself because sometimes the sadness and grief feels so overwhelming I don’t want to move forward.  Moving forward means moving away from Stella, and the thought is blindingly painful to contemplate.  So I need to choose each and everyday how I will react to what life throws at me.  Aimee and I make a choice each and everyday to get up and live our lives, even though we know that inevitably we will be splashing through puddles of pain and sorrow as we walk through the day.  We never know when we will find moments of happiness, but we know for certain that each day will bring sadness.  We choose to get up anyway because we love our lives, we love our sons and we want to feel happiness again someday.

 

Every day we actively search for joy.  I have found that it comes from within.  No one makes you joyous; you choose to be joyful.

 

Like Stella.

 

Joy.

 

Stella Joy.

 

 

Visiting Riverdale on Chrstmas Eve:

The boys excited for Christmas:

Gracie pushing Sam on the swing, Christmas Day:


The table at Tutu’s, set by Gracie: 


Hugo and Sam, ready for Christmas:


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Holiday Letter

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Christmas Ornaments- Stella, Sam, Hugo’s footprints for their respective first Christmases (2009, 2011, 2012)

Holiday Letter

Yesterday was December 22.  Two months since Stella died.

On this day, Aimee and I were lucky enough to have a Holiday Letter published in the Toronto Star Newspaper (December 22, 2012 page A3).  This was made possible by Catherine Porter, and we are very grateful for the opportunity.

Happy Holidays to everyone, may you find peace this season.

You can read the letter on the Toronto Star Website here:

http://www.thestar.com/news/gta/article/1305992–stella-s-moms-urge-readers-to-help-each-other

OR, I copy and pasted it here:

Dear Star Readers,

We haven’t met most of you personally, but you know all about us. Many of you have taken the time to send emails telling us how much you cried over the death of our daughter, Stella Joy, and how much you grew to love her. That has meant a lot to us: we had agreed to let journalist Catherine Porter join us on the terrible journey of watching an aggressive brain tumour kill Stella because we wanted as many people as possible to meet our spirited girl in the short time she had left.

We had no idea how long the journey would be, what it would truly mean, or the people it would include. It became so much bigger than us.

Many of you have said that you are in awe of our parenting and courage in accepting Stella’s death sentence. We do not feel brave or special. We are normal, unassuming people who live in a modest bungalow in East York. We bicker about laundry, we watch bad Reality Television, we get frustrated in traffic.

There is nothing extraordinary about us as people or parents, other than the fact Stella was one of the few, unlucky children diagnosed with diffuse infiltrative pontine glioma (DIPG).

There is nothing extraordinary about the decision we made to accept Stella’s death, other than the fact we had to accept it at all. The only treatment offered was six weeks of radiation, which may have prolonged her life but would have reduced the quality of her life in the interim.

We wanted her to live like a regular toddler, not a sick kid.

What is extraordinary, however, is how many people Stella’s story reached and how an entire community mobilized to ensure she lived the best life possible.

We are amazed at how much of a difference Stella was able to make during the 3 ½ years she was alive, and then how very big — almost mythic — her life has become in the telling and retelling of her story.

But at the end of the day, she was just a little girl, and we were just her parents. Countless people have told us that reading Stella’s story in the Star changed them. We hope very much that’s true. But any life-changing moments that people have experienced, any perspectives that have been gained, any joy that has been found, didn’t happen because of us. We didn’t do it. Catherine didn’t do it. Stella didn’t even do it. What did it was the openness and generosity of all the people who learned about Stella’s story and decided to do something in their own lives, or someone else’s, to make it better.

We didn’t change the world. The world changed us.

True change takes a lot of work and a lot of time. It happens almost unconsciously — when you no longer have to think deliberately about something, but it is just integrated in you. We are still working to change — to live more purposefully, to find joy in the small things every day. We are not there yet.

Many of you have asked how we’re doing. There is no real answer to that question. We miss Stella with our whole hearts. We just returned from a 10-day trip to Hawaii. Just the two of us — we left Stella’s two younger brothers, Sam and Hugo, at home. It was strange being alone. But we needed to sleep and weep and retreat. It was lovely and weird and spiritual all at the same time. We felt Stella all around us. We could hear her unmistakable giggle every time a bird swooped down towards Aimee’s nachos by the pool. We saw the colour of her hair reflected in the sunset over the ocean. We felt her soft kisses on our cheeks from the wind when we stood at the lip of a volcano, 10,000 feet up.

We laughed when we remembered her wearing ugly brown crocs all last summer. We cried when we left behind a commemorativemetalStella star in a national park, and when we wrote her name in the sand. We felt our hearts soar and break daily.

After more than a week in the sun and heat, it was a bit surprising to come home and remember that the holiday season is upon us. We were greeted with two 7-foot inflatable holiday decorations on our lawn (a Santa and a reindeer). It was Grandpa John’s idea of a joke. He knew they would horrify Aimee, and they did.

But more important, he did it for Stella. He knew that she would have loved those things. She would have pointed, laughed gleefully and tried to knock them down. We’re quite certain they would have been punctured long before New Year’s. So we agreed to leave them up — because they make us think of Stella. In the absence of having Stella with us physically, we are working to find ways of keeping her in our lives and consciousness.

People have also asked us what they can do to help us, to make a difference, to remember Stella. It took us a while to figure out the answer to this question. As a family, we decided on a few concrete things — decorating her memorial tree outside Riverdale Farm, lighting a candle on the Christmas table for her. But, more broadly, we think the best way to honour Stella would be to reach out to others the way you have reached out to us.

There is grief and sadness and sickness and fear on every block in this city. How amazing would it be to extend friendship to that new co-worker this season, or to call your boss whose husband died three years ago, or to shovel the sidewalk for the lady with chronic back pain who lives around the corner.

Or just send a quick email to someone to let them know you care.

Like many of the words we use today, the roots of the word “community” are Latin — cumwhich means together and munus which means gift. That is what we hope Stella’s ultimate legacy will be this holiday season and beyond — the gift of people coming together. What an incredible mark on the world that is. For all of us.

Thank you for your emails, your support and mostly, for loving our daughter. Stella would have told you proudly, “I don’t like you,” and then giggled loudly.

Sincerely,

Aimee and Mishi

Two weeks ago the Star published an intimate three-part series in print and online on toddler Stella Joy and how she and her family dealt with her shocking diagnosis. Read the seriesabout Stella online. Catherine Porter kept a diary as she chronicled Stella’s last year. The eRead Stella is available through stardispatches.com. Readers can subscribe for $1/week, or purchase single copies for $2.99 at starstore.ca.

 

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A Christmas Smackdown

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Christmas Smackdown

 

I’ve never actually been physically beaten up before— unless you count the fights I had with my sister when I was a kid and we would yank each other’s hair and chase each other around the house, more to cause fear than actual pain.  Although I did throw a fork at her head once.  But I’ve seen boxing matches, and it always amazes me that these men and women get punched repeatedly in the guts and faces and keep getting back up, only to be punched again.

 

Since returning from Hawaii, that’s exactly how I feel— like I keep getting knocked down by grief, then I get back up again only to get sucker pummeled again.  I feel bloodied and bruised and exhausted.  The Christmas season is kicking my ass.

 

Catherine Porter’s newspaper articles and e-book came out while we were away.   I actually haven’t read the articles yet.  I wanted to.  I meant to.  I always intended to, but when I started to read the first few paragraphs of Part 1, I felt sick to my stomach.  Catherine is such a good writer, it was too hard for me to read.  The details she pinpointed so exactly and vividly were too raw for me to relive.  I’d already seen DIPG cancer strip away my daughter’s life once, and I couldn’t bear to do it again.  Since Aimee and I were on the other side of the world, it all felt very distant when the writings were published.  Auntie Angie sent photos of the newspapers to our phones while we were away, but it still wasn’t very concrete.  When we got home and walked into our living room there was a huge stack of Toronto Star’s that our family had collected for us while we were away, and there she was…  my beautiful little girl staring out at me, her strawberry blonde curls framed by rows and rows of black and white text.  Fingernails painted and looking so damn alive in the picture and in the words I skimmed.  But she’s gone.  She is a pile of ashes housed in a tiny stone box, currently sitting in storage. Newspaper’s report yesterday’s news

and Stella lives on only in yesterday’s.  There are no tomorrow’s left for her.

 

That was the first blow I felt, but they just keep coming.

 

Friday I turned on the TV only to see horror unfolding— the shootings in Connecticut.  The situation of the people who lost loved ones in that unfathomable massacre is very different from what happened to us, but I felt their pain intensely.  Whereas before I might have watched the TV coverage with interest, but distance, this time I felt myself recoiling in despair as I watched it all unfold on CNN.  This time I could picture bright Christmas presents already wrapped and labeled with names piled under trees dripping with tinsel.  I could smell the clothing that was left on bedroom floors that morning in the rush to get to school/work on time.  This time I could hear the sound of hearts breaking.  I could taste the metallic-y blood that seeps into your mouth when you bite your cheeks as hard as you can to keep from screaming when you realize all you have lost.  I wanted to turn off the TV, to turn off the thoughts in my brain, but I didn’t.  I didn’t do it because I wanted to feel the pain and sadness for the people in Connecticut, sharing the burden the way that so many people have shared it with us for the last year and a half.

 

 

Saturday Aimee and I decided that we wanted to get a Christmas Tree for the boys.  We won’t do anything else.  No stockings, no lights, no shopping.  Last year was the first time we purchased a real tree.  We set it up in the living room at the end of Stella’s couch, and she absolutely loved it.  She smiled and laughed and flapped at it.  We wanted to get a tree again this year, to honour her and remember.  Aimee took Gracie to the store and they came home, proudly carting a 7-foot pine tree with them.  Gracie and Sam bounced off each other with excitement, yanking decorations out of the boxes and chasing each other around with them.  It was a bright, happy scene full of energy and colour, but I felt as though there was a weight on my heart the whole time.  Out of the box came “Baby’s First Christmas” ornament with a photo of Stella in a red cable-knit sweater, smiling brightly.  Stella’s 7-month footprint on a glazed pottery ornament with “Stella 2009” written in black marker.  Her daycare photo from 2011, framed in sparkly wood, smiling out at us from between the branches.  It’s as though the tree this year is decorated with tears instead of ornaments.

 

Sunday at Church, I was already feeling weepy before anything started.  There is something so safe and comforting about Church that allows me to put my guard down immediately.  The first hymn we sang was about Stars, and I wept through it.  Then it was the Nativity pageant at Church.  At one point, a whole pile of little kids dressed as sheep ran onto the stage with goofy smiles and crooked ears.  They were adorable and they shattered my already tender heart.  I imagined that Stella may have been up there this year too.  She would have been almost 4, just the right age to play an adorable little sheep.  But her smile will never bleet out at me from the stage.

 

And that’s what it’s been like…Children dying, Wham.  Christmas ornaments, Wham.  Sheep, Wham.  One blow after the other.  Picking myself up and getting knocked back down again.

 

I haven’t done any Christmas shopping, except for a few odd items for Xavier and Gracie.  It surprises me how meaningless it all feels this year.  The boys are too young to care about the Holiday’s, and Stella is gone.  Whereas last year there was a sense of “just getting through” with everyone, now I feel as if there is an expectation for everything to go back to normal.  Same old Christmas full of gifts and cookies and small talk.  And I loathe it.  It feels icky this year.  Forced and fake.

 

We’ve been working on finding ways to incorporate Stella into our Christmas.  We’ve put some beautiful metal stars on our Christmas tree, a gift from Flora’s parents, that catch the light and shine.  Poppa spent hundreds of dollars purchasing huge light-up stars for family and friends to hang in their windows, “Stella Stars” he calls them. We took Sam, Xavier and Hugo for a photo with Santa and put all three boys in the t-shirts we made for Stella’s funeral (her photo is one them), so she is “in” the photos as well.  Each year I get a personalized Christmas ornament for the tree.  In 2008 it said “Aimee and Mishi” in 2009 and 2010 it said “Aimee, Mishi, Stella”.  In 2011 it said, “Aimee, Mishi, Stella, Sam”.  This year I couldn’t bring myself to not include her on the ornament, so it says, “Aimee, Mishi, Stella, Sam, Hugo” and Stella’s name is bookended in wings.  I went to a “Blue Christmas” service at Church tonight.  It was quiet and lovely and contemplative.  But no matter what we do, it doesn’t fill the hole.  Stella isn’t here and I miss her more and more each day.

 

I’ve been trying to strip away the layers of Holiday cheer this year.  Strip away the wrapping paper, the money spent in malls, the overabundance of food, the cards and chit chat.  Strip away the expectations, the stress, the running around, the self-imposed obligations and the multiple commitments.   Strip away Santa Claus, Jesus Christ, candles, prayers, carols.  What is left?  Family.  Love.

 

I will get through Christmas this year.  Like going through a storm, you don’t really have a choice but to wait for it to pass.  I will continue to get up even when I know it will hurt.  And my gifts this year will be as follows:

 

To my friend who hurt me deeply, forgiveness.

To the people who don’t quite get it, tolerance.

To my sons, smiles and energy.

To my family, love.

To my daughter, a bit more fearlessness

To myself, patience.

 

Gracie and Sam decorate the tree:

Christmas Tree, 2012:


Stella at Christmas last year (2011):


 

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Map

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Map

 

This journey with Stella has been so much longer and more complicated than Aimee and I could ever have imagined almost a year ago.  I remember a few days after she was diagnosed, I finally got up the courage to look up “DIPG” on the computer.  I was horrified at what I found, reading the descriptions of the way that the tumour would take away my child’s motor skills one by one but leave her cognition, brain and knowledge of what was happening to her completely untouched.  I wanted to throw up.  I turned off the computer and began walking.  I had no destination, no idea where I was going, I just wanted to escape this horrific reality that Aimee and I were being faced with.  I called Aimee’s sister Andrea and told her that I didn’t think I could do this— didn’t think I could watch my child die in this horrific way.  I was walking towards the Bloor Bridge.  I didn’t want to jump— I just wanted to imagine that I was going to…imagine that I had a way to make the pain in my heart stop because it hurt too much to live.  I think I freaked Andrea up thought, because soon, our friends An and Em picked me up and brought me back home.  They sat with me on the swing in my Dad’s backyard and I told them that I wasn’t strong enough to spend the next 9 months watching my child slowly die.  (9 months is what they say the average child with DIPG will live for— if they receive treatment).  I remember An (a nurse and thanatology specialist), assuring me that Stella would not live that long.  Without treatment, it would be 3 or 4 months maximum.  6 would be a mini-miracle.  I remember feeling relief that it would all be over soon— before Christmas for sure.  I kept clinging to the pattern that the Doctors had told us she would follow.  It was difficult, but it would be mercifully fast and she wouldn’t even really understand what was happening to her because she was only 26 months old.  I would be back at work in January and by Stella’s birthday, maybe it wouldn’t hurt to open my eyes in the morning anymore.

 

Now here we are, 11 months later and Stella, without treatment, is still here.  She has shocked not only us, but the Doctors and other professionals as well.  They have no answers as to why she is still alive, why the tumour has been growing so slowly, how much longer she has.  She has seen so many things she was never supposed to see: Sam being born, Hallowe’en, Christmas, Easter, her third birthday.  And while we are grateful to have had so many months with her -months which she has taught us so much, and graced us with her love and laughter, I also feel completely lost.

 

When someone doesn’t follow the prescribed route, when you have no idea what direction you’re headed, how you will arrive there, how long it will take and what the conditions will be like… it’s absolutely terrifying.

 

There is a reason that we have called Stella’s cancer “A Journey” instead of a trip or some other term.  A journey is generally one long and connected piece of travel, especially pertaining to a destination that takes a long time to get to.  A journey insinuates that there is no prescribed route, no direct way, no map.  Sometimes a journey doesn’t even have a definite destination.

 

But I feel disoriented without a map.  At my core, I am a student.  I’ve always loved being given a problem, or analytical issue, or literary question and I research it to death until I’ve formulated an opinion about it, and I feel like I “know” the answer.  But with Stella, no one knows any of the answers to my questions.  Not even some of the leading DIPG experts in the world.  And while at times, this has been a very good thing—because we have gotten some unexpected beauty, stunning perspective and surprise moments because of it—as the journey wears on, I find myself getting more and more frustrated, feeling more and more lost and searching vainly for a map to give me some idea of where we are headed with this horrible disease.

 

Last weekend Stella was running a fever and slept for almost three days straight with very little interaction or signs that she was aware of what was going on around her.  Funnily enough, I wasn’t scared by this or worried or frightened.  It was familiar to me— we’ve been here before, probably half a dozen times.  The first several times, Aimee and I completely panicked and spent the days and nights crying thinking this was “it”, but this time we just waited patiently for her to come out of it.  The only sign I give that I may thinking the worst is that I become obsessed with going online and looking at other blogs that have been kept by DIPG parents.  I find myself reading and re-reading the blogs of beautiful children that were taken by this horrible disease, and try to find what “the sign” was that led the parents to finally understand death was at hand.  Joseph…Emma…Elena…Oliver…Rex…Max…Johnny…countless others. I read them all, and yet I haven’t found any signs that were common to all of the children who died of DIPG.  Everyone died after a different amount of time (2 months to 2 years), the tumour did different things to their body, their deaths were completely different.  Some children were alert  24 hours earlier shopping and swimming, some fell into a coma and hung on for days afterwards, some passed away peacefully, others suffered difficulty breathing and swallowing and their death was merciful for those that couldn’t watch them suffer any longer.

 

I try sometimes to make sense of where we’re headed, but it is hard to find sense in something that feels so utterly senseless.

 

I know that this journey will eventually end in the death of my beloved daughter.

I know this journey will end in my heart breaking and bleeding.

I know this journey will end with tears, screams and pain.

 

I want so desperately to get off this path that I’m on, but I have nowhere else to go.  The map I am so desperately searching for doesn’t exist and so Aimee and I flounder in the dark, coming across what seems like insurmountable obstacles, trying our best to navigate unknown elements and emotions, all the while knowing we are headed towards despair and agony.  It’s so hard.  And in the meantime, our incredible son Sam is getting older and we are needing to learn how to parent him as a 7-month old.  We watch him do things that Stella can’t do anymore— reach for what he wants, put something in his mouth, sit up unassisted, smile and laugh on cue, hug us, eat solid food.  We are on diverging paths.  One is headed to a future without Stella, a future with two sons instead.  The other is headed towards Stella’s decline and death.  We are now 9 weeks away from having our third child.  7 months ago there was no way we thought Stella would still be alive at this point.  And we still don’t really know if she will get to meet her next brother or not.  It is all a big unknown to us, hard to plan for anything, hard to predict anything, hard to picture what next week let alone what next month will look like.

 

Where is that damn map!??

 

i find myself looking for familiar things—touchstones to help me gain my footing in the absence of a map.  The 7-day a week morning breakfast routine with my family.  The medication alarm that goes off at 8am, 8pm, 12am and 3am.  Therapy on Tuesday’s.  Sleepover with Gracie on Saturday’s.  As the weeks pass, I cling to each of these things as though they were the buoy’s that will keep me from drowning.  The days are so unpredictable otherwise.  Will Stella have a good or bad day?  Will Stella be sick today?  Will Stella want to leave the house today?  Will Stella eat today?  Will Stella have a seizure or fever today?  Will Stella die today?

 

I think often of sitting on that swing with An 11 months ago, and telling her there was no way I could survive watching Stella waste away.  But we have.  Aimee and I and our friends and family have watched her lose her ability to walk first, then stand, then sit, then hold her head up.  We watched her lose her ability to use her arms, to feed herself, to eat solid food.  We watched her eyesight worsen, her headaches worsen, her ability to speak and communicate with us disappear.  We watch her drool and struggle to swallow.  We watch her sit quietly, her head drooping, her hands hanging uselessly like little claws at her side, her voice silenced, as other children her age run and shout circles around her.  And yet-unexpectedly- we also watch her laugh and smile and welcome new adventures.  We watch her live as much as we watch her die.  It’s both maddening and miraculous.

 

Without this illusive map to guide us on our journey, Aimee and I have no choice but to walk blindly through each day with the help of our family and friends and supporters.

 

And, once in awhile, we manage to find our way.

 

Last night we had Stella’s friend Arin and his family over to celebrate Victoria Day with us.  Stella was quiet for most of the evening, she has been more tired and lethargic recently, not wanting to leave the safety of the house and the couch at all.  But just as the sun was starting to fade, we lit some fireworks for Arin and Stella.  As they rained down multi-coloured sparks around our backyard, Stella and Arin sat side by side and laughed.  The louder, bigger, flashier the fireworks, the more Stella smiled.  At one point something called “The Big Bang” was lit by Daniel and it was exactly what it sounds like…a firework that lets off a massive “bang!” and one single shot of fire shoots up into the air.  It caught us all by surprise.  The adults gasped and jumped, the babies burst into tears, Arin backed away scared.  And Stella?  She laughed and laughed and laughed in delight at the noise and shock of it all.  This is when I don’t feel lost anymore.  When Stella reminds us that locked inside a body that has failed her in every way possible, her spirit is still there, as fearless and strong as ever.

 

The name Stella means “Star”.  Stars add light to the darkness, and you can follow them when you have nowhere else to go.  But I still wish I had a map.  Or at least a compass to point me in some kind of direction.  But all I have is my special star, so when I feel lost on this road to Hell, when it is dark and I am scared I can’t find my way, I need to remember to look to my star for help.  She is the only thing we have to follow right now.

 

I love the light for it shows me the way, yet I endure the darkness because it shows me the stars.  -Og Mandino

Aimee and her daughter:


Gracie pulling Stella around the backyard:

Stella and Sam in the backyard:

Stella and Daniel enjoying fireworks:

Victoria Day BBQ!

Stella watching the fireworks in our backyard:


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