Weight

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

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

“How was your Christmas?”

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

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

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

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

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

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

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

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

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

Heavy.

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

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

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

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

 

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

Sam and Hugo help decorate Stella’s tree:IMG_9306

Sam and Hugo play at the park on Boxing Day:

 

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

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

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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:

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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:

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Moments of Christmas

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Earlier this week, I attended a service at Church with my sister Heather and Aimee’s mom,”Tutu”. The service is called “Blue Christmas” and it is a sombre, melancholy service to acknowledge that Christmas is not always about “Joy to the World”, but also a Holiday in many people that magnifies their feelings of loss, grief, loneliness and sadness.

As I sat there, with a smattering of other people who all keep their eyes averted and heads down during the service, I felt truly sad. Gutted for the first time in a long time. As always, we don’t necessarily give ourselves the opportunity and space to grieve properly once we integrate ourselves back into “the real world” after a great change or trauma. At first, I tried to hold back my tears as a soloist sung straight to my broken heart, but I heard a muffled sob behind me and turned around enough to see my sister, her face red and blotchy, bawling her eyes out into a tattered tissue. Seeing her share her sadness so freely, without reservation, did me in. I turned back around in my hard wooden pew, shut my eyes and let the warm tears that had been pooling in the corner of my eyes stream down. Once I gave myself the opportunity to cry, there was no going back. Before long, the not-forgotten physical pain of pure grief began to work its way through my body. Waves of sharp pains in my chest. Numb coldness in my stomach. A loud buzzing in my brain saying over and over again, “Oh my God. I miss Stella. The pain is too great. Stella. Stella. My little girl.” I didn’t try to control the grief, or stem the pain. I just sat there in the pew with my eyes screwed tightly shut, and let myself feel sad and hurt and overwhelmed with the loss of my precious girl. My body protested at being wracked with the agony of grief once again, but I just sat there and breathed through it. I needed to feel the pain and depth of my loss. By the end of the short service, Tutu and Auntie Heather and I were all completely drained. All of us tear-stained, headachy and feeling heavy. But there was something cleansing and healthy about it all too. I was reminded, yet again, that life does not give us enough opportunity to embrace pain and sadness. To acknowledge that the words “Merry Christmas” or “Happy Holidays” are not always positive to everyone, but an acute reminder of the fact that things are not Merry/Happy/Joyful, just because you say they are.

By the next morning, I felt more like myself and was able to navigate the stores and adequately completed all social niceties required of me. It reminded me to try to focus on the moment. Be happy in the moment, if you feel it. Be sad if you feel it. But most of all, be present. Just after “Blue Christmas”, I went to New York City with my mom for a kid-free weekend of museums and culture. We were taking in the traditional Radio City Music Hall Christmas Spectacular which, even though I’ve seen it half a dozen times, still stuns me into silent reverence. All throughout the show, while 38 genuine Rockettes strutted their stuff on stage with a precision and beauty not often seen in life, it seemed like everyone around me at one point or another was on their iPhone. Texting. Emailing. Checking the weather. It made me sad. I wondered if whatever they were doing was more important than the moment they were missing. The awe of the show. I reminded myself that when Stella was alive post-DIPG diagnosis, I never went anywhere without my phone and checked it constantly too (to make sure she was okay), so maybe these people had their own stuff going on. But if not, they were missing out on something wonderful and beautiful that was right in front of them, all for the sake of staying “connected”. I wanted to yell at them, “Put down the phone! Put up your head! Look around and see what you’re missing!”. Earlier that day, I had heard a frenzied dad in a crazy department store lineup on the phone say “Madison, daddy doesn’t have time to talk right now…Maddy, you can tell me about your day later, daddy is busy…MADISON, I told you I don’t have time for you right now”. It broke my heart. We’ve all done it before, so many times, but really…Madison probably wanted to tell him something neat that happened at school, and he couldn’t listen to her because he was trying to juggle his phone, wallet and a $125 American Doll that he was more than likely buying for HER. As parents, we truly get our priorities screwed up sometimes. Live in the moment. Pay attention to what is around you. What will you miss if you don’t put things down once in awhile and look around?

It’s not something I’m super good at, but I’ve noticed it’s something that my kids have no trouble with. After Stella was diagnosed, much of our pain was around what SHE would be going through when she started to lose her ability to do things. We were reminded time and time again about the fact that because she was only 26 months old, she didn’t have any concept of before or after, only “now”and for that reason, she would be okay. Without the consciousness of what a 2 or 3 year old “should” be able to do, or what her life would be like without DIPG, she would be happy. And she was. Now the boys are the same. They have moods, but are over them almost instantly. They don’t plan ahead, they don’t bring up something that happened 2 months ago. They just cry when they’re sad, laugh when they’re happy, sleep when they’re tired and hug me all the time. The here and now. It is really all we have. Even with the colossal loss of Stella, Aimee and I know we have no guarantee of tomorrow. Anything can happen. Things happen so quickly to friends or family. So we just have today, this moment to feel what we feel, see what we see, enjoy what we can. So today, the Christmas gifts, most of them homemade, are wrapped. The boys are loving their Christmas Tree and Christmas lights (they are at a beautiful age when there is no want or need for presents yet). Aimee and I are on Holidays together for a couple of weeks, spending time with family and friends. It is a nice time. And I hope to be able to stay present for all of this year’s Christmas moments. The good and fun times when Hugo, Sam, Xavier and Gracie are running around chasing each other and laughing. The sad times when we set an empty place at the table for Stella and light a candle to represent the light we lost when she died. The stressful times trying to get Christmas dinner on the table. The relaxing moments after the boys go to bed when Aimee and I sit on the couch and hold hands and talk about our day, with Stella’s doll staring down at us from the mantle. Good and bad, each moment has its time and place.

So, Merry Christmas if you’re Merry. Joy to the World if you’re Joyful. Happy Holidays if you’re Happy. But if not, that’s okay too. Each moment, no matter what it brings, is worth feeling and experiencing. Which reminds me…Stella’s favourite Christmas Carol was “Frosty The Snowman”. Now I laugh when I think about it. Of course it was— the story of a short, magical moment when children got to laugh and play all day, that ended far too soon when the sun melted Frosty and he had to go away.

“So he waved goodbye, saying ‘don’t you cry’, I’ll be back again someday’ “.

xoxoxxoxox

 

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Toast the Eggnog

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Toast the Eggnog

 

I just finished my final exams for first semester back at school.  Whew!

 

Even though this is what I wanted to do, it was a tough slog this semester.  Going back to school with a 2 year old and a 1 year old doesn’t exactly lend itself to the self-indulgence required to focus on your studies.  Despite the fact that Aimee and our families are HUGELY supportive and wonderful, the day-to-day workings of a life with two toddlers are not exactly conducive to studying.  Since school started in September, we’ve:

 

  • Been to Sick Kids Hospital 3 times (1x Sam, 2xHugo)
  • Had 1 incidence of impetigo (Sam)
  • Had 1 confirmed ear infection (Hugo)
  • Had 6 incidences of stomach flu (Sam, Hugo, Mishi, Sam, Hugo, Hugo)
  • Had 1 bronchial infection (Mishi)
  • Had 8 colds (Mishi, Mishi, Hugo, Mishi, Hugo, Sam, Mishi, Mishi)
  • Had 1 sinus infection (Aimee)

 

In between I’ve been to hundreds of hours of classes, written 14 tests, 8 exams, 2 lab reports, 1 assignment and attended 2 Embalmings and 1 career fair.

 

Finding time to study has been difficult, to say the least.  But Aimee’s motto is, “We can do anything.  We’ve already done the hardest thing ever”.  And she’s right.  So we got through it.  WE as in me and my entire family.  I’ve never been so grateful for a break as I am now.  Three weeks off.  Whew.  And I’m doing it.  I can’t believe it.  I’ve wanted to go to school full-time since I was 20 years old.  It took 14 years, but I’m a full time student.  Amazing!

 

Now with school over until January, I’ve raised my head from the books, my butt from the desk and begun to look around again.  Suddenly…Christmas is almost here!

 

I can’t believe this is our second Christmas without Stella.  Since Stella’s diagnosis, we struggled with Christmas.  We first tried to do “Christmas Light” for Stella’s last Christmas.  Last year we also didn’t feel like celebrating whole-heartedly.  This year, though Aimee and I haven’t really talked about it or made any major decisions, it seems to have crept back in.  There is a tree in the corner.  Not the corner we put it in when Stella had DIPG (then we put it right next to the couch so she could see it), the old corner from when we were young and ignorant.  There are three stockings hung by the chimney with care (Stella, Sam, Hugo).  There are silver garlands on the mantle, a snowman candle on the table and candy canes in the cutlery drawer.

 

There is also a lineup of Santa photos on the living room hutch.  The first is Stella at 8 months in 2009, smiling happily and they continue through each year until the most recent one, taken just 2 weeks ago, where Sam sits on Santa’s knee with his face painted like Spiderman and Hugo is looking half-asleep (because he was sick and feverish that day).  It’s an interesting mix of photos.  Stella with Santa in 2009.  Stella with Santa in 2010.  Stella in 2011 (after diagnosis), and a serperate one of Sam and Santa from 2011, Sam and Hugo in 2012 and Sam and Hugo again in 2013.  Old life.  New life.  Crossover.

 

The tree is the same, a collision of old and new.  Picture of Stella in a “1st Christams” ornament, family ornaments with just Aimee and I (2008), Aimee, Mishi Stella (2009), Aimee, Mishi, Stella, Sam (2011) and in 2012, an ornament that says Aimee, Mishi, Sam, Hugo and Stella— but Stella’s name surrounded by angel wings, to show that she died.  Dora ornaments from when Stella was alive, mixed with an ice cream cone ornament my mom gave us after she died.  It’s still so crazy to try to separate “then” and “now”.

 

But, overall, like everything else in life, Christmas has snuck back into our lives.  The same, but different.  A little less magical and sparkly.  Less presents.  Less fuss.  Less agreement from Aimee and I to run around like crazy trying to see everyone.  But it’s still here.  Everything looks and feels different, but Christmas is still around us with its cookies and photo holiday cards from friends and Christmas lights.

 

Another Christmas without Stella.  A whole year since the last one.  I can’t believe how big the boys are getting.  Sam is almost 26 months old now and talking up a storm.  He is so different from Stella.  He is super cuddly and affectionate.  He is sensitive and says things like, “Mama, I cold!” before snuggling into my lap with a blanket and a bowl of crackers.  He gives Hugo a hug in the morning, totally without prompting and if you get mad at him he responds by bursting into tears (whereas Stella would often laugh in your face and run away).  He loves Toy Story and singing Jingle Bells and idolizes Gracie, just like Stella did. Hugo’s personality has started to slip out as well.  At 16 months old, he has proven himself an easy-going and cheerful child.  He plays quietly by himself a lot, and when he doesn’t get his own way has these tiny melt-downs where he stomps his feet, but they are so fleeting that even he doesn’t seem to remember that he was mad a moment ago.  He reminds most of us of my dad.  He loves balls and trucks and follows his cousin Xavier around (Zay-zay as Stella and all the boys call him), and doesn’t care if the bigger kids steal toys from him.

 

Both our sons know Stella.  Sam calls her his sister, and if you ask him about his family he says Hugo is his brother and Stella is his sister.  Whenever someone says Stella’s name, he looks at them solemnly and says, “Stella die.  Her body no work ‘nymore”.  For a few weeks he was saying, “Stella pie”, so this is actually an improvement.  Hugo and Sam each end their evenings by kissing the paintings we have of Stella (each by a blog reader) in their rooms.  She is still a presence in our lives, even though she is not here.

 

My friend Sheri sent me an article a couple of weeks ago that a woman wrote who had a stillbirth.  It was a conversation she was having with her almost-grown-up children, and it’s similar to the type of conversation we will have with our boys one day.  A conversation where they learn that our family is only the way it is because one child died.  A conversation where they try to understand how things could have been so different, but aren’t.  The article ends by saying that things can’t be any different than the way they are, because that’s just the way things worked out.  It’s the same for us, I guess.  I will never stop mourning Stella, but it won’t stop me from celebrating the life we do have and appreciating all the positive things we experience in our daily lives.  It’s not so much about moving on, it’s just about living life in honour of her.

 

I find myself trying not to be sad right now.  I avoid looking at the videos we have  because the loss is still so great and hurts so much.  Seeing her so alive on screen makes me ache from the inside out.  So I don’t do it.  I try not to look at little girls dresses and shoes when I’m out shopping.  I am growing a shell to defend myself.  I still bleed, I still feel the pain of our loss, but I am protecting myself more and making a concerted effort to focus on the positive.  Not because I want to forget how much losing Stella means,not because I don’t believe that I can still be sad and withdrawn if I want to, but because I am choosing to hear the Silver Bells, believe in Santa and sing all dozen verses of 12 Days of Christmas.

 

Because that’s what Stella would have done.

Gracie and GrandPa put the star on our tree:

IMG_0515Hugo and Sam clowning around with Auntie Heather:

IMG_0488Sam and Hugo, morning hug:

IMG_5656Little Elf:

IMG_5619Santa photo, 2013:

873xmas-022Letter Gracie sent us in the mail:

IMG_5698Stella…December 13, 2011:

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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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