The Long Winter

The Long Winter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A promise of the colours yet to come.

Sam and Hugo clowning around:

Stella's friends celebrate the new couch at Kimbourne Drop - In Centre:

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

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