Second is Worse than First

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Last year around this time, I connected with a family whose daughter had also died of DIPG, only 4 years earlier than Stella.  I remember that the father held my arm as we spoke words and feelings that are part of a common language of experience that the outside world doesn’t understand, and told me earnestly that the second year after your child dies is worst than the first, and then the third is even worse than that.  I wasn’t quite sure what he meant at the time, but I think I’m starting to figure it out.

 

The thing is, the world around you keeps moving and growing and changing, and so do you, but all these changes and all this time takes you further and farther away from your child.  It gets harder and harder to close your eyes and see their face, or remember the exact way their forehead smelled, or the precise pitter-patter noise that their feet made as they ran down the hallway.

 

And it’s harder because as time passes it’s supposed to get easier.  You’re supposed to feel better, to hurt less.  You’re meant to get up and get on with your life.  And I think most bereaved parents do.  But there is a false belief that the longer it’s been since your child died, the easier it gets.  For me, so far, the truth is, the longer it’s been since Stella died the more “good” days I have, but it doesn’t mean I don’t still have bad days, bad weeks, bad months.  And when those bad times come, they are just as difficult and devastating 3 years later as they were in the moment.

 

This revelation became abundantly clear to me two weeks ago when [my nephew] Xavier had a minor day surgery for a thyroid cyst he developed in utero.  Although the surgery went well, the medical team, unexpectedly, decided to keep him in the hospital overnight.  I wanted to go visit, to support Heather and Daniel and check on the little guy, so I offered to bring them a few things they might need for their overnight stay.  After a quick packing of a small bag, I headed down to the hospital.

 

I knew I was in trouble the moment I walked in.  I had entered through a back door and ended up on the far side of Sick Kids Hospital.  It was the food court area.  Immediately, I broke into a sweat.  Somehow I had blocked out that I would be going to the very hospital that Stella got her horrible DIPG diagnosis in.  I saw the restaurant I remember my dad getting soup at and trying to convince me to eat, as over the course of three days he watched me shrivel into a shell of my former being.  As I continued walking through the hospital, my head began to spin.  It all looked the same as those first few horrible days of June 2011 when I wandered these halls, trying desperately to feel firm ground under my feet.  Sometimes I couldn’t even sense my own eyes blinking as I was walked through the nightmare from which I couldn’t wake.  Retracing the same steps I took back then, I passed the low, dark hallway with “MRI” written above the doorway and felt my veins go cold as I relived the last few hours of Aimee and my innocence about how cruel the world can be.  I remembered taking Stella down that MRI hallway, completely oblivious to what was going to happen next.  I saw the gift shop Aimee and I bought Stella a stuffed Dora doll in while we waited in Emerge, completely ignorant to the horrors that were about to unfold.  I saw the Starbucks where I spent an absolute fortune on food and drinks after Stella’s diagnosis.  I saw the front doors of the hospital that I walked out of for air after she was diagnosed.  I gulped and gasped the hot, smoggy summer air, willing myself to just breathe as my heart shattered into a million pieces.  Everything looked the same in the hospital; the sights and smells were so triggering that I thought I might faint.  I texted Heather to find out where in the hospital they were.  5D, she reported nonchalantly.  And then, I really did have to sit down.  Because with Stella they put us in 5G, which was the wing directly across the hallway from where Heather was.  I would have to go back.  Back to *there*.  I almost ran away at that moment, I really did.  I had to breathe deeply and force my wooden legs to keep taking steps towards the elevator.  I got off at the 5th floor and the first thing I saw was the bench I sat on at 3am that second night after diagnosis.  I curled up on the cold, green vinyl bench, wrapped myself up in my big gypsy-style skirt and sobbed until my head throbbed.  I scratched at my arms and rocked back and forth as Stella slept peacefully in the ward, and I grabbed onto the wire walls that look onto the atrium and wished I could pull them out so I could jump off the floor and out of this life that hurt so much I couldn’t even breathe.  I remembered all these things as I headed to Xavier’s room and wondered anew at how random life can be sometimes.

 

Once I got into the room and saw Heather and Daniel and Xavier, I felt a bit better, but everything was still triggering.  Even Xavier who is about the same age and size as Stella when she was there, with his head full of curls and wearing the Sick Kids white pyjamas, made me relive so many things I’ve worked hard to forget.  I was glad to leave Sick Kids, but it was a fresh reminder of how fragile this mental peace is that I have at the moment.

 

After my visit to Sick Kids, I had a rough couple of weeks.  Trouble sleeping as my mind tortured me with flashbacks.  Trouble focusing at school.  Overwhelming stress at the amount of things I have to get done before this semester finished (assignments, tests, exams, etc.).  Feelings of parental inadequacy.  Not wanting to see anyone socially who has children around Stella’s age.  Feeling overwhelmed at the needs of our two young kids.  All these things would be considered “normal” if I was newly bereaved, but almost 3 years post-diagnosis and 17-months post Stella’s death, it was unexpected for me as well as my friends and family.  I was even embarrassed to write about it here, on this blog that I’ve been so open and raw in for so long, because I didn’t want to disappoint any readers out there that are happy and content to know that Aimee and I are happy and content.

 

I concluded that it’s harder the second year than the first because by the second year you have, generally, had some “good times”.  You’ve probably laughed a little, woken up a few mornings and felt ordinary as opposed to like you’re being stabbed in the chest.  You’ve started eating again and doing “normal” things like showering on a regular basis and cooking.  And other people see you functioning in society again, and acting like yourself, and they breathe a sigh or relief because they know you’re going to be okay and that you’re still you, and you’re not a total basket case anymore.  You can actually see and feel the relief those around you have when they perceive that you’re doing okay, “You’re so strong,” they say with admiration.  When Stella first died, or when Stella was sick, people expected Aimee and I to be sad.  They expected us to cry at strange moments, to not be able to get out of bed some days.  They brought food and didn’t mind when we cancelled things at the last moment, “their daughter has cancer…she’s going to die” they would whisper to each other.  There was a universal understanding. It was like a “get out of jail” free card.  But now there are new expectations on us, new standards.  We are normal now.  We have assimilated back into their world.

 

Except nothing is really normal.

 

The second year is harder because when you start to feel like shit again, you don’t feel like you have the right anymore.  Instead of overwhelming support and sympathy, you get wariness and sighs. And you feel guilty for letting everyone down.   For the most part it looks as though Aimee and I have returned to the status quo.  I am in school, Aimee is working, Sam and Hugo have daycare during the week, swimming and soccer on weekends.  We cook dinner, go to the park, read magazines about the love lives of Brad and Angelina.  But the trade-off for these periods of normalcy is that when things aren’t going well— when the sadness and anger and grief bubbles its way to the surface again, there is a certain shame or discomfort that comes with it.  “I thought you were doing fine” people say, people think.

 

I say.  I think.

 

The second year is harder because there is no illusions, no fog, no shock to cushion the horrible truth that Stella is gone forever from me.

 

But that’s okay.  It’s okay to have bad and sad days.  It’s okay to realize that even with the absolutely fantastic and happy times, there is a measure of sadness.  It’s okay to give myself permission to move backwards in my grief, even if other people don’t understand why.

 

Being happy doesn’t mean that everything is perfect.  Being happy means looking beyond imperfections and believing that each day is worth living, whether you laugh or cry.

 

 “We learn something from everyone who passes through our lives.. Some lessons are painful, some are painless.. but, all are priceless.”

Xavier rests with his daddy after surgery (he’s going great now!):

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Hugo isn’t afraid to get his feet wet…

IMG_6620Sam enjoys weekly breakfast at “The Restaurant” (Tim Horton’s) with Poppa:

IMG_6636Saturday morning breakfast:

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Stella…5 weeks old:

Month 2a

 

 

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Tiaras and Tears

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Tiaras and Tears

 

It may not be politically correct, or feminist of me, but I like many of the socially constructed “girly” things that most of my contemporaries fight against and feverently hope their daughters will never buy into.

 

But as unpopular as my opinion might be in our social group, I like Disney movies, especially the “Princess” ones.  I know all of them by name and can sing all the songs and describe all the dresses in detail. I like sparkly nail polish, big dresses with crinoline under them and makeovers.  The colour pink does not offend me, and I don’t care if little girls want to play wedding, princess or popstar.  I will happily play Barbie dress-up or My Little Pony with anyone, and in my spare time willingly watch copious amounts of Say Yes to The Dress  and Four Weddings on TLC because I like weddings.  Big, fluffy, white weddings with a cutting the cake, corny DJ music and bridesmaids. Oh yeah, and sorry feminist friends, I love you dearly, but I gotta shave.

 

I used to actively search out activities that I could take Stella to when she was older.  I would look at an ad in the paper for the musical Pink-A-Licious and think, “Oooo, maybe when she’s 4 we can go to that”, and I had done research on kids spas in Toronto where you can have mother/daughter days.  When Stella was sick last summer, I took Gracie to an event called “The Princess Party” at StageWest Hotel and Theatre in Mississauga.  The event list would have sent chills of horror through most of my mommy-friends bodies.  There was a Princess movie, princess dress-up, Princess live show, dancing (which included learning how to dance with a broom like Cinderella), a meet-and-greet with the princesses, and a chance for makeup and nail polish application.  There were about 80 little girls all dressed in pink and purple dresses, wearing hotel-supplied tiaras just eating it up.  And I loved it.  I happily engaged in a serious conversation with Gracie regarding whether Sleeping Beauty’s ball gown looked better in blue or pink, and gamely referred to all the little girls by their “Princess” names (i.e. if they were dressed like Snow White, that’s what I called them).

 

This year, I begged Gracie’s politically-correct and socially-conscious parents to let me take her again, and even asked Stella’s friend Flora’s parents (who are equally politically and socially correct…even to the extent they are (gasp!) vegetarians!), for permission to take the girls to the Princess weekend.  After setting aside their personal views in the name of their little girls happiness, both sets of parents agreed, and the planning commenced.  I was so excited.

 

Then, due to some scheduling conflicts, suddenly it seemed that the girls weren’t able to do the weekend with me anymore.  I was disappointed and sad, but it was more than that.  I was absolutely devastated.  Like, curl up in a ball and sob as though you were just told Santa doesn’t exist kind of sad.  Now, after two years of really, really good therapy, I know enough that when I get an over-the-top reaction to something so small, it means something more.  So I had to think about what it might be, and with Aimee’s help I realized something.  Not only am I mourning Stella as my child, I am mourning Stella specifically as my daughter, as a girl that I no longer have.

 

From the moment that she was placed on my chest in the delivery room and I heard Aimee cry out, “It’s a girl!” I created fantasies about having a daughter.  They weren’t necessarily around ballet recitals or anything, but I more dreamed about sharing my interests with my daughter.  Who knows if Stella ever would have given me the time of day, but that’s not the point.  The point is in my mind and imagination; I was going to have a daughter.  This meant that we could have a Cinderella-themed birthday party, when she was older we would get dressed up and go to High Tea, we would spend hours with DeeDee at the American Doll Company in New York City looking at dolls and clothes, we would go prom dress shopping and Tutu would take her to Paris for her 16th birthday for the fashion shows.  I would pass along my (mild) obsession with all things pioneer, and introduce her to the Little House on the Prairie book collection.  We would play paper dolls and she would giggle and paint my toenails with glow in the dark nailpolish.  Maybe she would follow in my footsteps and be a Girl Guide, or take tap dancing lessons and baton.

 

But now, along with my daughter being gone, so are all those fantasies.  And for anyone out there who’s thinking it, I KNOW that boys can be into that kind of thing to, and I know that there is no logical reason I can’t take Sam and Hugo to High Tea or Pioneer Village, and they might be excellent baton throwers, except that due to social and genetic reasons beyond my control, chances are…they aren’t going to give a shit about Cinderella or My Little Pony.  Already Sam is completely obsessed with trucks and planes and cars.  If we’re walking along in the stroller and he sees something, he will wave at me excitedly, his jaw open and say, “Mama, Digger!”…”Mama, truck!”…”Mama, plane!”…”Mama, excavator!”.  I have an entire children’s book at home that Sam likes me to read on a daily basis simply called “trucks” that goes into great (and boring, in my opinion) detail about the difference between an excavator, digger and bulldozer.  My eyes glaze over around the part that says, “An excavator is a construction vehicle used to dig or move large objects. It is made up of two parts: a driving base and a powerful boom arm with an attachment designed for digging…”, while Sam leans forward, his eyes gleaming with excitement at the big yellow machine.

 

The reason I was so devastated at the thought of losing my Princess Weekend was because it is a stark, and very sad, reminder that I don’t have my own daughter to bring to things like this anymore.  I’m pretty confident Stella would NOT have been into a Princess Weekend, so it’s likely I would have been bringing Flora and Gracie regardless, but it just stresses that it’s not really even an option for me because I don’t have my own little girl anymore.

 

I love my boys, and after losing a child, I don’t need to explain to anyone how much they mean to me.  But I don’t know if I have as much to offer as a parent to boys as I would have to a girl.  I don’t know anything about sports (the only team I was ever on in High School was archery), I don’t care about cars or buses or construction vehicles.  I hate bugs, rodents and action hero movies.  I don’t know the difference between Batman, Spiderman and Captain America.  I can’t tell the difference between Yu-Gi-Oh and BeyBlades.  Which of my passions will I be able to share with my sons and pass along to them?  What will we have in common?  And who will I share my love of Princesses with?  I know I have a lifetime to grow and fall in love with my boys, and I know that more than likely we will surprise each other with just how much we have in common, but I also think I will always yearn for the little girl that might have put on her pioneer bonnet and run through a field of wheat with me while we pretended to scrub our clothes in the creek and learn counting on our slates.

 

Luckily, I will still get to attend the Princess weekend this year as one of the girls who was still able to make it, so I’ll get my fill for now.  But what about next year and the year after?  It makes me sad to contemplate.  What if I’m no good at raising boys?  What if they get mad at me because I don’t know the difference between hockey and ringette, and worse, I don’t care? Right now they are still little, but already I see the “boy” in them coming through.  But, one of the promises I made to myself after Stella died was to try not to worry too much about the future and live one day at a time, so I’m trying not to picture too much at once.  I know that no matter what though, when I don my tiara at the Princess Party in a few weeks, I will  be thinking of Stella and wondering which of the cute little Princesses she would have smacked in the face first.  My guess is Snow White, she’s a bit weird.

Boys on the Beach:

Roasting Hot Dogs with our friends the HayDraude’s:

Digging in the Dirt:


Ice Cream Break!


Sam eats ice cream in Picton with Tasha:


In July 2011, Stella ate ice cream with Tasha on the same bench:


 

 

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First Day of Spring

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First Day Of Spring

Today is the first day of Spring according to the well-worn Real Estate calendar that hangs crookedly from the fridge.  There’s still plenty of snow on the ground and a cold, biting wind froze snowflakes to my eyebrows this morning.  But never mind that, it’s officially Spring.

Spring is the season of all the RE’s: REnewal, REbirth, REvitalization, REjuvenation, REplenishment, REstoration, REgeneration .  All such promising and active words, but I don’t know if I’m ready yet. It’s easy to hide and hibernate in the winter.  You tell yourself and others that it’s cold outside, the weather is bad, your stroller doesn’t work well in the snow, your winter boots have a leak.  You curl up inside and eat heavy stews and cheesecake and shut out the sun.  But in the spring, as the weather gets warmer and neighbours cautiously peek their heads out of the front door like gophers, it will be harder for me to stay inside where it’s safe and warm.  Soon the weekly Farmer’s Markets will start up again, the invitations to cottages, the long warm days, the chance for weekend picnics and trips to the Beach. Birds will start chirping at the windows beginning at 4am, and Stella’s birthday will come and go.

I have already gotten the first birthday party invitations for three of her friends who are turning four, and one friend who is turning three.  I read these invitations with a combination of gratitude, sadness, jealousy and joy.  I want to be able to go and celebrate with my friends, with Stella’s friends.  I want to watch Sam and Hugo run around these parties and just enjoy my sons, be in the moment and grateful to be part of a beautiful community that has not run away from me, but rather held me closer and encouraged me to do what I can, when I can.  But I am always struck with the randomness of it all.  Most of my friends and I started our families together at around the same time.  We all navigated sleep training, introduction of solids, first words and first steps together.  But now their children are getting ready to start kindergarten and taking skating lessons on weekends and my child’s ashes are sitting in a stone box somewhere in a drawer on Palmerston Ave. waiting to be scattered when the ground thaws and the first buds appear on the trees.  It’s hard to fathom sometimes.  Yet I read something that actress Valerie Harper said in a recent interview.  Harper was recently diagnosed with a (different) type of fatal brain cancer, and given three months to live.  She said when people ask, “why you” she responds, “why not me?  Why would I be exempt to something as destructive and random as cancer?”  And I like that answer.

But the truth is, no matter how much I love my friends and their children, it always hurts just a little bit to be around them.  But I chose long ago to endure the pain because the friendships that comes along with it are more than worth it to me.  Still, birthday’s will continue to be challenging for me.  Stella’s birthday is April 18th, so if she were alive we would likely have had a party for her somewhere around the weekend of the 13-14th.  Instead, we received a cordial invitation in the mail yesterday that says:

The Staff of the Haematology/Oncology Program,

The Hospital for Sick Children,

Respectfully invite your family and friends to our 13th Annual Memorial Service honoring the life and memory of your child.

April 14th 3-5pm

It just makes me want to scream until my throat is hoarse.  Instead of planning a birthday party, we will be lighting a candle with other bereaved parents and looking at “a picture or a sample of your child’s art” that they recommend you bring to the ceremony.  Blech.

Some bereaved parents in their blogs and writings talk about their children celebrating birthday’s in Heaven.  They write things like, “Happy Birthday James, celebrating 8 years since he was born and his 4th birthday in Heaven”.  How I long to be able to believe the way they do.  I am still searching for exactly what I think happens after death, I think Stella is somewhere but I don’t know exactly where.  I sometimes try to picture Stella sitting somewhere in the clouds surrounded by friends, wearing a pink tutu, matching sunglasses and her curls blowing in the breeze as she, giggling, blows out candles on a big chocolate timbit cake.  But I don’t really see that as being a realistic vision of where she really is, so as a result I get little comfort from these images.

But the first birthday to celebrate without Stella, is Gracie’s.  Gracie had her fifth birthday party last weekend and when it came time to sing “Happy Birthday”, as Gracie’s eyes glowed under the light of her birthday candles, I couldn’t stop the tears from rolling down my cheeks as I swallowed to keep the pieces of my heart from ricocheting up my throat.  Gracie, sweet as ever, made mention of her cousin Stella in her “Frances” as she calls the thanksgiving prayers we sometimes give at special occasions, and a candle was lit in her honour.  Still, something was missing.  She was missing.  I thought back to all the other birthday’s that Stella had been there for.  She was always placed right next to Gracie, to help blow out the candles and celebrate next to her best friend.

Strangely enough, the place that Gracie had her party was at her Nona and GrandPa’s house.  These are Aunt Juju’s parents, and they lost a daughter once too.  Julia’s older sister was hit by a car and died when she was a child.  As we stood there singing to Gracie, I looked at them and wondered if they still think of their daughter, 30 years later, every time someone blows out the candles on a birthday cake.  I see their dead daughter’s picture around the house.  I counted two with her in them, 1980’s pictures that have a bit of a yellow tinge to them and look almost antique.  I thought about how many parties, celebrations, holidays, etc. they have endured without their eldest child and wondered what it would feel like for Aimee and I, thirty years in the future, to maybe be looking at one of our grandchildren turning five while a faded picture of Stella smiled at us from the curio.  But it hurts my heart to think to far into a future without Stella, so I quickly tried to dismiss these thoughts and wiped the tears from my eyes.  Yet I continued to wonder, what will it feel like when Stella has been dead so long she isn’t mentioned at the birthday parties?  She isn’t talked about during “Frances”, and other people in our lives never met her, but just heard a bit about her form us and looked at a couple of outdated snapshots sitting around the house.

In that moment, I decided that Aimee and I were going to celebrate Stella’s birthday this year.  Not as a “Birthday in Heaven”, but as a true celebration of the day she was born.  We will be happy that day, and be grateful for the time we had with our girl and the incredible gifts she gave us.  We will laugh and remember and do all her favourite things, and eat cake and buy balloons.  Stella’s birthday will be celebrated here, on Earth with us.

The 4 o’clock sun is beaming into my windows now, causing a glare on the computer screen and making little prickles of sweat pop up on my temples.  A sure sign that Spring really is coming.  And hopefully once the snow melts and the sun begins to peek through the grey clouds, I will be able to welcome Spring and partake in some of those “RE’s”.

Especially REflect and REmember.

Happy Birthday Gracie!

Poppa and Hugo (photo by Natalie Hemmerich):

Sam at Jungle Cat World (photo courtesy Natalie Hemmerich):

Nanny and Hugo:

A bittersweet day. Sam, riding Stella’s bike (March, 2013):


Stella on her bike (October 2010 same age as Sam in pic above):

 

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Jumbled

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Jumbled 

Yesterday Tristan came bounding into my house to do some homework and play with Hugo.  Throughout all that we have endured, I am so humbled by my teenage brother and the man he is becoming.  He adored Stella, the way we all did, yet it was a different adoration because he was a teenage boy and it wasn’t “cool” to spend time with your little niece.  But he did it anyway.  He took her to school with him, had a photo of her in his locker, skipped movie dates with friends to watch her hunt Easter eggs instead.  He was always terrified that something would happen to her, and I would roll my eyes in exasperation when his pestering about a fever or whine would get to be annoying and snap, “Tristan—she’s fine.  Nothing is going to happen to her, quit worrying.”  After we got the news that Stella was going to die, he was one of the hardest people to tell.  I remember we had him come to the hospital with my mother, our friend/grief expert An and our other friend/Asperger’s expert Cheryl.  When Tristan saw me standing in the hall of the hospital he ran to me, his face contorted with worry and said, “Mish…just tell me she’s going to be okay”.  I put my arm around him and began walking him to “the room” they had given us to meet in.  He pulled away and kept repeating, “Mish, what’s wrong?  Tell me…she’s going to be okay, right?”.  I had barely sat down in the room and turned to him when he began dry heaving into a garbage can.  “Mish…what’s going on?” he wailed, “Stella’s going to be okay, right?  Tell me she’s going to be okay”.  I remember crying and putting my hand on his knee.  I remember saying, “I can’t tell you that, T.  She isn’t okay.  Stella has a brain tumor and she’s going to die”.  The reaction was an immediate outpouring of anger.  Swearing, ripping a cross he had been wearing off his neck.  Yelling.  He cursed God.  He cursed the world.  He begged me to take back my words.  I sat there and cried, shaking my head.  I didn’t know how to stop the pain from flowing out of our hearts.  It lay there on the floor, a river of tears and dread and horror.  We were bleeding from our souls out.  He was broken, the same way we all were.  The first month after Stella’s diagnosis, Tristan couldn’t stand to be near her.  It was too hard, too sad, too hurtful.  I understood even though I was worried that he would regret his decision to stay away. Eventually he came around and they resumed their beautiful uncle/niece relationship.  As she declined, he stayed right by her side.  He read her books, he sang her songs.  Near the end, when she was too tired to even keep her eyes open, only Tristan and Gracie could get a smile out of her.  Besides Aimee and I, Tristan was the last person to lay with Stella’s body after she died.  He cuddled with her for a long time, whispering to her and stroking her hair.  He held a candle with the rest of us as she was carried out of the house for the final time, and put his arms around Aimee and I as the car with her inside drove away. My little brother trying to offer comfort to us in his time of sorrow.  The little boy whose diaper I once changed now stands a full head taller than me, his shoulders twice as wide as mine, his voice deep and low.   He’s a 17-year old boy.  He doesn’t shower enough, has messy hair, sometimes forgets to brush his teeth, wears ill-fitting clothing, and had to watch his precious niece rot away in front of him.  And yet, he has found enough bravery and love in himself to care for his nephews with the same intense love and fun as he did Stella.  It amazes me that he’s not more bitter about the experience, not afraid to get hurt again.  I am so proud of him.

Anyhow, he came into my house yesterday and told me that he had found on an old telephone of his a recording he made of Stella talking with him.  He was thrilled and wanted to play it for me.  The first recording was taken in September 2011, three months after her diagnosis.  Her adorable little voice says, “Are you going to come to my birthday party?” (friends of ours had a big party for her in September of that year, even though her real birthday is in April).  Then she says, “I’m sitting on the couch with Mama”, and finally, “Bye-bye”.  The next recording was in October, just a month later but this time her speech is drawn out and garbled.  She says something I can’t understand then a slow, “Are…..you…co…ming…o…v…e….r?”, then “I….l-o-o-o-ove…y…y….y….o…u….Unk-ie”.  Hearing her voice again was like a thousand daggers shooting through my veins.  I could have closed my eyes and she would have been standing right next to me talking.  That night, I couldn’t sleep.  I was haunted by the sound of that voice.  I ached with how much I miss her.

I’ve noticed recently that I want to tell anyone and everyone I meet about Stella, about her death.  When the stern man at my school frowned and grumbled a few times while auditing my courses and insinuated that I had messed up some of the confusing paperwork, I wanted to say, “Be nice to me, sir.  I’ve been distracted.  My daughter died”.  When the lady behind me at the supermarket clicked her tongue and sighed loudly at the elderly woman in front of us who was painstakingly counting out .37 in pennies, I wanted to turn to her and say, “Be more patient.  My daughter died.  Standing in line an extra minute isn’t worth getting upset about”.  When the people at McDonalds early Saturday morning see me struggling to sit down with my two boys and raise their eyebrows and whisper about how close in age they are I want to tell them, “Don’t judge me.  I need these boys.  My baby was taken from me and they keep me alive”.  I want to go to the local school and tell them, “I got your letter about registration.  I should be signing my daughter up for kindergarten today, but I can’t because she died”.   I want to tell the nice lady I met at the library this afternoon. The one who looked at Sam running around then pointed out her own daughter and smiled at me saying, “Wait until he’s 2, it goes so fast and they’re so much fun at 2!”.  I want to say, “I know.  I had a two year old daughter who ran around this library and said funny things too, but she died of cancer four months ago”.  I want to sew a big red “S” on my jacket so that when I go out and people ask me about it I can say, “S stands for my daughter Stella.  She liked cupcakes and timbits, green and purple, dancing and laughing.  She died.  She had a brain tumor and it slowly strangled her brainstem, taking away her faculties one at a time until it choked the last breath from her while I held her in my arms”.

What I really want is to share with everyone the experience that we’ve been through.  Not just the fact that Stella died, but the whole ordeal.  I think it’s because I want everyone to share my pain. I want the world to stand there and scream and cry with me, be as sad as I am.  I want them to know that even though I look normal, even though I am out there in society, I am badly scarred.  Just beneath the surface I am raw and hurting.  I want them to shoulder some of my hurt so it’s easier to bear.  But that’s impossible.  Even Aimee grieves differently from me.  We lay in bed together at night and read, side by side but separated by our own thoughts about the little girl that burst into our world almost four years ago, turned everything upside down in a flash of energy and curls, then faded away to the sky.  We grieve together and alone all at the same time.

This morning I couldn’t send Sam to daycare because he had a fever.  He sat on my lap on the couch for hours, feverish and whiny.  We watched Treehouse TV and he sucked on his bottle of milk and/or sippy cup of water. A familiar feeling crept over me.  Sitting on the couch for hours at a time, cradling a little body on my lap.  I held him and smoothed his sweaty hair with one hand, my arms circling him tightly, feeling his breath steadily blowing against my cheek.  I was sad that he was sick, but it was also nice to just sit and cuddle him for awhile.  I remembered back when Stella was his age and used to get sick sometimes.  I was always incredibly stressed about having to call into work and say I wasn’t coming in because of my kid.  My bosses were all really nice people (I worked for three women), but none of them had any kids of their own and I always felt them rolling their eyes at me when I had to miss work because of Stella. I know I was impatient with her when she was whiny, and frustrated about having to sit on the couch all day— boy was I ever clueless back then about “sitting on the couch!”.  Today it felt good to just sit there and care for Sam without worrying about what they thought of me at work, or when he was going to get better.  (Hugo for those of you wondering, was sent to daycare in Sam’s place so I could focus on Sam getting better and not have my attention split between two crying and needy children all day).

All these thoughts tumbled through my head as I sat today.  Thinking about Tristan and Stella and Sam and Hugo.  Thinking about the past and the present.   Thinking about her voice and her smile.  That’s what it’s like for me right now.  Everything is a jumble of thoughts and feeling, all seething just underneath the surface.  They can’t be contained in hours or days or minutes, they just float in and out as I go about my day.

Curls and ice cream and green nail polish and sick babies and the couch and my heart, broken but still beating strongly next to Sam’s.  And then night falls and I realize I made it through one more day without my daughter by my side.  One minute, one hour, one day at a time.

But damn, it hurts.

Uncle Tristan and napping Hugo:

Now that’s alot of boys!  Auntie Heather with Xavier, Hugo and Sam:

Hugo goes to Sunday School:


Hugo and Sam share morning snuggles and bottles:


Stella, March 2011 (in this photo she is stomping on her bagel with her Dora shoes…):


 

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The Long Winter

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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:


 

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