“Supermom”

Download PDF

On the morning of Stella (and my) birthday, I took Sam and Hugo to McDonald’s for breakfast. I have a weak spot for Bacon’n’Egg McMuffins and since it was my birthday, I thought I’d treat myself. Sam and Hugo had been particularly active that morning, perhaps channeling the energy of their sister, and by 8:30am when I finally decided to go to McDonald’s, I already felt like I had been running a marathon. Both the boys like to climb things and that morning I had been dashing between the living room where Sam was climbing and leaping off the back of the couch, and the dining room where Hugo kept attempting to use the chairs to boost himself onto the top of the table. There was crushed Cheerios crumbs spread from one side of the house to the other that kept getting more and more pulverized by little feet, and both boys were stark naked as they streaked by in a flash of shouts and laughter. Hugo had a fresh-looking cut over his eye from a fall into the coffee table a few days earlier and Sam had matching bruises on both his knees from a leap off the beanbag chair that had gone wrong the day before. I felt like they were wild monkeys. Laughing, leaping, untamed little urchins. I had on sweatpants and my winter jacket, my hair pulled back in a messy ponytail. I chased them until I could pin them down long enough to dress them, then bribed them into their stroller with promises of breakfast at “the restaurant”.  I love the stroller. It’s like a legal prison for children. I can sit them down, strap them around their waists and shoulders and take them wherever I want. But, by the time I got them both dressed and in the stroller, I was sweating. Panting a little. I was frazzled, but intent on going to McDonald’s to get my birthday breakfast.

Once outside, with the boys securely strapped into the stroller, happily playing with toy cars they had brought with them for the walk, I began to relax a bit. I thought back about the day 5 years ago that Stella was born and let the tears trickle down my cheeks as we walked. I looked down at the two little blonde heads in front of me and felt amazed at how much Aimee and I have been through since that day 5 years ago when Stella burst into the world, changing us all forever. I remembered the anticipation and excitement of waiting for her birth, and then the awe and raw fear I felt when she finally arrived— a red-faced, red-haired crying bundle of pure perfection.  Remembering her birth was emotional for me, and though I was enjoying being out in the quiet morning sunshine with Sam and Hugo, I was pretty raw by the time we got to McDonald’s. Luckily it’s busy and chaotic there, so no one paid much notice. I moved the boys from their stroller into chairs (nothing to strap them down in, damn!) and began throwing all kinds of food at them in the hopes they would sit still long enough for me to enjoy my McMuffin and tea. Alas, within a few minutes they were leaping off the chairs and attempting to make a break for the doors…into the parking lot, of course. There was remnants of food everywhere and Sam had managed to dump an entire bottle of chocolate milk on his pants, so was whining about wanting to take his pants off as well. By the time I had cleaned up the table and rounded up the boys, I was sweating again. And I was hurting because I was missing my girl. I felt like crap. Tired, sad, worn-out.  Just as I opened the door to leave, a woman called my name. I turned around and a stranger thrust a McDonald’s gift certificate into my hands. She breathlessly explained to me that she was a blog reader, and was amazed to see me at the McDonald’s that morning. I was stunned. And then, she said that before she recognized me, she had thought to herself what a “supermom” that woman was at the McDonald’s early on a Friday morning with two toddlers in tow. As I thanked her and walked away, her words seemed more and more amusing to me. Here I was feeling almost hysterically out of control and ragged, and this woman had dubbed me a “supermom”. She had no idea how much I needed to hear that on my birthday morning.  I realized that I often label other parents I see as being more put-together, more able, and better than me. But to a stranger at a McDonald’s on Stella’s birthday, I was the “supermom”. Back at home, I unloaded by wet, dirty, bedraggled boys out of the stroller and focused on making the day as fun as possible in honour of Stella. I could get through the day. I was “supermom”.

A group of us headed to Riverdale Farm and visited Stella’s tree and bench. The boys oinked at her pigs, mooed at her cows and then we tied balloons to the tree and shed a few tears as Aimee carefully placed a candle with the number “5” at the trunk. Back at home, we ordered food for everyone and sang a rousing rendition of “Happy Birthday dear Stella”, after which Sam, Hugo and Gracie blew out the candles. Then everyone went home, Hugo went down for a nap and all was quiet. Juju and I walked Gracie and Sam to the dollar store where they picked out a gift for themselves (matching pink Easter baskets), and one in honour of Stella (a plastic chicken in a nest), and then dinner. 4:03pm, the exact time that Stella was born 5 years earlier, passed unnoticed. There was food to pack up, dishes to do, laundry to fold, exams to study for.

The next day, life continued on with Easter celebrations and family visits. Monday I started to write final exams for school and now, almost two weeks later, Stella’s birthday feels like a distant memory already. That is the way life is now. We carve out moments, specific times and days to remember and celebrate, but as soon as you turn around, life sweeps you back up again. We got some lovely messages and texts from people that day letting us know they were honouring and celebrating Stella, but then it was all over. We blinked and that moment of remembering Stella was over. I mean, we remember and think of her everyday, but the special compartmentalized day to celebrate her lasted only a few hours. The next morning, Aimee and I woke up and nothing much in the world had changed. That’s how it is when your child dies, the world spins around you, and you are just standing alone wondering what the hell happened.

Recently, I’ve become aware of the stories of two other children who died in the past few months. I read the words of their parents on blogs, and met with one set of parents last week. I saw the haunting horror of losing a child in their eyes, and it made my heart hurt. They wanted help, advice, confirmation that the horrific pain will someday cease. The words others told me when the diagnosis and death was fresh, ring hollow. “It will get better”. “Just give it time”. I couldn’t bring myself to tell them those lies.  I told them all the things that were hard.  How Stella’s friends keep getting older, and moving further and further away.  How we wept on the first day of kindergarten.  How we feel that we are now “behind” where we are supposed to be in our parenting.  How the sense of injustice and sadness never leaves you.  But I wasn’t sure if it was what they wanted or needed to hear.  How do you tell them? How do you make them understand that it doesn’t really get better, and time is as much an enemy as a friend, but you get used to the pain and if you continue to look for tiny moments of pleasure each and everyday, you will be okay. I can viscerally feel their desperation and pain. I want to help, but the truth is, everyone has to walk their own path of losing a child and it is different for everyone. But I am glad that I am no longer “there”, in that place of darkness and anguish when the grief is so fresh and raw that it hurts to breathe. As unbelievable as it is that I had to celebrate the birthday of my eldest child at a tree and bench, instead of holding her tightly in my arms, I am glad that I am on the other side of those early moments.

Sometimes, I find myself daydreaming about her. I wonder what she would look like and sound like at age 5. I ponder if Sam would be a bit “tougher” if Stella were here to boss him around. I try to imagine her and Gracie going to the movies together to see “Frozen”, and how good she would have been at sports. But I never daydream for long, because my life is good now and I don’t want to miss out on the here and now thinking about the could have beens.

The truth is, as much as my heart aches for Stella, I can’t imagine life without our two boys anymore.

Life looks differently then I ever imagined it would be five years ago.  Life for us now is not about kindergarten or playdates at the zoo or dresses or hair ribbons.  Life is naked boys leaping from furniture and food on the floor and trucks in the toy box.
Life is writing exams and talking about paint colours for the cottage. Life is getting a driver’s license and cutting coupons for orange juice. It’s messy and frantic and so very deliberate. Stella and I have both turned a year older, and as the old adage says, you should count your years in smiles, not tears. I’ve had a lot of tears the last few years, but I’ve also had more than my share of smiles and laughter. And the best way I can think of to honour Stella is to keep her love in my smile. So my dear Stella, “Today you are you, that is truer than true. Today no one else is more youer than you” – Dr. Seuss

I think I’ll take the boys to McDonald’s with my gift card tonight. I’m feeling a “Supermom” moment coming on.

The boys at McDonald’s, morning of April 18th, 2014 (Stella’s birthday)

IMG_6711

Easter fun! (Xavier, Sam, Hugo):

IMG_1150Bubbles at the park (Gracie, Auntie Angie, Hugo, Sam):

securedownload

 

IMG_6745

 

Happy Birthday, baby girl:

IMG_1869

 

Download PDF

Happy Birthday Big Girl (By:Aimee Bruner)

Download PDF

Happy Birthday Stella!   

I want you back.

The day you were born was the happiest day of my life.  I remember it like it was yesterday – the sky was mostly cloudy that day but the sun managed to burst its way through the clouds and fill the room from every angle, when you arrived to change our lives forever.  I remember cradling your tiny head in my hands – tears dripping from my eyes onto your head full of strawberry hair – seconds before someone yelled – “It’s a girl!”  It was like my life started at 4:03p.m. on that perfect Saturday afternoon.

Today, your mama and I will take our heavy hearts to visit your tree and bench at Riverdale Farm.  Before we load up the car to go, I will put the candle, in the shape of a number 5, that I bought at the local party supply store, in my coat pocket.  We’ll stuff as many balloons that will fit into the back of the van and we’ll stop at Tim Horton’s for a box of chocolate Tim Bits on the way.  We’ll tie balloons to your tree and lean the candle up against its trunk.  We’ll eat Tim Bits and we’ll think of you.  We’ll think about how funny you were from the moment we met you.  We’ll hear your infectious cackle bounce off the inside of the walls of our hearts – that are forever cracked from the pain of missing you.  People walking through the park will glance over and smile (as they usually do) – they don’t realize that we’re celebrating the life of a little girl that never got to be 5….or 4.  They don’t realize that right underneath the surface, there are two mommies drenched in grief.

The truth is, Stella, I want you back.

Every minute of every day – I want you back.  I want to take you to swimming and soccer on Saturday afternoons.  I want to drop you off at birthday parties and pick you up from your first sleepover. I want you to curl up with your cousin, Gracie, and watch Frozen on Sunday mornings.  I want you to bully your brothers and boss your little cousin, Xavier, around.

I want you to be HERE, with me.

I want you to have a backpack and I want to make your lunches for school.  Lately, when I watch your friends play, I find myself imagining what you would look and sound like as a five year old kid.  I imagine your red curls, dangling past your shoulders and your long, stretched out frame, with knobby knees.  I can hear your voice.  It’s raspy.  You are the leader of the pack.  Just like you always were.  I love remembering how much you loved your birthday and birthdays in general, for that matter.  Nothing made you happier than a cake filled with candles heading in your direction.  Even when you could no longer sit up or talk, you always managed to figure out how to arch your back and move your torso and push out a “yyeahhh” as soon as the lights dimmed and the first notes of Happy Birthday began.

Today, your Auntie Juju, Auntie Andgie and cousin Gracie will make you a Stella and Sam cake and Uncle Tristan and Dee Dee will make you cup cakes.   Your beloved grandparents, aunts, and uncles will cram into your little bungalow to celebrate your life.  You see, even though we’re all still shattered from the loss of you – we couldn’t think of anything else we’d rather do than to remember and celebrate the day you were born.  We will always come together to honour and celebrate you.  You mattered.

We’ll sit on your couch and watch your Auntie Heather do funny imitations of you telling her that her “mouth was dirty” one morning.   We’ll laugh out loud remembering all of the times you would say “no – I don’t like you” not only to each one of us, but to perfect strangers too!  We’ll talk about how funny you were from such a young age and how you had inside jokes with people even though you were a toddler.  We’ll remember how you loved to hold your baby brothers and how much you loved them……most of the time.  We’ll remember how much you loved all of us in your own way.  We’ll remember how you used to call watermelon “waterlemon” and how you called Aldwych Park “sandwich park”. We’ll smile as we picture you leaning over the fence at Riverdale Farm, yelling “Pee-yew Stinky Pigs!  Don’t pee on the ground, pee in the potty!”  We’ll remember how much you loved accessories and how you insisted on wearing five pairs of underwear on top of your pants to daycare.  We’ll remember how much you loved your froggy boots and how many hours in a row you could watch, and enjoy, Dora the Explorer.  We’ll remember how you were the youngest human on earth to watch the Golden Girls.  We’ll remember how you knew every word to the theme song.  We’ll remember how you adored your stuffed animals – Sweet Pea, Giraffy and of course – Pink Kitty.  We’ll remember how your favourite colours were green and purple and how deeply you loved cupcakes.

 

We’ll remember everything about you.

 

We’ll put five candles on your cake and we’ll sing Happy Birthday to you as tears stream down our faces.  We’ll eat cupcakes.

And when the party is over and our family has gone home, your mama and I will sit quietly and remember our little girl.  We’ll remember the weight of your body as we held you in our arms, the smell of your curls and the feeling of your soft cheek against ours.  We’ll remember the things that no one else gets to know – just us.

We will remember you.  Always.

Happy Birthday Big Girl!

Love, Mommy.

IMG_0421

IMG_2393

IMG_1056

IMG_1004

IMG_3524

Download PDF

Crib Notes

Download PDF

Final Exams for me are starting this week.  The last few days have been a whirlwind of trying to balance motherhood, school and marriage.

I’ve had no time to write on the blog, no time to breathe or respond to emails or phone messages.  And just when everything is ramping up, when everything is starting to feel overwhelming and stressful, I realized that Stella’s birthday is just a few days from now.  Friday April 18th— Good Friday.   For Christians the day marking the crucifixion of Jesus.  How appropriate and inappropriate all at the same time.

This is one of those times when I realize that being a grieving parent means sometimes having to ignore the ache in your heart to focus on the immediate tasks at hand.  I wish I could just walk up to all my teachers at school and hold up my hand and say, “STOP!  I need to walk away from school until I can get through my daughter’s birthday.  I don’t care about the exams, projects and presentations.  I need to grieve”.  But life doesn’t work that way.  I have been swept up in the stress of real like expectations and requirements and so I cannot allow myself time to sit and cry over my beautiful curly-haired daughter today.  I have to study, study, study.  3 exams in the next three days, then her birthday off to celebrate and mourn and then study, study, study, 4 exams next week.  Running, running, running.  Reading cue cards as I clean up the dinner dishes.  Reviewing notes over breakfast.  Watching pathology videos on my phone as I absentmindedly try to read stories to Sam and Hugo.   Frantically reading powerpoint slides on the bus to school, demanding that my brain soak up information even though every cell is telling me it’s tired, worn out and wants to do something else now.  Trying to keep up with classmates who often yawn at the end of classes and tell me they are going to go home and have a nap before they begin studying, or complain about how they have catch up to do because they went to the bar Thursday night. I sometimes want to punch those students.

I’ve got to hit the books, just wanted to say I haven’t forgotten about the blog…it’s just I’ve got no time.  I fall into bed at night and then jump up in the morning and it’s go-go-go all the in between times.  Aimee is writing a blog post for Stella’s birthday on Friday, so there will be something coming then (o:   .

Stella’s birthday.  A day to celebrate.  A day to mourn and rage.

Ice cream for breakfast.  Timbits for lunch.  Macaroni and cheese for dinner.  Golden Girls and Dora The Explorer all day long.

Missing my daughter.  Reading The Principles and Practices of Embalming.  Wiping Sam’s nose and changing Hugo’s diaper.  Listening to Aimee’s work news.  Laundry to put away, dishes to do, groceries.  Buy balloons for Stella’s birthday.    All of life colliding into one big mess of priorities and I am emerging frazzled and teary, but determined.

One more important thing… Baby Stephanie is sick.  Very sick.  Please send your wishes, prayers and thoughts to her and her family.  I remember being where they are now.  Nothing to distract you from the agony of helplessness and despair.  Nothing to stop you from free-falling into the blackest darkness on Earth.  A kind word is like a small candle burning through the clouds, making the journey a little less lonely.  You can connect with Stephanie’s family through : babystephanie2014@gmail.com

 

 

Studying now.  Crying later.  Celebrating (hopefully) after.

 

To everything there is a season and a time to every purpose under heaven.- -Ecclesiastes 3:1

Xavier and Hugo at park:

 

IMG_6686

Sam at park…wearing his pink Dora crocs…inspired by Stella!
IMG_6687

Breakfast at McDonald’s:

IMG_6683

 

Breakfast at home:

IMG_6677

 

A new photo!  My friend Omo found this in her collection and sent it to me.  I LOVE seeing new photos of my girl!!!

IMG_6835

 

Download PDF

Second is Worse than First

Download PDF

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!):

IMG_6593

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:

IMG_6606

 

Stella…5 weeks old:

Month 2a

 

 

Download PDF