Five Years

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I can’t believe it’s been almost 3 months since my last blog posting.  Time is such a funny thing.  Sometimes the days and weeks pass so rapidly now that I feel like I barely have time to breathe.  I flip the pages on the calendar in the kitchen and can’t believe it’s been another week…month…season…year.

After spending so much time in what felt like a vacuum where time was meaningless and the only thing that mattered in life was whether or not Stella was still alive that day, I still feel frustrated sometimes by how everything just keeps spinning and we have to run to catch up.  It’s made me think a lot about the whole idea of time and space and grief.  Is it that time really softens the pain, or is it that the world doesn’t give us the time we really need to grieve and remember?

June 24 marked 5 years since the day Stella was diagnosed with DIPG.  It’s a horrible anniversary.  A piece of me died that day, and even though Stella lived for another 16 months and taught me the true meaning of life as she did it, for Aimee and I June 24, 2011 is the day that our future was ripped from our hands and hearts and lay bleeding in front of us.  We didn’t do anything organized to mark the date.  We both cried a lot, and Aimee took the day off work and spent most of it by herself at the Eaton Centre doing shopping therapy., followed by a solo visit to Stella’s tree.  I worked, going to a Catholic Church that day and helping another family say farewell to someone they loved very much and trying not to think about what the day meant to me.  I avoided looking at the clock as much as possible to stop the persistent memories from flooding my brain about what had happened that day 5 years ago at 7am…9am…2pm…etc. etc.  It worked for the most part and Aimee and I got through it with an almost familiar pattern of me trying to forget and avoid the pain of the day, and her needing to feel it.

When I woke up that morning, I thought about how strange it was that this combination of dates was so painful to Aimee and I, yet reflecting how no one else would remember it.  I was shocked when barely into my morning I received a text from my friend Sheri who wished me strength on the day.  Then I got a phone message from my friend Omo and a text from Tasha.  Later my sister Heather showed me a beautiful message my 20-year old “tough guy” brother had posted on Facebook commemorating the day which many others had commented on or “liked”.  I couldn’t believe that people remembered and even though I didn’t really speak to anyone about that day directly, knowing that I wasn’t alone in my grief, knowing that even 5 years later Stella is remembered, was like having a warm blanket pulled over my chilled body.  It was truly touching.  I don’t expect people to remember— Lord knows I remember nearly no dates that are important to my friends— but that day I felt so much less alone than I had expected.

Thank-you for that unexpected gift.

I can’t believe it’s been 5 years since that horrible day.  I can’t believe Hugo is almost 4 and Sam will be turning 5 in the fall.  I can’t believe how unrecognizable my life is.  Slowly Stella’s stuffed animals and tea party set and puppet show and doll stroller have been pushed into the corners which are now overtaken with trains and superheroes.  I know the names of all 6 Power Rangers and can tell you the “secret identity” names of Superman, Spiderman, Batman, Robin, Wonder Woman and more.  I know who Jayna and Zan are.  I am aware of the secret powers of Flash, Green Lantern & Hawkman.  I can have a semi-intelligent conversation about how Lex Luther and Brainiac and Cheetah keep trying to take over the world with their high tech computers and why they keep failing.  Sam plays T-ball and rides his bike incessantly.  Hugo loves to be in the water and wrestling with cousin Xavier.  And sometimes I sit at my desk at work looking at a file and don’t understand how I went from taking minutes at meetings about early psychosis intervention pre-2011, to calling families up and asking them to please bring in a scarf for their loved one to cover the embalming scar.

My sister Heather had a baby at the end of May.  A perfect little boy (named Isaac).  My brother Tristan graduated High School mid-June and he remarked on that day that my son Hugo was born just as he started High School, and now Isaac was born just as he was finishing it.  How is it that life has so many endings and beginnings?  I feel like everything is just moving so quickly and I have to work harder and harder to remember the lessons of Stella about appreciating all the little things and taking time to be in the here and the now.  Sometimes when I’m standing at a grave and the Priest is doing the final committal instead of listening to his words, I try to take in all the tiny things around me.  I concentrate on the subtle pattern my high heels made in the grass as I walked to the grave, or notice how the slight breeze lifts the pages of the Priests book as he reads.  I try to be aware of the warmth of the sun against my cheeks and try to spot the ant crawling around the tombstone.  Only in those moments can I really feel like I’m “there”.

It’s hard to put into words what the long-term effects of such a deep grief are.  How changed I am from the inside out.  I’ve found a way to be happy, worked hard to find the JOY that Stella challenged us to find.  But I’m totally different now.  I can understand how easy it would be for peoples marriages to dissolve after the death of a child because you’re not married to the same person anymore.  Aimee and I have found a way to hold each other up through mutual respect and understanding of our individual needs.  But I’m certainly not the same person, or parent.  I’m lackadaisical… to a fault some people would say.  But I don’t care if the kids wear pyjamas to school or if they strip down to their underwear and jump into a local wading pool on a whim.  I don’t stop them from splashing in mud puddles (even when they are in clean clothes).  I’ll buy them freezies from the store even if they didn’t eat all their broccoli and let them stay up past their bedtime watching movies with me in bed at the cottage on a Saturday night.  If I drip water on the floor, I usually don’t even notice.  I prefer paper plates at Christmas so no one has to spend time doing dishes.  As an employee I’m not likely to volunteer to work overtime, and try to get out of night shifts anytime I can so that I can be with Aimee and the kids as much as possible.  I’m a lazy friend, I never cook (though I love to eat what other people cook!) and I sometimes wear pyjama bottoms and flip flops to the corner store.  In order to survive I’ve had to cut out all the things my brain believes are unimportant…random rules that society sometimes puts out that I just can’t get behind.  I’m sure I’m pretty frustrating to be around for a lot of people.  However, I truly feel less stressed than I used to be and more true to how I want to live my life.

Sam and Hugo were talking about Stella the other day.  They do that sometimes.  Sam was telling Hugo that they never get to see Stella.  They were speaking about her in the context of Isaac.  Auntie was going to have a baby and they waited and waited and now he’s here and they can see and feel him.  But Stella…we celebrate her birthday, we talk about her all the time and they see pictures and her toys, but not her.  They are frustrated by it and even as I said the words, “Yes, you will never ever get to see her with your eyes because she died” the words felt so horribly final to me.  Sometimes I feel like I would do anything just to smell her forehead one more time, or wrap one of her curls around my finger.  It breaks my heart to watch videos of her talking and saying “Momma” to me because the 2-dimensional version of her is not what I wish for.  So I just don’t watch.  I protect my heart by only pushing myself so far.  It’s not denial, but it’s a protective coating for sure.

Now that the dreadful date of June 24th is over, I’m very aware of the summer and all its joys.  I love spending time up at our cottage with family and friends and I never feel as happy as when I’m jumping into the lake with the kids and we all screech with delight at the first feeling of cool water and sunshine on our faces. Five years ago it hurt so much to wake up in the morning, I didn’t want to get out of bed and face the reality of my day.  Now I laugh with pure happiness when I get splashed in the face by a water blaster.  I can still easily get caught in the net of grief and the darkness of all the “what if’s”, but I try not to.  I really believe that Stella lived her short life in a way that I would love to match.  One day at a time, one challenge at a time, and always with a huge smile.  She taught me that there’s always a reason to smile, you just have to find it.

Two of my biggest reasons to smile, Hugo & Sam:

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Welcome to the family!  My sister’s son Isaac Elliott was born May 27, 2016:

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The three musketeers…Sam, Hugo and cousin Xavier spend a lot of time together:

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Big cousin Gracie (she’s 8 now!!!) is still looking after all the boys, still remembering her beloved cousin and BFF Stella:

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Stella at 11 months old.  I can hear her laugh in this picture…

Week 43

 

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The Worst Day of My Life (by: Aimee Bruner)

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I should have been dropping you off at school today Stella.  Just like all the other parents are doing as they wrestle through the chaos of their morning routines, sipping coffee while trying to get to work on time.  This warm Wednesday in June should have been like any other – but it’s not.  This is the day, three years ago, they told us you were going to die.  June 24th, 2011 – the worst day of my life.  This day is one that your mama and I, along with those who love us, have tried to erase from history.  It’s one that I’ve buried as far down into the depths of my being as it will go but it always manages to creep back up and make its way through the cracks in my heart.  If you scratch just beneath the surface – it’s there.  The trauma of that day is etched into me with no detail left behind.  I remember what I wore that day.  I remember what you wore.  The green shirt with a bicycle on it, the brown hat I had just bought you from Roots and of course – your new “doctor’s shoes”.   Those white and pink shoes mama bought you were what we used to bribe you into going to SickKids that morning.  I remember the smell of the atrium, the echo of the Starbucks line and the green cages above the railings on each floor.  I remember your aunties arriving one by one as they (unbeknown to us) became increasingly worried about what could be wrong with their curly haired, smart mouthed, exquisite, imp of a niece.

I remember the subtle glance that the intern neurologist gave to the 3rd specialist that examined you when he caught sight of your big toe sticking up.  Looking back now, I know they knew something horrific was lurking in your head.  I remember wandering through the gift shop looking for the best thing to buy you.  I settled on a little Dora doll and you loved it.  I remember glancing down at a book in that store – “C is for Cancer” it was called.  When I saw it, I felt sad inside for the parents whose kids had cancer.  I remember the toy doctor’s kit your aunties bought you from that store, equipped with everything a doctor would need, including the little, round, blue glasses that you would put on and never take off for the 5 days that followed.

I remember all of it and it makes me sick.

I remember hearing the words “mass”, “oncology” and “brainstem”.  I remember the sad, weighted look on the doctor’s face when I asked him whether there was a chance that the tumour was benign and I remember how quickly and confidently he said “no”.  I remember watching your mama fall to the floor as the medical team worked to revive her from her terrified, faint and traumatized state.  I remember retreating to the bathroom near the nursing station over and over.  Staring at myself in the mirror, pregnant belly and all, asking myself out loud “what are we going to do?  why is this happening?”  while pounding my fists against the wall.

I remember how much fun you were having in the hospital.  Running from floor to floor, wearing a pink tutu, eating 3 hamburgers a day, holding court while surrounded by your family, friends and favourite people in the world.  I remember how hard I laughed when you started to cry and tantrum when it was time to leave the hospital.  “I don’t want to go home!”  “I want to stay in this hospital!”  It was the first time I had laughed in days.

When I look back on the horror of that day, four years later, I am amazed that we lived to tell about it.  Human survival is an amazing thing.  That, the army of people that joined forces to lift us up and hold us where we needed to be to make it through each day, and of course – you.

Last week, as I sat in the 3rd row at your mama’s graduation, I was overcome with emotion.  There I sat, for over an hour as I waited for the ceremony to start, in a fountain of tears.  Flashes of June 24th, ran through my mind and I my thoughts were filled with the weight and enormity of what your mama had to overcome to be there.  Standing in a graduation gown, holding her diploma – a funeral director, because of you.  You would be so proud of how she has chosen to live the rest of her life honouring you and what you’ve taught all of us.

Stella – because of you, we are still here.  In so many extraordinary ways, you’re still here too, tethered tightly to us.

We love you big girl – on this day and every day.

Love,

Mommy

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Stella the day after she was released from hospital

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Sam & Hugo, Stella’s greatest legacy:

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D-day (By: Aimee Bruner)

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By: Aimee

Three years ago today, my life fell apart in the dim light of a hospital room at 12:30a.m. With cartoons playing on an old TV attached to the ceiling, Mishi snuggled into the hospital bed, cradling Stella in her arms, I was curled up on the hard bench attached to the wall, slowly drifting into the state you reach seconds before you fall asleep.  Then it all stopped.  The door swung open, a sliver of light filled the room and a team of doctors in scrubs lined up along the wall.  As the lights came on, one of them started to speak.  To this day, the only words that came out of  “Dr. Doom’s” mouth that I remember are “mass”, “brain”, “oncology”.   I remember Mishi lurching forward, looking at me in hopeless desperation and saying “Aim – NO NO NO!”  I was frozen, unable to move, just watching it happen.  One of the residents had to help me move across the room to be at Mishi and Stella’s side.  Stella knew something was wrong right away and started to squirm to look at Mishi.  Mishi’s eyes rolled back in her head and she fainted – out cold.  Our world was exploding and we were being crushed under it’ weight.

 

There we were, alone – losing everything we had.  Earlier that night, we had sent our family home because we were told that we would not receive the MRI results until the morning.  As four doctors worked on Mishi who was still unconscious, I was franticly trying to clutch Stella in my arms as she screamed for her mama – “I want my mama!  What’s wrong with mama?!”  As she hit and kicked me, I managed to get my cell phone out of my pocket.  I needed my parents and I needed my sister.  They came.  They came right away – and they never left.

 

Although the excruciating moments that unfolded over the next four days and the weeks to come will never be gone from my memory, I won’t recant them any further on this page.  Mishi has since been diagnosed with PTSD from the experience of Stella’s diagnosis and I won’t drag her back through it on this blog that is so sacred to her.  She won’t be reading this post as I’ve warned her not to.  It’s just too hard.

 

From the very beginning, my defense mechanism has been a form of denial that only allowed me to take in minimal information at a time.  When Stella was diagnosed, I was the only one in my family who didn’t Google DIPG.  I was afraid to.  Just knowing that my daughter was going to die from an inoperable brain tumour wrapped around her brain stem was enough information that my mind, heart and soul could handle.  Lately however, three years later, I’ve found myself wanting and needing to know more.  Mishi and I made the decision early on to donate Stella’s tumour.  Two weeks after her diagnosis, after we watched our daughter be wheeled out of the doors of the pre-op room on her way to the O.R., where they would biopsy her tumour, there was a nice, quiet man hovering by the door way.  I knew why he was there and as we walked out I said to him “are you waiting for us”.  He said “yes” in a meek, nervous voice and as he clutched onto his clipboard we put him out of his misery.  We asked him if he wanted to know if we would donate Stella’s tumour and he said yes.  He handed us a package that was an inch thick and I can tell you right now, neither one of us read a word of it.  We just asked him where we needed to sign and that was it.  The details of what we had just signed to were not important to us.

 

After Stella died, people kept asking us when/if we were going to find out what they learned from the donation of her tumour.  I wasn’t ready.  As little information as possible – that is how I had been coping.  For the past few months however, I’ve been haunted by the feeling of not knowing and I realized that I needed to know what the tumour looked like, how big it was or whether it looked different because it was never treated with chemo or radiation.  I found myself wanting to know why Stella was an “outlier” from the beginning.  I needed to know it all.  They cut into my baby after all – I deserved to know.  So after reading about Stella’s pathologist, Dr. Cynthia Hawkins, who just received a million dollar grant for her groundbreaking  research and recent  DIPG discovery – I made an appointment.

 

Two weeks ago, my mom, sister and I walked through the doors of SickKids hospital once again.  Immediately, my stomach was in knots as we rode the glass elevator up to the 8th floor.  “The 8th floor” – a term that three years ago meant something different to me.  As a long time employee of Camp Oochigeas, “the 8th floor” is a term that I am all to familiar with as it’s mentioned multiple times a day.  It’s where the magic happens.  Where kids with cancer get to participate in camp programs led by my incredible co-workers who are so good at making kids smile.  Now, “the 8th floor” is where I was going to hear the results of my firstborn child’s autopsy.

 

As we sat in the same room that we did three years ago, when they delivered the news that the biopsy results confirmed that Stella did indeed have DIPG, I could feel myself going into “robot mode” for survival.  Stella’s Oncologist, Dr. Bartels and her pathologist, Dr. Hawkins were very gracious and spent an hour with us.  They answered all of the questions we had and they let us look at the scans from Stella’s MRI.  Yes, it’s true – that was the very first time that I laid eyes on her scans.  Survival.   In the days leading up to this meeting, I had prepared myself for the moment that we looked at scans of her brain.  I am still triggered by any images of the brain.  I was prepared to see the tumour.  I was prepared to feel sick and sad.  What I was not prepared for was the impact of seeing the outline of her face on the scan.  There she was, my beautiful little girl, with her turned up nose, defined chin like her Poppa, and her perfectly round head.  I wasn’t looking at a brain – I was looking at my Stella.  I swallowed hard, blinked the tears from my eyes and tried to suppress the overwhelming sick and sad feeling that was washing over me.  My sister snapped a photo of the scans and I later sent them to Stella’s Auntie Ray who says that the tumour looks like a monster.  She is right.  It does.  It was.

 

After peppering the doctors with questions, we learned that as it turns out, not only is Stella’s tumour being used in the DIPG research – her little brain is changing lives.

 

It is playing a significant role in the groundbreaking research that Dr. Hawkins is currently doing.  Dr. Hawkins has discovered that there are 3 sub-groups of DIPG.  Stella fell into one of those sub-groups.  Through recent learnings, they have been able to determine that there are certain types of DIPG tumours that will never respond to radiation.  This will allow doctors to tailor treatments to each child based on the type of DIPG tumour they have.  In laymans terms – kids with tumours that will not respond to treatment will potentially not be radiated at all.  Stella’s tumour is constantly being referenced and compared with other cases.  For many reasons, I find so much comfort in that.

 

 

So Stella – on this day, as my heart sits heavily in my chest, I want you to know that YOU are changing lives.  YOU MATTER.  I miss you every minute of every day and I’m so proud of the impact you’ve had on this world.

 

Mommy loves you big girl.

 

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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…

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Stella…5 weeks old:

Month 2a

 

 

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The Darkest Place

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Thank-you to everyone who let me know you’re still out there reading— that was nice to hear!

On the DIPG web, under the discussion boards where bereaved DIPG parents gather, there has been a couple of interesting threads regarding mental health issues— specifically medications people are on, and suicidal thoughts that parents have had in the past, or are having now.  Even in a supportive, somewhat anonymous environment where everyone involved has lost a child to this devastating disease, there is a gingerness to how it is all discussed.

It is a well known fact that people are uncomfortable speaking about death and dying (particularly when it comes to children), but even more striking is the shame and secrecy surrounding the dark places our minds can go to when dealing with this type of calamity. So, in case it helps anyone, I want to talk about my own Mental Health journey.

Anxiety and depression are fairly commonplace in my particular family. Several family members spanning generations have been on various types of medications to help stabilize moods. My sister in particular, has had very public battles with anxiety and struggled with the stigma attached to long-term use of medications. She tried to wean herself off several times, trying other methods of coping and seeing various therapists and Doctors, but it was always disastrous. Finally, we told her that if she were a person with a chronic heart condition, no one would think twice about encouraging her to take medications, so why was it a problem when you have a mental health issue? She, and other members of my family, continue to deal with other peoples perceptions of anti-anxiety medications and mental health.  I myself was never on any type of medication, although my high-strung, Type A personality (I later found out), was really a manifestation of anxiety just waiting to explode. And though I was never diagnosed, it is clear to me retrospectively that I had some level of postpartum with Stella. For weeks, I cried uncontrollably each evening at 7pm. I felt incompetent, and sometimes didn’t even want to hold her. It was awful because people kept telling me how lucky I was, and oohing and ahhing over our perfect, beautiful, red-headed baby girl and I just wanted to disappear with my feelings of disgrace. It took a long time for me to feel normal again.

So, with this history, it wasn’t too much of a surprise that when Stella was first diagnosed, my body completely shut down. For days I could not eat or sleep. I didn’t want to be anywhere near Stella. I didn’t want to see or talk to anyone. I was broken, incapable of doing anything but breathing— and even that hurt too much. These, I think, are fairly normal reactions. But at around day 3, I realized that I wasn’t coping as well as some other people with this diagnosis because it hurt to live. Everything hurt. Physical, mental, emotional pain wracked my body and brought me to my knees. I would sometimes be standing, speaking to someone and I would literally feel myself physically sinking into a dark hole. The scariest thing about being in this hole was not the darkness, it was the sensation of free-fall. Of having nothing and no one to hang on to. Sometimes I would physically grab at my own body, curl into the fetal position and rock back and forth while sobs shuddered through my body.  I tried desperately to ground myself, but I couldn’t stop the stabbing pains in my chest. I couldn’t stop the whooshing noises in my ears. I couldn’t stop the relentless ice in my stomach. It gave me a new appreciation for what people like my sister, and other people with anxiety disorders live through when they have an attack. In my situation, it was triggered by a specific event, but for most people they have no warning of when or how they will suffer an attack, and that is scariest of all. Out on a benign evening out at the theatre, watching a child’s soccer game, having a normal day at work. Everything is fine and normal, then bam!, you’re on the ground.

Unlike Aimee, who got great comfort from being surrounded by friends and family, I just wanted to be left alone. I would wrap myself in the big gypsy-style skirts I was wearing that summer, curl into a ball and just sob trying to make the pain stop. Was I suicidal? I’m not sure. I don’t think so. Most of all, I was focused on making sure that Stella was never going to experience pain or sadness. I would fantasize about giving her a med overdose or something so that she would never have to go through losing her faculties one at a time. When the doctors mentioned that doing a biopsy of her brain tumor would be extremely dangerous and come with a high chance of permanent brain damage, or immediate death, I found myself wishing they would do it to just end everyone’s torture sooner rather than later. I was haunted by knowing what was coming… knowing that my energetic daughter who was literally bouncing around the hospital playroom laughing and giggling, was going to lose her ability to walk, talk, hold a crayon, etc. etc. I didn’t want that for her. I kept thinking it would be better to give her the best day of her life, maybe Great Wolf Lodge and ice cream and hamburgers, then end it all. It seemed the most humane thing to do for everyone.  To be honest, the only thing that stopped in those first dark days, was the knowledge that it was a crime and that I would be taken away from Aimee and our unborn son and thrown in jail. Part of me didn’t care— I would die for Stella— but I felt like I couldn’t do that to Aimee. So for weeks, I lived in this torturous land of not being able to see past the pain and horror of what was to come.  I lost myself in a fantasy world and worked out complex plans of how I could make it all go away.

Aimee and I were lucky and got in to see a fantastic psychiatrist in August, just 6 weeks after the initial diagnosis. Even so, by the time we got in, I was a mess. I had lost a ton of weight, I couldn’t stand the thought of waking up each day, but worst of all, I was missing time with Stella. Good time when she wasn’t having many symptoms and death was still far from imminent. But I couldn’t function.  I couldn’t be present.  For the first little while, the psychiatrist tried various medications to help stabilize me. Selexa, Seroquel, Zoloft, Ativan, Cipralex, Clonazepam. I was desperate. I tried anything and everything, different combinations and times. Some meds seemed to make it worse. I would hyperventilate and gasp for breath as there was a crushing feeling in my chest that threatened to bury me with its weight.  Some meds made me sick to my stomach, some just made me pass out into a deep, dreamless sleep.

Awful does not even begin to describe what those first few weeks were like. Finally, after several tries, my psychiatrist and I figured out a cocktail of drugs that made life tolerable. At first, all they did was numb everything. I felt neither happy nor sad. There were no ups or downs, just a steady, constant humming that reverberated through my body and made me feel more like a zombie than anything else. I still remember my inner dialogue saying things like, “That was funny, you should laugh” and I would force myself to chuckle in a way that sounded hollow to me, but seemed to fool others. I knew how I was supposed to act in certain situations, but because I could feel nothing I just did my best to act normal, though I was dead inside. Even though I felt nothing, it was better than feeling horrible all the time. And when it got really bad, when I couldn’t stand the pain, I had a med that would put me to sleep and give me just enough of a break to gather strength so I could get up and be a parent to Stella again. When I look back at the thousands of pictures we took between the time Stella was diagnosed and the time she died, I am pleasantly surprised at how functional we all were. From trips to Great Wolf Lodge, to Sobey’s for avocados, the park, Riverdale Farm, puppet shows, sing-alongs at home, baking cakes, swimming, etc. etc. etc. I am there, with Stella, smiling and living each step of the way. I wouldn’t have believed that was possible the first few weeks after diagnosis.

The meds didn’t take away all the anxiety and depression. There were times when I was still thrown into that dark hole and would have to claw my way out, one excruciating breath at a time. I clung to Stella as my touchstone. I would tell myself that no matter what I was feeling, no matter what I was thinking, I had to stay positive and happy and cheerful for Stella. It wasn’t always genuine joy, but I was able to be there for her, which is what needed to happen.

Aimee and I attended weekly therapy sessions faithfully. My fantasies of killing Stella to spare her the agony of DIPG were accepted and put into context. Safety plans were put into place for both Stella and I regarding her medications. Nonetheless, I used to keep—hidden deep inside my closet—an extra dose of Stella’s medicine. I don’t think giving her a double dose would have been enough to harm or kill her, but it was like my little insurance policy. Right to the last days of Stella’s life, I was honest in telling Aimee, our psychiatrist and our palliative care doctors that if I ever felt Stella was suffering in any way, I would take matters into my own hands. It wasn’t a threat, although I understand how it could be taken that way, it was just my desperate attempt as a mother to spare my child as much as possible. When every ounce of control was taken away from me, it was the only way I could think of getting some of it back.

But, anyone who has followed the story of Stella knows that we never got to that point. Despite the fact that DIPG did take everything away from her, I can honestly say that I believe she was happy, pain-free and felt loved and safe the whole time. It wasn’t easy. In fact, extremely difficult is an understatement. But, in time, Aimee and I learned to (our motto—) “find the joy” in each day, each stage, each small victory. And Stella taught us that quality of life is not measured in what you can’t do, but what you CAN do.  She really was the most remarkable child.  So young, so small, but with the power to change peoples lives forever.  It still stuns me when I think about it.

As the weeks turned into months after Stella’s diagnosis, everything settled down a bit. I still had bouts of anxiety and depression, but they became further and farther between. I still had my meds, I still had my psychiatrist, and I still had a wonderful, supportive family that held me when I needed to be held, reminded me to stay grounded and feel the chair beneath me and breathe. A family that didn’t judge me and my medications, but rather encouraged me to do whatever I needed to stay healthy.

When I got pregnant with Hugo, I continued to take my meds (in consultation with my Doctor), as it was decided that the risks of having a baby while on my medications were much less than the risk I would be taking with my health and the baby’s health if I went off the medications. I posted something to that effect on the blog when I announced my pregnancy, and I remember a few people emailed me, extremely concerned about being on meds. But I was fighting for my life.  I couldn’t risk what might happen if I went off them.

As of today, I mostly feel healthy.  I have gained back any and all weight I once lost (and then some!), I sleep normally and am no longer prone to anxiety attacks.  That said, I am still on my meds (though a lower dose), and I still go to our psychiatrist regularly. In time, it is my goal to get off the medications, but I’m not in a hurry. Actually, to be honest, I’m scared to. I’m afraid to do anything that might jeopardize the place I’ve gotten to, when I can enjoy parts of life, while still mourning my little girl. I worry that if I go off the meds, and stop seeing my psychiatrist, I will end up back on the ground in that black hole, clawing my way out. Without Stella to be the light in my darkness, I wonder if I will survive my own dark mind. So, I’m taking my time. Allowing myself to become really and truly comfortable with my life the way it is now. I am no longer numb. I feel all kinds of emotions— happy, sad, angry, hopeful, joyous, bitter, loving. And one thing I never feel, is guilty about having Mental Health issues.  It is not, and should never be, a thing of shame.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

― Kahlil Gibran

Tobogonning with Hugo and Sam in snowy, icy Toronto:

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Gracie and Hugo:

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Family Shot (Aimee, Sam, Heather, Xavier, Mishi, Hugo):

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Sam and Hugo enjoy Stella’s favourite– vanilla ice cream:

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Stella and I, just 2 weeks after she was diagnosed (you can still see her Hospital bracelet on), when I was at a very low point:

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