Right Now…

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 Right now…

The air conditioner is humming in my ear as I type, blowing cold air on my already chilled arms.  But I don’t turn it off or because my 33-weeks pregnant wife is sweating in the room beside me.  The TV is on.  It’s the movie Shrek.  I can’t bring myself to watch anything that requires more thought than that right now.  I feel tired, but my mind is buzzing and I want to write something.  My fingers are itching to type something, my brain is whirring a bunch of incoherent thoughts that always loop into, “I can’t believe this is my life…”

 

Right now…

Stella is sleeping soundly in her bed, blissfully unaware of the chaos that surrounds her.  She has a streak of lipstick on her cheek from where Omo kissed her at dinner, flaking green paint under her nails from the painting she did yesterday and dirt on both her knees from an exciting day playing with Aunties Heather, Andge and Juju.  She is clutching a cheap fish she got at the Ex yesterday and a massive Smurf she dragged home from somewhere.  Her breathing is even and deep.  The morphine we gave her before bed makes her sleep hard and fast, but (hopefully) pain free.  Hopefully.  I am in so much pain all the time, I feel like downing the morphine myself, but I know that it won’t make my heart stop hurting so I drink Pepsi instead.

 

Right now…

My “To Do” list is sitting on the table next to me.  It reads:

1. Thank-you emails for J, A, A, D, F, B, N, J, T, P, L, E, R

2. Clean out fridge

3. Charge camera

4. Return email from funeral parlour re: font and finalize details (down payment???)

5. Plan playdate/dinner with A, K, S, S & S

6. Rebook meeting at cemetery with Chris re: plot selection

7. Clean out closet

8. Refill Cipralex prescription

9. Buy bread, Pepsi, ice cream and birthday candles

 

Right now…

Aimee is chatting on the phone to one of her oldest friends.  She is laughing and her eyes still sparkle, just like always.  I wonder how she can still sparkle when I feel so dead all the time.  She is amazing.  Her cute pregnant belly sticks out from her shirt.  It’s a shirt we bought together the day after we got married, August 2006.  That feels like a lifetime ago.  Before we had Stella.  Before any of our grandparents had died.  Before our daughter got diagnosed with inoperable, fatal brain cancer.  Her belly is sticking out slightly, a stark reminder of how precious life is and how we have no choice but to move forward because time doesn’t stop for anyone.  Not even a curly-haired imp whose smile makes my throat constrict with a combination of joy and despair.

 

Right now…

My stomach is hurting.  Probably shouldn’t have eaten the Jos Louis after dinner.  I used to eat them in High School during exams.  They taste so stale and crumbs always fall in my lap, but they’re strangely comforting to me right now.  I keep buying boxes of them.  Jumbo boxes.  Some days that’s all I eat.  Just Jos Louis.  My jeans are fitting bit looser than they used to.  The wrinkles in my face are a bit deeper.  My hair is long and always yanked back in a messy ponytail.  The freckles on my arms are dark this year because I’ve spent so much time outside in the sun.  Making memories.  Making up how I really feel.  Making it.  Faking it.

 

Right now…

There are three plastic bins sitting just behind me waiting to go up to the attic.  They are labelled “Work Clothes”.  I don’t know when I’ll go back to work, but I know it isn’t right now.  It felt weird to pack away my work clothes.  The last time I did that I was pregnant with Stella.  I remember as I was packing them away in that early spring of 2009, she did a huge somersault in my stomach and I laughed, thinking about how my baby was doing flips at the thought of getting to spend 8 whole months with me.  Now the clothes are being packed away because I am the one who wants to spend time with her.  A few days ago she was demanding to go back into my stomach, the place she knows she came from and the place she knows her brother lives in Aimee.  As she desperately pounded by stomach, yelling she wanted back in I was laughing and crying at the same time.  How I yearn for the time when I could keep her safe and sound in my tummy, away from the harshness of the world, away from pain and hurt.  Back when I knew she was okay because I could feel her moving inside me, when we shared a lifeline and her warmth was like having hot chocolate in my belly all the time.

 

Right now…

I still need to pack for the cottage we’re going to tomorrow.  Need to go to the attic and haul down the pack’n’play.  Need to figure out what books and toys to bring.  Need to pack snacks and bottles.  Need to put everything in the car and drive three hours up North for the 11th time this summer.  Back and forth we drive, getting Stella to a bunch of cottages where she laughs and plays and gets to love her life.  Where we get to be with friends who love us and tell us we will be okay.  Where people cook for us, look after us, love us.  But it’s tiring to keep packing, unpacking, driving.  We get out of the city but we never get to escape our life.  It’s like a jail made of sunlight.

 

Right now…

I miss my life.  I miss the friends that I can’t bring myself to call or talk to anymore because I can’t pretend to have social conversations when all I want to do is scream and cry.  I miss school.  I miss work.  I miss standing in line at Tim Horton’s every morning and being entertained by the characters that hang out at St. Mike’s hospital.  I miss looking forward to Hallowe’en and Christmas.  I miss juggling play dates with BBQ’s.  I miss planning how Stella will take soccer lessons when she’s three, go to camp when she’s six and get into that damn daycare she’s been on the list for since I was 8 weeks pregnant.

 

Right now…

I feel lucky, I feel unlucky.

I laugh, I cry.

I am tired, I can’t sleep.

I get, I give, I get.

I  feel everything, I feel nothing.

I am me, I don’t know myself.

I need nothing, I need everything.

I am strong, I am weak.

I want to reach out, I want to run away.

I am surrounded by people, I am lonely.

I am overwhelmed.

I am angry.

I am grateful.

I am lost.

I am loved.

I am scared.

 

Right now…

Stella lives and breathes and laughs and loves.

 

Right now…

I am Stella’s Mama.

FOREVER..

I am Stella’s Mama.

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Her…Here (by Auntie Juju)

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Her…Here by: Auntie Juju

I have been avoiding this website like a cancer-infested plague since I heard it went up months ago. I have always been so affected by written words, maybe because I am so much better at expressing myself on paper, so much more (or just basically) confident. This feels like a memorial sometimes for someone who is still here, most of the time really still here. Not because of what anyone is writing, just because. It takes me out of the present and into the projected, anticipated past and I don’t like that.

 

Sometimes I think stella is just messing with me. She’ll be sitting in the car and she’ll randomly say I want the camera. The camera is not within reach, and definitely not within sight but that is what she wants, so I twist and shove things around and find it but it isn’t the camera she wants its the little orange bag that holds the camera. But she wants it zipped up. Without the camera in it. Clipped onto gracie’s backpack. With 3 goldfish crackers in it. Not her crackers- gracie’s. Then she wants to choose a new band-aid, and get a new pony tail, and put on aim’s deodorant by herself, and put the cap back on by herself, and put it back on a different shelf facing southwest. I honestly think that sometimes she’s messing with me. Just to see if I can keep up, and solve the present puzzle with just my two hands and one brain and one heart that is ever expanding for this beautiful, quirky little kid I am getting to know so much better since we found out she is dying.

 

I am really getting to know the tiny curves of stella’s personality, and loving her in her own right, not as my niece or as my daughter’s cousin but as an independent entity, as someone I love who happens to be family rather than a family member I feel a certain kind of love for automatically because I saw her the day she was born and watched her learn to walk and talk and baby bounced her to sleep sometimes on those small occasions when she let her mothers go for a second to suss out the arms of someone else. My niece isn’t dying anymore, stella is. Unconnected now in terms of my grief I will grieve her solely now for who she is that the world is losing as a separate thing to what that losing will mean for her mothers and her grandparents and all the rest of us.

 

It can take a long time for her to answer questions right now, and get her own questions out, and when I’m with her I am determined to allow her as much time she needs to do that because I don’t want her to choose from one of my options, I want to know what she really wants. I want her to climb a staircase if she wants to even if she can’t really climb the staircase.

 

Sometimes her often unfocused eyes zero in on me and it feels just like that saying of a window to your soul. I feel sunshine and lightness and none of the weight we all have around her. I know she can feel my fear and I know something in her is patting it on the head and reminding me to be lighter. Like gracie does, like only a child can, she keeps me here, here, here. As long as I stay open to that invitation. As long as I let them do that. For me, for both of us.

 

All the tears I’ve been saving up over the past month are coming out this week.

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Scattered Thoughts (by Auntie Juju)

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  • Scattered post by auntie juju

    Aim and Mish are amazing. They are working this mess with grace and humour and perspective. They are fierce and generous and considerate and they absolutely amaze me every time they barter tirelessly with Stella for a dose of Tylenol, every time they watch the sun rise to Lauryn Hill on Elmo’s World, say “use your words” for the hundredth time, read to Gracie, hug each other, shower, brush their teeth, talk about deck stain, tease Marilyn, pack snacks, pack the car, unpack the car, pack the car, search their house for a second McDonald’s camera, fill a bubbas and smile through all the random people who have put their foot in their mouth over and over since they found out their child is dying.

    Aim and Mish are amazing. I wish there was a better word for what they are. Magical? The most amazing thing is they are exactly the same way they have always been, working this mess. They are what they are. Wow.

    We all have our own unique relationship to what’s happening- a unique relationship to Stella, to the Bruner-Methven family, as well as to cancer, death and dying. We are all grieving and will grieve Stella in our own way, and we are all bound to feel alone in that process- even in somebody’s arms, even when surrounded by tear-stained people, even when we know others are just as sad. We are all sad for our own distinct variation of the reasons. I know I have often felt alone in this experience so far. A strong piece of any kind of grief is inherently just a fucking lonely place. It is what it is.

    I have been sitting on this goal of joyful grieving. I can’t be sad all the time. In my specific location in this whole thing, that would mean missing out on having fun with Stellie this summer, and continuing to get to know her. I want to celebrate what she’s given and continues to give us, and I

    , personally in my specific location in this whole thing, can’t do that if I’m sad all the time.

    I read a lot of Pema Chodron. I am trying to recognize facts as facts, without labeling them good or bad. Stella isn’t going to live as long as we expected. That is what it is. Since she was born, since before, we were planning around an uncertain event- namely her lifespan, along with all of our lifespans. Planning comes with expectation, and expectation comes with disappointment. Not that we can avoid planning, but what Pema helps to articulate is that the bulk of the disappointment comes from the expectation, not from what is actually happening. The way we feel about reality shapes our experience of reality, but it doesn’t shape reality. Whatever, Pema says it better. Go to Caversham and pick up When Things Fall Apart.

    Does everything happen for a reason? I think so.

    Including this? I fucking hope so.

    There are lessons contained in every crumb of our existence. Stella’s short life has contributed and will continue to contribute to who I am, how I parent, how I partner, how I relate to my families. She will contribute to our understanding of the world in a million different ways, she will increase our resiliency, she will improve our capacity to value, love well, know what’s important and make friends with some of our deepest fears. She is a gift that will give, and give, and give.

    Good moments with Stella last week- sock feet in wet sand, swinging her over the waves on Thunder Beach, hearing her say “beautiful”

    so beautifully when I pointed out the clouds, shopping for the ever elusive make-believe tomato, “Look Mummy I’m crying”, wrapped up in a towel like a little tor-tee-ya, on the raft/ off the raft/ on the raft/ off the raft, “I want to dance” and NO IT’S NOT NONNA’S HOUSE!!!!!!!

    There is my scattered post.

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Sunny Days

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Sunny Days…

Keeping the clouds away.

On my way

To where the air is sweet

Can you tell me how to get,

How to get to Sesame Street…

 

Well, here we are on Stella’s “Make a Wish” trip in rural Pennsylvania at Sesame Street Land.  It’s not a real “Make a Wish” trip because that organization only grants wishes for children over the age of three, so the reason we are able to come here is because of the generous donations of our family and friends.  Thank-you to everyone who helped us get here, it has been an amazing trip and the snoring 2-year old sprawled out beside me as I write this is more exhausted than I’ve ever seen her.   With dried ice cream on her hands, smears of dirt across her cheek and mussed hair, she is the epitome of a person who just had the most fun day of her life.

Auntie Heather, Aimee, Stella and I flew in on Sunday and my parents and brother drove 9 hours on Monday to meet us here.  We were lucky at the airport to run into our friends brother who arranged for Stella to sit with the Captain for a few moments and “co-pilot”.  She was absolutely ecstatic, but when I had to tear her away so the real co-pilot could do his job she turned into the Stella I know and love.  She yelled as I dragged her out of the cockpit, “No Mama, it’s my turn to drive…the guy has to share!”.  Then when I finally got her buckled into her seat she yelled at all the people filing into the plane, “No!  This is Stella’s plane.  I don’t want you on my plane.  I don’t like you!” as she pointed her chubby little index finger at them.  Most people just smiled and walked by, and even though I was a bit embarrassed, I also had a little moment of secret laughter and pride.  My kid is tough.  My kid is strong.  My kid knows what she wants.  As the plane lifted off and I showed her the clouds out the window, I suddenly felt hot tears running down my cheeks.  I hadn’t even realized I was crying, but my mind began to imagine Stella floating on these clouds, laughing and playing.  Would she be able to walk again when she got to the clouds?  Would the headaches stop?  Would her laughter echo off the blue sky and find its way to my heart?  Stella smiled as the plane flew higher and higher, she asked if she could touch the clouds and I just whispered to her…”soon”, heart soaring and breaking all at the same time.

On Monday, those of us that were already here went to the Adventure Aquarium where Stella loved looking at all the fish and sitting on a bench in the sunshine by the water, watching the seagulls fly.  It was a really special moment, one of those “remember this” times when everything, just for a moment felt really perfect.

Today we all headed to Sesame Street Land where we had a full day of fun and adventure planned.  At Walmart yesterday I bought Sesame Street character shirts for the whole family, and even though we felt a little bit silly, we all donned them and marched together into Sesame Street Land. She screamed with excitement when we entered the main gates.  The day then became a bit of a blur of flashing cameras… Sesame characters…lineups…laughter…lunch.  We headed to the Elmo Rocks show where Stella danced and laughed and clapped her way through the songs.  The joy and happiness in her heart and on her face was so palatable that it made Aimee cry through the entire show.  Stella, who has no idea what’s going on inside her little body, just sat there and smiled in Dee Dee’s lap, carefree and happy.  How I wished for a moment I could share that moment of complete joy with her.  It made me happy to see her so excited, but the emotion “happiness” is so different feeling now.  It’s like when you laugh so hard it hurts and you’re not sure if you really like the way it feels or not.  We also went on some rides (I’ve decided Stella has no fears whatsoever…), enjoyed a special Meet and Greet with the Sesame Street characters arranged by my sister especially for Stella (who knew she loved The Count so much!!???) and watched the parade down main street.

It’s almost impossible to describe in words what it’s like to be taking this trip, whose entire purpose is to give Stella as many smiles and laughs as possible, yet in the back of our heads knowing that this is “the last trip” we will take with her.  Sometimes I try to tell myself this isn’t really happening, that she will live to come back here with her brother someday.   Sometimes I try to pretend this is just a regular family trip.  Sometimes I almost believe it.

At 5:30pm we had dinner reservations where the Sesame Street characters come around to your table.  Stella went absolutely nuts for Cookie Monster and Abby and Elmo.  In the 48 hours since landing in the US between Auntie Heather and I, we’ve taken 412 photos.  It’s as though we’re so desperate to capture every single moment, smile, nap.  When we get home I’ll post some of the photos.   Her smile fills each frame and it’s impossible not to smile back at her happiness.

We are giving Stella the time of her life.  I have never seen her this happy.  I have never wanted to freeze time so badly.  Freeze each time her blue eyes widen in excitement.  Freeze each word she whispers to me with her impish smile.  Freeze the wonder, the innocence, the intense love.

This is truly the trip of a lifetime.  This has been a beautiful reminder of how lucky we are to have been blessed with Stella, even if it’s just for a little while.  This is Stella’s “Make a Wish” trip, and I’m so glad we could be with her on this journey.  If only we could make a wish too…

 Co-Pilot:

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Best days of our lives:

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White Flag

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THE WHITE FLAG

 

I’ve always noticed that when people talk about cancer, it’s spoken to in terms of wars or fights.  People “fight” cancer, they “beat” it or they “succumb after a courageous battle”.  Before Stella got sick, when I thought about childhood cancer pictures of cute little smiling bald-faced children filled my brain.  Although Aimee works for an organization that runs camps for children with cancer, my knowledge of it was actually quite minimal.  What did I need to know, really?  It was all sad stuff.  i just liked hearing that something like 85% of childhood cancers nowadays are completely curable.  I personally know lots of people who had cancer as kids, are are completely fine now.  You do chemotherapy or radiation and yeah, it sucks, but then everything’s fine, right?

 

So, when Stella was diagnosed with DIPG and we were told it is an inoperable, fatal cancer I was stunned.  What were we supposed to “fight” if the enemy was going to win regardless?  Our options were explained to us during a meeting in a sterile white room with a Neuro-oncologist and some family and friends present.  The only option available, the Doctor said calmly, was to submit Stella to a six-week radiation treatment where she would need to be sedated (due to her age) everyday for six weeks.  At the end of the six weeks we could expect what the Doctor described as a “honeymoon period” where her symptoms would all but disappear for anywhere from 1-12 months, although that doesn’t happen in all cases.  But, at the end of that time, the cancer would come back and it would quickly and heartlessly kill her anyway.  There is no cure.  There is no hope.  It’s like being kicked in the soul hearing these words, kicked so hard and so fast the pain shoots from your heart to your head and stays there, aching, burning, screaming silently.  No hope for anything to save Stella???  How is that possible.  It still boggles my mind.

 

Without even needing to discuss it privately, Aimee and I immediately knew that we were not interested in any kind of prolonging of Stella’s life.  If our daughter was going to die, we wanted to enjoy our time with her, not spend the summer at Sick Kids radiating the tumour that would kill her regardless.  We wanted her off the steroids immediately.  The steroids were turning our child into a stranger who could not stop eating at all hours, who was tantruming and physically lashing out at us, who was not happy and slept a lot.  And no, we didn’t want a shunt put into her brain— which would alleviate some of the hydrocephalus, but was a major operation requiring a week in the hospital, brain surgery and the outcome of maybe prolonging her life just a bit. Our decisions were met with a bit of surprise by the Doctor, and he spent a lot of time talking more about the radiation option, but we were confident in our decisions.  We were not focused on Stella living long, we were focused on Stella living well.  At one point, I asked about a support group for parents whose children were dying of cancer and the Doctor kindly advised that a support group might not be the best thing as almost every other parent would be pursuing some type of treatment and he was afraid we might be ostracized or unwelcome in a parents group.  His comment left me stunned, crying, doubting Aimee and my decision.  All I ever wanted to do as a parent was make Stella happy, was it a terrible thing to sacrifice days of her life for time with her that was fun and would give us our true daughter, even just for a little while???

 

As the weeks have gone on and we’ve begun to watch Stella deteriorate I’ve never regretted our decision, but I have wondered if we’re being selfish for just calmly and quietly accepting the Doctors diagnosis the moment it was made and not “fighting” for time with Stella.  Although we’ve had some wonderful and well-meaning people send us emails about homeopathic treatments, American cancer hospitals, alternative medicine and the belief in miracles and God curing our child, I keep looking at all these options and then remembering that all of the stories I’ve read online about children with DIPG end in their death.  Even when parents have fought so hard and so long and expanded so much energy, time and money to save their children, they die anyway.  It’s so unfair.  It’s so devastating.  It’s so disheartening.  I wish I could find something to cling on to like these other parents have, something to “fight” back with…but I just feel defeated.  The cancer has already won and all we can do is stand back and watch it ravage our child and slowly destroy the hopes, dreams and plans we had for her future.  She will not see her third birthday.  She will not go to kindergarten.  She will not get to go to Wanakita Camp with Ava and Aurora.  She will not have sleepovers with Flora when they’re teenagers and play soccer with Arin.  She will not grow up protecting her little brother in the schoolyard.  She will not give us attitude as a 13-year old and fight with us about make-up and ear piercing.  She will not go to University, even though I have an RESP for her that I started when she was born.  She will not have a first dance recital.  She will not be Gracie’s Maid of Honour at her wedding.  She will not continue my family tradition of over the top, tacky Christmas decorations.  But despite all this, she will LIVE a full and beautiful life even though it will not be anything like we imagined.  She will get to go to Sesame Street Land in Pennsylvania next week.  She will get to eat ice cream for breakfast.  She will get to play with her friends and laugh at their antics.  She will be the focus of our lives and energy for as long as she is with us.  I constantly ask myself, “is that enough?”.  It’s all I can do but…is it enough?

 

Sometime I question if the decision we’ve made to have no treatments whatsoever is as selfless as I like to believe (“we’re doing it for her”), or if it’s selfish…because I don’t know how long I can live like this; loving Stella, knowing with each day and each breath and each smile she gifts us with is bringing us one day closer to when we will need to learn to live without her.  As much as I tell myself it’s better for her to live a shorter, higher quality life, I think it’s also better for me.  I don’t think I can put up this front for a year— choking back tears as I read her stories before bed, greeting her each morning with a smile that goes no further than my face, trying not to notice that she’s crawling around the library instead of walking like she was last week and instead entertaining her with puppet shows and silly faces.

This afternoon, Aimee and I went to plan Stella’s funeral.  We went to a beige-covered office with a lovely funeral services worker and calmly made decisions regarding cremation vs. burial, catering for a reception, the type of urn we want, flower arrangements, casket selections, etc.  The whole time I was sitting there with my list of requests, trying to imagine I was back at work and this was just another agenda for a meeting, not us planning the funeral of our curly-haired daughter who at that exact moment was sitting on Poppa’s knee at Tim Horton’s enjoying and ice cream cone and chattering about her new fish at home.

We want sunflowers and poppies…but they may not be in season.  We want Stella and Sam books to decorate the room.  We want people to wear bright colours, not drab grey and black .  We want to celebrate her life.  We want to do right by her and honour her because although her time will be short, it is meaningful and special.  We recently had two of our best friends name their newborn daughters in her honour.  She will be remembered by those who loved her.  But what a horrible thing to have to go and do today.  How surreal.  How hard. How unfair.

 

Sitting there in the room, looking through a binder labeled “children’s caskets”, I couldn’t help feeling as though this was the final step on “giving up” on Stella’s life.  This was the white flag, the final moment of acceptance that Stella is going to die and there is nothing we can do about it.  We have nothing to fight, no miracles to cling to, no battle to be won or lost.  We are planning her funeral.  We are accepting the inevitable death that will come soon—another month or two at most, so the Doctors guess.

Someone posted something today that touched and struck me deeply.  It will become the mantra to our life as we enter the last few weeks or months of Stella’s life.

 

“Since we can’t add days to her life, we will add life to her days”

 

That got me to thinking tonight…maybe the white flag doesn’t have to mean surrender.  Maybe the white flag can stand for pureness, for a blank canvas.  Maybe it can mean light.  Maybe it symbolizes Stella and us being at peace with our lives and our decisions.  Maybe it is a new beginning.

There’s alot of life in this girl:

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I couldn’t love you anymore baby girl:

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