Freckles (By: Aimee)

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Freckles (By: Aimee)

One of the things I love most about Mishi is her freckles.  Every summer, the sun lures them out and they form frames around her eyes.  I LOVE them.  When we found out that Mishi was pregnant I knew, that whether we had a boy or a girl, either way – he or she would have freckles.  When Stella burst her way into the world, curls and all, one of the first things I checked for as my eyes darted from head to toe was any trace of freckles.  I didn’t realize that freckles actually don’t show up on kids until they’re toddlers.  It took me months after Stella was diagnosed to realize the sick reality of many things, one of which was that we would likely never get to see freckles on Stella’s face because she would die before they had a chance to appear.

 

Over the past two weeks, we’ve ventured out into the land of the living as a family, making a few trips up to a cottage that my mom rented on the beach where my sister and I spent all of our summers growing up.   For me, visiting Thunder Beach is like going home.  It’s a sacred place where a group of old friends and I spent every waking hour together for a precious window of time each summer, year after year.  This was Stella’s fourth summer up at the cottage.  The first two summers were both as tiring and amazing as one could imagine it would be when introducing a baby/toddler to sand and water for the first time.  Last summer, our trip to the cottage was comforting and gut wrenching at the same time.  Back then, we were still in the throws of the shock that Stella was going to die, and the adrenaline that keeps you afloat just long enough to survive such a reality was starting to fade in our systems.  This year, when my mom said she was going to rent the cottage again, I though she was crazy.  There was no way we were going to make it up there with Mishi – a few weeks from giving birth and Stella sinking slowly but surely into the end of her life.  She did it for Gracie.  Going to the cottage is Gracie’s favourite thing to do and right now, all of us would do anything to make her happy.  My thoughts about the cottage rental quickly changed however, one day when Mishi asked Stella if she wanted to go to Tutu’s cottage.  Immediately she pushed out her own muffled version of “yeaaahhhh” followed by sticking out her tongue (which means “yes”) to seal the deal.  Within hours, we had our travel bags down from the attic and Mishi was already making a packing list.

 

A few days later it was go time.  We packed the van, strategically tucked Stella into her car seat so that she was comfortable and that her head didn’t flop all the way down onto her chest, and away we went.  Stella and Sam both slept almost all the way on the 1hr 45 minute trip.  My stomach was fluttering with worry on the drive up over whether or not Stella would have fun at the cottage.  She used to love it so much but sometimes it’s hard these days to predict what she’ll want or have enough energy to do.  When we arrived, Stella’s eyes got really wide very fast.  The door on the van swung open, Stella smiled and my heart was full.  As we went through the gate and she saw the cottage her entire face lit up and out came that “yeaaahhhhh” again.  Stella was glad to be at the cottage.  Within minutes, Gracie, Tutu, Auntie Andgie, Auntie Juju and Buddy the dog, emerged from the beach and the cottage was brimming with screeches, hugs and smiles.  When we ventured down to the beach, Stella’s face lit up again as she listened to Gracie explain the order in which we would play and do activities for the afternoon.  Stella’s energy that day was amazing.  Her eyes were open and her face was bright.  She was alert.  She was up for anything we asked her to do.  In less than a three hour span, she built sand castles on the beach with Tutu, went swimming in the lake with her Auntie Juju and Auntie Andgie, splashed Sam and covered him with sand, went in the kayak with Gracie, napped in her mama’s arms and fed Buddy treats in the shade.  For the first time in a long time, I felt happy.  I was happy that Stella was happy.  Waves of sadness followed like they always do.  Sadness for what could have been as I watched other parents chase their kids around the beach but thankfully, these feelings didn’t last long.  There was no time for that.  Stella had too much to do at the beach.

 

After sitting on the couch, watching an episode of Stella and Sam while holding hands with Gracie, Stella made her long awaited trip to the store for ice cream.  As we set out for the short walk to the store, Gracie pulled the large, red wagon that Stella was laying in.  When the store was in sight, Gracie all of a sudden took off, pulling the wagon at what seemed to us like an uncontrollable speed.  We all gasped and chased after her to make sure that Stella was safe.  When I got far enough in front of them so that I could look back and brace myself to grab the wagon and pull it to the side of the road, there was Stella – her head bouncing back and forth off of the various pillows we stuffed around her, legs crossed in what looked to be the most uncomfortable position possible, and a HUGE smile on her face.  In fact, she was letting out a belly laugh that I haven’t heard in months.  We all looked at each other with a shared feeling of weightlessness.  Stella was elated to be at Toula’s store.  Toula, the lovely woman who (along with her family) owns and runs the corner store, is loved by all who know her – including Stella.  Last year Stella spent half her time at the cottage having stand – off’s with us as she would yell “I want to go see Toula NOW!”  As we wheeled her into the store, her face lit up and there was Toula waiting to give her ice cream.  Stella had so much fun that day that we decided to stay the night.

 

Mishi and I continue to be amazed at the love, kindness, generosity and support of others throughout this journey.  It’s the foundation that holds us up and we would not be able to start each day without it.  When we arrived at Thunder Beach, an old friend had already dropped off a tray full of sandwiches for us.  In the morning, another friend appeared on the beach with Timbits for Stella – a morning ritual that she shares with her Poppa.  Thanks to a few childhood friends and an army of incredible people that make up the Thunder Beach community, Stella now has a beautiful playhouse that was built in honour of her.  Our friends decided that they wanted to honour Stella in the best way they knew how – building her own playhouse.  Stella’s absolute favourite part of the cottage is a small, plastic playhouse that sits in the local park.  Last year, she spent all her time there, operating a Tim Horton’s drive through out of the window.  She would sell us Double Doubles for $400 and bagels for $5.  She called it “my playhouse”.  The playhouse has just been completed and has a sign over the door that reads “Stella’s Place.”  Thunder Beach has always had a piece of my heart and now it holds part of my soul sitting just inside the white fence at the Club House.

 

After that trip, we went back up to Thunder Beach again and then one more time after that.  This time, we took Auntie Heather and Xavier and once again, Stella had a blast (especially when Auntie Heather squished herself into Stella’s plastic playhouse).  We ended our jam-packed week of cottaging, camping and sunshine almost happy, rejuvenated and exhausted all at the same time.  Shortly after our adventurous week started to wind down, Mishi made a discovery that filled my soul from the inside out – just under Stella’s right eye is the first dusting of freckles.

 

Somehow, amidst the cruel reality of the tragedy and profound loss already caused by Stella’s tumour – both Mishi and I find true comfort in her freckles.

 

Pictures from Thunder Beach, Summer 2012:







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This is Stella

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This is Stella

 

When Aimee and I first started this blog, it was just supposed to be a way that our friends and family could get information about Stella’s cancer, our well being and our goings-on to save us from having to field multiple emails, phone calls and questions.

 

But over time, the blog evolved into something so much more .It has become a place where Aimee and I share our struggles, our triumphs and our story with everyone as we try to navigate both Stella’s fatal brain tumor, our own lives, hopes and dreams for the future.  Much of the time, the blog is about our attempts as parents to accept and understand Stella’s journey, as well as our goal to give her the best life possible despite the grief that hangs over us like a grey fog.  But, at its core, this blog is still a love letter to Stella’s life, and, hopefully, a way for her brother and brother-to-be to get to know her better and  be a witness to what our family and community did for their sister.

 

Unexpectedly, we have been overjoyed and overwhelmed at all of the people who have journeyed with us the last 13 months via this blog— friends and family of course, but also acquaintances and strangers who have learned to love our Stella, and become part of all our lives in that strange way that only the Internet can connect you.  This has been the most magical and rewarding part of having this blog.  When you hear that your child is going to die, before their life even gets started very much, one of the things you struggle with is this horrific thought that the world will never get to experience how incredible and wonderful your child is— that they will be gone before they had the chance to make a difference.  But this blog, and the people who write to us and support us have taken away that fear by telling us over and over again that they DO know Stella, they WILL remember her, and she HAS changed them.  It is all we ever wanted for our daughter…for people to know how special we think she is.

 

It occurred to me recently that many people who come here know a lot about Stella, but maybe some don’t.  So, Aimee and I wanted to tell everyone a bit about our Stella, both before and after diagnosis.  This is what we came up with. This Is Stella

 

Stella was born in Toronto on April 18, 2009.  She was our first child.

Stella’s full name is Stella Joy Bruner-Methven (named for her two great-grandmothers, Estelle Mohr & Joy Bruner)

Stella, from birth, was a handful.  She had the attention span of a gnat, the energy of triplets and the stubbornness of a mule (or Aries).

Stella crawled at 6 months.

Stella’s first word was “Dog”  (she loves our dog , Lucy)

Stella’s first day of daycare,  when we picked her up at the end of the day, a staff described her to us as, “a force to be reckoned with”.   This has remained our favourite description of her.

Stella was the biter in her infant room.  In her first toddler room, she was the pusher and in her second the hair puller.  By the time Stella was two we had accumulated 26 incident reports from daycare. 

Stella walked at 14 months

Until recently, Stella began every morning at 5 a.m. and was ready to run from the moment her eyes popped open

Stella insisted on picking out her own clothes from the time she was 15 months old

Stella’s favourite foods are/were avocado, waffles, hamburgers, macaroni & cheese, ice cream and butter (which she really believed was a food on its own)

Stella has been on an airplane 12 times (round trip to NYC 3x, Ottawa 1x, Mexico 1x, Pennsylvania 1x)

At 18 months old, Stella could empty the dishwasher and put away all the silverware and plastic bowls/plates.  At 20 months she could empty the dryer and help fold. At 21 months she decided it was more fun to just throw those things instead of helping

Stella has been to Great Wolf Lodge in Niagara Falls 4 times (5 as of next week)

Stella’s best friend is her cousin Gracie, as well as her buddies Flora and Arin

Stella’s favourite colours (in order) are green, purple and pink

Stella’s favourite TV shows were Dora the Explorer, Olivia, Yo Gabba Gabba and Stella & Sam

Stella’s favourite books are/were Adele & Simon, Mortimer, Yes Yes No No, There’s Going To Be a Baby, Stella & Sam and anything Sesame Street

Stella’s favourite songs are You Could Have Been a Rutabega (Paul Caldwell), Oh Susannah/Stella (Brad Needham), These Are the Sounds The Animals Make and Raise a Little Hell.

Stella’s favourite animals are dogs, cats and monkeys

Stella has been camping twice, horseback riding once, Maple Syruping twice, apple picking twice, swimming dozens of times, to eight different cottages and too many play dates to count

Stella’s favourite sayings were, “I don’t like you”, “Oops, I forgot” and  “No”, followed by a giggle and running away.

Stella’s favourite place to visit is Riverdale Farm

Stella has never once in her entire life been afraid of anything

Stella doesn’t believe in the following words: “no”, “can’t” and “never”

Stella’s cancer does not define her

Stella has smiled everyday of her life

 

 

Here is a very quick slideshow of Stella from birth to last week.  In every single photo, I can see her spirit and light.  We hope you can too!.

 

http://www.youtube.com/watch?v=LbvlWdYU1rk&feature=youtu.be

 

 

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The Great Escape

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The Great Escape

Yesterday Aimee and I left Stella and Sam with our awesome family and went by ourselves to a hotel in downtown Toronto for a 24-hour “escape”.  We checked into our little boutique hotel, took the elevator to the 26th floor and opened the door to our “Zen Suite”.  Dropping our bags in the entryway, we immediately flopped down on the bed. We lay in silence for quite awhile holding each other, enjoying the quiet, enjoying the cool air conditioning, enjoying the calm.  We went there to escape.  To escape the couch, to escape the pain, to escape the constant questions of “when, when, when”…”how, how, how”…”why, why, why”.  We had a fun itinerary for our 24-hour escape— an hour at the spa for a pedicure (Aimee) and facial (Mishi), followed by a nice dinner and (hopefully) a wonderful and luxurious sleep-in.  The longer I lay on the bed in that hotel room, the more exhausted I felt.  I realized that I am drained and there is barely anything left in me. I feel like a deflated balloon lying on the sticky ground, two weeks after the party ended.  So I let myself be exhausted, closed my eyes and rested while Aimee stroked my hair and watched TV.  It was nice.  It was simple.

An hour later, we headed to the hotel spa and changed into plush white robes and slippers.  The spa was beautifully decorated, lots of dark wood, a hot tub, tea, cushions and lounge chairs galore.  This was our escape.  At the spa, I lay on a table covered in a soft white sheet with my eyes closed, and waited for the esthetician to work some life back into my baggy eyes and water-retaining, hormone full, blotchy face.  I was hoping to just lie there and listen to the soothing music but…alas! I had a chatty esthetician.  She started by asking me how pregnant I am (36 weeks) and then if this was my first.  I told her it was my third (purposely omitting the fact Aimee gave birth to Sam in order to avoid more questions…), and then “the conversation” started.  She wanted to know the kids ages, so I told her 3 years and almost 9 months.  Wouldn’t you know it, she has three-year old twin boys—Gabriel and Christian.  So, since we had this wonderful thing in common, she proceeded to go on and on about how much trouble it is to discipline her boys, what a fun age it is to have them running around, the hilarious things they say to her, how much they love playing soccer, the trouble they give her at bedtime, etc. etc.  As I lay there, trapped on the table with creams all over my face and a bright light shining on all my facial imperfections, I felt completely numb.  I mostly answered her with false smiles and “mmmhmmm”’s.  I didn’t want to lie about the reality of life with my three-year old, but I also wasn’t going to reveal the truth to someone I would be done with in 60 minutes or less.  So I just lay there and listened to her and allowed myself to think about how different my life would be if I had a three-year old that was also running around and sassing me and making me laugh with her wit and attitude.  One of the last things she said to me before I left her room was, “But the best thing about your children is, no matter how much trouble they are to raise, you know you will always have them with you forever, because children they don’t really die before their parents very often, so you know you will always have them to love and be proud of the whole rest of your life”.  She really said that.  Truly, those exact words.  I wandered numbly back to the spa and sat with Aimee as her fluorescent pink toes dried and told her what had happened.  She didn’t say much because there isn’t much to be said.  Aimee and I left our house yesterday because we wanted to escape.  But the reality is, there is no such thing as escape.  We can pretend to be two regular, anonymous people enjoying a short get-away, but we can’t escape the reality of our life.   We are part of a secret club of grieving parents wandering around trying to act normal.

The reality is, we went away because we are acutely aware of the fact that Stella is fading.  Day by day she is eating less, smiling less, awake less, moving further away from us and our life.  Everyone around us can feel it.  She is slipping away.  She is so skinny now that you can count her ribs and see her hipbones.  Last week, I forgot to pack a change of clothes for her in the diaper bag, but when I needed to change her I was able to put her in a shirt and shorts that belonged to Sam instead.  She easily fit into 6-month clothing.  Her arms and legs have zero muscle tone now, the limbs are soft and pliable like bread dough.  Her eyes are in a half-open state most of the time, even when she is sleeping.  Her mouth hangs open, dripping drool much of the time.  Even her hair—her beautiful, red hair, has faded somewhat into a lighter red, sometimes even appearing blonde in the sun.  She still wants to see her friends, but there is little we can do to force interaction any longer. The tumor makes it very difficult for her to show emotion now.  We have to guess how she is feeling, what she wants.

I used to wonder if her death would be sudden & shocking, or slow and drawn out.  Now I know with some certainty that it will be a slow blurring of living and dying, kind of like a watercolour painting that is a mixture of washed-out, flickering brushstrokes whose meaning changes depending on how close you stand to it.

Even though Stella was born in the Spring, it has always been the Fall that reminded me most of her.  I think of the Fall as crisp and clean.  There is a feeling of expectation in the air, a quickness in everyone’s step as they hurry along.  Fall is a time of beginnings- starting school, starting work after summer vacation, starting to plan for the winter season.  Fall is when the world around Ontario explodes in colour as the leaves transform on the trees, little bursts of fiery energy heralding a new season, an escape from the sweltering unrelenting heat of summer.

Even though it is summer now and the scorching sun has turned the grass in our yard brown, and sweat forms on Stella’s nose most of the day and kids on vacation play tag and bike ride on the street long after 9pm because of the long summer nights, I still have a sense of Fall being near. It’s because I can clearly see another similarity between Stella and the Fall— the image of the leaves on the tree slowly fading and dying.  Beautiful, golden orange leaves that silently glide down to the ground resting on the cold ground, sleeping to the lullaby of the wind.  Battered and bruised, colour fading to brown, but still leaves until a final gust of wind picks them up and leads them to a secret corner where they are returned to the earth in a motion so natural it is almost unseen.  They escape the cold of winter, the blanket of snow.

There is no escape from the reality of losing our precious girl to this horrible tumor. No hotel, no dinner, no season, nothing will make a difference in the end.  It’s an unbearable reality that we need to learn to bear.

Stella’s impending death is a prison we can’t escape from, but I try to remember that she has made it as easy as she could for us.  She created bars made of sun, walls made of beautiful memories, a door made of laughter and a lock that holds my heart.  She will continue to fade away and one day soon she will be gone from this Earth forever.

Ironically, it is her who will have escaped and Aimee and I who will remain trapped in a world without our beloved girl.

Stella visited Riverdale Farm on Friday:

Stella helped Arin celebrate his third birthday on Monday:


This is the tree Stella’s friends bought for her and planted outside Riverdale Farm last fall.  Aimee took this picture and we were surprised to see afterwards the butterfly-shaped Rainbow hovering amongst the leaves…so surprisingly beautiful…so Stella!


 

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Jenga

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Jenga

 

It’s been 4 weeks since the Doctor told us Stella likely had 1-4 weeks left to live.  4 weeks since Aimee and I sat and wept over Stella’s pale and skinny little body as she lay sleeping.  4 weeks since we started to call some friends and let them know “this was it”.  4 weeks since ewe began the process of “letting go”—whatever that means.

 

Now, 4 weeks later after waiting and watching and holding our breath… Stella is very much still here, very much still alive, very much hanging on– even as we are being urged to let go.

 

It’s a difficult, if not impossible, position to explain to someone who has not gone through watching someone they love die slowly.  You are torn between wishing they would be here forever, and wishing that their torture (and yours) would end.  Stella is not in any pain, and everyone is eternally thankful for that, but I still find it difficult to engage with her now.  The Stella I knew once is long gone, and although I love “this Stella” very much, I have been missing and mourning the old one for months already.  This Stella is only pieces of my old Stella.  They look similar, but my old Stella was much rounder and chubbier whereas this one is tall and thin.  Their laugh is exactly the same, but my old Stella laughed a lot more.  The hair is similar, but this Stella’s is longer and lighter.  They are both completely mischievous, with a great sense of humour and a smile that can stop my heart immediately.  This Stella gets cuddles all day and everyday, but the old Stella hated being held.  She wiggled away from hugs, dodged kisses, and sat on my lap only when she was sick, or asleep.  My old Stella pushed the other kids, stole their toys, dominated most games, chased, disobeyed, ran away.  This Stella watches other kids do this, but sits silent and still in my lap, unable to keep her head up with drool falling out of her mouth and soaking her neck.  The saddest thing is that I know all the pieces of my old Stella are still here—but they are being literally strangled to death by a relentless tumor in her brainstem that is ever so slowly cutting her off more and more from us.  Each time Stella loses another function, or has another “dip” in her cancer, I am forced to mourn a little bit more.  I know now that the grieving process for Stella will encompass years of my life.  It started June 24th, 2011 and has continued ruthlessly day after day, month after month and shows no signs of abating or ending.  We still have so much left to mourn…it’s too overwhelming to even think about some days.  I keep wondering how much longer we can all keep going like this…I passed my limit weeks ago, yet as so many parents who have been through this before have told me, you just have to keep going.

 

So we do.  Because you never know how much you can do, until doing it is the only choice you have.

 

Now we measure how “good” or “bad” a day is in terms of smiles, naps and bottles of milk consumed.  When someone asks, “How’s Stella today?” Aimee and I robotically answer, “Pretty good.  She slept three hours, smiled about 4 times and drank 5 bottles of milk” or, “It was a tired day for our girl, she smiled a couple of times, and had 2 bottles of milk”.  It’s a crazy thing to have such a vibrant life boil down to—smiles, naps and milk consumed.  Just like a newborn…except she’s not.  She’s a beautiful, smart 3 year old girl.

 

Waiting for Stella to die reminds me so much of playing that 80’s game Jenga.  You know Jenga and the old jingle… Jenga, Jenga, J-j-j-jenga. you take a block from the bottom and you put it on top, you take a block from the middle and you put it on top. That’s how you build the tower; you just don’t stop. You keep building that tower putting blocks on top. It teeters and it totters, but you don’t give up; it weebles and it wobbles, but you build it on up. You take a block from the bottom and you put it on top, you take a block from the middle and you put it on top, till someone knocks it over, and that’s when you stop…”  For me, Stella is that Jenga tower, where pieces keep getting removed and you hold your breath as the tower shakes, and can’t believe it’s still possible to be standing there, even with all those pieces missing.  Then, even though you knew it was coming, suddenly the tower comes crashing down in a pile of wooden rubble, startling and disappointing you.  I keep looking at Stella, lying here on the couch next to me, and wondering: “How many more pieces can this tumor take from you before you are reduced to a jumble of pieces like a Jenga tower?”  But Stella won’t tell me.  She just looks up at me with her big blue eyes and stares directly into my soul, daring me to ask more questions that she will refuse to answer.

 

4 weeks is over.  We were all wrong again.  Stella didn’t live 3-4 months.  She didn’t die 4 weeks after they told us she would.  Stella isn’t dying right now, Stella is still living, still building her Jenga tower of smiles and surprises.

 

Stella continues to teach me things everyday, and maybe that is why she’s still here— because she knows I still have so much to learn from her.  Today’s lesson…when we can’t change a situation, we are forced to change ourselves.  And so, Dear Stella, I am trying hard to keep up with you today and will try again tomorrow.  And for the next 4 weeks.  And the next 4 weeks after that.  And the next 4 weeks after that, for as long as you need me.  And when you don’t need me anymore, I will still be here trying my hardest to live the life you taught me I should be living— one of raw honesty, pure love, overwhelming gratitude and no fear.

We must let go of the life we had planned so as to have the life that is waiting for us – Joseph Campbell

 Stella plays piano at Gracie’s house:

Stella helps Ray celebrate her birthday:

Gracie paints Stella’s toe nails for her:

Stella and Sam baking cookies:


My heart lives here:


 

 

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Running

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Running

You know how sometimes you’re running, and you get to that point when you feel like you can’t keep going because your chest is hurting, you can’t catch your breath, you have a stabbing pain in your lower right stomach, your calves are burning and you know it’s just time to give up and walk for a few minutes?  That’s how I’ve been feeling this week.  Except I don’t have the option to stop running, so I keep on going even though it is pushing me past my outer limit of endurance, pain and tolerance.

And as I keep running, I ask myself, “Are we there yet?  Did I get up the steep hill?”.  And crazily enough, the answer is  “No.  You’re not even close”.

It’s becoming more and more difficult to drag ourselves out of bed and do the same thing day after day after day.  I can barely stand to look at Stella any longer because it hurts my heart so much.  She has completely lost any control of her body, it’s like carrying around a sack of potatoes.  Her head falls backwards when you lift her up, her eyes look left or right, but rarely to the centre where they can focus.  Her legs hang limply, shaking uncontrollably.  Her muscle-less arms flop around like fish on the sand.  She has been able to say some words that last few weeks… “No” is still pretty clear, once in while she says “Gr” for Gracie and “Deck” for “Decorate” (which really is referring to the weekly Gracie sleepover where we decorate cookies and then sing Happy Birthday with candles).  Other than that, she spends upwards of 13 hours a day sitting on the couch either staring at the wall, or closing her eyes, in and out of sleep.  I look for her everyday, but it’s getting harder and harder to locate my beautiful, spirited daughter in this heap of cancer that lives on my couch.  This part is hard.

Since Stella was diagnosed almost exactly a year ago, Aimee and I have focused all of our energies and our goals around her quality of life.  But now I realize how narrow my understanding of quality of life was.  It was so easy to believe we were doing all the right things for her when we were eating ice cream for breakfast, going to the park anytime, having playdates, big birthday parties every month, letting her do whatever she wanted, whenever.  But I didn’t realize that at some point in this journey “quality of life” would mean nothing more than “pain free”.  And though I am eternally grateful that Stella seems content and comfortable, I cannot stand to sit day after day and watch her slowly waste away on the couch as the tumour continues to eat away at her brainstorm.  The cold, hard truth is  that Stella’s quality of life isn’t that great right now, and neither are mine or Aimee’s.  We are so lucky to be surrounded by an incredible group of friends and family that sustain us, but we are all hurting and we are all tiring and we are all struggling to manage our own emotions and fears.  I see my own pain reflected back like a mirror in the eyes of those that love us, and I know that each one of us is struggling to keep going without pitching forward and giving up.

The constant hurt of seeing Stella sick makes it hard to do completely normal things.  It makes it hard to go to the grocery store, which is full of little girls with curly hair running up and down the aisles.  It makes it hard to go through Stella’s drawers looking for a t-shirt and see the bathing suits, socks and sunhats from last year that will never be used again. It makes it hard to watch Gracie choose to play with Sam over Stella sometimes, because he at least acknowledges her and laughs at her antics and plays back whereas Stella mostly just sits silently her eyes half closed.  It makes it hard to sit outside on the front porch and listen to the neighbourhood kids playing street hockey, riding their bikes, chasing balls.  It makes it hard to know that Stella’s peers are all getting together, running and laughing and playing in the park after Sportball on Saturday mornings.  It makes it hard to walk the streets where we live, the same streets that I grew up on and that I imagined our daughter running up and down too.  It makes it hard to cook dinner, knowing Stella can’t eat any of it.  It makes it hard to celebrate all of Sam’s milestones…sitting up on his own, eating Cheerios, babbling…because for every function he gains, Stella loses one.  It makes it hard to go to Zellers and walk by the kids shoe aisle where we used to pick out Dora running shoes.   It makes me enraged that Stella should be in all these places with us, with her friends, but instead she’s on the couch dying.

Maybe I’m projecting my own feelings, but I swear sometimes Stella looks up at me with her big blue eyes, my face just inches from hers as we breathe the same breaths on the couch, and I can hear her in my head asking me what is happening to her body, why she can’t do anything anymore, what am I going to do to make it better?  I look at her and I know that Stella is completely dependent on Aimee and I and our friends and family for everything—food, drink, bathing, diaper changes, entertainment, joy.  I see that she trusts me implicitly and trusts that whatever is happening to her body, Mama will fix it.  But I can’t fix her.  I remember the days when I could fix any boo-boo with a loud kiss and sometimes a Sesame Street Band-Aid.  But this time, I can’t do anything but sit and wait and watch and it’s the worst kind of torture you can imagine.

Like any parent, I like to brag.  I like to come on here and write about the amazing and special things that Stella has done and taught us.  I like to remember how incredibly alive she is even as she lay here slowly dying.  But today, all I feel in my heart is pain and exhaustion, and I can’t see past my own blinders of tears to come up with something good or inspiring to record and share. Today it just hurts.  And that’s about as honest as I can get.  There are some days that are great, some that are good and some that just rip you to shreds.  And the last few weeks have been the hardest so far.

I sometimes try to put things into perspective, and remind myself that there are lots of horrible ways to die.  I watch the news and hear about children who have been viciously murdered, whose last moments on earth were filled with pain and terror, I see those Sunday morning “Save a Child in Africa” commercials where children are starving to death, I remember the war and famine and violence in the world and I try to tell myself that we are lucky that Stella has had such a beautiful life, full of nothing but love and smiles.  But I also know that my daughter is being forced to die in a horrible way.  Other parents whose children have died of DIPG all tell similar stories of the heartbreak of watching your child lose their functions one by one.  There is no easy way to say it— it’s horrific and I hope feverently that one day there will be a cure so that other parents will be spared this awful path.  There are lots of terrible ways to die alright, and DIPG is one of them.

And so, I find myself desperately caught in this complex web of hopes and emotions, wanting to cling to my daughter with all my might, not able to fathom a life without her beautiful smile, yet also wanting it all to be over so that I don’t have to watch her suffer anymore, and don’t have to walk this path of suffering with her, feeling every lost moment in my soul like a knife.

Her smiles are so few now, but they still flash from time to time, lighting up the room and giving me the extra bit of strength I need to keep running.  But the sad part is, at the end of this race there is no trophy, no victory, no joy or pride at having finished.  There is only a black wall for me to hit head on, where Stella is gone forever, and I’m not sure what lies behind the dark brick blocking my view of the future.  I know Aimee and I will get to a good place again someday, and it’s that knowledge that keeps me going.  But the way to get there is terrifying.

Do me a favour— if you are lucky enough to have one, give your child an extra squeeze tonight and no matter how mad they make you tomorrow, remember that there is at least one mom out there who would give her life to feel her child hug her back one more time.

Off to the couch now…gotta keep running.

Auntie Heather feeds Stella ice cream under the tree on our front lawn:

Mommy and Stella:

Brad serenades Stella:

Gracie cuddles with sleeping Stella:


 

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