Dear Stella (BY: Aimee Bruner)

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DEAR STELLA…. (By: Aimee Bruner)

 

Dear Stella,

 

I want you to know that I dreamed of you long before I ever met you.  I remember standing in the doorway of the room we made for you and daydreaming.  I just stood there, sometimes for the better part of an hour, staring at each piece of furniture, and envisioning you lying in your crib or rocking in the little chair with an oversized book in your lap.  I wanted to meet you so badly it hurt.  Tears brimmed in my eyes as I cradled your tiny head in my hands when you made your way into the universe.  I was there.  Clutching you like a football made of glass, I held you tightly against my chest as I walked the hospital halls with you into the wee hours of your first night on earth.

 

I remember loving your hair and hoping that it would stay strawberry blond (with a hint of red) all your life.   I remember making up a silly song for you all about each one of your features and singing it over and over again while changing your diaper or giving you a bath.  I remember the first bath your mama and I ever gave you.  We put the baby bathtub on our kitchen counter so that everyone in the house could see you.  You didn’t even cry.  Instead, you just stared up at us with your sea blue eyes, kicking your feet.  I will never forget that.

 

I want you to know that I miss kissing you through the fence at daycare during our morning drop offs and that my heart breaks when I think of the few times I picked you up at the end of the day.  I will never forget waiting for you to notice that I was there.  You were always sitting with the rest of the kids on the mat, listening to one of the staff read a story.  Your head would somehow know to turn around and when it did, the biggest, toothy smile would appear on your beautiful face.  This was always followed by a “MOMMMMMYYYYYY!!!!” and a hug that I wished would last way longer than it ever did.  I will forever wish that I came to pick you up more often when I had the chance and I will try to do better with your brothers.

 

I want you to know that when I hold you in my arms I just want to pull you right inside me and keep you there until the immense hole in my heart feels full again.  I miss you already and you’re not even gone.  When we sit on the couch together I love holding your hand.  I tell myself that you’re squeezing back even though I know that’s not true.  The reality is that the tumour in your brain is causing the pressure in your head to build and push down on the area that’s in charge of moving your fingers, causing them to stay locked like that.  These days it seems like the more I take advantage of the incredible opportunity your “bounce back” has given us, the more we “live” as a family – the more my heart breaks in the face to true gratitude for this “extra” time we’ve been given with you.  I want you to know how much you’ve taught me in your short life.  I now know what to do with all the love I have inside me.  I know what it truly means to be “in the moment” and I know how I want to live my life.  I thought I already knew all of this but watching you (for more than a year now) adapt to each and every unfair, horrible and complex reality that DIPG has thrown your way, has left me in complete and utter awe of you.

 

When you started to become unsteady on your feet – you said “mama carry me.”

 

When you couldn’t walk anymore – you told us where you wanted to go.

 

When you couldn’t feed yourself – you said “mama I hungry”.

 

When you couldn’t use your potty anymore, – you played along with us as we put your “big girl underwear” over your diaper.

 

When you lost control of your arms – you learned to dance with your head.  When DIPG took that from you too – you learned to dance with your eyes.

 

When you lost your ability to speak – you not only learned to stick out your tongue to communicate “yes”, you also decided that leaving your tongue out for more than a few seconds also means that you want your bottle.  You taught us that.

 

You taught yourself how to paint with your teeth and you taught your mommies that you CAN still participate in everything in your own way.  You reminded us that you still WANT to participate in everything.

 

You taught me about what the word “comfort” really means.

 

You’re so funny.  You’ve always been funny, right from the beginning.  I truly “get” your inappropriate sense of humor.  You’ve had inside jokes with people since you could barely walk and that puts you in a league of your own….well, that, and the fact that you find humor in other people’s pain.  I love that about you.

 

I want you to know how much I adore your laugh.   Lately, I often find myself sitting on our couch (long after you’ve fallen asleep on my lap) and watching videos of you from our “old life”, just so I can hear your voice.   It breaks my heart but I need to hear it.  I remember how you used to say each and every word and I miss the sound of your voice desperately.  You talk to me with your eyes now and I love that too but I want more.

 

I want to keep you.

 

I want you to know how incredible I think you are.  You and your brothers are (with a little help from your Mama), my greatest accomplishment and the very best part of my life.

 

I need you to know how much I love you.  Your smile will be forever etched on the walls of my heart and I will carry you inside me forever.

 

Love,

 

Mommy

 

 

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Wordless

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Wordless

 

I haven’t cried for Stella in what feels like a long time.  In my world, time is not linear, so “a long time “can sometimes be a day (if it’s a really bad one), a week or even a month.  But in this case it means about three weeks.  In that time, I have cried from exhaustion, cried at a TV show, and cried for my neighbor, but not for Stella.

 

Sometimes, even though I’m sad, the tears just don’t come.

 

Similarly, sometimes even though I have a lot to say, words just don’t come.

 

As I’ve continued to watch cancer destroy my daughter’s body, I’ve felt more and more that the language around it does not adequately express what it’s like to be living with this disease day after day.  I’ve written before about how the words “fight” and “battle” and “survivor” make me bristle.  As Stella physically winds down, I see that her needs and wants are just as simple as her newborn brothers.  She longs for safety and security, ice chips in her parched mouth, comforting arms and a little brush of sunshine to warm her skin and colour her cheeks.  She is not at war with cancer, she is at peace with it. Cancer is not an enemy we are trying to conquer, it is a long, dark dance we are learning to match to the music in Stella’s soul. Although Stella’s dance with cancer has been far longer and far more beautiful than anyone imagined, it is still a daring piece of art full of turns, twists, lifts and dips.

 

This past week has been full of the ups and downs that dancing with a brain tumor gives you.  Beautiful days that we wish we could freeze for their sheer perfection, and moments of overwhelming sadness where we can’t even fathom what our life has become.  More and more I am finding that there are no words to explain the complexity of feelings and experiences that we are living through. How do you express the inexpressible?  Words are inadequate.  When we search for the right ones, we often say the wrong thing.  A moment of dark humour in Stella’s cancer came early on, when Aimee and I were still reeling from the reality of what the Doctor’s had told us.  We “escaped” to Aimee’s moms house for a night so we could gather our wits, sleep, immerse ourselves in the silence of an empty home.  As we got out of the car to enter the house, Aimee’s mom’s gardener was there and he came over to offer his condolences.  He said he was sorry to hear about Stella and then searched for something else to say.  You could see his eyes darting desperately around as he sought the right words.  Finally, he just waved at Aimee’s pregnant stomach and said, “well, nothing to say except…better luck next time”.  Luckily the absurdity of this comment wasn’t lost on us, and we were able to stare incredulously at each other and laugh it off.  But it would have been better for him to say nothing at all.

 

I think the power of words can only be transcended by the power of silence.  Since Stella lost her ability to speak (gradually since October, but she said her last discernable word around May of this year), she lives in a world of silence, but still finds other ways to express herself.  When she wants to say “yes”, she sticks out her tongue.   When she is happy, she grins or laughs, and when she doesn’t have the energy to do that, she widens her eyes and smiles with those instead.  When she is tired, she yawns.  When she is upset, she jerkily moves her left arm around and whines.  When she is uncomfortable she grinds her teeth. Stella tells us much more in her silences and with her body language than many people communicate through speech. Yet despite Stella’s comfort with silence, I still felt compelled to fill the space around her with idle chatter and Dr. Phil in the background.

 

A few days ago, the neighbour I wrote about last week ended up coming over to my house (http://www.stellabrunermethven.com/updates/note-to-a-neighbour.html)

He walked into the door and we just looked at each other for a few seconds, and then he took two steps forward and enveloped me in a massive bear hug. We just stood in the hallway of my home and hugged each other for a long time.  No words were exchanged at first, but a thousand or more were understood. As we stood together, virtual strangers using this hug as a band-aid for our open wounds, I realized that Stella’s cancer has brought with it yet another clarity— love is not found in noise.  Trees and flowers make no sound when they grow…the sun rises and sets in silence, so I don’t need words or language to describe our journey with Stella, or to make others understand.  The things we strive for most of all— comfort, joy and love—are all found in silence.  And hugs.

Some quiet and not-so-quiet moments from the last week:

 

Stella and Hugo nap on me…a pile of blankets and warmth:

Sam sleeps on Nanny’s shoulder at the Fall Festival:

Stella cuddles Hugo:

Tutu reads to Stella:

Auntie Heather shows Hugo, Stella and Sam pictures on the computer:

Stella:

 

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Note to a Neighbour

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Note to a Neigbour

Dear Neighbour,

I don’t know you and you don’t know me.  Maybe just a quick nod or cursory wave once in awhile as we pass each other on the street.   We are neighbours, but not the kind of neighbours that have BBQ’s together or whose kids play together.  It’s probably because we just haven’t had time these last few years to talk, but more likely it’s because we don’t really have too much in common on the outset— you guys are a bit older than us, you have a huge Greek family, your kids are 17 and 15, and I guess we are all just busy living our own lives behind the doors of our matching bungalows, close in proximity but strangers in real life.

But we do have a connection, even though we’ve never talked about it or acknowledged it before.  You see, my daughter was diagnosed with a fatal brain tumor in June of 2011 and your son was diagnosed with Renal Cell Carcinoma in February 2012 that has now metastasized to stage 4, meaning his cancer, too, is fatal.

So while I don’t know you, I know that feeling you get when a Doctor looks you in the eye and tells you that your child is going to die.  It’s a wave of iciness that rolls in waves from your stomach up to your throat where it solidifies into a gag.  I know how it feels when your heart breaks and the smashed pieces of it slice through your soul like a butcher knife.  I know what it’s like to not sleep for two weeks straight, staring at the world spinning around you, feeling completely disconnected from it.  I know that you walk around feeling like you are living in a nightmare but unable to wake up from it, no matter how hard you pinch yourself.  I know you are trying to be positive and strong in front of your child, but you really want to grab them with all your strength, pull him into you and scream “No” over and over again until it isn’t true anymore.

I saw you guys at the grocery store yesterday.  I saw your son in his wheelchair, pale and skinny, his eyes looking extra bright under the fluorescent lights of Sobey’s.  I saw you with your head down, pushing his wheelchair.  I recognized instantly the agony in each step you took.  I saw you standing there, trying to act normally, just picking out apples from a bin, but I know you are aware that no matter how carefully you choose the bright red fruit, each bite will be tasteless because nothing matters other than the fact your child is going to die and that is what plays in your head day after day.  I wanted to reach out to you to tell you that I understand, but I couldn’t. So, I just pretended not to see you, and stood in front of the Deli counter watching you from the corner of my eye.

I imagine what it is like for you to see other 17-year old boys walking to school with their friends, listening to their iPods, laughing and carrying hockey sticks through the streets, starting to think about what University they want to go to next year.  For me it’s a bit different because Stella is only 3, so I get sad when I see kids with their backpacks on headed to school, riding their bikes, running into their parents arms.  But I know our bitterness about it all is the same.

I know how exhausting it is to get out of bed every morning and try to live in a world that you don’t fit into anymore.  I will tell you that the agony you feel as you watch your sons friends get bigger and stronger and live their lives probably won’t go away, but you will likely just learn how to live through the pain the way I have.  It never stops hurting to hear your child’s peers talk about their soccer games, field trips, playdates, etc. but eventually you just smile through it all and it doesn’t feel as acute anymore. You get used to being sad.  But I do know the pain and anger you feel when you look at other kids his age, wondering why it had to be your child, your life, your heart.  I understand how hard it is to try to forget about all the dreams you once had because the reality is too hard to understand most days.  I know what it’s like to have days where you can’t stop crying, and days where the grief is so intense that you are in too much pain to even cry.  And people will tell you to focus on the good memories you have with your child, before they got sick, but the good memories hurt just as much as the bad ones.  I understand how it feels to watch your child lose their physical abilities one at a time and to scream at the universe that your child has suffered enough and to just STOP it already.

I wonder if you’ve learned some of the lessons that we have about smiling through the pain, taking it one day at a time, and making as many memories as you can.

I wonder if you’ve learned to compartmentalize the pain, joy, fear and hope that come with each breath in order to make it through the day.

I wonder if you’ve learned that every single time your child smiles, it tattoos itself on your soul.

I wonder if you ever think about me the way I think about you.

I wish I was brave enough to knock on the door of your house and give you a great big hug.

I wish I was confident enough to be able to tell you that we’ll get through this somehow.

I wish I could talk to your son and ask him how it feels, because then maybe he could give me some insight on what Stella is feeling.

I wish I could let you know that I care about you, even though we’ve never really spoken.

But most of all, I wish neither one of us knew how it felt to be the other one.

Sincerely,

Mishi

Stella plays at Kimbourne Drop-in Centre:

Stella and Hugo under the tree with Poppa:

Xavier and Sam are besties!

Our girl:

 

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The Strength of Stella

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The Strength of Stella 

Thank-you so very, very much to everyone who has been keeping vigil with us and Stella these last five days, both from near and far.

 

Thank-you for your prayers, your candle lighting, your faith, your food, your company, your love, your cards and your caring.

 

I wrote a blog several months ago about religion and faith and trying to figure it all out.  I’m still in the midst of my spiritual discoveries and journey, but I have to share with you that I am convinced Stella can feel the great powerful energy that has been generated on her behalf because, once again, she is defying what the Doctors told us.

 

Last Tuesday we were told that Stella was fading quickly, that we were down to days with her (the fourth time we have been told this in the last 14 months).  She was sleeping almost constantly and eating only small amounts of ice chips.  Not able to reliably swallow her medications any longer, we moved her to a morphine pump to control her pain.  We spent three days monitoring her every breath.  We carefully recorded the last time we had seen her laugh, or smile.  We watched her struggle to open her mouth even a little bit.  We carefully swabbed her eyes which were crusted over, staring at nothingness. We stroked her hair, told her stories, gave her kisses.  We put a sign on the door indicating we were not longer accepting visitors.  Our families took time off work and school and came to us.  The Doctor contacted the funeral home to confirm everything was ready.  The person doing Stella’s service contacted us with final details.  Aimee and I held each other and kept repeating that we were going to get through this.  Our hearts broke, our stomachs churned, our racing minds kept us awake at night.

 

And then…incredibly…since yesterday…Stella has come back.  Out of nowhere her eyes are suddenly open and clear.  Her colour has turned from ashen to pink.  She is able to drink fluids again.  She is able to eat again.  She has even smiled a few times.

 

We don’t know what to make of it.  The Doctor doesn’t know what to make of it.  We are still cautious about what all this means.  We have not exhaled completely yet, but we were almost giddy with excitement today when Stella seemed up for playing again.  Trying to cram everything in that we could, we took her to the backyard to play in the sand and baby pool.  We gave her a bath. We pulled out her electric car and took her for a drive.  We read books.  We sang songs.  We laughed.

 

We don’t know what tomorrow will bring, but today gave us a hundred more memories and 133 more photographs of another day with our girl.  And I can’t figure out any reason that this could have happened, other than that the universe was so full of love and light for our girl that she decided to give us a little bit more herself.

 

Also below are two blog entries from Stella’s Aunties (Heather and Juju).  They are different. They were written on different days, in different styles.  They are about different things, but they both pay homage to how our girl continues to amaze and teach us about life…and ourselves.

Today our family made some memories!

Another day with my girl:


 

Humour Is A Funny Thing

By: Auntie Juju (Julia Gonsalves)

Humour is a funny thing. Sometimes its about words, sometimes its about the placement of a pause, a facial expression, purely a context. Stellie you have brought out the most basic humour in all of us- makeshift costumes, the animation of inanimate objects, mock stealing, the “I got your nose” kind of humour that delights kids your age, and adults our age in times of crisis especially. It is humour we don’t need to think about, or plan, or even be funny to pull off well. And there are some jokes that really never get old- the ones that end up in a smile, a laugh or a smirk from you. And often the ones that don’t make you smile, make us smile amongst ourselves because we are making fools of ourselves and we suspect that you know it. Maybe we even embarrass you sometimes, because you give us that plain look of a teenager that says do you have any idea how ridiculous you look? Humour has been here ever since your diagnosis- lucky for you kid your family was pretty damn funny to begin with (mostly intentionally). We make jokes about the most untouchable topics now, and we stand on our heads for your sake Stellie, but also for our sake. Because of you we’ve discovered that your Auntie Angie does a spirited british accent and has some intense puppetry skills she would never have revealed, didn’t even know she had, before this. Stellie because of you we have cried much less than we expected to, and laughed much more. We have been training our bodies with your help since last June to retain the practice of laughter as a tool for support, connection with each other, barrier from severe mental health symptoms, and a creator of energy when any of us finds those reserves completely depleted. Stellie thank you for appreciating our humour, from the most basic to the occasionally more advanced, for encouraging it by random flashes of the most brilliant smile. Thank you too for allowing me to feel confident that even when you are physically unable to smile, that you still value our attempts, and translate them, for you and for us, in languages of love, and security, and mutual benefit.

Anything for the promise of a smile: 


Our Extraordinary Girl

By: Auntie Heather (Heather Methven)

The journey with Stella is comparable to the opening tornado scene in The Wizard of Oz. Our families have been swept away and we are constantly churning in a state of fear, uncertainty and unpredictability. I thrive on routine, facts, order and predictability. The unknown drags me down into a pit of anxiety and panic. This whole journey has taken me out of my comfort zone and forced me to confront my biggest fears as well as, fears that I didn’t even know existed. This journey has also taught me valuable lessons and has changed my view, as well as my thinking on a lot of areas in my life. It has made me weaker and it has made me stronger. This year has been the most devastating, yet extraordinary year of my life…if that makes sense.

 

The devastating piece that we have known from the start of this journey is that Stella will die. I still cannot even phantom how we are all going to cope when our girl is gone.

 

The extraordinary piece is that we grew closer than ever as a family. We laugh, cry, vent, support and enjoy each other. I have realized

how precious time with family is and I will always ensure it comes first before anything else.

“The only rock I know that stays steady, the only institution I know that works is the family.” – Lee Iacocca.

 

The extraordinary piece is that Stella was only given approximately three months to live but she amazed us all and is still with us after fourteen months. Fourteen glorious months of special memories and time spent together.

 

The extraordinary piece is how adaptable Stella has been through this all. We were fiercely distressed wondering how Stella would cope when she lost her abilities one by one. We all eventually realized that our

distress was our distress. Our girl would provide us with valuable lessons on endurance and perseverance. As Mishi reminds us “Just because you can’t walk, doesn’t mean you can’t dance.”.

 

The extraordinary piece is how many people have “stepped up” to help us and hold us up through this journey. Mishi and Aimee have always had the most exceptional friends (which is actually a testimonial to them). Family, friends and strangers have joined us, comforted us and assisted us throughout the entire journey and we will forever be grateful.

 

The extraordinary piece is learning from two of the most remarkable mothers in the world. They have shared their journey with all and opened their minds, hearts and feelings knowing that it would put them in a vulnerable position.

 

The extraordinary piece is that Stella has changed the lives of many and has accomplished more in her three short years of life than most adults ever will. We have all learned exceptional lessons from our girl that will stay with us forever. She is the best teacher I have ever known.

The extraordinary part is that Stella is a living treasure of gold, she left her mark on the world and the world is a better place because of it.

 

We have all been blessed with support from others. There have been so many people that have personally helped me navigate through this. It would be unfair if I did not mention two very special ladies that have kept me from enduring a nervous breakdown during this turbulent time. Andrea (my therapist) and Wendy (Daniel’s mom).

 

As soon as I found out Stella had DIPG I spent hours and hours looking for anything and everything I could possibly find about this monster. I joined every on-line DIPG group. I followed blogs of parents who have had or have a child with DIPG. I have read obituaries from thirty-two children who have passed away from this atrocious disease since Stella’s diagnosis.

This is a reoccurring poem that I have seen on many of the DIPG websites; I would like to share it with others:

 

After the death of a child

Please, don’t ask me if I’m over it yet.

I’ll never be over it.

Please, don’t tell me she’s in a better place.

She isn’t here with me.

Please, don’t say “at least she isn’t suffering”.

I have yet to come to terms with why she had to suffer at all.

Please, don’t tell me you know how I feel-

unless you’ve lost a child yourself.

Please, don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please, don’t tell me “at least you had her so many years.”

What year would you choose for your child to die?

Please, don’t tell me that “God never gives us more than we can bear.”

Please, just say you are sorry.

Please, just say you remember my child.

Please, just let me talk about my child.

Please, mention my child’s name.

Please, just let me cry.

And, if you are brave enough, you will share the story of our extraordinary girl.

Auntie Heather sings Stella her favourite songs:

 

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