Stella’s First Word Was “DOG”

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I had forgotten that Stella’s first word was “Dog”.

Sitting in the library at my school Wednesday, I was working on an assignment that made my eyes burn with boredom. Needing a break, but not wanting to lose my coveted private study desk, I idly scrolled through the photos stored on my computer. A still of Stella caught my eye because it looked unfamiliar. It turned out to be a video. There was Stella, sitting on Aimee’s lap while I filmed. Our dog Lucy walked by the frame and Stella pointed and said, “Dod, dod!”. The next 38 seconds is Aimee and I doing the typical, annoying parent thing of saying over and over again in baby-talk voices, “Yea Stella, that’s the dog. Who is that Stella? The d-o-g, dog”. You can see Stella in the video trying to escape from Aimee’s lap, twisting and turning. A few times she indulged her parents by saying “Dod”, a feat which we exclaimed and applauded over. I watched the video over and over again, tears streaming down my cheeks. I had forgotten this video. Forgotten this moment. Forgotten that Stella’s first word was “dog”, and that she was only 9 months old when she started forming words.

How could I have forgotten? I felt so guilty as I wondered what other treasures of Stella’s life my brain had buried so deeply that I couldn’t find them anymore.

I moved to the next video, and the next one, and the next one. As I watched the smudged computer screen come alive with Stella’s voice, Stella’s curls, Stella’s smile I could physically feel my heart breaking over and over again. The world around me melted away and all I could see or hear was Stella. I lost track of where I was and how long I was sitting there. I didn’t even feel the tears that were streaming down my cheeks. It was as though the shell I had carefully constructed around my soul was crumbling piece by piece, leaving my wounds open and raw. I sat alone in the library and just watched and cried. There was nothing and no one else around in those moments, just Stella and I.

Eventually, I looked up from the computer screen and remembered where I was. I could feel that my face was hot and puffy from crying, but I really didn’t care. No one sitting in the library pays attention to the person sitting in the little desk cubby next to them. Some people sleep, some people eat, and I’m sure I wasn’t the first to leave puddles of salty tears on that scarred veneered desk. I tried to collect myself, but the same sentence kept running through my head, “Stella’s first word was dog”, and she was still a baby when she started saying it. How could I have forgotten that? I racked my brain to see if I remembered the boys first words. Sam’s first word was “durd” (bird), Ernie” (his Sesame Street stuffed animal), and “Stella” followed quickly by “mama” and “baba” (bottle). Hugo’s first word was “ball”, then “baba” and “mama”. Yes, the memories were all there, all intact.

Watching those videos taken of Stella in the first two years of her life made me remember that before DIPG, before this blog and the Toronto Star stories and the friends and strangers and family who loved Stella, before all that there was just Aimee and I and our baby. First-time parents in the videos, we clap enthusiastically as she eats the portable telephone. We took a 1min 8 second video of her eating toast the morning of her first birthday. We have Stella at 8 months eating cereal while Aimee and I fill in what we think she is saying in a long monologue off camera. We have a 3 minute and 45 second video of Stella at 9 months old crawling around my grandparents house in New York. Crawling around and exploring. Even then, she never stopped moving. There is a 29 second video of Stella sleeping in my arms, snoring quietly as we giggle in the background. There are others. Christmas, birthdays, her first trip ever to Great Wolf Lodge at 11 months old. But what struck me the most was how normal and mundane it all was. We were just an ordinary family, and Stella was our firstborn so every burp, every fart, every smile was cause for a picture and a phone call to our parents to brag.

Although Aimee and I are so happy that so many people have gotten to know and love our girl, there is sometimes a feeling that when stories about her are repeated over and over again, they move from being narratives to becoming almost a caricature of who she was. The stories are true, but they could never truly capture the nuances of who Stella was. And the stories and anecdotes are such a teeny tiny part of the life that we had with her. Because when she wasn’t doing or saying something extraordinary, she was just being a typical child. Most days were the same. Stella went to daycare, I picked her up and brought her home. Aimee would come home shortly afterwards and one of us would start dinner while the other one played with Stella. After dinner it was bath and bedtime. There was nothing extraordinary about it, nothing remarkable. And there is no blog or no story that can ever truly capture those early days of bliss and struggle and ignorance. The softness of her cheeks, the brightness of her smile, the chubbiness of her cheeks. Aimee made up a special song for Stella that we used to sing to her almost every night as we bathed her…

You got a cheesy chin
And blue-ue eyes
You got re-e-e-ed hair
And chubby thighs
Cuz you are beautiful
And you’ve got two moms

You’ve got two red lips.

You have a button nose
And a space between your toes
Cuz you’re my perfect girl
And I love you so
You’re my perfect girl
Never gonna let you go

But the tune is something Aimee made up, so there is no one in the world that knows how to sing it to Stella other than Aimee and I (maybe Auntie Heather too, as she spent a lot of time here). There is no one in the world other than Aimee and I that knew the dull nausea you felt when Stella called from her bed at 5am. You just wanted to cry as your feet hit the cold floor and, shoulders hunched in exhaustion and defeat, you plodded into the darkened bedroom to retrieve her. There is no one that was here for the long Saturday afternoons when we would sometimes entertain her by taping newspapers on the floor and letting her paint while Treehouse played, ignored, in the background. No one who knows the relief I used to feel when she finally fell asleep in my arms at the end of a long day. I would often keep holding her for a few moments, enjoying the fact that she was finally still and look at her chest slowly rising and falling as she breathed. Aimee and I would trace our fingers across her chipmunk cheeks and try to guess where the first freckles would pop up. These moments have no photographs to accompany them. No videos to remind me. There is no one that will say, “remember when…” because these were the private times. Like a corsage placed between pages of a book, these memories are so fragile and tenuous. There is no one else who can record them, remember them or speak about them. Just me. Just us.

I remember now. I remember that Stella’s first word was “dog”. I remember that she cut her first tooth on Hallowe’en. I remember that we called her “Ella” for the first three months of her life, until we decided that she was too spunky and energetic to be anything other than a Stella. I remember that she insisted on wearing her green rubber “froggy boots” in the middle of winter. I remember she couldn’t tell the difference between yellow and orange. I remember how I cried every morning for the first 11 weeks of her life because I was overwhelmed and miserable and convinced I was the worst mother in the world. I remember how she used to smack her lips in her sleep and how when she felt warm her cheeks would get so red it would look like a rash.  I remember how her forehead smelled like sweetness and sweat.

Don’t worry Stella, I remember you.

Sam at Science Centre:

IMG_5395Xavier and Auntie Heather at Science Centre:IMG_5391Hugo isn’t convinced about his new haircut:

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Stella and Gracie, Dec. 2010:

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Grapes of Wrath

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Last Sunday, I stood before the congregation at my Church and I spoke about Stella.  I told a few stories about the kind of kid she was, then talked about how absolutely amazing our community was for coming together and giving her such an incredible life, and I finished by encouraging people to remember those who have died and to give thanks for them and all they brought into their lives.  Afterwards, the Church Choir sang “Thank You For Being a Friend” (theme song from Stella’s beloved Golden Girls TV show), and I sat in the pews surrounded by friends and family and cried a river of tears for Stella.

 

When Church was over, several people came up to me and shared their own stories of grief and loss.  One man said his brother had died of cancer ten years ago, in his mid-thirties.  Another woman told me she had lost a baby as well.  Several people came up and hugged me and thanked me for sharing our story.  Just as I was backing out the door with my coat on, an older lady beelined towards me, grasped my hand and looked right into my eyes.  Urgently she said to me, “You didn’t talk about how angry you must have been at God.  You didn’t tell us how you learned to forgive him”.  I was caught a bit off guard and just stuttered something about how everyone has to make peace in their own way, but as I walked home a little later the conversation stuck with me.  I tried to remember if I had ever been angry at something or someone specific.  I know I have been angry.  Blind, hot, red rage has coursed through my veins threatening to spill out of my pores in a fiery explosion of hurt and pain.  But I’ve never blamed it on anything specific, least of all God.

 

The thing is, peoples relationship with any type of God is complicated and individual.  I personally think of God as a manifestation of the energies of the world, a figure who is there to comfort and bring Peace but not some almighty Dictator.  I believe God lives in all of us somehow, and is revealed in the good things we do for each other and the way we live our lives.  It used to drive me absolutely crazy when well-meaning people would tell me or write to me, “I’m praying for a miracle” or, “Doctors aren’t in charge, God is in charge” or, “Don’t lose faith.  God can heal and save your daughter”.  Three times I had people grab Stella’s head and pray to God to heal the tumour within.  One person even released her head after a moment (she was wiggling and whining) and said to me, “There.  She’s healed”.  I just looked at them in disbelief.  I didn’t believe that God was going to swoop down and magically cure my daughter anymore than I believe he swooped down and put the tumor in her brainstem to begin with.  Cancer is a medical issue caused by the uncontrolled division of abnormal cells.  In the case of DIPG, it is random and unexplained.  How could I ever put my faith or love into a figure that I also believed would give my child such a horrific disease?  It makes no sense to me. The God that I believe in is not one that would randomly choose to “save” those who are faithful and punish those who are not.  The God I believe in does not practice favouritism.  My God would not purposely allow innocent children to be hurt and abused the way many are.  The God I believe doesn’t micromanage the world from some fluffy cloud in the sky.  My God is nurturing and defies definition or expectation.  In Church each Sunday, the congregation greets each other and sings:  “The Spirit in me greets the Spirit in you Hallelujah God’s in us and we’re in God, Hallelujah!”  That is how I see God— within each of us.

So while I have been angry, I have never been angry about God.  Instead, I’ve been grateful. Because the selfless generosity and abounding love we experienced during Stella’s illness is where I personally found God.  Peaking out between the layers of icing on homemade cupcakes.  Hiding in the well-used DVD player.  Looking over my shoulder as I read King Hugos Huge Ego for the 1000th time.  Singing the Golden Girls theme song loudly and off-key with our sisters Heather and Andge.  And through my own experiences, I know S/he is beautiful and nurturing and powerful.

 

There is a DIPG blog that I’m following right now which speaks constantly of God’s ability to heal the tumor.  The young person in question is sure that they will survive DIPG because of a strong faith. It makes me sad to read, because I know how this story will end.  I wonder if when the tumor does overcome this girl, if the family will feel betrayed by God, or if it’s them that will be left feeling angry.  I wonder if their denial and hope is a good thing as it is allowing them to live as though they have all the time in the world.  Hope for survival is a powerful opiate, and Aimee and I never had any.  With Stella we lived everyday as if it were here last, ice cream for breakfast and Dora The Explorer all day long.  It was fulfilling, but exhausting to try to enjoy every single second of the day, knowing each breath and giggle and sigh was precious.  This girl with DIPG is still going to school around Doctor’s appointments and eating her veggies.  Is one better than the other?  No, but I believe the experiences are very different.  I don’t believe Stella was “chosen” to die at 3 1/2, but I do believe that we had a choice in how to live out her last days and I’m glad we did it the way we did.

 

While I sat in the hard wooden pew on Sunday, I took a moment to look at some of our closest family members and friends who made the effort to be there to hear me speak about Stella.  I continue to marvel at how selfless they were to choose to spend time with us and allow themselves to love Stella, even knowing what the end result would be.  I have one friend— a best friend, the kind who you told everything to and had a decade of belly-laughing memories with— who disappeared when Stella got really sick.  It was too difficult for her. It hurt too much to watch me fall apart emotionally and bear witness to Stella falling about physically.  So she walked away.  She didn’t even know that Stella had died until two months after the fact because she buried her head so deep in the sand we ceased to be part of her daily thoughts. She didn’t ask about us, doesn’t read the blog.  In the last year, she has reached out to me a few times via email.  In her emails she says all the right things, and apologizes for her absence.  She says she wants to rebuild the friendship.

 

And I keep deleting the emails.

 

I thought I could forgive, I thought I had forgiven, but I can’t.  When I read her words, all I can think about is how she wasn’t there when I needed people around me the most.  I can’t help but compare to all the people who were here.  Whether we asked or not, they just showed up.  My gratitude and admiration is reserved for those who continued to care, who continued to come and visit, and allow their children to have a relationship with a little girl who they knew was going to die.  I am in awe of the people who agreed to have their hearts break with us, and who accepted the deep pain and sadness that came with being part of Stella’s journey. They laughed with us, they cried with us, they shared our intense pain and when we were too broken to function, they stepped in and held us up until we were ready to stand on our own two feet again. These are the people I want in my life.  This is the way in which I feel “God”— in the words and actions and love of those who walked with us, even when the road got hard.  I just can’t accept the people who took a shortcut, waited at the end and now are there, saying they’re ready to join us again.  It feels too much like cheating.

 

I believe that Stella’s life and death made me a better person.  She taught me how to prioritize, how to appreciate the small moments in life.  But I am still a human being, and I am far from perfect.  I still cannot forgive and forget everything.  I still cannot pretend to be someone I’m not.  I still cannot always say or do the right things.  A few months ago one of my friends lost her step-father.  I wanted to send a nice card, to bring her a meal, to be there for her the way she has been there for me.  Yet I did none of those things.  I barely acknowledged the loss.  I don’t know why, I just got busy with the kids and school and life and didn’t get around to it.  But I should have.  I should have made time.  I am still struggling to change.

 

A year after Stella’s death and over two years since her diagnosis, I am still learning.  Still hurting.  Still growing.  Still healing.

 

And yes, sometimes I am angry.  But that may not be a bad thing.  Malcolm X said, When people are sad, they dont do anything.  They just cry.  But when they get angry, they bring about action and change.

 

So I embrace the anger the same way as I embrace all the other emotions.  And I celebrate my God— the one who I can feel hugging me when the sun hits my shoulders.  And I hope and dream and laugh and cry.  In short, I do what Stella taught me to do most— simply live 100% each day.

 

Stella lit up the Church on Sunday (photo by John Reston):

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Sam and Xavier had a joint second birthday party! 

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Gracie and Hugo: 

IMG_5036Sam and Hugo, each dressed up in one of Stella’s Hallowe’en costumes:

IMG_5305Hugo at Stella’s beloved Kimbourne Drop In Centre:

IMG_5330Stella sitting happily at Kimbourne, January 2011.  She is actually having a timeout, but she looks pretty content!

Timeout

 

 

 

 

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