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):

Toronto-20131103-00280

 

Sam and Xavier had a joint second birthday party! 

IMG_4893

 

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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Are you there, God? It’s me, Mishi.

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Are You There, God?  It’s me, Mishi.

Okay, so I totally ripped the title of this post off from that famous book, Are You There God, it’s me, Margaret…but I feel like it’s the right way to start, because this entry is about asking questions.

Maybe because we took the commercialism out of Christmas this year, I have been thinking a lot more about God and religion.  Instead of focusing on presents and rushing around and decorations and shopping, we just spent time as a family visiting and eating and enjoying one another’s company.  It was actually quite lovely and completely stress-free.  I think we may have stumbled upon the secret of getting through the holidays…get rid of the expectations, the formality and the focus on monetary things and you are left with a very basic and stripped down version of Christmas that leaves you feeling grateful, gracious and glad to be where you are.  It was truly wonderful!

But also having some free time reminded me that the original reason for the season, before the advent of Santa Claus and candy canes, was to celebrate the birth of Jesus.  So I watched a few Church services and let my mind wander to that side of the Christmas experience as well.  God and I have an on-again/off-again relationship.  Not for any particular reason, other than that I have wavered on my beliefs, the strength of my beliefs, and what I really think.

I’ve attended a variety of Churches at many different periods in my life.  I’ve tried Episcopalian, Presbyterian, Unitarian and United– I even went to Catholic Mass twice just to see what it’s like.  I was baptized in the Episcopalian Church on Staten Island, New York where my mother is from, and when Stella was 6 months old Aimee and I took her to Staten Island to be baptized at the same baptismal font as my sister and I, my mother and gradfather were all baptized at.  And, no matter where I go, I have found that I actually quite enjoy Church.  I like the ceremony of it, I like the music, I like listening to the sermons with a critical ear and furthering discussions about it in my own mind.  On boring days, I like counting hats in the audience or studying the stained glass windows, looking for the story embedded within.  But I’ve yet to find a congregation that was completely right for me, so I continue to hunt around periodically, not quiet able to put my finger on what I’m looking for.

When you are dealing with something as inconceivable as the slow and cruel death of your daughter, I think it’s only natural to want to find some sort of higher meaning and reason for your loss.  Since Stella’s diagnosis I have read every book I could get my hands on about dealing with the death of a child and overwhelmingly I have found that other parents seem to find their greatest relief and healing through religion.  To be blunt however, when you are the parent of a child who is going to die, reading that other parents found acceptance through belief in God is not all that helpful to me.  I am looking for some concrete and real coping methods, and somehow that solution rings hollow to me.  Maybe I’m just jealous. I really admire people who have an unwavering belief and faith in God.  I think it makes it easier to accept something like what we’re going through.  I think it is comforting to imagine them in “a better place” with God, in Heaven, or as an angel.  It must be endlessly comforting to believe without a shadow of a doubt that some higher power chose you to bear this burden and to live through this loss because of a greater lesson or greater good.  It probably dissipates some bitterness and jealousy you have towards the world if you think that you were meant to suffer and it makes you better in the end.  Over the last six months I’ve tried to find that peace and comfort with Stella’s cancer.  I’ve listened to all the people who tell me they pray for us and that God is watching over us.  I’ve watched some people try to “heal” Stella by praying over her and telling us to believe in miracles.  I want to be able to look to the sky and imagine that some omnipresent person is smiling down and guiding us in this journey.  Some days I can, other days the best I can do is convince myself that Stella came to be with us for a reason and that the randomness of life has simply hit us directly between the eyes.

I really wish that I could just believe, believe, believe, but I am in essence a fact person and I find many of the “facts” that have to do with God a bit questionable.  If you factor in the scientific proof regarding how the earth began, the evolution of man, etc. many of the stories in the Bible begin to sound downright fictional.  I guess that’s why faith is such an abstract concept to me.  It’s like I want to believe so badly, but something keeps stopping me.  Yet, when I feel the most hopeless and helpless, I always look to the sky for guidance as though there will be a message in the clouds.  Today Stella is sleeping quietly on the couch next to me and the sky is just one big, grey blanket covering everything with fluffly white snow just like the movies.  It looks cold and cruel outside, but it is still warm and cozy here on the couch.

This summer I was stopped by our elderly neighbour Rose.  Rose it probably close to 90 years old and has lived next to me my entire life.  She is Italian and speaks very little English.  It was maybe 9 weeks after Stella’s diagnosis and I was walking down the street with Stella.  Rose motioned to be wildly to cross the street, so I dutifully went to go see her.  She frantically started telling a story in broken English.  It was something about that she was “bleeding like a young girl” and was rushed to the hospital.  She said while she was lying there, not sure if she was dead or alive, she felt someone stroking her hair gently and when she looked, it was Stella.  Her eyes grew big as she grabbed my arm and said earnestly, “Mi-ch-e-elle.  She an angel.  It mean she an angel!”.  Rose had no idea about Stella’s diagnosis, nobody had told Rose she was going to die.  I remember standing there stunned, clutching Stella to my chest with tears prickling my eyes.  I wanted so badly to believe that she was right.  That Stella was an Angel who was sent to us to teach us and love us and be with us.  This story might be enough for some people, but I still waver in my beliefs.  Sometimes when I stare at Stella, at her perfect porcelain skin, her straight white teeth, her rosy cheeks, beautiful blue eyes and head of curls I do think she’s an angel…then she opens her mouth!  If she is an angel she is one with sass, attitude and a penitence for mischievousness.  I can only imagine the trouble she will get into with the other angels…

I don’t know God, I guess you and I still have some exploring to do.  I am going to try to go to Church again for a few months.  Someone recommended Eastminster Presbyterian on the Danforth.  I’m not sure if I’ll find what I’m looking for, but any measure of comfort is welcome at the moment.  In the meantime, I’ll just keep looking up at the sky searching for a little ray of light.  Or, when it’s cloudy, I’ll just find it in Stella’s smile.

Her Smile!


Christmas Fun


Is this the face of an Angel!??

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WHY? (By: Auntie Heather)

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WHY (By: Auntie Heather)

Why does DIPG exist?
Why does it take so many innocent children?
Why is there no cure?
Why is there no hope?
Why is the only option death?
Why is this happening to sweet, innocent Stella?
Why is it slowly taking away her abilities?
Why is she no longer able to walk?
Why is she no longer able to talk?
Why is she losing her ability to see?
Why is this happening to our family?
Why is she going to be taken away from us?
Why will we have to live without her?
Why am I still in denial?
Why is life so unfair?
Why isn’t God answering my prayers?
WHY?

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