Music To My Ears

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Parents whose children have died have to think about and overcome small daily struggles that other people never have to think about, or even pretend to understand.

For example, when I go on the Toronto Community Centre websites to register the boys up for swimming, I need to select from a drop-down list the child that I’m trying to sign up.  Next to Stella’s name is a note that says Stella Bruner-Methven: INACTIVE.  I asked them if they could just remove her name from the list, but they’re insistent that they can’t (which is total bullshit but you try getting someone who works for the City of Toronto to listen to you), so now each time I’m on the system I have to scroll past my daughter’s name and that horrible note until I get to Sam or Hugo’s name.  It makes my eyes prickle with tears every single time.  She is not “INACTIVE”  I bluster to myself.  She is DEAD.

And when I called the Canada Revenue Agency just after Stella died to tell them of her death so that they would stop sending the $100/month “baby bonus” you get here in Canada for each child, they advised me sternly that I owed them $100.  Why?  Because the October baby bonus for Stella had already been deposited into my account, but she died October 22nd, before the end of the month.  So I shouldn’t have gotten that $100 for October and needed to give it back.  “If she had lived to October 31st, you could have kept it,” the woman on the phone helpfully explained to me.  “Oh, and you will also see a reduction in your GST cheques because you’re going from 3 children to 2”.  Thanks, Canadian Government.

In the last two months we have gotten phone calls from daycares that we put Stella’s name on the lists for years ago.  Once in awhile, we still get chirpy messages saying, “This is Dandelion Daycare.  We just wanted to let you know that we have a spot for Stella.  Please call us to let us know if she is able to start on Monday March 25th…”  Aimee is the one who always calls back.  In case there was any doubt, she is a much nicer person than me.  She always just politely says that we are no longer in need of the spot, and leaves it at that.  If I were to call back I would tell them why.  I would say, “You can take us off your list because Stella DIED last year”.  I would want to shock them, to jolt them out of their sleepiness about the harsh reality of life and the fact that the little girl I hopefully and excitedly put on their stupid lists 4 years ago is gone now.  I want them to whisper about it in the staff room, and think about it and want to know more about the little girl that could have been there, but isn’t.  However, I am well aware it’s mean and pointless and petty, so I let Aimee make the calls.

Each birthday party invitation for Aimee and I needs to be weighed and measured and discussed for days as we lay in the bed our daughter died in.  Who is it for?  How old are they turning?  What types of feelings does the party bring up?  Jealousy? Anger? Sadness? Bitterness? Joy? Hope? Celebration?  We bat words back and forth like a tennis ball until we come to a decision about it.  We always have good intentions, but sometimes we just can’t take the final steps out the door and go to the party we had RSVPd for.

A dash to the supermarket for milk becomes an exercise in grief as I hurry past the inviting piles of green avocados that Stella used to shop with me for.  A trip to the attic to bring down an extra blanket fills my heart with heaviness as I see the line of boxes in the corner neatly labeled “Stella’s Room”, “Stella’s Memory Box”, “Stella’s Funeral”.  A walk to the library past giggling 5-year old girls in pink jackets and jaunty winter hats makes my chest burn.  You go on living your life, even loving your life, but the grief is always there, just beneath the surface, ready to burst through at any moment with its heavy, hot lava of pain.

Even happy moments have a twist of sadness to them.  Aimee had always fantasized about Stella joining soccer, but she never got the chance.  She was supposed to join up in the fall, but was diagnosed at the beginning of summer and by fall she couldn’t walk anymore.  So, this time, as soon as Sam and Hugo were old enough, we signed them up.  Even though it’s expensive and they are really still babies, we have waited a long time to see one of our kids in a soccer shirt so we love taking them.  You should see Sam and Hugo and Xavier all running around a gym in these tiny soccer uniforms… it’s just about the cutest thing ever!  No matter that most of the time it’s like herding cats trying to get them to do anything they’re supposed to, it is a joy to watch and experience.  But it’s sad too, of course, because we are all thinking about Stella and how she should have been there too.

After soccer yesterday, Aimee and I took the boys home and Gracie was with us as well while Auntie Angie volunteered with Baby Stephanie (she is going to write an update about baby Stephanie for you all soon!!!).  The three kids literally destroyed our house playing in it.  I’m surprised no one broke a bone they were so energized and excited.  They adore each other, and it’s fun to see them playing together even though my throat is in my heart most of the time as they leap from high heights and careen screaming through the halls narrowly missing furniture corners as they run by.

After Gracie went home and dinner was over, Aimee took the boys downstairs so I could make a weak attempt to put the house back together after a long weekend of chaos and activity.  I thought rather grumpily about how pointless it is to have nice things when you have young children.  The house we had painted a year ago is already in need of painting again— there are scuff marks and chips and dirt and crayon marks all over the place.  The nicely recovered couch is used daily by the boys as a trampoline.  They throw pillows on the ground and drool and pee and spread crumbs all over it.  Dishes from our matching set have been broken.  The tiny iron angel we got from Aimee’s Nana’s house when she died had its wing broken off on Friday when Sam threw it.  Photographs in frames are knocked over constantly.  We have about 6 broken frames laying around waiting to be repaired.  There are dried cheerios in the sink, piles of laundry that we just can’t seem to get under control and a fridge that could be a science experiment.  There is stuff everywhere.  It’s overwhelming.  It’s not that I need things to be pristine or totally clean and organized, but it’s also disheartening to constantly be putting a million tiny pieces of toys away only to have the bins dumped back out moments later and toys strewn around in every crack and crevice within seconds.  So, I took a deep breath and started to tidy up a bit, just enough so I felt like I had a tiny bit of control over my environment.

After picking up by hand tiny grains of rice from between the floorboards and stacking books on top of more books in the living room, I stood at the sink washing pots.  As the warm soapy water poured over my hands and I sighed thinking about ll the work left to do, I heard Aimee singing loudly in the basement.  I cocked my head slightly to the side to see if I was hearing what I thought I did.  And I smiled.

Aimee was playing guitar for Sam and Hugo.

She used to play guitar for Stella all the time, and so did our friend Brad, but since Stella died there has mostly been silence where the music used to be.  It was too sad to hear her favourite songs and remember her crooked smile and the way she danced with her arms waving and head bobbing.  I put the pot down, wiped my hands on the tea towel and headed downstairs.  As I walked into the basement, I saw Aimee standing in front of the boys with her guitar strumming and making up words to a silly song while they danced.  Sam strummed Stella’s old ukulele and Hugo was going between a maraca and bells, shaking and shimmying.  They both danced comical little dances, rocking their hips back and forth.  I laughed out loud to see how alive and happy my family was.  I grabbed the camera and tried to capture the moment, but it wasn’t really possible.  Photographs are amazing for certain things, but I’m not convinced they can fully capture off-the-cuff moments of silliness and love.  After a couple of shots, I put the camera down and joined my family.  We danced and played music until past the boys bedtime.

The dishes would wait until later.  The laundry would wait until later.  The music was here, and it was making me laugh and making my heart sing.  And Stella’s watchful eyes from the photograph on the wall, twinkled down at us.  I realized that my life is not perfect, and never will be.  But it is mine and I treasure it.

As I picked up Hugo and spun him in a twirl with me, I remembered one of my favourite sayings about how if you did not know true sorrow, you would not recognize true joy.  So while I would never go so far as to say I am grateful for Stella’s death, I am grateful for her life.  And I am lucky to have experienced gut-wrenching, terrible pain and sadness because now, when the music is happening, I can hear it clearly.

Last Night’s Impromptu Dance Party:

IMG_0886Hugo Beckham plays soccer:

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Gracie and Sam playing some odd game they invented that required face masks:

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Hugging brothers:

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Colouring Brothers:

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Winter trip to Jungle Cat World (photos by Kenneth Tinnish):

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vfnP6dVMxBmbSN62W6IYeL1QBvOvYHNvblXVMfwDXGU

7r5N-2JOqMJ75lh8NYD6v9VL1lZ3RwqJNAZjqBjL39o,BbRM3lMiyPCx4KFkn4UGUIukUZXMAM-nXkyBrVGW7MQStella could always, ALWAYS hear the music:

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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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Monday Monday- Can’t Trust That Day

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“Monday, Monday. Can’t Trust That Day”

– Mamas and Papas

 

It’s not that, five months after Stella’s death, I think that I’m “fine”.  Far from it.  But I do believe that I’ve been lulled into a sense of existing recently.  I miss Stella everyday, but Aimee and I are busy and so we continue to live full lives.  She is working, I look after Hugo and get Sam off to daycare, go to school, deal with the laundry and dishes and shopping, etc.  We have dinners with friends, playdates, trips to the library and farm.  Living without Stella hurts, but it’s often a numb type of hurt.  A heartache that just won’t go away, so you learn to live with it.  You learn to not shed your tears around people because it makes them uncomfortable, learn to laugh even though it feels hollow to your ears and learn to look forwards instead of backwards because life is pushing you that way no matter how much you fight it.

 

So we are doing it.  Picking up and moving forward with our lives and our dreams and hopes for the future.  Sometimes I am caught in a moment where my brain begins its repetitive song, “My daughter died.  My beautiful, lively, curly-haired, funny daughter is gone from me forever.   How did this happen?  Where is my Stella?  Whose life am I living?”

 

It’s only been 5 months, but so many weeks and holidays and moments have passed without her already that the sadness just feels normal.  So, last week, when Sam threw up on the weekend and so did Hugo, it didn’t really register as too big of a deal.  Chalking it up to a stomach virus, and waiting with baited breath to see when Aimee and I would be struck down with it, we shrugged it off.

 

Sam recovered quickly, but days later Hugo continued to vomit off and on and then spiked a fever.  After a couple of days of waiting for it to go away on its own, we began talking about if we should take him into the Doctor.  I’m always a lot more reluctant to take kids into the Doctor’s office than Aimee is.  All I can think about is how kids get small and minor ailments all the time that generally go away on their own with a bit of Tylenol, how difficult it is to keep them occupied as you wait for the Doctor, how miserable they and you become as they are poked and prodded.  It’s such a chore.  But Monday night, “Monday, Monday” after several days of Hugo showing no improvement and his chubby cheeks starting to hollow out a bit, I relented and with a huge sigh Aimee and I packed him into the minivan and drove him to a local walk-in clinic.

 

The Doctor who finally saw us had very broken English; so many of the words that he spoke were completely lost on Aimee and I.  But a few of them registered.  My brain heard, “fever”-“too high”-“emergency room”-“if meningitis not a second to lose”-“too high now”-“very sick”.  I swallowed and tried to clarify what he was saying to us.  “Do you mean we should take him to Sick Kids emergency right now?” I asked, my mouth dry.  He looked at me and shrugged, “sure”.  Sure.  Sure????  Didn’t this man know that the last time I took one of my children into Sick Kids Emergency, I was told she was going to die!!!!!!???  Of course he didn’t know.  As the Doctor’s words registered with me, I felt the ice cold blanket of raw fear envelop my body.  I began to tremble and hot tears collected behind my eyelids.  The Doctor looked at me, probably thinking I was a lunatic over-reacting mom, and said “sorry to worry you but he very sick.  Fever too high”.  I nodded, not trusting myself to speak as I was afraid I would scream all the hysterical screams I’ve been swallowing for the last two years.

 

Aimee and I grabbed our baby boy and literally ran out of the Doctor’s office, both of us lost in nightmares of the past.  I was nauseous and dizzy.  I was crying, panic-stricken, frenzied.  I felt so helpless and frustrated.  I just couldn’t understand why we could never do anything for our sick children.  What if something happened to Hugo?  What if he died?  I couldn’t stop my brain from jumping to horrible conclusions.  I cried and blubbered in the van as we raced towards home struck anew with how helpless we are as parents to do anything for our children if they are hurt or sick.

 

In that moment, I knew that I couldn’t go back to Sick Kids.  Couldn’t go back to the same emergency room we had sat in with Stella, watching TV and impatiently waiting for Doctors, worried about getting back to work and expecting them to tell us we just needed to get some antibiotics for her ear infection so we could go home.

 

Aimee was upset too, but because I was in such rough shape she took on the “strong” role.  We always seem to be able to balance out when one of us is feeling sad or overwhelmed.  She offered to go to Sick Kids and called her father to go with them.  I was tortured.  I was so upset and felt so guilty that I couldn’t be there with my sick baby, couldn’t take him to the hospital to get the help he needed.  But I was totally paralyzed with the fear and horror of “what if’s”.  But the guilt of not being able to look after Hugo when he needed me ate me up inside, twisting and tearing my insides, a storm of horror.

 

At home, Aimee quickly packed up a diaper bag and waited for her dad to pick her and Hugo up.  I called my sister and told her the update.  She came right over, and both of us sat together in the bathroom crying.  My dad came running over as well when he got the news, and though he was his usual calm self on the outside, I saw fear in his eyes as well.  We were a mess.  All lost in our own thoughts of Stella and Sick Kids and life and death.

 

Aimee left with her dad and Auntie Angie rushed to Sick Kids to meet them.  We all huddled and worried and waited.  I wandered around the house like a ghost, tortured that I was at home and wanting so badly to be with Hugo and Aimee, but literally paralyzed by my fear.  Sam was running around but I couldn’t even put him to bed because I was so incapable of functioning.  He was eating pizza with my dad and Heather and Daniel and Xavier and I at 10:30 at night.

 

Finally, after taking some of my anti-anxiety medications and getting Sam to bed, I crawled onto the couch and my dad held me as we watched the old black and white Marilyn Monroe film, “Some Like it Hot”.  I was beyond exhausted, but sleep wouldn’t come.  Hugo-Stella-Sam kept tumbling through my head.  I began to wonder why Aimee and I had chosen to have children when we couldn’t keep them safe.  Couldn’t keep them healthy.  I was so defeated.

 

At around 1am Aimee called to tell me that they had determined Hugo had a bladder/UTI infection and with a course of antibiotics he would be fine in a few days.  They were on their way home.  The relief that washed over my body was palpatable as some of the tension snaking through my every muscle released.  Within 15 minutes I was sound asleep, trapped in a dreamless black hole of fear, guilt, sadness and relief.

 

Aimee told me later that being at Sick Kids with Angie and her dad was very triggering and difficult for her.  That every second her mind was reliving being there with Stella.  The gift shop.  The waiting room.  The smells and sounds.  She said it was awful.  She said she didn’t think I would ever be able to go back there.  She doesn’t know if she can ever go back either.  She has been crying more often and reliving it over and over again.

 

Hugo has perked up considerably since Monday, and life has begun to pick up its regular pace again. 

 

But Monday reminded me how scarred I still am— how scarred we all are.  My entire family is so traumatized by what happened to our Stella.  Each of us gets up in the morning and goes to work or school or out with friends and we all make small talk and smile and tell people how grateful we are to have Hugo and Sam.  And it’s not a lie.  We are living genuine lives. But just underneath the surface, not even a millimeter away, are gaping, raw, bleeding scars that crisscross every piece of us and are revealed easily with a simple glance at a butterfly, the light of a birthday candle, the sound of a giggle, or even a baby’s fever.

 

I often tell people not to be fooled by appearances, that despite what they see, we are not okay.  But in this case, I really feel like I fooled myself.  I got so busy with school and the boys and my friends that I pushed the hurt and fear away.  But on Monday it all came rushing back and I remembered anew how tender the wounds of losing Stella still are and how far we have to go. 

 

“On Pain”

 

“Your pain is the breaking of the shell that encloses

your understanding.

 

Even as the stone of the fruit must break, that its

heart may stand in the sun, so must you know pain.

 

And could you keep your heart in wonder at the

daily miracles of your life, your pain would not seem

less wondrous than your joy;

 

And you would accept the seasons of your heart,

even as you have always accepted the seasons that

pass over your fields.

And you would watch with serenity through the

winters of your grief.

 

Much of your pain is self-chosen.

It is the bitter potion by which the physician within

you heals your sick self.

 

Therefore trust the physician, and drink his remedy

in silence and tranquillity:

 

For his hand, though heavy and hard, is guided by

the tender hand of the Unseen,

 

And the cup he brings, though it burn your lips, has

been fashioned of the clay which the Potter has

moistened with His own sacred tears.”

 

– Kahlil Gibran, “The Prophet- On Pain”

Daniel, Xavier and Sam eat pizza at 10:30pm on Monday


Xavier at the park:


Hugo is all better!


Spring picnic with Kari:


Miss you, Stellie:


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A Cage of Metal and Tears

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A Cage of Metal and Tears

 

Stella is nearing the 16-month mark of being diagnosed with DIPG.  She continues to decline physically, but also continues to live, sticking her tongue out everyday to let us know what it is she’s up for.  We’ve been to Riverdale Farm, out for dinner, out for ice cream, to the Farmer’s Market and to Kimbourne Drop-In Centre this month.  If Stella sticks her tongue out, we go.  If she asks for it, she gets it. We sense that we have been given a second chance with Stella since her “near death” in late August, and we are running with it.

 

We have seen changes in the last few weeks with our girl.  Stella is physically a rag doll now.  She is the physical nightmare I imagined months ago when I realized what this tumor was capable of.  She has no independent control of her body left whatsoever…essentially she is a quadripalegic. Some days she can’t even open her mouth to eat.  Her left eye now rolls to the side.  She can’t hold any part of her body up or move anything at all.  It’s hard to help her do and see things.  When we go to the farm, one person has to hold her body up and the other has to hold her head up and try to move it in a way that her eyes (which naturally look down and left), can see the animals.  When she paints, I have to drape her limp body over my lap and then hold her head up with one hand and use the other one to do hand-over-hand with the paintbrush.  It’s physically exhausting, but worth every second of the struggle.  It is almost impossible for her to smile anymore—the effort is too much, but her eyes tell us how she is feeling.  We don’t know how much longer we will be able to have her physically with us, but we’ve decided to plan for the longer term and take each day as it goes.

 

A couple of weeks ago, as part of our longer-term plan, Aimee and I began mulling over the idea of getting a wheelchair for Stella to help her sit more upright.  Our rationale was that with the proper support and ability to sit, she might be able to participate more in activities like dinner at the table, or playing at Kimbourne.  So, last week, we had a salesman come a couple of options for us to test out with Stella.  I think the salespeople try to make the idea of a wheelchair seem less frightening by referring to it as a “special needs stroller”, but when you see her in it, a bunch of padded bars holding up her head and a bib under her chest, it becomes apparent that this is a wheelchair in every sense of the word.

 

I was caught completely off-guard by the way I felt when I first saw her sitting there.  The shock was almost too much for me, and though I feigned excitement and happiness at seeing Stella sitting upright again after nearly a year of having to lay down, inside my heart was breaking into a million sharp little pieces, scarring the inside of my chest.  She looks so…so…so sick in her wheelchair.  So frail.  So helpless.  I hate it.  I hate the metal cage with wheels on it that holds her body in an unnatural position, trapping her in a web of buckles and straps,  a veritable scarlet letter that screams “different” with a capital “D” at the top of its lungs.

 

The truth is, we can’t afford the “Special Needs Stroller”.  It’s $10,000 and although the Ontario Government will give up to 75% to families towards the cost of a wheelchair, Stella doesn’t qualify for the grant from the Government because she is palliative.  That’s right.  If you’re dying, the Government won’t pay for your wheelchair.  Why should they?  The person using it is just going to die anyway, what a waste of money, right?  Hearing that news from the salesman was a slap in the face, but I was also secretly relieved. I don’t want to see her in a wheelchair.  It’s too hard for me.  I will do anything for Stella, even torture myself further by putting her in that damn chair, but if I don’t have to, I’m thankful.

 

Over the last few months, I’ve often gotten frustrated with people who make comments about Stella out in public.  The whispers I’ve heard about how she’s asleep, when she’s not. The questions about, “what’s wrong with her?” The comments and tongue clicking that occurs when people mutter that she’s too big to be in a stroller, and too old to be drinking from a bottle.  For the most part, I try not to let it bother me.  These people are strangers, they mean nothing to me, and I owe them no explanation (although once in a while when I’m feeling particularly irritated I look them in the eye and say with calmness, “actually she has a brain tumor”, in the hopes of making them feel badly about their judgments).  So, before we got it, I was partially excited about the wheelchair because I felt like it would draw a clear picture for people of the fact that Stella is not tired, or lazy, or spoiled, but that she is sick and needs a little extra help.

 

The salesman who came agreed to let Aimee and I trial a wheelchair for a week so we could decide if we liked it or not—though we have no intention of actually buying it.  Aimee understands that I am having trouble with the wheelchair, but she reminded me that if it was the best thing for Stella, we need to give her the opportunity to use it.  So, we agreed to try it out and I loaded it into the back of our minivan chattering excitedly to Stella about her special new chair.

 

I was so upset the first time I took her out in public with it.  We went to a big Fall Festival in a local park where there was face painting, horseback riding, food, music, etc.  I gathered all my courage, placed her into the wheelchair, did up all the straps and tightened the headrest, then began to push Stella around the park, amidst huge groups of children running around, adults standing in groups talking and laughing, and the swirl of autumn leaves raining down on us.

 

Already feeling conspicuous, I soon learned that far from being something that cut down on looks, stares and whispers, the wheelchair invited even more of them.  I felt every eye on me when I pushed her around.  I lost count of the amount of pitying looks I got from other parents as I tried to manouever Stella’s wheelchair around.  I can stand a lot, but not pity.  People who feel sorry for me underestimate how much joy and purpose Stella brings to our lives.

Not quite sure what to do, I decided to take Stella to the craft counter where we could paint pumpkins together.  It was packed with kids and parents painting pumpkins, and I was surprised to notice that other than a whole slew of stares, no one paid any attention to us at all.  As in— no one moved aside to let us near the crafts, or offered to help gather supplies for us.  We were effectively shut out of the craft table.  I ended up having to push Stella away from the main craft table and brought some art supplies over to her.  But she didn’t get to sit at the table with the other kids, and she didn’t get to pick from all the paint colours like the other kids, and she didn’t get the people running the table complimenting her on her pumpkin and offering suggestions and assistance.  Luckily she didn’t notice, but I sure did.  Similarly, over at the face painting table a group of volunteers was busy giving children faces full of beautifully coloured butterflies with sparkles that spread from their cheeks to foreheads, to chins.  I stood in line with Stella but when it was our turn, the volunteer took one look at Stella in her chair and said to me, “I’ll just put a tiny butterfly on her cheek for you” and took a plain green paint stick and did a tiny outline of a butterfly on one cheek.  I felt embarrassed.  I should have gotten angry and stood up for Stella, demanding she get a big, sparkly butterfly like the other kids, but I felt like I’d been punched in the gut and slinked away. I pushed Stella over to the pony rides and we watched the other kids ride ponies.  Then we wandered over to the bouncy castle.  I asked the people at the castle if I could bring Stella in if I held her and just sat in a corner and let the other kids bounce us around.  They said no, it was too dangerous.

 

It was then that I came to the heartbreaking realization that my daughter and her wheelchair were being treated like a disabled person— and disabled people in this community were treated as lesser human beings.

 

How sad and sickening.

 

The more I stared at Stella sitting there in her wheelchair, the more I couldn’t hold back the tears.  As she sat watching the Bluegrass Band, I began to cry.  My dad rubbed my back and I just turned to him with tears running down my cheeks and said simply, “I’m sad”.  He nodded.  He knew.  He understood.  He told me to go for a little walk to regroup, so I did but I didn’t feel any better when I got back.

 

I have tried my hardest to live every part of this journey with as much strength and dignity as I possibly can, but that wheelchair very nearly broke me. The stark contrast of the girl Stella once was to the one she now is, is too much to have staring at me in the face so blatantly day after day.  When Stella is laying in my arms on the couch, or sleeping in her stroller, I can still see my daughter and can find a way to keep going, to keep smiling, to keep helping her live the best life ever day after day.  But for some reason, that wheelchair cuts too deep.  I’ve asked Stella if she likes her new stroller, and she sticks her tongue out yes, but I don’t think it’s made our life any better or more bearable.  In fact, I can’t wait for it to go away. At least Aimee and I agree that she doesn’t look overly comfortable in it.  Maybe sitting upright increases the pressure in her head due to the hydrocephelus. Maybe it puts too much pressure on her tailbone.  Maybe it makes it harder to see us because she faces away.  Or maybe we just can’t tell if it is good for her or not because she has been so tired the last few days.  Personally, I think that the girl who once would never sit still for a moment, hates the restraints that criss cross her body because she knows they act as a barrier to her bursting free.

 

I think wheelchairs are wonderful for many people.  I know that they offer independence and mobility and empowerment.  A few months ago, it probably would have been amazing for her.  But not now.  Not at this point.

 

As we near the end of our journey with Stella, I have decided that she doesn’t belong in a cage of metal and restraints that brings sadness and pain to me, and whispers and separation to her. Stella belongs in a place I can kiss her and whisper “I love you” whenever I want.  Stella deserves to be free.  Instead of a canvas seat strung on two metal bars, I want her to sit on a cushion made of my warm legs. Instead of buckles and belts, I want her to be held in place by my strong arms.  Instead of a seat that forces her to face away from me, I want her to see me looking at her with love and pride.  Instead of a contraption that keeps her further away with its focus on cold, grey distance, I want her close by and surrounded with nothing but love and warmth. From now until forever I want to be her chair. Holding her close, supporting her in everything she needs, and keeping her safe.

 

Stella and her new wheels:


 

Painting at Kimbourne:

Riverdale Farm:

Ice cream trip:


Fall Vision:


 

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The Red Car

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The Red Car

“Dont’ postpone joy until you have learned all of your lessons.  Joy is your lesson.”- Alan Cohen 

Have you ever been driving somewhere and completely out of nowhere, another car cuts you off and speeds away?  If you drive in or around Toronto, I am positive you have experienced something like this.

So, picture yourself on a stretch of road somewhere, and you’re driving happily along, maybe humming along to the radio and admiring the clouds in the sky when all of a sudden a red car screeches up behind you.  You see the driver in your rearview mirror and they are squinting in concentration, looking earnest and leaning over the steering wheel.  Suddenly, the car pulls out behind you and darts in front, cutting you off.  You probably imagine yourself being annoyed or even angry with that driver.  Maybe you curse and swear and put yourself in a bad mood about it.  I’ve been a passenger with several driver’s who would probably shout an obscenity out the window, maybe even try to chase the red car and catch up to the driver just to make sure they SAW the middle finger being waved at them.  You might continue your drive stewing the whole time over that *expletive* driver in the red car, getting grumpier and grumpier about it, convinced that person was a jerk just out to get ahead of your car and be obnoxious about it.  That red car has ruined your mood and your day.

But what if you had additional information about the driver of that car?  What if just before you got cut off, the announcer on the radio told you that there was a red car driving along the same road as you, and that the driver was rushing home because they had just gotten word that their house was on fire.  Or, that there was a red car speeding along because they just found out their son had fallen off his bike and was headed to the hospital.  Or the driver’s spouse had just had a horrible heart attack.  You probably wouldn’t be as upset, would you?  You probably would be worried for that person and perhaps even think as the car sped by you, “Gee, I hope everything is okay”.  And then you wouldn’t be swearing or getting all angry in your car at all.  Instead of reacting with anger, you likely would have reacted with empathy and caring.  This story was told to me at a retreat I went to several years ago.  The point of the story is that we don’t know why the red car cut us off, but human beings tend to assume it’s for no good reason, resulting in a feeling of anger and frustration.  But we don’t really know why certain things sometimes happen, so maybe we would all be happier people if we trained ourselves to believe that the red car was cutting us off for an important reason, rather than assume it’s just to piss us off.

I’ve been thinking about this story a lot lately because I’ve been reading a book recommended to me by Aimee’s sister Andrea (aka Andge/Angie), and her partner Julia (aka Juju) called “Starting from Where You Are” by Pema Chodron, that is about trying to retrain your brain and give up on that ridiculous notion of being in control of anything.  Since Stella was diagnosed, I’ve been reminded again and again and again how little control we truly have, yet I continue to look for it around every corner, hoping against hope it will come back to me.  Control is the greatest illusion that we human beings operate under.  The words “should”, “must” and “expect” give you false security that you have the ability to change things, or the right to expect that because you’ve done “the right” thing, life will be kind to you.  So when Aimee and I were told that our beautiful, perfect, energetic and intelligent daughter was going to die and there was nothing that could be done about it, depression, rage and overwhelming anxiety quickly followed.  It has taken 15 months of growth, fear, pain and despair for me to realize that I have absolutely no choice but to surrender to the path life has put me on.  When the things I ran to for safety and security could no longer help me, I had to surrender to what is, not what I want it to be.  As Pema Chodron writes, “Undertaking the journey to get some ground under our feet, is completely missing the point”. The real work begins when the ground has shifted so drastically that it cannot be counted on at all.

In the last few months, Stella has continued to decline, although it is at a slow pace that, in many ways, allows both she and us to adjust to the new realities.  Our darling daughter has almost no physical abilities left whatsoever.  Her body is like a limp rag doll at all times, she cannot utter any discernable words any longer and her body makes even the most basic tasks (pooing, sneezing, chewing, moving her eyes), onerous for her.  Her left eye has started to flop to the side, yet another sign that the tumor continues to grow and increase the pressure in her brain.  She smiles rarely, but her eyes remain expressive and she uses her tongue to let us know what she needs—which nowadays seems to be physical closeness and comfort.

My life is completely unrecognizable, even from four months ago.  It takes the entire morning just to complete basic things for Stella.  She wakes up and we carry her in our arms to the change table where we gently get her a new diaper and dress her for the day.  We put Vaseline on her cracked lips, add eye drops to her dry eyes (they’re dry because the tumor prevents them from closing all the way, even when she’s sleeping), and use a warm washcloth to wipe the hardened drool from her mouth.  We then give her some of her medications in suppository form and carry her to the couch where we try to arrange cushions and blankets to support her limp frame properly without putting too much pressure on the morphine pump permanently attached to her thigh.  We then make her porridge for breakfast and spend the next hour or so feeding her one tiny mouthful at a time while telling her stories, and rubbing her head with one hand.  She then usually has a bottle and falls asleep on one of our laps for a little while.  When she wakes up, it’s time for another diaper change and perhaps a few books before lunch, which is usually some form of noodles.  Again, lunch is fed to her one small bite at a time.  It sometimes takes an hour or two to feed her, and then we generally try to get out for a short walk, or a sit under the tree so we can get outside.  A long afternoon nap usually follows and then we usually have visitors over who entertain us and bring news from what we refer to as “the outside world”.  The evenings are spent on the couch singing songs, reading books, and sometimes watching videos on the laptop.  Nighttime comes with a long medication routine that includes one oral dose of medication, two suppositories and a bolus of morphine.

Stella’s cancer is my red car.  I acknowledge that it has cut off my plans for where I’m going and how I’m going to get there.  I could react angrily.  I could be grumpy about it, let it ruin every day and get more and more upset, wondering why that car had to swerve into my lane and ruin everything.  I’ve done my fair share of shouting obscenities and trying to gain control back of the road, but it doesn’t change the fact that the red car cut me off.  Being angry and vengeful won’t alter my reality. I can’t change the fact that my child is going to die of an aggressive, rare and horrifying form of cancer.  I can’t erase the memories in my brain of her voice calling “Mama” to me with excitement, or her arms wrapping around me in a big hug, of her smiling and twirling and running.  I can’t control what once was, what will be, or what is.  I can only surrender to it.  Stella lives life from her gut.  Stella lives life from her heart.  Stella lives life from the core of truth. Stella lives life in a place where there is no control, no ground under her feet, just a journey that she long ago surrendered to.  Stella has done all of this intuitively, whereas I have needed to unlearn a lifetime of expectations.

I have decided to believe that the red car containing Stella’s cancer is not out to get me, or ruin everything, but that it is here to teach me a lifetime of lessons about surrender, acceptance and love.  I have decided not to waste the last precious moments of my daughter’s life being angry and bitter about it, instead choosing to believe that yesterday’s shadow is at my back, and tomorrow’s light is shining in the beautiful face of my precious girl and her incredible brothers.

Poppa, me and the kids say goodbye to our old car:

Little Visit to the Playground:

Beautiful Stella:


Beautiful Sam:


 

Beautiful Hugo:

Family!!!


 

 

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