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It was a hot summer day when I got the call
Standing in your hospital room we anxiously awaited your results
When the doctor came in his face was drawn
Reading his face already had my heart breaking
He said you had a tumour spread out like a butterfly in the centre of your brain
It was already stage four and had likely been there for longer than we could’ve known.
You’re bright blue eyes were so alert, watching us break down but not compute ending a thing.
And you asked if you could go home, and told us everything was okay.
You might’ve had a year, you might’ve had five.
The prognosis was never clear.
This form of cancer was so rare we couldn’t know what the future held
January 14th 2017 ripped the earth out from under our feet and left us falling into the unknown for months and then years to come
They never thought you’d live the years you were given
Those years were both a blessing and a curse
Every year we thought, will this be his last Easter?
Will this be his last birthday?
Will this be his last Father’s Day?
And will this be his last Christmas?
The waiting and never knowing was agonising
We were living in a limbo that never seemed to end
At the start we made the most of seeing you as best we could.
We made the most of trying to ensure you got to do the things you’d always wanted.
But time kept passing and we couldn’t keep stalling our lives
We all had to get on, keep doing the things we were and try and return to normalcy
It was so hard leaving you, not knowing when circumstances would change
As each day went by the butterfly ate at you more
You became someone I hardly recognised, but still held dearly in my heart
The end of 2021 saw you grow frail and quiet
The butterfly gnawing on your memory, thoughts and dreams
You’d always recovered from your falls and accidents, you always pulled through
Until the day I got the call that this time you wouldn’t be able to
You were in the ER and I came to you, sitting with you for hours
You’d fallen and had a heart attack, your skin ravaged across your arms and legs
You were in hospital for months, and I visited you every week
You would look out your window every day, wanting to go outside
When we talked you spoke of home, but didn’t know here home was
You couldn’t recognise names, places or photos
Every now and the. You asked where I was, even though I was by your side
Every time I saw you, you asked me to take you home
You asked me not to leave, but I always had to go
You’d cry when I hugged you, and told you I loved you
You always asked when I would be back, and I always promised tomorrow
Hoping time would pass and you wouldn’t feel alone
We were only allowed up once a week, but nurses called me to come more
They told me you would cry for me, and wouldn’t settle until I was there
Every time I saw you, you had your bags packed ready to go
You would rifle through my handbag and muck around with my keys
Asked where I’d parked and ask me to point out the window
You watched the people below and said how they were free to go anywhere
And you’d look at me with sad eyes and ask when we’re leaving
Boxing Day was the last time I saw you awake and alert
You were no longer the father I grew up with
You rarely laughed, you rarely smiled
More than anything I remember your tearful eyes
January saw you moved to a hospital closer to home
And not once was I allowed to visit you there
They treated you so poorly, refusing to shower and care for you
They gave you scant meals and blocked your access to bathrooms
They placed you in a bed under a power board so cords were hung above your head
You were stripped of dignity by cruel nurses who’ve forgotten compassion
We moved you into aged care, at the age of 65
And by this point you were declining so fast I was afraid to see you
I wasted my time worrying about how hard it would be, that I failed to be there for you
In my head I still believed you’d recover and somehow pull through
I believed we would have more time, you’d always been so stubborn
Five years you suffered, yet I wasn’t ready to let go
By the time I gathered the courage to see you again, I felt it was too late
You slept throughout the whole visit that Monday, sedated to manage your pain
You held the small fluffy monkey in your grasp, even in your sleep
Feeling helpless I tucked you in your sheets, and held your hand
I thought I’d be able to come again next week, hoping you’d be awake
Until a call came in late Friday night telling us to come
We got there, and you’d started to rattle
Your breathing was heavy and wet, your skin pale
Your hands were cool to touch, your feet were turning blue
You’re chest was heaving with every effort and your eyes started to weep
We sat by your side for hours, too terrified to leave
Every stall in your breath was agonising
Every tear that slipped down your face we felt
The cooler your hands got the more terrified I became
They always say a death rattle is confronting, but until you live it you can’t imagine
I thought if I looked away from you for even a second you’d be gone
I wouldn’t have been there for you when you needed it most
The staff said often people hold on until their loved ones leave
And so we left in the morning, hoping not to prolong your pain
And barely a few hours later they called, and you were gone
Missing your passing hurt
If only I’d seen you sooner
If only I’d visited you more
If only I gave you more time over the years
If only I could’ve done anything to ease your pain and suffering
If only I’d been there to hold your hand as you passed
I think of all the things you’ll never get to see, never get to hear
You’ll never see my marriage
You’ll never grow old and retire
You’ll never get to have grandkids to look after on weekends
We’ll never go to bookstores together again like we did when I was a kid
We’ll never go camping on the beach with the boat and fish at night
We’ll never watch movies together or play cards
I miss you every day, and I see you in all the small things I never thought twice about
I can’t look at minties and gingernuts without thinking of you at the grocery store
I can’t drive your ute without seeing you there with me beside me
I can’t look at your chair by the back door without picturing you sitting in the sun
I’m grateful your suffering is at an end and you’re free from the burden of illness
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