Vic’s legacy – her story


I have not posted in a long time.  I keep thinking up posts but I never seem to have writing time.  I do dream of having time to write my book.  No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered.  The book must portray the immeasurable value of her legacy.  It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.

On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice.  I was given 20 minutes but I think I took much longer.  I wanted people to meet Vicky.  The “healthy”, carefree child/woman with a heart full of hope.  I wanted people to see how during the last 10 years of her life she was stripped of so much.

And, when she realized that there was no more hope to feed on…

I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain.  The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.

It felt almost “clinical”.

How do I begin to share the horror of my child’s journey?  My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…

For so many years I did not sleep because I was scared I would not hear her.  Physically and mentally I was exhausted.  Now…I do sleep but my soul is tired.

I must capture the heartlessness of the medical profession; the lack of counseling;  the importance of hope…  I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.

But most importantly I must fight to keep Vic’s legacy alive.  I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”

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5 years, 3 months and 3 days


Five years, 3 months and three days ago I lay next to you listening to your labored breathing.  You lay motionless in your bed.  Your hands and feet were ice-cold.  Your body was burning up with fever.  Daddy and I counting the seconds between your breaths.  My hand on your little heart and my head next to yours.

I remember whispering how much I love you; that there was nothing to be scared of…I felt your heart beat getting weaker and weaker; your breathing becoming more shallow by the minute.

When your little heart stopped beating my heart broke into a million pieces.  As your soul soared mine plummeted into a hellhole of grief and despair.

I knew that it would be hard but nothing in the world could have prepared me for the pain that followed.  My heart aches for you and I would give anything to hold you one more time.  To hear that mischievous giggle…

Never again will I hear that sacred word “Mommy” …

We miss you so much.  Our family will never be the same again.

“Don’t leave me Daddy”

 

“To plant a garden is to believe in tomorrow”


“Who wants to die? Everything struggles to live. Look at that tree growing up there out of that grating. It gets no sun, and water only when it rains. It’s growing out of sour earth. And it’s strong because its hard struggle to live is making it strong. My children will be strong that way.” ― Betty SmithA Tree Grows in Brooklyn

I spent the weekend packing up Vic’s flat and working in the garden.  I bought new herbs for my herb garden.   I changed the outlay (or started) of the back garden.

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This year may be easy or it may be a struggle.  I know that there will be days of profound sadness but I also know that my sadness will be put to good use.  I believe that, by putting my grief to work, I will find a way to get through my sad day.

In the words of Robert Frost – “In three words I can describe everything I’ve learnt about life.  It goes on.  Despite our fears and worries, life continues”

My “profound sad days” will remind me why there is a Stepping Stone Hospice and why I do, what I do, at Stepping Stone Hospice.

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I do believe in tomorrow.

I do believe that this will be a year of healing.

I do believe that it will be a year of recovery – at every level.

 

Stuff


Today I started packing up Vic’s “things” …Tupperware, crockery, cutlery, whatnots… the stuff

I drank coffee from her favorite mug. I tried to crate the “stuff” into equal portions. I came across the boys’ plates, their little mugs, their christening gifts.  Vic did not have a lot of material things.  Eight dinner plates, eight side plates, and 8 dessert plates… unmatched glasses and hundreds of tokens of love.  She was so rich in love, memories, and stuff.  A suitcase full of notes from friends, literally hundreds of cards and thousands of photographs.

I sometimes think Vic thought she could take her stuff with her to heaven.

I pulled out a plastic container from the bottom of the pantry cupboard. I opened it. Someone had taken all the “stuff” off her bedside tables and the headboard the day she died and put it into a plastic crate.

“Someone” – Thank you!!! I cannot imagine that I would have had the strength to do it at the time.

The stuff in the plastic container that I found today brought me much comfort. Five years ago it may have unleashed more anger and bitterness in my heart.

Vic was at peace with her God. She sought guidance, strength, and comfort from Him. She did not ask for a cure anymore. She asked for strength…Not forgiveness but strength and guidance. Why not forgiveness – Vic had made peace with her God a long time before she died. She asked once and then it was in the past – forgiven.

She was childlike in her faith. She did not continuously ask for the same thing. She asked once and then believed that if God wanted her to have it, He would give it to her without her nagging. I remember once thinking that she is so accepting of her lousy life. She lived a life of “attitude of gratitude”.

What an example you were to the world and especially me. I strive for your serenity.  I am your biggest fan.

Love you Baby Girl

 

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5 years …


Five incredibly long years ago I finally had to let you go.  I fought so hard for you.  Just another year…another month…another week…another day…  And then it was over.

You stopped breathing.

It was simply over.

The reason for my existence was gone.  There was nothing to do.  I washed you and dressed you and waited for the undertakers to fetch you.

They came and went.  My heart broke all over again watching you leave home the very last time.

I made your made bed and had your room cleaned.  And then I waited for the boys to arrive…

Oh dear God, the pain in their eyes…  I don’t ever want to see it again.

I arranged your funeral.  I did your eulogy.  I cried myself to sleep and cried myself awake.  I packed up your cupboards.  I carried on with Hospice.  I learnt to breathe without you.

Today it is 5 years.  Where has time gone?  I thought my heart would be healed by now but the pain is as much as 5 years ago.  It is not so harsh.  Pain has become a familiar companion.  It goes to bed with me and wakes up with me.

I am filled with self-doubt all the time.  Am I making a mess of the boys lives?  Am I making the right decisions?

I constantly battle my emotions.  I wake up with my hair drenched in tears.  I fall asleep praying for the boys and those of us left behind.  I spend my days smiling.

Oh sweetheart I would give anything to change places with you.  I wish you could be with your boys.  They miss you so much.  I can never be a mother to them.

Some days this is too hard.

Stepping Stone Hospice & Care Services E-Hospice Interview