Vic succeeded at life…


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

so sick

Vic in 2007

DSC_0531.JPG

Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

Image (172)

… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

A

…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

Vic’s monuments…

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

 

Vic loving World Cup 2010

……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

 

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

850 days


It is a mere 850 days since Vic died.  2 years and 4 months seems so short… 850 days seems far more representative of the longing.  It seems “longer”….

I woke up this morning with tears pouring down my cheeks.  I so longed to hold my child.  I know that the boys remembered too.  Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!”  The first to “like” his post was his brother.

I imagined that the longing would get better.  It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill.  I always felt guilty at the “reprieves” I had when I was travelling for work.  Now I would give anything and everything for just an extra minute with my child.

It was hard standing next to Vic’s bed hearing her cries of pain.  It was even harder seeing the despair in the eyes of her precious boys when they stood next to their mom’s bed helpless to ease her pain and fears.

So often over the years I wanted to run away.  In the end, when Vic cried from fear of dying, I felt the need to put an end to her suffering well up in me.   I put my hands over my ears and screamed in my head.

Vic and her Dad

“Don’t leave me Daddy!  I am scared!”

How do you answer your child when she cries “I am so scared”?

We have a patient at Hospice who vocalises her fear the way Vic did.  Today I just held her.  How do you still the fear of the unknown in a dying person?  And NO!!!!  It has nothing to do with religion.  Everybody is scared.

From that dreaded moment when a patient is told they are terminally ill an avalanche of shock and fear hits them.  It is called actually “named” – terminal fear.  Vic (and Elizabeth*) fear dying, pain, saying goodbye, loss of control and mostly all-encompassing the fear of the unknown.

Vic’s overwhelming fear was that people would forget her – that she would be replaced….  Vic questioned her life’s worth.  She did not work and in her mind that meant it that she had not achieved anything.  That she would leave no legacy.  No matter how many times we reassured her that she inspired hundreds of people worldwide, the fear never left.  I hope that she now knows how powerful her legacy is!  That hundreds of patients have benefitted from her death wish and, most importantly, that her sons are her true legacy.

I have witnessed that grieving starts the moment of handing down the sentence.  It is a long and hard journey for the dying person, their loved ones and friends.

And, today that Elizabeth’s* fear rests heavy on my heart, I know that we will provide her a safe haven where she can relax into death.  We will hold her hand and guide her family through this dreadful trauma of saying goodbye to a wife, mother, grandmother and friend.

I pray for wisdom and strength to handle the déjà vu of Elizabeth’s* final journey.

 

 

and with my last dying breath I say I love you….


IMG_8501

This morning I came across a beautiful quote and it brought back a flood of memories of how hard Vic fought to live.  Vic was born with a passion for living.  Vic so desperately wanted to live.  She fought for every second of her life.  She battled pain, indignity, 81 abdominal surgeries…She lived with her impending death for years.

Please hear what I am writing – Vic LIVED

It is so difficult to read the journal which she kept meticiously.  She recorded the cruel remarks that cut through her soul.  I feel her pain and I am sure that if I had the pages foresically analysed there would be traces of tears on it.  Vic’s tears….And yet, all the world ever saw was that beautiful smile of hers.

An entry from Vic's journal

An entry from Vic’s journal “OUR STORY”

Chaka 2007

Vic wanted her story told. She wanted people to know what is feels like to be cronically and terminally ill.  She wanted the world to know how she experienced the switch from curative to palliative care.  She wanted the world to know how helpless a sick person is.  How vulnerable they are.  She wanted to make a difference.

061813_1539_Agentledeat1.jpg

It is her one wish I have ignored so far.  As you know I have stopped blogging for almost a year.  I can no longer ignore her wish.  As hard as it is I have to do it.

Reading her journal I was reminded of her passion for life.  How incredibly brave she was.  Now, it is my turn to be brave.  I will write her story.  I will celebrate her life and journey.  I will do my best to articulate Vic’s pain and vulnerability.

I will honour her life and wish.

IMG_8393

And the words that will echo in my ears will be her very last words ever… “I scream your name, but it’s too late…I’m on my way up the pearly stairway to heaven. I slowly open my eyes and with my last dying breath I say I love you.”

070313_1721_Thereispain1.jpg

I hope she hears my whisper “I love you with every fiber of by body, mind and soul my precious Angel Child”

In memory of Vicky by Dennis McHale


Tonight I visited the blog of a brilliant blogger Dennis McHale who writes hauntingly beautiful poetry.  I read through a number of his poems, very aware of the man own personal pain, when I came across this tribute to Vic that Dennis posted on the 2nd of May 2013.  Reading it, I was as touched as I was then…  Thank you Dennis.

I hope that one day I will read happiness in your words.

MAY 2, 2013

In Memory of Vicky

030114_1211_SteppingSto2.jpg

 

This poem is dedicated to my dear friend “tersiaburger”
In memory of her beloved daughter, Vicky.

——————————————————————-

You and I
are touched by one star.

Wherever you are
we stand together in one light
which no depth or height or distance
can ever dim.

Wherever you are
your light shines;
past time and space
past flesh to thought,
I feel your power.

Wherever you go
the day will dawn
and the star will appear;
for you are a child of this light
and it fosters your heavenly dreams.

In this light, I have found ways
to heal, to bind up,
to tear down the feeble structures
of fear of your absence has
carelessly constructed within me.

You and I
are touched by one star.

In its glowing embrace
we find our true selves;
we find our peace.

Today I may stand alone,

missing you with all my heart
be I stand strong.
Through the corridors of our courage
you have helped me to
discover those eternal lines
of love within myself;
my birthright discovered because

Vicky and I are
touched by one star.

http://dlmchale.com/2013/05/02/in-memory-of-vicky/

 

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.

Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

IMG_8516

Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

Image

Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

Image

It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

Image

I hate my life.  I wish I were dead.

I am your child…


It is finally 2014.  I am so grateful that 2013 officially in the past.  I also get to say “My daughter died last year”

2013 was filled with tremendous loss.  Not only did I lose my child, other loved ones but I also lost myself.  2013 was filled with lessons. Painful lessons…

I have learned that grief is a solitary, unique experience. I have the learnt the difference between grief and sadness. I have learnt that grief is never-ending. I have learnt that it takes courage to grieve. I have learnt that the depth of loss depends on the depth of the relationship that has been severed.

In this process of grieving for my child I have lost me…I have become a stranger to myself. Vic and I were always “one”. I am battling to function with half of me gone. I miss the other half of my soul…

Once I was an organised person now I have become totally disorganised. My house and filing is a mess. My time management sucks! I battle to read and complete tasks. I no longer trust my judgement. I have trusted people who have scorned my love and trust. I have become forgetful. I have hidden my jewellery somewhere and for the life of me I cannot remember where. I have hidden the boys Christmas gifts – I cannot remember where. I have missed appointments, mislaid my keys…

I am preoccupied with Vic’s death. Everything that happens, I relate back to Vic’s death. In unguarded moments I relive her final moments, the vision of seeing her being loaded onto a gurney… I hear her final words echo through my mind and body “I love you Mommy…”. I relive her fear of dying, her desperation at saying her final goodbyes…

I have become impatient and intolerant. I am on the defensive. I feel isolated in my grief. I truly feel that only my WordPress friends, who have also lost a child, understands. My real world friends and family do not. How can they? They have never lost a child. They get to hold their children….They can rest their heads on their children’s heads and smell their freshly washed hair, feel their soft skins….


I have lost interest in things that used to fascinate me. I no longer enjoy decoupage, scrapbooking, painting or baking. Life has taken on a different meaning. I have new responsibilities.  Vic entrusted her beloved sons to my care and tasked me with Stepping Stone Hospice.

Because grief is primarily a personal experience it certainly takes its toll on relationships. Partners can try to understand someone else’s grief but they can never experience it or take on the burden themselves.

On the surface it appears society is accepting of this unbearable sadness and people are supportive and open to talking about it. I’ve been surprised by people’s genuine kindness and empathy as much as I’ve been repeatedly shocked & disappointed by their lack of it.

Although friends and family have been supportive, there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person.

The realisation that they can’t fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven’t lost their child so why should they spend all their time sad about yours?

I cannot expect anyone, who did not truly witness and live the horror of seeing my beautiful child die, to understand my grief.

What frustrates and angers me most is that people, in the misguided perception that they are guiding or comforting me, insist on how I must be feeling! Who gives anyone the right to decide whether my emotions are “right” or “appropriate”. Please don’t give me advice. Don’t pretend to understand and keep your criticism to yourself. Please just be there if I invite you into my private space.

I am so tired. I am tired of living without my child, tired of trying to justify my grief, minding my words…I am tired of being hurt. I am tired of the hurt.

This morning I read the Facebook status of a brave young woman who lost her two precious daughters last year… “God has added one more day to my life. Not because I need the day but because someone else needs me. So I will get out of bed…..”

So, on the third day of 2014, I was inspired to make a decision. I will fight back against this terrible grief that is threatening to destroy me. I cannot bring back my child. I cannot make people understand, love or accept me. I will try to take back my life this year. I will start writing Vic’s book. I will focus on those who care for me; I will disregard my detractors… I will change my eating habits, exercise and sleep in a bed. I will lose my vulnerability. I will honour Vic through my life.

On the 18th of January the boys and I will do something special to celebrate their Mom’s life. Our lives will become about celebrating Vic’s life – not her death.

My brave child’s words to her boys are ringing through my head – “I am your mother not your excuse”.

I hear Vic’s voice loud and clear “I am your child – not your excuse”.

I hear you precious child. I promise to continuously remind the boys too… I miss you so much. I will honour you through my life.