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.

 

 

Rest in Peace Angel Child


Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.

“Rays of hope” I thought.

I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…

Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.

This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.  Alberton-20120114-00781  Image (178)

55

So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…

I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.

I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.

Rest in Peace my Angel Child. You are ALWAYS     in my heart.

120313_0514_MotherhoodD3.jpg  Image (205)Image (177) Image (209)

“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.

Godliness of a mother


“The woman who creates and sustains a home and under whose hands children grow up to be strong pure men and women, is a creator second only to God”   Helen Marta Fiske Hunt Jackson

DSC_0037

 

Vic raised two magnificent young men.  They have beautiful manners, they are respectful to their elders and especially women.  They are gentle, compassionate and like their mom they speak badly of no one.  They have a wonderful set of values and morals.

057

Vic had so little time to raise her boys.  She spent most of their lives in a hospital bed or in bed at home.  The boys grew up doing their homework in her room, helping her cook… Jared was four years old when he made his (and his brothers) bed.  “Because Mommy’s back is sore”…

10

The boys are old souls.  They have witnessed so much pain and suffering… They have lived with, and cared for, a dying mother.

There was almost a Godliness to the way Vic raised her boys.  Vic taught the boys to love their Lord.  It shows in their pure hearts.  Her legacy lives on through and in her boys.

I am so proud of you my Angle Child.  You did good!