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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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…”

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Vic in 2007

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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”

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… 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.

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…..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

 

Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube


This video touched me so deeply at every level.

I was petrified of holding Vic as a baby.  I was even more petrified of anyone else holding my baby.   I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks.  She sucked her little thumb and fractured it…  By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful.  Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married.  When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean…  Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life.  She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up.  Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless.  I could do nothing for my child.  I had been relegated from being “the Mother” to being “the mother-in-law”.  My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

 

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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.

 

 

Two years today


Our last coffee shop outing...
Our last coffee shop outing…

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My precious Angel Child

Two years ago I lay next to you listening to your laboured 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 hell hole 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…

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

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Unimaginable pain


When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces.  But, the pain is no longer that same raw pain.  Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain.  At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”.  It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding.  And yet, there any many things I can no longer remember.  I read today that it is my body is protecting me… I am grateful for it.  I am glad that I have forgotten some of the horror of Vic’s death.  I am clinging to the good days.

I went away with two friends last weekend.  It was amazing.  We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another.  The empathy stemmed from knowledge.

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On our first night in the mountains I dreamt of maggots.  There were maggots everywhere.  I tried to kill them, but they kept crawling out of everywhere.  I was scared and nauseous.  I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death.  I fear dying in pain and indignity.  I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice.  My loved ones must kiss me goodbye and leave.  I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life.  So much has changed in the past 516 days.  I have lost more than my child.  I have lost being a mother.  I lost my best friend.  We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight.  I have lost others that I love because our pain collided.

Yet I am alive.  My life goes on despite the terrible void that Vic’s death left.  The boys are so amazing.  Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief.  The firsts never end.  Every morning the pain starts all over again.  The grieving never ends.

At a funeral I attended today the minister said “Grieve hard”.

I do.

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If tomorrow starts without me


This played just before Vic’s memorial service started. A deadly silence descended in the church as we all sat crying for this precious child of mine. I listen to this often. I still cry when I hear the words that Vic could have spoken. How I miss my precious child.

If tomorrow starts without me,
And I’m not there to see,
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things, we didn’t get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you’ll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I’d have to leave behind;
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I’d always thought,
I didn’t want to die.
I had so much to live for, So much left yet to do,
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I’d say good-bye and kiss you
And maybe see you smile.
But then I fully realized,
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things,
I might miss come tomorrow,
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven’s gates,
I felt so much at home.
When God looked down and smiled at me,
From His great golden throne,
He said, “This is eternity, And all I’ve promised you.”
Today your life on earth is past,
But here life starts anew.
I promise no tomorrow, But today will always last,
And since each day’s the same way,
There’s no longing for the past.
You have been so faithful, So trusting and so true.
Though there were times you did some things,
You knew you shouldn’t do.
But you have been forgiven, And now at last you’re free.
So won’t you come and take my hand, And share my life with me?
So when tomorrow starts without me, Don’t think we’re far apart,
For every time you think of me, I’m right here, in your heart.

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