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

 

Time to say goodbye


Time to say Goodbye is a beautiful song and I especially enjoy the André Bochelli and Sarah Brightman version. It was the boys and my theme song on this holiday. A Time to Say Goodbye and heal….

As we toured Europe we lived Vic’s dream. It was her dream to go to Italy, stand in the Cistern Chapel, drink cuppachino’s on the streets of Rome, wander through the Christmas Mart stalls savouring the smell of Gluhwein and melted cheese….

I am filled with profound sadness every time I think of my child. Even if she lived Vic would never have been able to make the trip. The flight would have been too long, the cobblestone streets impossible for her wheelchair, the bus trips too long…

I cried when I saw the Pietà in the Cistern Chapel. This beautiful piece of art in a convoluted way symbolised Vic and my lives…

Both Mary and I were child brides. She was much younger than I was when she gave birth to Jesus – it is written that Mary was 12 years old at the time of her Son’s birth. Her child filled with wisdom and teaching as was mine… I once again realised, on this trip, how infinitely wise Vic was. She knew that I would have to remove myself from everyday life to heal.

She made me promise to do this trip with the boys.

Looking at the Pietà I saw a mother holding the body of her lifeless child. Tears filled my soul when I remembered holding the body of my lifeless child. For a fleeting moment I felt the heat that radiated from her fever wracked little body. I could hear the thundering silence from her breathing that had stopped…

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I saw the lonely sadness of a mother isolated from the world in her grief. I recognised that isolation that I experienced at the second of Vicky’s death.

I stood there and realised that it will never change. I will always be isolated in my grief and longing for the child that I lived for. No one in the world could possibly love her the way I did. She was blood of my blood.

She loved her boys the way I loved her. She loved her boys with every fibre in her body. Her thoughts, fears and sorrow centred on her sons until she breathed her last breath. The blood of her blood. Her future…

Standing in front of the Pietà I realised that the closest bond is the bond between a mother and a child. Not a child and a mother…. Children move on and live for their children

Walking the streets of Europe I was filled with an all-consuming anger. Anger at God, anger at careless doctors; angry at a horrific disease called Osteogenesis Imperfecta. I was angry at the fact that my child was robbed. Robbed of a life with her boys. That I was robbed of a lifetime with my child.

As the old Year is edging towards the New I am filled with trepidation and horrific sadness. Not only for my Vic but for the many who crossed my path this year and who are enfolded in their own grief.

So much pain, longing and sadness as we look to starting another year without our loved ones.

I have survived my birthday, Christmas Eve, Christmas Day and Jared’s birthday. I have cried on my own, in the shower, in shops. I have been filled with rage and despair when I saw all the Christmas cards “For my Daughter”… I will never buy another card for my precious child. I will never be able to open gifts with her under the Christmas tree. Nothing will ever be the same again.

In three weeks’ time it will be Vic’s 2 year anniversary. Two long years without my child, my best friend…

I read that it gets worse as time goes by. It does get worse. The raw sadness has dissolved into a steady all-consuming pain. The longing to hold her one more time overwhelming.

And, although I know that it is Time to Say Goodbye I know I will never move on.

One year today


My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing.  If feels as if it has been a lifetime since I held you in my arms.  It feels as if I have cried an ocean of tears.

In the past year I have aged.  I have gained weight. I have existed. A year ago my life ended.  The boys and I still burn candles for you.

I am still filled with rage.  I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity.  I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you.  I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons.  Thank you for remaining my little girl through-out your life.  Thank you for fighting for so long.  You were such a warrior!

I thank God that you came home to die.  I thank God that I had the privilege of caring for you.  I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting.  As much as I miss your laugh I do not miss your pain filled tears.  I am grateful precious baby that your suffering is over.

I miss your company.  I miss our late night chats, drinking untold cups of tea/coffee.  I miss your text messages, your telephone calls, your shuffling footsteps down the passage…  the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter.  I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives.  Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

look and don't touch_edited vicbaby Vic 5 years old100_7453 (2)Image (184) Image (191) Image (193) Image (214) Image (220)

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…

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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.

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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.

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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…”

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I hate my life.  I wish I were dead.

We need a miracle again….


 

 

 

 

I posted this a year ago.  We never did get the miracle we needed.Image (195)

Vic's Final Journey

Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they…

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