Today was a great day! Yesterday Hospice increased Vic’s pain medication by 25…
Category: A Mother’s Grief
Ellora’s Story
The stages of grief (a few more than five)
I don’t believe in those five stages of grief. There are plenty of other theories around. This isn’t one of them.
The stages of grief (a few more than five)
I don’t believe in those five stages of grief. There are plenty of other theories around. This isn’t one of them.
Happy Mother’s Day
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…
Source: Vic succeeded at life…
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…”
Vic in 2007
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”
… 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.
…..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://www.anaesthesiauk.com/documents/ards.pdf
http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806
I saw your teardrops fall
I saw your tear drops fall I heard you cry my name Mommy I love you …
Source: I saw your teardrops fall
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.
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.
Baby Jared stayed with us for a couple of week whilst Vic recovered.
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…”
Fracture 39, 40 and 41…
Vic with her right leg in plaster-of-paris
Two weeks after our arrival in Johannesburg we celebrated Vic’s 3rd birthday. Tienie drove my car up and was able to be with us for Vic’s birthday. By her birthday Vic had 38 fractures.
The day of Vic’s birthday Tienie and I went for a drive looking for an ice-cream parlour as a birthday treat for her. Vic was sitting on the backseat. Cars did not have safety belts in 1977… a dog ran across the road, and Tienie swerved out to avoid running it over….. Vic fell off the back seat.
I immediately knew her little arm was broken.
We drove to the nearest hospital. It was Vic’s first visit to an Emergency Room in Johannesburg. There was a long queue of patients waiting to be seen. I completed the paperwork and we sat down for the long wait.
Vic being…
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Easter
2016 we not have an Easter Egg Hunt
Soon it will be Easter.
Easter was one of Vic’s favourite times of the year. She loved the Easter Egg Hunt ever since she was a toddler… Traditionally we always celebrate Easter Bunny Day on the Monday and not Easter Sunday. (I did not want the Easter Bunny Hunt to be confused with the true meaning of Easter.)
As a toddler the EEH build-up started on the Sunday evening. If she went to bed early (and without a protest) the Easter bunny would come and visit the next day…. Monday morning she would wake up early and ask us whether the Bunny has arrived…We would tell her she has to have breakfast first… then we told her to keep an eye out for the Easter Bunny…. Our friends would arrive with their little ones who, for once, would be as good as gold. The Daddy’s would walk Vic and the…
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My Story
It is World Awareness Day for Rare Diseases. Vic had Osteogenesis Imperfecta. A very rare and horrible disease. I salute you precious Vic for the incredibly brave battle you fought. I honour your journey.
Always in my heart.
Mommy
Setting Vic free 14.1.2013
Dear God remembering is so hard! I miss my baby girl so much. Will it ever get easier? Will the pain go away?
I had stopped all visits. It was family time. Our little family united in the trauma of our loved one’s dying.
The boys were back at school on the 9th of January. On Monday, the 14th of January, it was Jon-Daniel’s academic awards evening. Vic had so desperately wanted to attend. The Sunday evening she begged me to please promise her that she would attend. I promised her, knowing that it was a death-bed promise I would not be able to honour.
Sunday night, the 13th of January 2013, Vic gently slipped into a semi-coma. She was no longer conscious of what was happening to her and around her. She was only able to respond by blinking her eyes…
Monday morning Vic woke up….She was alert and asked to go to the toilet. She was unable to stand on her own and Primrose and I half-carried her… Her…
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Valley of Death
As the days tick on I relive Vic’s final two weeks of life I remember the agony of seeing my beautiful child lose her grip on life.
I miss her so much. I will never forget.
January 2013. Today was a special day.
Boys lying with Vic before Chris’ arrival
Yesterday Vic asked me to contact her minister. Chris arrived at our home at 9.30am. We all sat in Vic’s room whilst Chris read Psalm 23 and prayed for Vic who was walking through the “valley of death.” She prayed for Vic to find peace and acceptance of her situation.
Chris then served Holy Communion. Vic, at first, did not want Jon-Daniel to partake in the Communion. Chris explained that a child having to be confirmed before they are allowed to partake in Communion is a man-made rule. I pointed out to Vic that it would be very special if Jon-Daniel could have his first Communion with her… Vic agreed.
It was so special.
I was filled with deep gratitude that we as a family have the opportunity of making memories every…
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2015 in review
The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 8,200 times in 2015. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.