Dear politicians


About 1 in 12 people (nearly 3 million Canadians) have a rare disease. These Canadians range from young and old, men and women, adults and children. They face many challenges such as being misdiagn…

Source: Dear politicians

1423 days


I have survived 1423 days (3 years, 10 months, 23 days) without my beloved child.  

It has become easier.  I am used to the pain.  I am at peace with the fact that my child’s suffering is over.  I honor her memory every day of my life.  Every day, when I walk through the In-Patient-Unit of Stepping Stone Hospice I thank her for her selfless request that “no-one should suffer the way she did”.

Families talk to me about my brave little warrior and thank me.  Thank me?  I don’t think so.  I would never have had the guts to start a Hospice.  I would still be lying in my bed grieving.

Life has been hard without Vic.  It was so difficult getting my life back on track after she died.  I have missed her wisdom and guidance with the boys,  I have resented the fact that I have become a backup mother to my precious grandsons.  I wanted to be a mother and a grandmother.  I hated being a bereaved mother.  I still do.

Our lives have settled.  Until May this year.

On the 31st of May, I received a phone call from Jared (eldest grandson) to tell me his father had died.  I was filled with terror, heartache, and fear.  My go-to person was no longer around to advise me and run interference with the boys.

I was in England at the time of Colin’s death.  I flew back the same afternoon.  All I can remember of the flight was how my face ached from crying. I was heartbroken leaving my little UK granddaughters behind.  They sobbed.  I sobbed.  We all sobbed.  I dreaded arriving in South Africa and facing the boys’ heartache.  I was consumed with guilt that I wasn’t with them on that horrible day.

I arrived in South Africa to meet two dazed young men.  I had to go and identify Colin at the mortuary and once again arrange the funeral of a child.

On the surface, the boys were brave and yet so devastated.  I was heartbroken.  At a certain level, Colin’s funeral was more difficult than Vic’s.  Colin was young and healthy.  He had truly connected with the boys and they loved spending time with him and his new family to be.  They loved being part of a family.  Vic had been ill for so many years and her suffering inhuman.  I was relieved that her suffering was over.

But Colin was so young and alive.  He had so much to live for.  So much to give.  He was at peace with his life and in love with a wonderful woman.

The day Colin’s clothes were brought into Stepping Stone Hospice, as a donation, I had a total meltdown.  It was the second time a child of mine’s clothes were donated to Hospice.

Yet, time passed and I am once again getting used to the pain.  That horrible empty feeling in your heart when you suffer a great loss…

I read many blogs and I often wondered why people remained stuck in their grief.  I wondered why they were unable to move forward…

Vic’s eldest son started displaying signs of PTS (Post-traumatic stress).  He suffers from panic attacks  and stopped wanting to be home.  He was angry with the world and especially me.

There are many reasons for this and it is not for me to write about his reasons.

What I am able to write about is the fact that Jared was trying so hard to protect his little brother and I from the pain and trauma of Vic’s death that he never dealt with it for himself.  He spread his angel wings over us and never stopped looking to see whether we are okay or not.

Now this beautiful, “parentified” young man is caught up in a cycle of trying to deal with the layers of grief resulting from his parents’ deaths.  He is working so hard to learn how to deal with his complicated/compound grief.  He is brave and beautiful.  He is in so much pain.

But, I know that in time he will heal.  He is no longer avoiding his grief.  He is dealing with the cancer in his heart eating away at the very grain of his soul.

I pray that I will have the wisdom to guide him through this difficult time in his life as he guided his brother and me through the first years after Vic’s passing.  I pray that he will always remember my love for him.  I pray that I will learn to cope with my guilt of not protecting him from something that I was aware of…

I now know why people remain locked into that cycle of grief.

https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Ellora’s Story


Hope In Understanding

I started experimenting with opiates when I was a teenager and as I grew to rely on the emotional relief I  got from them I formed a bond with this chemical.  Before long it was costing me too much money so I switched to heroin.  After almost five year into this downward cycle I was desperate to get off.  I even tried to use suboxone and booze to stay away from the heroin but I was relapsing once a week.  I didn’t have the mental capacity to reach out for help as I would today.  I didn’t really know what I needed to know so I was ready to kill myself.  I was victimizing myself plus I had a lot of self pity which put me into a sick place Over years of use I had developed a better relationship with heroin than I had with myself. Without heroin I…

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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…”

so sick

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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Fracture 39, 40 and 41…


Vic's Final Journey

Vic with her right leg in plaster-of-paris 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

Vic's Final Journey

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

Hi, I’m Sierra, and I’m going to explain to you what life is like living with a rare disease called osteogenesis imperfecta, more commonly known as brittle bone disease.

Osteogenesis imperfecta (OI) or Brittle Bone Disease is a complicated, variable and rare disorder. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI.

Medical characteristics & issues related with OI include:

  • Fractures
  • Bone deformity, and bone pain
  • Short stature.
  • Spine curves.
  • Low Bone Density.
  • Loose joints, ligament laxity and muscle weakness are common.
  • Distinctive features of the skull including late closing fontanels, and head circumference greater than average.
  • Hearing loss may begin in the early 20s and by middle age is present in more than 50% of people with OI.
  • Brittle teeth (called dentinogenesis imperfecta or DI) are seen in 50% of people who have OI
  • Respiratory problems including asthma; may be aggravated by chest wall…

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