Author: tersiaburger

I am a sixty plenty wife, mother, sister, grandmother and friend. I started blogging as a coping mechanism during my beautiful daughter's final journey. Vic was desperately ill for 10 years after a botched back operation. Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child. https://tersiaburger.wordpress.com

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

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Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

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 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

 Image

Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

Image

 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…

Guide on how to handle the terminally ill patient 21.6.2012


Guide on how to handle the terminally ill patient 21.6.2012.

Guide on how to handle the terminally ill patient 21.6.2012


Today I researched a guide how to handle a terminally ill patient.  The advise is as follows:

  1. Listen, to the patient. 
  2. Respect their position in the family. 
  3. Share responsibility. 
  4. Encourage them to talk. 

1.            Listen, to the patient. 
Tick.  I like to believe that we do this.  We listen to Vic’s fears, concerns and wishes.  Vic does not talk a lot anymore.  Her basic conversation is about how she is feeling, her pain levels and tiredness…she has discussed her last wishes, her wishes for the boys.  There is nothing unsaid.  All her paperwork is in place. 

2.            Respect their position in the family. 
“If the dying loved one is a parent, then it is important to allow them to continue to live with dignity in their final days. Care for them, but don’t treat them like a child. They will be much more content knowing that they maintained the role of the parent until the very end.” 

When she first moved home we really did respect her role but we are now at the stage that Vic is no longer capable of being the parent.  We try and consult her on everything but it is difficult because she is either sleeping or out of it with pain.  Quite frankly I think Vic is relieved that the boys are settled in and that we have assumed responsibility for them.  It has also provided security for the boys.  I actually disagree with this point of the “Industry Guide on Dying”

3.            Share responsibility. 
“A better strategy is to share and delegate care responsibilities with siblings or other family members. Sometimes only one family member takes the entire responsibility and it adds to stress or depression. Sharing the responsibility will help to reduce the burden on one person and patient also get the opportunity to talk with other members as well.”

Oops GUILTY!!  “EPIC FAIL” as the boys would say.  Vic is my baby girl.  I do not want to delegate the responsibility of caring for Vic to anyone.  Danie is amazing!  He fetches and carries the boys.  He has even driven to the Pain Clinic and sat there for hours waiting to get a morphine script.  The boys help with small things but I try and shield them as much as possible. 

It is not that Esther and Lani do not offer to help.  They ask if they can help all the time.  Rob and Tracy also offer help all the time.  Reuben and Nonthanthle said they would come and stay at home to look after Vic if we wanted to go away for a weekend…Will I ever do it?  No, No, No!!! And it is not because I don’t trust them…I am selfish!  I want to spend every second I can with Vic…

My sister will come stay with Vic while Jared is in hospital.

4.            Encourage them to talk. 
“Giving a terminally ill individual a chance to talk about their life provides two benefits: it takes their mind off of the pain associated with their illness, and helps them find peace and satisfaction with everything they have enjoyed and accomplished throughout their lives.”

We are past this stage. 

5.            Seek professional help. 
“The individual who is caring for a terminally ill relative will likely to be burdened with a great deal of mental stress. They may also show symptoms of anxiety or depression. Family therapy or support group or psychological counselling can help the caretaker to cope up.”

We have sought professional help for the boys.  They are seeing a wonderful lady, Renee, on an informal basis.  There is no way I am going now.  Later maybe.  I have managed to keep my emotions well packaged, together and organized. 

The one thing that is missing from the Guide is that no where does it say “Seek Professional Help for the Terminally Ill person”  I think this is due to the fact that is assumed that at this stage of the journey Hospice is already in place.  Well, maybe in the rest of the world but not in South Africa.  Hospice care is only available for AIDS and Cancer patients and then also for patients with an Advanced Neurologic Disease or Organ Failure.  Osteogenesis Imperfecta does not fall into any of the categories. 

A country is judged on how it cares for it’s citizens.  As much as I love South Africa, our government fails it’s citizens basic constitutional rights as far as medical care goes.  Is there anything I can do to change it?  Well I don’t vote for the ruling party, I endeavor to alleviate poverty and to make the country a better place. I will have to find a way to improve palliative care for the dying in this country.  

“Death should simply become a discreet but dignified exit of a peaceful person from a helpful society …..without pain or suffering and ultimately fear (Phillipe Aries 1981)” 

Well, I am seeing Prof Froehlich on Tuesday and I will NOT leave her office until she has spoken to Hospice.  For years I fought to keep Vic alive.  Now I will fight for her to die with dignity!   Doctors have made U-Turns in the passages when they see me – this will happen again!

So be warned Hospice.  The Mother is on the Warpath!Image

37 years on death row 19.6.2012


37 years on death row 19.6.2012.

37 years on death row 19.6.2012


Today was a day out of hell for Vicky.  She is deadly pale – she actually has a ghost like appearance.  She was so ill that she was unable to take pain medication and now her pain is out of control.

If I am having a hard time with this how must this poor child feel?  HOW CAN SHE CARRY ON???

Jared has withdrawn completely!   Rene, Jared’s councillor managed to speak to Jon-Daniel today.   He is in total denial!  He said “My Mom is a miracle.  She was not supposed to live past the age of 12 The doctors said she would die when she fell pregnant with my brother and me and she is still alive.  Lots of times they said she would die…She will get better again”

At first I was filled with disbelief and then I realized with a shock that Jon-Daniel is right!  A couple of weeks ago I bumped into an ex-business partner.  When he inquired after Vic’s health I said that she was desperately ill and that I thought that the end was near.  Frik laughed and said “that is what you said 15 years ago when she was pregnant with her eldest son…”

Reading some of the pre-blog stuff that I wrote and when I look in my Bible there are markings “Vic ICU“, “Vic critical”, etc etc etc.

Vic has been on death row all her life.  I know we start dying the day we are born but for most of our lives we are oblivious to the fact.  At funerals we may think of our own mortality but for the rest of it we think we are invincible.  Jon-Daniel thinks his Mom is invincible.

A colleague asked me earlier today what he should pray for when he prays for Vic.  I replied “Mercy”.  When I got home tonight and I saw this tiny, pitiful little bundle doubled over from the pain,  I panicked and thought to myself “What if Jon-Daniel is right and she gets better again?”

If there is a God He will release my poor child from this dreadful life!  It is an inhuman existence that not even an animal deserves.  If Vic had been an animal she would have been put out of her misery a long time ago!!  God does not have to heal her.  He does not even have to take all her pain away.  If she could just have SOME quality of life…some pain free time with her boys… Please God hear my prayer!

Just a cocktail that will send me to heaven 19.6.2012


It was a rough weekend for Vic.  Although we had a house full of loving visitors she was in so much agony.

Vic is experiencing severe intestinal cramping.  Again her abdomen is very distended and quite hard to the touch.  She is also nauseous.  I know these are all signs of an obstruction but I know it isn’t an obstruction.  Maybe a partial obstruction at worse.

Vic is on a strict pain control regime.  Every four hours she has pain medication in one or other form.   She has to eat to be able to take the medication as she already has a vicious ulcer.  I asked her what she felt like eating for lunch and she replied “Just a cocktail that will send me to heaven”.  This is not the first time that Vic has said this…

Conceding defeat… Wanting to die…

Vic has also gone through a mourning and grieving process.  Every bit of independence that she has ever known is lost to her.  Most things that Vic has ever loved doing, eating, drinking is a long-gone memory.  Things that she took for granted are now an event.  In her state of dependence Vic has become a soft, gentle sick person whose life consists of saying “thank you” and ” Mommy, I am not feeling well at all”  Even as a child Vic would listen to the news every morning when she woke up.  Now she is no longer even aware of what day of the week it is.

Vic loved being a Mommy.  She loved caring for her boys.  She always tried to tuck them into bed at night.  My Dad always said that if Vic had one breath of air she would organize a party…

I keep asking the question “when will it end?”  It is so difficult for Vic to die that I should maybe be asking “How is she going to cope with this level of quality of life for many more months or even years?”  Maybe the question should be “How will she die?”  Will she develop pneumonia from immobility of will she develop a fully fledged obstruction?  Maybe her brave heart will give up the battle?   If there is a God of Mercy Vic will go to sleep and not wake up.

I know that whilst there is one breath of air left in her little longs we will care for her and fight for her to continue breathing.  Vic is long past the stage of living.  She merely breathes.

Jared and Jon-Daniel 12.10.2011

I always pray for you but you don’t seem to have a guardian angel 17.6.2012


I always pray for you but you don’t seem to have a guardian angel 17.6.2012.

I always pray for you but you don’t seem to have a guardian angel 17.6.2012


I always pray for you but you don’t seem to have a guardian angel 17.6.2012.

I always pray for you but you don’t seem to have a guardian angel 17.6.2012


It has been a busy weekend!  Friday afternoon Reuben and Nonthanthle came to visit.  Reuben is my son from another mother and Nonthanthle is his beautiful wife.  She is 14 weeks pregnant with their first baby.  Life and death go hand-in-hand and I wonder if this is the baby that will celebrate Vic’s life?

Reuben is a pastor in a poor community.  He is an amazing person filled with love and compassion.  I truly admire him for all the hurdles he has overcome in life.  He is proud and yet not scared to talk about his fears.  He fears that he will not be a good father to the baby… It made me think: What makes a good father? 

So today, on Fathersday, I reflected on fatherhood…

I was blessed with a wonderful father.  My Dad was a gentleman as well as a gentle man.  He was a  wonderful provider, husband, father and friend.  A cruel blow of fate was dealt this wonderful, proud  man when he was diagnosed with Alzheimer’s.  Mercifully my dad succumbed to Alzheimer’s Pneumonia on the 20th of May 2011.  So, even though I could not wish him a happy Fathersday today, I have first hand experience and knowledge  of what a good father should be like…

Danie is a wonderful father to Vic.  If she had been a biological child he could not have been more caring and loving than he is.   Vic’s own father could not handle the guilt knowing that he was a carrier of Osteogenesis Imperfecta.  He coped with the diagnosis by walking away.  He could not handle seeing her broken little body knowing that it was his genes that caused it.  We were so young.  I no longer judge him but I am grateful that he is not around to see her suffering now.  I know that when the time comes Tienie will be around to help her pass…

Vic so desperately wanted to get out of bed to be with the family at lunch.  Poor poppet only made it to the bathroom.  She sobbed her little heart out.  Esther, gentle soul that she is, lay with Vic until her sobs subsided. .. Eventually the pain meds kicked in and she was able to  sleep peacefully for a while.

I received a sms from Robbie (Vic’s  friend) and she wrote ” I feel so sorry for you all.  Poor Vicky.  Its too awful.  For all of you.  One wonders if God is watching.  I always pray for you but you don’t seem to have a guardian angel”

 Some days I agree.  Today after having the kids around for the day I disagree.  Guardian angels come in many different forms.  Some come as a  young pastor  who travels far and at great expense to come and pray for Mercy, a sister (Esther) who lies beside Vic and cries with her, another sister (Lani) who brings flowers and milk tart, a Dad  who takes Vic toast and coffee at 06:30 so she can have tablets.  We are surrounded by guardian angels…

I pray that Vic will have a good night’s sleep – undisturbed by pain. 

I pray for just one more good day with the boys. 

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Vic is truly a prisoner of pain and despair 15.6.2012


Vic is truly a prisoner of pain and despair 15.6.2012.

Vic is truly a prisoner of pain and despair 15.6.2012


My heart nearly stopped when I walked into Vic’s room this morning.  She looked as if she had died.  Vic had had a terrible night and actually, a terrible day too.

Today, I again realized that Vic is truly a prisoner of pain and despair.  For 36 years she has held onto life, against all odds.  Poor precious child.  I cannot help but ask the question “Why was Vic dealt such horrible cards in life?”  Surely there must of been people more worthy of this tortuous life???   Oh yes, the purification process… Surely we have been through the melting ovens enough – if we have not  been purified by now it will never happen!  Now whoever brought this upon us – please move along!!  It is someone  elses’s turn.

Vic once said to me that if she believed in reincarnation she may have understood her life.  She would then have believed that she was Pontius Pilate in her her previous life…

If I could change places with my child I would.  If by any magic I could take over her pain and misery – even for a couple of hours, I would.  I can’t!!!!!

“Where there is life there is hope”.  Who came up with that stupid cliche?  Vic has hoped and prayed for so long!  Everyone has prayed for her.  People from all continents and across all religions and denominations have prayed for her to be healed.  She has been anointed with oil.  And then there are those religious know-it-all’s who claim that the sins of our forefathers have brought this curse upon Vic.  What absolute hogwash!  How can people, who believe in a God of Mercy, make such a statement??  Either there is a God of Mercy and a Son who died for our sins or there isn’t!  You cannot have it both ways!

Walk in our shoes for one day before you make such cold, uncaring, loveless statements.   Look at Vic’s beautiful sons and then YOU, oh righteous, pious one,  tell them that Vic’s journey is because of a curse cast on her by the God that they trust and love…

We’re all on a journey toward death anyway – how we get there, and what we’re able to do in that time is the important thing. But all journeys have an end.  I pray that Vic’s journey will end! ImageImage

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“I’m going to dance my way to heaven, because I’ve already been through Hell” 14.6.2012


“I’m going to dance my way to heaven, because I’ve already been through Hell” 14.6.2012.

“I’m going to dance my way to heaven…” 14.6.2012


“I am going to dance my way to heaven because I have already been through Hell” – is the copyrighted saying of a brave lady who is terminally ill.  I cannot find her blog nor a reference in Google that this is the case, but I would like to credit her with this.  It was posted in Vic’s facebook by a family member.  If I created the impression that it is my clever line I apologise!  The credit goes to  Martha Mayhew-Merson – Meriale46@aol.com

This afternoon Vic and I were chatting and then she said: “Mommy, why does God hate me?  Why does He let me suffer like this?  Why doesn’t He allow me to die?”

I could not come up with a reply.  I don’t have an answer to this question that not only haunts Vic but so many other people.  Today Rob Cramp, Tracey, (both very dear friends to Vic) as well as Hermien, the pharmacist, asked me exactly the same question.

“I’m going to dance my way to heaven, because I’ve already been through Hell.. Vicky Bruce you are one of God’s special angels.”  My young niece, Muriel, posted this apt message on Vic’s Facebook Page.  Sometimes I think the Catholics are right about purgatory.  Only this must be the purgatory stage of our existence.  This existence of ours can only be Hell…

I omitted to say in yesterday’s post, that with a few exceptions, euthanasia and assisted suicide are very cowardly actions – the ill person getting their caregiver to do the dirty deed.  It is such a selfish action.  If the sick person can swallow their own tablets they can take their own lives.  This is my opinion.

Life is hard but death is even harder.

Tonight I am feeling mentally and physically exhausted.  Depressed actually.

Tomorrow I will feel better.    Tomorrow my brave child will continue her relentless battle against pain and indignity.

God have mercy…

Vic and the boys in better days – 23.8.2011

Eat, Sleep, Vomit 12.6.2012


Today was a mixed day.  Although Vic seems marginally more ill and weaker than yesterday she was more upbeat.  When the boys got home we all had tea with her and the boys joking brought a smile to her beautiful little face.  For approximately fifteen minutes there was easy banter in her room.  What a change – our conversations tend to revolve around bowel movements and the color of vomit.

Lying on her bed with me I realized how small our world has become.  Vic’s days consist of Eat, Sleep, Vomit or Eat, Sleep, Tablets – one of the two combinations.   It is amazing that she has not developed bedsores yet.

The Concise Oxford Dictionary defines euthanasia as being “gentle and easy death;  bringing about this, especially in a case of incurable and painful disease”.

I have a simple theory.  Most people who are terminally ill and of full mental capacity are able of ending their own lives  at one or other stage of the disease.  The terminally ill are able to take that extra dosage of morphine themselves.  The vast majority of people have an incredible desire to live and will live through pain and suffering and continue to breath!  Euthanasia is not the issue… You really want to die, you will find a way to die

In the event of a patient suffering from a disease or illness that incapacitates them i.e. motor neuron disease where the patient is ventilated or the patient was left severely brain damaged from an accident, life sustaining treatment should not be allowed.   If doctors are allowed to prolong lives should they not be allowed to end life?  I firmly believe that doctors do not know when to give up.  Vic’s Dad, Tienie, had severe brain damage after a car accident and yet the ICU team resuscitated him after the brain damage had been confirmed!  Why??? What is the purpose of breathing when you are not able to walk, love, talk, breathe on your own?

Professor S A Strauss in his book Doctor and Patient Law, 1984 edition published by J L van Schaik on page 387 states that “in principle every person is legally entitled to refuse medical attention, even if it has the effect of expediting his death.  In this sense the individual has a right to die’.  All that is required is that the declarant, at the time of making his refusal known, is compus mentus…

In the case of Vic she is on 400mg of morphine twice per day and takes 25ml of morphine syrup every 4 hours for breakthrough pain.  Vic has become morphine resistant and the dosages are increasing to keep her incredible, debilitating pain at bay. Surely the dosages of pain medication that she is on must become lethal?  I know that it is Vic’s doctor’s primary intention to make her life as comfortable as possible by the administration of pain alleviating medicines.   Yet the mercy shown to her may have the side effect of hastening death…  Please do not misunderstand me – If I knew how to pray I would pray for her suffering to end!

Vic has a living will with a DNR (Do Not Resuscitate) clause.  I will ensure that it is enforced if the “need” ever arises.

Sometimes I am scared Vic will not die – that she will continue to live, no breath,  in this hell that we call life.  The bottom line is however that Vic will NEVER take an extra dose of morphine and NO ONE will ever administer an extra dosage of morphine.  We all fear God’s retribution for murder… both the terminally ill and their caregivers.

As my dear friend Mohammed says:- her life is in the hands of her God.  We can speculate as much as we like, we have absolutely NO control over life.

I hate seeing Vic suffer but I so cherish the 15 minutes we had today.  Fifteen good minutes in two months…I know I would have taken that extra dose of morphine a long time ago if I was her her shoes.

The world is filled with evil, bad people.  Why don’t they suffer the pain and indignity that my sweet, loving child suffers?  LIFE IS NOT DARN FAIR!!!!!!!!Image

28 days medication….