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…

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

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…” 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

May God have mercy of your soul… 30.5.2012


I started this blog because I don’t trust myself to talk.  If I start crying I may not stop.  Actually I don’t have too many people to talk to.  For the past 10 years we have been waiting for Vic to die.  Initially, I think,  people believe, that holding a dying person’s hand in the final hours is  “romantic” but then the person doesn’t die…and the world moves along.  People carry on with their own lives.  That is just the way it is.  People battle to handle the emotion, the waiting, the suffering.  And it is okay for them to move on.

It is not only other peoples fault’s.  I don’t have time to visit, go for coffee, phone…  It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family.  Many of my old friends must think I deserted them.  Maybe I have but time in every which way has deserted me.

I have been moved by old friends and acquaintances sending me messages of support.  Thank you all.  I had no idea that people would actually read my blog.

Earlier today I read an blog written by Michael Wolff, a writer,  where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true.  I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye

Good news!  Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her.  She will do an experimental “procedure” on Vic next week.  Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion.  Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance.  That will be so merciful!!  Vic takes 400mg of morphine, in tablet form, twice a day.  She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain.  The meds is not what is causing her sleeping.

Vic sleeps 95% of the time.  When she is awake it is to whimper or vomit.

Jared has started to display symptoms of severe stress.  His school marks are dropping and he doesn’t sleep.  Like me, he is awake every couple of hours to check on his Mom.  Jon-Daniel doesn’t talk.  He just carries on.  I worry about him – how will he handle The Day, when it comes?

In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls.  Especially on Vic and the Boys souls…