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


Now my blood pressure is going to be high again…10.6.2012

Jared carrying his Mom into the garden December 2011

This weekend we were showered with love.  A good weekend for us as a family but a lousy one for Vic.  Vic is in a lot of pain.  Mercifully she sleeps most of the time.  The sharp stabbing abdominal pains are getting worse.  Strangely her temperature is only slightly elevated but her heart rate and blood pressure is high.  Signs of pain…  Today was particularly bad,  Worse than yesterday…

Esther brought Vic wonderful nutritional rusks – so she can take MEDs first thing in the morning, Lanie a huge pot of sweet corn soup that Vic devoured and Tracy Chinese soup and cake for the family.  Gill popped in with Chelsea buns.  I was so touched by the caring of our family.   I know it is hard for them to see Vic like this.  Gill, as she walked down the passage to Vic’s room said, “now my blood pressure is going to be high again…”

Gill lives in Whiteriver, a four-hour drive from me.  We have been friends for roughly 34 years – literally and figuratively through thick and thin.  As young Mom’s I did blood and plasters and Gill did dentists and invasive tests.  When Vic was in hospital, as a little girl, Gill would sit with her and Len would take me for tea and anchovy toast!

In 2007 Vic was desperately ill and I sent Gill a text message at 9.30pm to say “Vic is in trouble.  Been put onto life support.  Pray for her”  The next morning Gill walked into the hospital to be with me.  When the doctors told us they were switching the life-support machines off as Vic had no chance of getting better and surviving the septic shock and ARDS, Gill sat with me.  Gill came home with me and helped me tell the boys that the doctors said their Mommy was going to die… We took turns in holding the boys that night.  The next morning we walked into the chapel and prayed that God would spare Vic one more time…  Gill stayed with me the entire day.  God spared Vic.

Gill is an amazing person – she works so hard on her friendships.  She has a clipped way of speaking and has amazing compassion.  She chats to the boys on BBM.  She checks in with all of us on a regular basis.  I think she is amazing because we are all so focused on Vic that we sometimes forget to ask the boys how they are!

What I want to say is that this is so hard for the people around us too.  Many people/friends have come and gone but Gill and Len have stuck around.  There are other friends too – not many though.  And of course our wonderful family.  It is hard for them to not only see Vic suffer but also the rest of the immediate family.  I will go to my grave eternally grateful for this wonderful friendship.

Poor Lani arrived this morning with her eyes swollen from crying.  Yesterday would have been her sister-in-laws 40th birthday.  Anmar tragically died in a car accident in November last year.  Of course my blog triggered so much emotion in her.  She has decided to take a break from the blog as it is too difficult for her to read.  She has such a “soft” heart.

It is amazing how Danie’s kids have accepted Vic and I into their lives.  How they talk about their sister.  Vic grew up as an only child and was 16 years old when I married this wonderful man.  She hated Danie and spoke of him as “that man”.  But from the second that we said “I do!” Vic has called him Daddy…Danie has treated her exactly as if she is one of his own!  On Saturday morning he took her toast and coffee at 06:30 so she could take her tablets and allowed me to sleep in.  During the week Jared makes his mom breakfast so I can sleep.  Vic has MEDs at 03:00 and I go to sleep after that.  Thank goodness I work from home and can sleep in a bit.  The nights seem to be more difficult for Vic than the days.

I am rambling.   Thank you Esther, Lani, Gillian and Tracey for your love and support.

Vic’s monuments of Mothering… 9.6.2012

Today was another bad day!  Esther came to visit and was in tears when she walked out of Vic’s room.  Not because Vic looked worse but because Vic actually admitted to Esther that she was feeling terrible.  Vic will not often admit to anyone that she is not feeling well.  The minute someone walks into her room she puts on a mask.  She is always “fine”.  Normally she laughs too much and too loud – I have just realized that I have not heard her laugh in a couple of weeks.  When last did she laugh??  I don’t even know when last she came through to my TV lounge!  Over Easter she would still come through and lie on the sofa and watch TV with the boys and me.  Deteriation has sneaked up on us…

When Vic came to live with us, seven months ago, she was so scared that we would highjack the parenting role from her.  She was a little dictator.  She ruled her boys with an iron fist.  I always smiled at how tiny she is and how “scared” the boys are of her.  When she speaks they listen.  Scared is the wrong word – respectful may be a better word.  Every morning she got up with the boys and took them to school.  Most afternoons she would pick them up from school.  We would help only if she asked.  It must be almost four months that we have taken over the fetch and carry duty from her… Vic is no longer able to parent the boys.

It is amazing how everything always works for the best.  I am so grateful that Vic is back home.  She has seen that the boys are settled and happy.

Vic has raised two beautiful, caring, compassionate, honest boys.  She has made her mark in life and will leave “two monuments” of her mothering.  I am so proud of my child!

It is amazing that in seven months her health has deteriorated to this extent.  For 10 years she has been living with a death sentence, she has been in and out of hospital, in and out of the theatre, in and out of ICU…but never bedridden.  She has always walked or tried to walk.  She has always tried to remain part of the family and take care of the boys.  She loves driving her little car and fetching the boys from school and taking them for milkshakes.  Watching them do sport…For 10 years she has gotten dressed every day at home!  Always wore make-up and had her hair immaculate.  The past two months she has remained in bed, in pajamas with no make-up.  She has been “out of bed” three times in two months.  Once to the pain clinic…And then paid the price…

Today Vic received a beautiful note from her childhood friend, Gia. She was so delighted and we will try and reply tomorrow if she feels a bit better.  I am so proud of Gia – Senior Director of an International Corporation…Amazing how a “child” becomes this “international expert”… When we spoke about Gia Vic said “I must be such a disappointment to you.  I have done nothing with my life!”

I have thought about that – Vic always knew what the prognosis for Osteogenesis is.  She was determined to live life and not waste it on unnecessary activities…She only ever wanted to be a Mommy and a wife.  She is a wonderful Mommy.  If Vic had a career she would not of had been able to spend the time with her boys that she did.  Vic has put a lifetime of motherhood into 13 and 15 years respectively.  I am so proud of the mother that she is, the daughter she is, the person she is.  I love her unconditionally.  I am proud of my beautiful, brave, caring, loving child.

Vic is the bravest person I know!  For many years she bravely fought OI – Now she has made the bravest decision of all…the decision to give up the fight.

May God give Vic the strength for this last heartbreaking part of her journey.  The long goodbye…


“Life aka Vicky” versus “Death” 6.6.2012

“Mommy, I am sick” Every time Vic opens her eyes she utters these words.

Vic is running a slight temperature, her heart rate is up, she is nauseous and her tummy is cramping.  She is deadly pale and looking so old and forlorn. 

We all know people who have been diagnosed with a terminal illness and have lived far past their doctor’s expectations. In our own family Leon, our son-in-law was diagnosed with grade 4 colon cancer.  Today, mercifully and against all expectations, Leon is in remission and living a full and healthy life.

Why is it that some people die quickly, while others are able to linger or even recover?  If it were a simple matter of “willing it” most people would never die.   Yet, so many times I have seen/felt that definitive moment when I KNEW Vic would live.  Maybe it was a twitch or something – I cannot define “it”.  Each and every time when the doctors had given up, the death councillors had been called in; there was that definitive moment when Vic walked away from death.  It was almost as if Vic shook her shoulders and made a U-Turn… I could see it!!!

Vic has defied the laws of “dying” many times.  Liam, one of the ICU doctors at the Donald Gordon says he wants to write a book on Vic’s fight and victory against death

Faith and prayer may provide comfort and strength, but certainly offers no guarantees of recovery.  Many faithful have lost their lives to illness long before they were ready to say goodbye. Wealth, intelligence, good looks, and a charming personality may be great gifts to have, but disease plays no favourites and claims people from all walks of life. The bottom line is that some who are diagnosed as terminal will die, but not everyone will. Some will beat the odds.  So far Vic has.

Will she win what we believe to be the final round?  Life aka Vicky vs. Death… Ten long, long years she has fought with every fibre in her little body.  I sense that she is tired.  Ready to concede defeat…  She says she isn’t scared.  I am!  I am scared of facing life without my baby.  This is the first exam EVER that Vic has not been studying with the boys.  She has always willed them to study.  When she was in hospital she would encourage and push from her hospital bed.  Now she is not even aware of whether they are home or not…

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.

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…