Tag: Osteogenesis imperfecta

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…

Last night was another bad night…23.5.2012


Last night was another bad night. 

Yesterday was the Pain Clinic.  When I gave Vic her 03:00 meds I dressed her in a tracksuit.  I would go ahead and get into the queue and Danie would bring Vic through just in time for her consultation.  I arrived at the Helen Joseph at 7:20 and was 3rd in the queue.  I calculated that if Prof Froehlich was in by 09:00, two patients ahead of us… Vic would have to be there at 10:00 to ensure the minimum wait.  Well, no Prof Froehlich and the two resident doctors started consulting just after 08:00!! I phoned Danie and told him to leave home immediately.  Murphy’s Law they got stuck in the traffic. I had to let two people in ahead of Vic as she only arrived at 09:45… 

Then three hours in the queue at the pharmacy just to be told no morphine syrup again!!!  Without morphine syrup for breakthrough pain Vic’s “life” is sheer, absolute undiluted hell!  Now I have to beg and plead for morphine syrup with GP’s…More doctors’ appointments to drag Vic’s sick little body too…  Now if Hospice would only come in life as we know it will be so much easier!  But Vic doesn’t have AIDS or cancer and no-one can guarantee that she has a maximum of 6 months left…so – no Hospice!!!

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when he is sad, Jared how much he helped her… She tells me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

Oh dear Lord, when will this nightmare end? 

I am your mother – not your excuse! 8.5.2012


“I am your mother not your excuse…” brave words spoken by a true warrior!

Last night at 23:30 I received a BBM from Jared (Vic’s eldest son) “Oumie I want to ask you something and please be completely honest with me.”  I replied: “I will always be honest with you my angel” to which Jared replied “Oumie is Mommy’s time close?”

Tonight we had a family round table.  WE spoke about Vic’s imminent demise, how it would likely happen, a possible sequence of events…we spoke about the fact that there is nothing unsaid between us; that the boys would remain with me and then Vic told them that she is their mother – not an excuse for bad marks or poor behaviour…

We cried.

Vic is vomiting blood.  The pain is excruciating and she is weak and very, very tired.  How much longer before this hell ends?Image

That will be so sore… 6.5.2012


Tonight I gave my beautiful Vicky permission to die.

Vic’s pain is increasing.  I believe the sepsis in her spine has spread. The back pain is devastating.  Also the abdominal sepsis is so much worse.  In January the wound “popped” once a month and little bits of pus came out.  Five months later the pus pours out – every day…

Vic is spending more and more time in bed.  The first words she utters when I wake her in the mornings ( or any time of the day or night) is “Mommy I am not feeling well…”

Tonight she asked me what would kill her…I guessed that it would be an obstruction.  She said “that will be so sore”Image

My dearest child 27.11.2003


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My dearest child

My heart breaks when I look at you.  Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain.  The morphine dulls your dark eyes…

It is so difficult seeing you in so much pain…the times when you are bent double from pain.  My heart breaks when I see how you are still trying to care for your family.  If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs…  I see the helplessness in Colin’s eyes when he looks at you.   It is soul destroying!!!

It is at times like this that I cry out “How much longer God?  When will her suffering end?”  But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”

With the obstruction I fear that you will not make it.  The morphine aggravates the situation!  When will you develop another fistula?  It is only a matter of time.  How time do we have left?

I wish I could just hold you and protect you against the pain and death.  If it was a bullet I would take it for you but how do I protect you against your own body?  How can your body betray you like this?

In my mind’s eye I see you lying on a bed, strapped in, poison flowing through your veins… You are dyingImage