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…