Setting Vic free 14.1.2013

Dear God remembering is so hard! I miss my baby girl so much. Will it ever get easier? Will the pain go away?

Vic's Final Journey

I had stopped all visits. It was family time. Our little family united in the trauma of our loved one’s dying.


The boys were back at school on the 9th of January. On Monday, the 14th of January, it was Jon-Daniel’s academic awards evening. Vic had so desperately wanted to attend. The Sunday evening she begged me to please promise her that she would attend. I promised her, knowing that it was a death-bed promise I would not be able to honour.

Sunday night, the 13th of January 2013, Vic gently slipped into a semi-coma. She was no longer conscious of what was happening to her and around her. She was only able to respond by blinking her eyes…

Monday morning Vic woke up….She was alert and asked to go to the toilet. She was unable to stand on her own and Primrose and I half-carried her… Her…

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Valley of Death

As the days tick on I relive Vic’s final two weeks of life I remember the agony of seeing my beautiful child lose her grip on life.

I miss her so much. I will never forget.

Vic's Final Journey

January 2013.  Today was a special day.

Boys lying with Vic before Chris' arrival Boys lying with Vic before Chris’ arrival

Yesterday Vic asked me to contact her minister.  Chris arrived at our home at 9.30am.  We all sat in Vic’s room whilst Chris read Psalm 23 and prayed for Vic who was walking through the “valley of death.” She prayed for Vic to find peace and acceptance of her situation.

Chris then served Holy Communion.  Vic, at first, did not want Jon-Daniel to partake in the Communion.  Chris explained that a child having to be confirmed before they are allowed to partake in Communion is a man-made rule.  I pointed out to Vic that it would be very special if Jon-Daniel could have his first Communion with her… Vic agreed.

Chris ministering to Vic Chris ministering to Vic

It was so special.

I was filled with deep gratitude that we as a family have the opportunity of making memories every…

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2015 in review

The stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 8,200 times in 2015. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

Mommy can you feel how sore it is?

Vic's Final Journey

I posted this a year ago.

I still remember my precious child’s eyes.  Old, wise eyes filled with pain and fear.  I remember the unrelenting nausea and excruciating pain.  I remember my beautiful child’s desperate fight to live.


I remember her holding my hand, her tears silently running down her cheeks… The fear in my heart that her suffering would never end.

Now I wish I could hold her one more time; wipe her precious tears away; whispering “I love you angel child”


Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver. …

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“I am sorry Mommy!”

3 years ago. This post brought it all back. Oh God, when will it get better? When will the longing and sorrow end?

Vic's Final Journey

Vicky constantly says “sorry Mommy.”   She says “sorry Mommy” when she vomits, when she is in pain, when she is ill…

Then there is a flood of “thank you’s”….. Vic says “thank you” all the time!  It drives me mad! I don’t want her to apologize for being ill and I don’t want her to continuously thank me.

Vic’s situation, our situation as a family, is unfair, arbitrary, frustrating and so sad.  Vic is blameless, helpless, a victim of poor sick genes and doctor error.

I know that Vic is sad about her situation.  I know that Vic is sad for what the family is going through.  She is sad because she cannot be the mother she wants to be.  She is sad that she has a lonely, sad life devoid of partner love, physical love and friendships not based on pity.  She sad because she does not have a…

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A mother’s love is a glimpse of heaven – Joseph E Beck

And yesterday Jon-Daniel turned 17. Happy birthday my precious Jon-Daniel.

Vic's Final Journey

A new born Jon-Daniel

Today was another milestone for Vic and the family.  Jon-Daniel turned 14 and he woke up to his loving mother’s birthday wishes and kisses.

I could not help but think back to the day he started “big” school.  Vic was violently ill but refused to be admitted to hospital before Jon-Daniel was taken to “big” school and settled into his new class…  Seven years ago she placed her own life at risk to take her son’s hand in hers and lead him into a scary new phase of his little life.

Vic kneeled next to his little chair and told him school was going to be one of the greatest adventures in his life.  She told him she loved him and he was in good hands.  His brother would look out for him at break.  He had to concentrate and listen to his teacher.  “Mommy will…

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Our Hearts Will Always Touch

Forever in my heart Angel Child

Vic's Final Journey

Our Hearts Will Always Touch by Ranja Kujala (Changed)

When I laid there beside you,
Could you feel me there?
My arms were wrapped around you,
And I was stroking your hair.

I was talking about all the good times,
For me they were every single day.
I wanted you to feel love and comfort,
Be happy in some way.

I watched your every breath,
And prayed that each one wasn’t your last.
The time we got to share together,
Went by too quick…Too fast.

I wanted you to wake up,
Please Vic…Open your eyes.
Tell me this is a nightmare,
And not our goodbyes.

As your last breath grew closer,
We lay there peacefully together.
My heart continually breaking,
Because I wanted you forever.

Then there it was,
Your final breath of air.
I didn’t want to believe it,
It was so cruel and not fair.

I held your beautiful face,

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Pain Clinic 11.9

I have started forgetting…. How merciful!

Vic's Final Journey

Urghhh!  Yesterday was a horrible day!

Vic was fine but it was Pain Clinic day…………. I start stressing about the Pain Clinic the day before.  Although it is on an appointment only basis, it is also first come first serve……

With the amount of morphine Vic takes, she needs to be assessed on a monthly basis by a pain specialist.  Vic was not able to go with yesterday morning so I set off on my own.  By now the Pain Team knows me well.  Even when Vic goes I am actually able to give them more succinct feedback on Vic’s pain control than she is.

Generally I do not have a problem in getting her script even when I am on my own.  I walked in just before 8am and the waiting area was packed!  My heart dropped into my shoes.  It was going to be a longggggg day…..


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Vicky Qualifies as a Hospice Candidate…

Vic's Final Journey

Schedule 6 medication – 28 days supply

Just seconds ago I was thinking “What a glorious wonderful day…” when the thought crossed my mind “Hang on a minute…. It is a glorious day because Hospice have agreed to evaluate my sick child????”

Hello!!! How sick is that that our lives has degenerated into a hellhole where Hospice is good news!!

This morning Christa, an internationally acclaimed pain expert, came to evaluate Vic at home. She spent a lot of time with Danie and me to build up a case history on Vic. Christa works for Janssen Pharmaceutical Company as a “Medical Scientific Liaison: Pain”… Part of her responsibilities is to liaise and advise the Pain Clinic and Hospice as an expert!

It was as if a floodgate opened. I rambled on about Vic’s (health) background, history, symptoms, operations, treatment and decisions. I showed X-Rays and photo’s of Vic abdomen…

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Something to think about …. “Define priorities or stop pretending”!!

I have to share this….

It Is What It Is


~~September 9, 2015~~ 


The Devastation Wrought By ISIS Has Forced 4,000,000 Into Camps

These families have witnessed horrors beyond belief.

Had they remained they would have been slaughtered.

Now they live in tents, with limited access to food water. Supplies are limited and tens-of-thousands are fleeing to Europe.

Even in this crisis, food is being cut off to 200,000 refugees.




In my humble opinion, this graph addresses several topics. All of them controversial.

There are religious people who stand strong in their belief that an unborn child, a zygote, a fetus, should be protected at all costs.

Others have expressed their negative opinions towards refugees in this global movement caused directly by the conflicts and wars in the Middle East.

Many governments in the European Union have turned their back on them.

It’s the people of…

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Vic’s 3rd birthday in Heaven

Monday, the 31st of August 2015 was Vic’s third birthday in Heaven.

It was difficult….

It was the most difficult birthday to date…..

From the second I opened my eyes waves of grief crashed over me. My only conscious thought was to breathe. This too would pass.

Minutes before the clock struck 12 I thought “Now there are merely minutes left of this birthday. Tomorrow the mask is back in position. The world will see what they want to see.”

“I will indulge and consciously soak in this heartbreak for another couple of minutes. I remember the way Vic embraced her birthday. She loved every second of the day…. But now this day is mine – a day of reflection, a day of gratefulness, a day to celebrate the miracle of my daughter’s life and to mourn her death.”

From the first second I learnt I was pregnant I starting thinking, planning and fantasizing about my child’s life. I imagined a sport star; a brilliant academic… a family of my own exactly like my family. I dreamt of being a mother like my mom was. In my mind I created a beautiful world for my little baby.

Then my beautiful little baby daughter was diagnosed with Osteogenesis Imperfecta. My world crashed into a million pieces.
“Your daughter will not live beyond the age of nine…”

I thought I would lose my mind. I started spending every spare minute of my life researching Osteogenesis Imperfecta…finding a doctor that would help and cure my child. Thirty seven years after Vic’s diagnosis Vic finally died.
Hundreds of hours in theater; years in hospital, more years filled with pain, indignity and suffering has passed.

The beautiful world I dreamt of for my child was just that….. A dream…..a nightmare.

The death of a child is a pain so deep that it cannot be expressed in words.

The death of a child is life changing.

The loss of a child is a loss that the parent, no matter how much time goes by, will continue to mourn for their entire life. No matter how much support there is or isn’t, it is a journey a parent travels alone.

In the first year I was scared. I felt the madness gnawing on my soul. Today, I am better. I can breathe.


But, I will NEVER stop grieving for my beautiful angel child.

I have a living will 31.7.2012

I thank God that Vic’s horrific journey is over
I weep for my child’s life filled with pain. Run free my little Angel. Mommy is okay

Vic's Final Journey

I have become accustomed to the ICU at the Donald Gordon Hospital.  DGH has one of the best Intensive Care Units in the country.  There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department.  No full-time doctors or pain specialists in the Union’s ICU. 

The difference is that the DGH is a private teaching Hospital and does not handle trauma patients.  Only critically ill patients are admitted to the Donald Gordon ICU.   The staff are all ICU specialists.  Ok, I must admit that they also know Vic very, very well.  For the past 7 years they kept Vic alive.  Time and time again she has amazed and astounded them by surviving  every conceivable Super Bug,  ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs.  The…

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4027 days

So much pain. Will anything ever drown out the sound of my child’s cries of pain?

Vic's Final Journey


Eleven years and ten days ago Vic had her first blotched back surgery that lead to 81 abdominal surgeries.  She lived another 4027 days with excruciating pain, indignity and misery because of the ego and arrogance of a neurosurgeon.  Her little body systematically being destroyed by the sepsis left behind by an idiot doctor.

Dr FS, you arrogant fool, you stole my daughter’s life, you stole a mother from two young boys, you stole her smile, her joy, her laughter, her marriage, her hope!  You gave her despair, pain, a mangled broken body, faeces running out of her intestines into a bag,  an open wound.

You coward, you would not face me in the passages of the Milpark ICU.  You denied me the truth.  You stole my child’s life!

You called my child a morphine addict.  You withheld opiates from her after surgery.  You SAID that the sepsis in the…

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“Grief Illiteracy”

So $@%$# true…


A dreary day like today would be a good day to clean out my bedroom closet. Instead I am trying to process something I read earlier this week which continues to disturb me.

My friend, who is also a grieving Mom, sent me a link to a well-written raw response to a “pastor’s” misguided views on grievers. I am not going to mention this “pastor” by name or toot the name of his book. I base my opinion on the information provided in the response written by Lynda Cheldelin Fell in as well as book reviews I found online.

Ms. Cheldelin writes:

“For your trespasses against the bereaved are not your fault. Sadly, you portray the perfect example of a larger problem in our society known as grief illiteracy.

Grief illiteracy is a dreadfully expensive and problematic issue in America costing millions in lost wages, lost relationships, lost health…

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Sunday, Sunday — Can’t Trust That Day

Dee articulates the pain and loss of losing a child. The loss of not only her child but of those we relied on to support us through the most dreadful loss ever. It is only on WordPress that we are safe and surrounded with love and understanding.
Thank you Dee.


Sunday. Father’s Day. As many remembered and/or honored their own father yesterday, there are fathers among us who are living without a child which adds a new level of discomfort and sorrow to the day. My husband is an excellent father and it pains me that he not only knows the loss of his own father but is also a father living with the unnatural loss of one of his children. Amy would have given her father some over the top expensive gift. Money was never an object for my generous one. Her absence is a flashing neon light with an alarm which randomly goes off depending where you step each and every day.

Having recently recovered from Mother’s Day, I know how difficult and complicated Father’s Day is for a parent living without their child. Our children have always made it a point to honor us as parents and…

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