Daddy don’t leave me…. 12.1.2013

A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…


Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.


Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.


It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”


I hate my life.  I wish I were dead.

Vic’s own journal 24.3.2003

Vic and her boys 1999
Vic and her boys 1999

A glimpse into Vic’s life and soul…a journal entry she made on the 24th of March 2003

“And so it begins.  Tomorrow is the first surgery of this year.  My poor children. My family.  This is so difficult.  I am panic-stricken, but not about the surgery. I promised Jared we would have a nice school holiday. It’s his first holiday and he was so excited about staying home with his mommy.  I’m his mommy….  Do you know that?  It doesn’t always feel like it. Do you understand? Do you know what I mean?  I’m sure you know what I mean. It doesn’t always feel real. I carried them.  I gave birth to them but there are days when they don’t even feel like my children.  What if I die tomorrow?  Are they going to remember me? What have I really meant in their lives?  Everyone is so amazing about my bone disease that I sometimes feel smothered by their love.  Does that make sense? Does that make me ungrateful?  I feel so guilty. People have been unbelievable.  I never knew that there were so many special people in this world.  I have been carried on the wings of their prayers.

My poor children.  I already miss them.  I know this sounds jumbled but that is how I’m feeling.  I feel like there is a hole in my stomach. I never slept last night. Again.  I always think that Col and I will be closer or at least loving the day before my ops because everyone else is.  But it never is that way. People are so amazing. Everyone phoning and wishing us well and saying prays for us, but then I don’t get to spend any time with the children or Colin. We land up shouting at the kids, because they keep trying to get our attention.  We try to eat and the phone rings. We try to bath and the phone rings. Colin asked me to send off some documents, to the auditors and I promised I would do it this morning and by the time he got home I still had not done it, which already irritated Col.  So I sent them off while Col and the boys ate dinner and my food stood getting cold.  What if I die tomorrow?  I wouldn’t even have enjoyed my last dinner with my family.

Mom does placements in East Africa and I help out by making the phone calls and making appointments for the interviews. (I get paid for it, very well at that). And I really enjoy doing it.  It is something that I know I am good at.  I am an organiser by nature.  I become obsessive with the details and the smaller details to make it go smoothly.  The only thing is that mom only found out last night that we needed to do 6 placements and the guys from East Africa are coming on Monday and mom still needs to do the filtering process before they arrive.  Today is Wednesday.  Tomorrow is hospital. Mom starts interviewing Friday. She is interviewing on Saturday as well. Mom always says if you want something done give it to a busy person.  But today, I feel swamped.  I like things in little neat packages. Not disorganised.  I specially kept Jon-Daniel home because of me going to hospital and I did not get to even have a game of fingerboard with the children. I only found out on Tuesday that I was being operated on Thursday.  I haven’t packed yet.  Col and I are bickering, because I’m not getting to him and today he had a very important meeting with his boss.  And we couldn’t get around to talk about it.  It was about his package.  We are really battling financially.  But that’s another story.  (I know you know what I’m talking about.  We all go through it at some point in our lives.)  I was so proud of Colin.  To approach his boss for an increase was extremely difficult for him.  It has taken him 4 months to do it. Colin is very proud. I think most men are, but Colin comes across as very blasé, which he really isn’t. 

I become tearful when I think of going back to hospital.  It is so difficult for me and people don’t understand that I’ve built up such a resistance to hospital.  What really hurts is that I spend so much time in hospital that people don’t come and see me especially if I’m only in for a few days.  Life just keeps going on. Nothing changes. It was the same after my father died 3 years ago.  I so wished life would stand still and mourn with me.”

The process of preparing for death

My beautiful baby girl
My beautiful baby girl

A while ago I read the following “When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death. For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death.” Terminal Illness – Preparing for Death – Dealing with Illness

Today a mere 24 days after my child stopped breathing I re-examined this statement.

“When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death.”  This is so true.  In one foul sweep everything changes!  The way one approach every day; every birthday, Christmas and New Year… One sets small goals.  You learn to appreciate the small things in life – having a cup of coffee with a friend, celebrating another Mother’s Day, living long enough to see the newborn of a loved one…

Last will and testament … setting up trusts for the children; sorting out photos; tidying up cupboards; making decisions whether to have a funeral or cremation….Just close your eyes and feel the terror of planning your own memorial service….  Feel the terror of knowing that your organs are shutting down….feel the terror of knowing that you will have to say goodbye to your loved ones – that they will walk out of your room and you will never see them again, feel the touch of their gentle hands, never hold your sons again…..  Imagine knowing that your life is running out.  Knowing that soon you will breathe your last breath!

This is what my Vic experienced.  She kept asking her BFF, Angela, “How do I say goodbye?”  Vic would cry  and hold onto Angela.  “Don’t go!  Please stay”.

Imagine being on death row with the execution date set.  The process has begun…. The condemned gets to make a will, meet his family for the last time, write his last letters, order his last meal and wonder what death will feel like…

Vic was scared.  She feared death.  She feared not knowing how death would feel….she feared closing her eyes and not ever seeing her loved ones again.

“For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death”….  What a load of hogwash!  No matter how much love surrounds the dying person there is no dignity in death.  How can death be rewarding?

It is however an amazing experience to witness the transition of the body when the soul leaves!

This time of preparation is a time filled with trepidation and fear.  Nobody KNOWS what lies beyond your final breath.  What is the Catholics are correct and you head for purgatory?  No one is sin free….What if Islam is correct and you are a Christian?  Then you are doomed to hell!  Hopefully the Christian faith will allow us entry into Heaven…. We will only know when we die!

Comforting time?  What comfort can there be in dying?  No more pain? Sure!  That is certainly comforting but what about the terrible, terrible knowledge that one will be separated from your loved ones?  The love that enshrouded you all your life will be plucked from your existence!  The love will continue but there is a divide between life and death that cannot be crossed!

Meaning to life?  Yes that is true I suppose if you are distant and removed from your family or loved ones or if you had a “purposeless” life.  Dying does give an opportunity to live each day, not waste time procrastinating or living in anger.

Dignity in death?  There is no dignity in a lingering death.  Bit by bit the terminally ill lose their dignity.  Every day there is some new loss to mourn.  The final days, if they are lucky, they will be sedated.  If not they will writhe in pain, choking on their own phlegm and gasping for breath, their hearts racing and delusional from fever.

People around the dying become scared and start praying for their deaths…I know because I did!  People stop visiting because they want to remember the dying person as a healthy, happy person….The terminally ill cease to exist to most of the world long before they die.

Stepping Stone Hospice has 26 patients.  We have had 12 deaths to date – Vic being the first.  Stepping Stone has allowed the dying to die pain-free.  Maybe the rewarding ending is for the living?