Tag: Heaven

In three day’s time…


In three day’s time we will celebrate Vic’s birthday.

On Monday, at Heathrow airport, I unthinkingly picked up a bottle of “Beautiful” perfume. I looked at the bottle of perfume and put it down as if it was a snake that was ready to strike… Vic is dead. This year she will not wake up to the sound of us singing “Happy Birthday”. There will be no shrieks of “Oh, thank you! This is EXACTLY what I wanted!” There will be no birthday party this year.

Vic opening her birthday gift from her Dad last year. The boys were so excited and everyone wanted to set up the “iPad”…

This year we will light candles for a precious mother, child, friend… We will send prayers to Heaven.

We whisper your name…


Some days I sense Vic’s closeness. I sometimes smell her. But I cannot touch her. I cannot hear her voice.

The boys and I light candles for you my precious baby…

We whisper your name

The boys write your name in the sand…

You send us feathers from Heaven….

How we miss your brave smile…

How I miss reaching out and being able to touch you

Holding you my precious child…

Yesterday, today, forever……

I love you Angel Child!

My Angel up in Heaven ~ Written by Dave Hedges


Re-posted from http://myownheart.me/2013/07/08/my-daughter/.  This blog belongs to a dear friend of mine.  Len Williams-Carver who lost her daughter tragically in 2011 – not through illness but Klysta was murdered!  Len posted this, and now I am reposting these beautiful words.  Thank you my dear friend!!  You are in my heart!

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My angel up in heaven, I wanted you to know,
I feel you watching over me, everywhere I go.
I wish you were with me, but that can never be,
Memories of you in my heart, that only I can see.
My angel up in heaven, I hope you understand,
That I would give anything, if I could hold your hand.
I’d hold you oh so tightly, and never let you go,
And all the love inside of me, to you I would show.
My angel up in heaven, for now we are apart,
You’ll always live inside of me, deep within my heart.

KLYSTA LaNELL  08-20-1969 to 02-19-2011
My beautiful daughter, my heart void.

VICKY BRUCE 31-08-1974 TO 18-01-2013

My beautiful daughter, my Angel Child.

Nelson Rolihlahla Mandela


How we forget things… even great things!

The brain is a marvellous thing.  Let me rephrase that – my brain is a marvellous thing!  It shuts out bad memories…

Photo Credit: http://sadderbutwiser.wordpress.com/
Photo Credit:

http://sadderbutwiser.wordpress.com/

I am starting to forget Vic’s pain, the relentless nausea, intestinal obstructions, cramping.  I have blocked all the excursions to doctors, Radiology and Pathology Departments…the countless “Bad News” meeting with doctors.  I now focus on my longing for her.  The good and funny times…

I am unable to remain angry for a long time.  Well, at least with people I love.  I forgive easily.  Life is too short, and negative energy drains me.  Danie, my husband, believes I have a split personality.  If, or rather when we have an argument, I will say what I want to say.  I play the ball and not the man.  I don’t get personal nor do I generalise.  Within minutes of the argument I would have forgotten I am angry and start chatting again as if nothing ever happened.  Danie will sulk and stay angry for days…

When I have been harmed by malicious people, I forget.  They no longer “exist” in my life, but I don’t walk around with anger in me.  I will remain civil.  I just don’t care anymore.

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The bad thing about this wonderful brain of mine is that it also blocks out the good parts of bad memories…  As I no longer have a daughter to cure I Googled my own “symptoms” and found the following information  http://io9.com/5952297/two-ways-to-forget-bad-memories-according-to-a-new-scientific-study “One mechanism, direct suppression, disengages episodic retrieval through the systemic inhibition of hippocampal processing that originates from right dorsolateral prefrontal cortex (PFC). The opposite mechanism, thought substitution, instead engages retrieval processes to occupy the limited focus of awareness with a substitute memory. It is mediated by interactions between left caudal and midventrolateral PFC that support the selective retrieval of substitutes in the context of prepotent, unwanted memories.”

Specifically, individuals could remember what caused the event, but were able to forget what happened and how it made them feel.  Co-author Professor MacLeod said: ‘The capacity to engage in this kind of intentional forgetting may be critical to our ability to maintain coherent images about who we are and what we are like.’

The research, which was funded by the British Academy, is published in the Journal of Experimental Psychology: Learning, Memory and Cognition.  Http://www.dailymail.co.uk/sciencetech/article-2162606/People-trained-forget-bad-memories-potential-breakthrough-emotional-disorders.html#ixzz2USqbrFM2

In one of my posts, https://tersiaburger.com/2013/05/25/most-influential-blogger-award/, I wrote that I would like to meet Nelson Mandela.  A blogger friend commented on it and it triggered something in my mind.  I HAVE met Nelson Mandela.  I should have articulated it differently – I should have said I would like to talk to him.

It was a horrible time of our lives when Vic started going to the Pain Clinic.  Her pain was out of control – or so I thought.  It was actually just “preparation school” for what was yet to come….  I was mortified that she was on 600 mg of morphine, a week…. When Hospice accepted Vic onto the program, she was already on 600mg of morphine, twice per day.

I digress.

Vic needed to consult with an anaesthetist, specialising in pain control, on a monthly basis to examined, her pain evaluated and to get a new prescription for the morphine.  It was one of those dreadful experimental phases of her life.  But, bad things lead to great things…

The Pain Clinic was in an élite part of our city.  It was a schlep to get to it and took hours out of a day.

This particular day Vic was in terrible pain, and it was difficult moving her from the car into the wheelchair.  Her beautiful eyes were dark from pain and filled with tears. I remember thinking “How tiny and sad she looks”…

We stood at the elevator for what felt like a lifetime.  All I wanted to do was get Vic into the consulting rooms so she could get an injection for pain… I was getting quite impatient with the delay of the lift when it started moving down.  I noticed quite a build-up of people on the outer periphery but did not pay too much attention to it.

The door opened.  Two tall men, wearing sunglasses, walked out.  There was an audible gasp in the hall.  The greatest statesman in the world, Nelson Rolihlahla Mandela, stood behind them.  He was so tall!

In total awe I moved Vic’s wheelchair back clearing the way for this amazing man.

He walked out of the lift and came towards us.  He stood in front of Vic, stuck out his hand, and said “Hello my dear.  How are you?”

“I am fine thank you Mr President,” Vic said

“I hope you feel better soon,” he said in his beautiful, raspy yet gentle voice.

He greeted me, still holding her hand.  I will never forget his gentle eyes.  He had an aura of greatness.  Two great warriors were locked in a moment of kinship.

“Goodbye” he said and walked away.

Death is however closing in on this amazing man.  This year, by the Grace of God, our country and the rest of the world will celebrate this great man’s 95th birthday.  Given his poor health and advanced age, it is to be expected that he will die not too far in the future.  It will be a sad day for South Africa and the rest of the world.

I know that he will meet Vic again in Heaven.  I believe that the two brave souls will recognise one another.  This time there will be enough time for them to linger and chat.  The people they are- it will be about their loved ones, the grace they experienced in their lives… I know they will not discuss the hardship, pain or suffering.

Two incredible people… Nelson Rohihlahla Mandela and Vicky Bruce.  Hero’s of many… two people who have made a difference, lead by example.

Photo Credit: http://minnesota.publicradio.org/display/web/2013/02/01/mpr_news_presents

"Oh Mr President, my mom is your biggest fan ever..."
“Oh Mr President, my mom is your biggest fan ever…”

29 days – Promises Kept


My beautiful Angle Child

Today it was 29 long miserable days since you stopped breathing.

I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed.  My life has continued yet part of me is dead.  I have lost my words today.  I just want to have a cup of tea with you.  I want to tell you how much I love you and how much I miss you.

Promises Kept

I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.

I get up each morning,
I get through the day
struggling past tears,
every step of the way.

I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.

I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.

But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown

 

WHEN TOMORROW STARTS WITHOUT ME…


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When tomorrow starts without me, and I’m not there to see.
If the sun should rise and find your eyes, all filled with tears for me.
I wish so much you wouldn’t cry, the way you did today,
While thinking of the many things we never got to say.

I know how much you love me, as much as I love you..
And each time that you think of me, I know you’ll miss me too..
But when tomorrow starts without me, Please try to understand..
An angel came and called my name and took me by the hand,
It seemed my place was ready – In Heaven far above,
and that I’d have to leave behind, those things I dearly love..

But as I turned to walk away, a tear fell from my eye.
For all of life, I’d always thought, I didn’t want to die.
I had so much to live for, so much yet to do,
It seemed almost impossible, that I was leaving you..
I thought of all the yesterdays, the good ones and the bad..
I thought of all the love we shared, and how much fun we had..
If I could relive yesterday, just even for a while,
I’d say goodbye, then kiss you ‘til I saw that special smile..

But then I fully realized, that it could never be,
‘Cause emptiness and memories, would take the place of me.
And when I thought of all those things, I might miss come tomorrow,
I thought of you, and when I did, my heart was filled with sorrow. .
But when I walked through Heaven’s gates, I felt so much at home.
When God looked down and smiled at me, From His great & golden throne,

He said, “This is eternity, and all I’ve promised you.
Today your life on Earth is past, but here it starts anew.
I promise no tomorrow, but today will always last,
and since each day is the same day, there’s no longing for the past. .
But you have been so faithful, so trusting and so true,
Though there were some times you did some things you shouldn’t do. .

But you have been forgiven, and now at last you’re free,
So come and take me by the hand, and share my life with me..”
So when tomorrow starts without me, don’t think we’re far apart,
for every time you think of me, I’ll be right there – in your Heart..

https://www.youtube.com/watch?feature=player_embedded&v=hoPaHxUWA5o#at=16

THIS WAS THE LAST SONG PLAYED BEFORE THE SERVICE STARTED.

Longing for Heaven


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I am reposting this magnificent post of Peter Wiebe.  Thank you Peter.  I almost feel excited that Vic soon will meet her Saviour in a painfree body!

Peter Wiebe Aylmer, ON

.My name is Peter Wiebe. I am a husband and father of 4 boys-the oldest of which has gone ahead of us to Heaven after a courageous battle with cancer at the age of 10.

I am a Christian and thus write from a Christian perspective. Although my faith was/is being severely tested by the loss of my firstborn son, my hope lies in Jesus Christ and all that the Bible teaches regarding Him, His death and resurrection, and our future hope of glory with Him.

This blog is a journey through grief, about cultivating an eternal mindset in a temporary world, about all things related to faith, and life after death.

I dedicate this blog to Jesse’s memory and hope that its contents will draw others nearer to God.

 

If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.

C. S. Lewis

 ***

With The Guardian’s arms wrapped snugly around his chest, the wind rushing past his ears and whipping through his hair, Jesse extended his arms and whooped for joy just like Woody in “Toy Story” when he flew with Buzz.

The sea, a luminous, turquoise blue rushed by far below. The Guardian angled towards the water till they were just skimming above its surface. Unable to resist, Jesse dipped his right hand into the water, fingers extended. His hand sliced into the water creating a plume of ocean spray behind the duo as they sped across the sea. The cool water sent a delightful tingling sensation up his arm. Jesse laughed and thought perhaps he heard the Guardian chuckle, but he couldn’t say for certain. They lifted higher again, and he could no longer reach the water.

Ahead, the breakers rolled onto a glistening white shore. Further back, yet towering over the beach, a vertical rock face rose to unknown heights.

As they flew over the pristine white sands, the rock wall loomed ahead. Dramatically, the Guardian altered course and shot straight up, parallel to the cliff face. Jesse’s stomach jumped at the sudden change in direction. They accelerated as they rose ever higher. Soon, the beach below vanished from sight and still they ascended. Just as it seemed there would be no end to the rock wall, they slowed and crested the top.

As far as the eye could see, a shining white wall stretched along the edge of the precipice in either direction. There was a walkway on top of the wall and watchtowers evenly spaced along its length. A figure, looking over the parapet, waved as they flew over and past the wall.

“An angel?” Jesse asked.

“Yes,” replied the Guardian. “Welcome to Heaven’s Country.”

Their journey took them over majestic snow-capped mountains, lush green valleys, and beautiful meadows until at last they sighted the City of God situated in the midst of a vast golden plain.

The city was built on and around a mountain whose summit thrust up into the sky to dizzying heights. The most dazzling colours of light appeared to emanate from the city. From their vantage point, high in the air, it resembled a shining jewel set in a sea of gold. And yet, as high as they were, the mountain rose still higher. Jesse doubted whether or not they could have flown over it.

The city grew ever larger as they drew nearer until it dominated the entire landscape. The Guardian angled downward and slowed their flight. They were landing. As they approached the ground, a gentle breeze played over the golden grass causing a rippling effect that was stunning. It reminded Jesse of a wheat field.

As they swooped in closer, a path presented itself, cutting through the wheat-grass and leading toward a large gate set in the massive wall of the city. The wall itself extended to either side until it disappeared on the horizon. It pulsed with mesmerizing colours as if the light from within the city could not quite be contained by its walls. The gate was open and a large angel stood guard beside it.

The Guardian released him as Jesse’s feet touched the ground. “We’re here, Child.”

Jesse looked at him with apprehension. “Will you come with me?”

The Guardian smiled. “I will see you again soon. Someone else is waiting for you here. You must go to the gate now.”

The boy turned. Tentatively, he started walking toward the gate.

***

The Guardian watched as intense light poured out of the opening onto the walkway. Its brilliance increased a hundredfold as a figure, silhouetted by the light, stepped through the gate.

The boy hesitated, but the silhouetted figure did not. He ran to the boy, picked him up in his arms, and twirled him around before gently setting him down again. Then, the Lord, of both Heaven and Earth, stooped down in front of the child, reaching out his nail scarred hands. The child took hold of the Lord’s hands and threw himself into the arms of his Saviour.

The Guardian could not hear the words that were spoken between the two. They were sacred between the child and the Lord. Soon, the two of them walked hand in hand back through the gate. The celebration would soon follow.

Peter Wiebe 2012

 

http://thresholdofheaven.com/2013/01/07/longing-for-heaven/

 

 

I read in the Bible that Heaven is a great place…”


Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..."
Dr Sue putting up the drip.  “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein.  The vein held for the Perfalgan and she also managed to get a bag of saline into Vic.  This will hopefully rehydrate her.  It has been a rough 24 hours with so much vomiting.  The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling.  Leon, SiL, put a hook into her ceiling and we have suspended the drip from it.  I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan.  Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted.  Sue agreed that it would certainly make life a lot easier.  It would be easier to administer all Vic’s IV medication.  Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling
Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped.  Vic’s breathing is better.  Vic has not vomited since 11 am this morning!  She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back.  Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed.  That is what the blood tests show.

What is holding Vic back?  Sue says death happens when one relaxes completely and deeply!  Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited.  Vic even got out of bed for a while and had a laugh.  It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable.  I wish with every fibre of my body Vic will find peace.   That she will find the strength to let go…

Vic has been ill for such a long time.  Maybe she just thinks this is how life is.  Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain.  To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours 

Obed Akuma
vicbaby

 Baby Girl it is time for Heaven…   You have to let go!

I wish for Vic….10.7.2012


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via I wish for Vic….10.7.2012.

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise! 

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

A lifetime ago…

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.