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…

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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.

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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.

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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…”

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I hate my life.  I wish I were dead.

Mother and Child


In the 206 days since Vic died I have never missed her as much as now.

My UK daughter-in-law and her three girls are visiting. The poor little poppets have all had a gastric bug. The girls are amazing and I love them with every fibre in my body and they love me too. What struck me once again this week is that incredible bond between a mother and daughter. When a child is ill they want their Mommy. There is no substitute for a Mommy.

Dr Christiane Northrup, author of the book Mother-Daughter Wisdom (Hay House), says: “The mother-daughter relationship is the most powerful bond in the world, for better or for worse. It sets the stage for all other relationships.”

No other childhood experience is as compelling as a young girl’s relationship with her mother. Mothers impart on their daughters how she feels about being female, what she believes about her body, how she takes care of her health, and what she believes is possible in life.

Jennie Hannan, executive general manager of services at counselling provider Anglicare WA, agrees. “How a woman sees herself, how she is in her adult relationships with partners, and how she mothers her own children, is profoundly influenced by her relationship with her own mother,” she says.

When Vic was ill she wanted her Mommy. Last year, when she had her arm operation, she was so distraught in ICU that the staff asked me to stay with her around the clock. With each and every major surgery she ever had (excluding one knee operation), my face was the first she saw. Vic knew that I stayed outside the ICU until she was released into the ward. More often than not, I was not allowed to sit with her all the time but she knew I was there.

I am not exactly gifted in sewing or knitting… (It was the only subject I ever failed at school) yet I knitted Vic a massive blanket in 2007 sitting outside ICU and next to her hospital bed. I only ever knitted at hospital and I am a very slow knitter. If we had buried Vic I would have buried her wrapped in her blankie… My life ground to an absolute halt when Vic was in ICU or hospital.

Witnessing this incredible bond the past 2.5 weeks has brought back incredible memories of Vic sitting on my lap, her little arms curled around me and her head nestled into my neck. That incredible trust and reliance between us.

My daughter-in-law and I sit and chat into the early hours of the morning. She has a happy disposition. Her life revolves around her family. She has an easy laugh and great sense of humour. If ever I went into a Quiz Show and there was show business section I would want her next to my side. When she goes to bed she gives me a hug. I love this woman for her kindness and compassion.

I realised how much I have missed that companionship, our chats into the early hours of the morning. Somehow it truly made me realise that my child is dead and I am alone.

Jared, Vic’s eldest has come down with the girls’ gastric bug. His dad brought him home early because he wanted to be home…. He got straight into bed. I sat down next to him and asked him how he was feeling. I could hear the tears in his voice when he said “really ill…” I could hear the forlornness in his voice; his longing for his mother to be sitting on his bed.

Dear Mommy…                                                             Words could never explain what you mean to me…It always meant so much to me that no matter how bad you felt or how sick you were, you always went out of your way to do anything and everything you could for us… Always going out of your way to make everyone’s life easier especially mine…

You were always my hero… No matter how sick you were every morning you woke up and got dressed. Even if you didn’t do anything you always looked your best…

I love you so much mommy… You made such an impact on everyone’s life that you will never be forgotten…you will forever live in our memories as the bravest woman and best Mommy of all time…

No one will ever be able to replace you…

Jared

Jared is alone today. Jon-Daniel lit candles for Vic when he arrived home. Jon-Daniel is alone today.  How can such a tiny, sickly person leave such a horrific void in our lives? A mother and a child cannot be substituted or replaced. It is as simple as this.

Precious Vic, we miss you so much!!  We are all feeling miserable without you.  We miss that incredible bond we had with you.  We want you back at home.

The stench of hatred


hate

On the 22nd of February I posted on a blotched back operation that Vic had and ultimately lead to her death.  https://tersiaburger.com/2013/02/22/4027-days/

A family member commented I hope one day you can forgive him, for he didn’t know what he was doing. I checked with Vicky, and she did.”

I know Vic had made peace with the surgeon.  She died with no feelings of hatred in her heart.  She bore no-one ill.  Vic was a gentle, loving people-pleaser.

I am not.  I have a dark side to me.  I do not tolerate fools or bullies easily.  I hate the surgeon and his compatriot in blotched surgery, Dr V, with every fiber of my being.  He KNEW what he was doing.  He admitted later that it was an experimental procedue…

I know exactly what the Bible says about forgiveness.  I know how bitterness and hate affects one’s life.  I know it robs one of your joys.       I have read that you cannot enter Heaven if you have not forgiven.  I have however also read, and choose to believe what is written in the Old Testament – an eye for an eye….

I received this lovely little anecdote today and thought, very sanctimoniously, that I would share it.  When I however sat down and started typing I realized that I would be a hypocrite if I pretended to just pass on the moral of the story.

I know that hate contaminates everything.

The definition of Hatred:-

From Wikipedia, the free encyclopedia

Hatred (or hate) is a deep and emotional extreme dislike that can be directed against individuals, entities, objects, or ideas. Hatred is often associated with feelings of anger and a disposition towards hostility. Commonly held moral rules, such as the Golden Rule, oppose universal hatred towards another.

The Bible refers to hatred between 71 and 93 times in the Bible – depending on which version you read. 

Both the Old and the New Testaments deal with hatred. David, in the Psalms, thanks God for destroying those that hate him, and thanks Him for hating his enemies.[1] This is the era of wars and kingdoms; armies destroy enemies, hate is political and military. But it is also domestic: David’s sons hate each other, and Absalom will kill his half-brother after the latter rapes and spurns his sister. And after banishment, Abasalom will hate his father and try to destroy him. However, the Old Testament also contains condemnations of hatred. For example, ” thou shalt not hate thy brother in thy heart”.[2] In the New Testament, hatred focuses on the soul. Evil is internalised and the focus of hatred becomes that part of the heart, the sinning self. The New Testament also clearly condemns hatred. Jesus contended that “whosoever hateth his brother is a murderer and you know that no murderer hath eternal life abiding in himself.”[3] But all people are, according to the gospels, sinners, and only have to look inside of themselves in order to find sin. Loving good means hating sin and turning from vice. Love, as Aquinas[citation needed] teaches, must be divided into love of good things, the healthy movement of the soul true to itself, and love of inappropriate objects, the desire to have and use what may be bad for the soul.- Wikipedia

So herewith the anecdote…

A kindergarten teacher decided to let her class play a game.

The teacher told each child in the class to bring along a plastic bag containing a few potatoes.

Each potato will be given a name of a person that the child hates.

So the number of potatoes that a child will put in his/her plastic bag will depend on the number of people he/she hates.

So when the day came, each child brought some potatoes with the name of the people he/she hated. Some had 2 potatoes; some 3 while some up to 5 potatoes. The teacher then told the children to carry with them the potatoes in the plastic bag wherever they go (even to the toilet) for 1 week.

Days after days passed by, and the children started to complain due to the unpleasant smell let out by the rotten potatoes. Besides, those having 5 potatoes also had to carry heavier bags. After 1 week, the children were relieved because the game had finally ended… The teacher asked: “How did you feel while carrying the potatoes with you for 1 week?” The children let out their frustrations and started complaining of the trouble that they had to go through having to carry the heavy and smelly potatoes wherever they go.

Then the teacher told them the hidden meaning behind the game. The teacher said: “This is exactly the situation when you carry your hatred for somebody inside your heart. The stench of hatred will contaminate your heart and you will carry it with you wherever you go. If you cannot tolerate the smell of rotten potatoes for just 1 week, can you imagine what is it like to have the stench of hatred in your heart for your lifetime???”

Moral of the story: Throw away any hatred for anyone from your heart so that you will not carry sins for a lifetime. Forgiving others is the best attitude to take!

Newsflash:  I pray that I will find forgiveness in my heart for the good doctors but tonight my eldest grandson is lying in his room, reading a book of poetry Vic left him, crying for his mother.  Nothing that I do or say can make his pain less or bring his mommy back.

So that stench of hatred…I will live with it.  It fuels my hatred.

Children are so fragile…..


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Christmas 2013

Day 22 has finally arrived.  Day 21 dragged on and on…  I waded through a haze of misery today.  Jared had an horrible day.  I could see he had cried.

Jon-Daniel has a friend sleeping over.  He is a young boy of 14 who lost his dad to a drug overdose a year ago.  I asked whether he had been for counselling.  He said he had but that it had not really helped.

“I had to get over it by myself” this old soul said.

“The shrink kept telling me I must forgive my dad.  I hated my father for using drugs.  So I stopped going.  He wasn’t listening to me so there was no point…”

I have to travel to an exhibition in the UAE from the 16th – 21st of February.  Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.

Children are so fragile.  On the surface they appear to be coping yet the pain lies shallow…

Last night Jon-Daniel cried.  Today Jared battled to breathe.

Sweet 16


On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy.  I cried with joy when I first saw him and that first “rush of love” hit me.

Baby Jared
Baby Jared

Vic fell pregnant 6 weeks after she got married.  When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies.  They both said “We know…”  I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.

I will never forget that dreadful Sunday night when they told us that Vic was pregnant.  My heart stopped.  I sobbed in the shower.  For the first time in her life I feared for Vic’s life.

Vicky refused flat out to have an abortion.  She said the baby a gift from God.  And so he was….

Jared is an amazing young man.  According to our government he is now old enough to vote, get his learners licence for a motor bike and work…  I look at him and I see a little boy who was going to be a stuntman;  a young child helping his Mommy cook;  get out of bed; walk down stairs…

Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.

Jared is a “computer nerd” with a wonderful personality.  He has a keen sense of humour and wise beyond his years.  He is fiercely protective of his mother.  A very dear Saudi friend of mine says Jared has a “white heart”.  (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).

Vic, once again, managed to get out of bed.  She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left.  Laughter and joy reverberated through the house.  Vic was the proud mother. It was a happy home for the day…

The boys have a hard time coming to terms with the stage that Vic’s illness is at.  Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”.  He researches every symptom and sends me links on liver and renal failure.  He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school.  The subject was “My Hero“.  We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom.  (His brother followed suit two years later)

He said that his mom is his hero because despite the fact that she is so ill she still looks after them…

Jared and his Mommy
Jared and his Mommy

Jared had a wonderful 16th birthday.  He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.

She ain't heavy - she is my mother
She ain’t heavy – she is my mother

Yesterday was a milestone in Vic’s life.  I fear it may be the last she will reach.  It is clear that Italy will not be possible.

I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom!  She feels it is “disrespectful”.

Mother and Son
Mother and Son

As much as Vic resents the fact I may have to bring in a night nurse.

I remember Vic’s 16th as if it was yesterday.  Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth

https://tersiaburger.com/2012/08/27/kidney-stones-on-the-move/

https://tersiaburger.com/2012/10/10/i-am-taking-a-break-from-your-blog/
https://tersiaburger.com/2012/07/07/chronic-illness-versus-terminal-illness/
https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/
https://tersiaburger.com/2012/06/09/9-6-2012/
https://tersiaburger.com/2012/10/16/and-the-winner-is/

The right to live with dignity


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I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/