She Died on a Monday

This post was written by a mother whose daughter died from doctor error – just like Vic. This mother’s daughter suffered for 8 years before she died… Vic suffered for 4027 days after her blotched surgery. https://tersiaburger.com/2013/02/22/4027-days/

Where's my kid?

In the seven years leading up to my daughter’s death, she suffered through hundreds of hospitalizations. I use the word “suffered” and I mean it. When I’d get the call from her husband in her distant city telling me she was once-again hospitalized, I’d do a quick survey of where we were in the week. Tuesday to Thursday = probably okay. Friday to Monday = disaster.

And now we have a new television show, entertainment, if you will, from the TNT network entitled “Monday Mornings” and penned by CNN’s top medical guy, Dr. Sanjay Gupta, which explores something all-too-many of us are all-too-familiar with: Medical mistakes.

My concern over the “entertainment value” of such a television show bumps up against relief. Real people with real lives and real families that love them die in real life versus now people will know some of the truth. The problem is that real…

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I think God hates me?

http://risenetworks.org/2013/04/19/lovin 1

Over the years I have been deeply hurt by people of faith and religious institutions’ i.e. churches. I have spent many years of my life researching religion, seeking answers to my questions; to life’s twists and turns.

I believe in God. I believe in life hereafter. I believe that what we are living is hell and that heaven awaits us. I believe we are on earth to learn lessons, perfect our souls. I believe that we will return to earth until we have perfected our souls.

The “mind switch” was Passion of the Christ. I cried for three days. It was the most barbaric thing I had ever seen. I could not and cannot equate that to love. The other “mind switch” was the lovelessness of most “deeply” religious people. So I look at religion and this is the conclusion I have come to…

“Love” is The Big Commandment…. Matthew 22:36-40 NIV Love the Lord thy God with all your heart, and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it. Love your neighbour like yourself. All the Law and Prophets hand on these two Commandments@ Love God Thy Father and the second commandment that is equal to it “Love Thy neighbour”…

Love Thy Neighbour is quite a mouthful. Who is my neighbour – the person who lives next door to me in his multi million rand house or his domestic worker living in a room the size of a stamp on his premises? Maybe “my neighbour” could extend to the socio economic group that I equate to in my suburb or city? Hells bells, if I am generous the rich in my country may qualify…. But the people with different pigmentation and less money? No, no no!

Now let me spell it out. The way I see it

If God is a God of Love would He truly condemn people to eternal hell for not believing a particular version of religion? I know so many wonderful Muslim people who have “white souls”, who are kind, compassionate and generous. They would never deliberately harm a fellow human being. I know many beautiful Christians who are kind and compassionate and generous. I know that in a country like Saudi no money will exchange hands whilst it is Salah (prayer time). Restaurants and shops CLOSE for prayer 5 times a day and if you are not praying you will stand around in the passages of the shopping centre. You will not even be allowed to remain in the restaurant.

In my country and everywhere else in the world people of other religious groups will drink too much and talk about Muslims in a derogatory manner. They will call them heathens… They will lie and steal but take the religious high ground because they are “Christian”. And by the way, please do not inconvenience them and their social life by getting ill….If you are so inconsiderate – please die quickly so their lives can move along at it’s comfortable, fun filled pace.

Worldwide racism is alive and well. Where there is no racism it is tribalism, elitism that keeps hate flowing through the world.

For many years I did so-called “charity” and evangelism work in the poor rural areas in South Africa. Today I admit I am ashamed that I was so sanctimonious to think that I was needed to evangelize the poor. What do you say to a child who is freezing and hungry when they accept the Lord? “God is going to make your life better!”…That would imply that all of a sudden that child would have at least 3 meals a day, a bed and blanket, medical care and a good education…

Let me tell you, so-called evangelists hit and run. They convert and leave. There is no sustainability in what they offer. Most of their efforts are self-serving. Tomorrow that child is going to be cold and hungry and think “that woman of God said God would bless me…Why has He not done so? He must hate me…”

So, I ask the question…who is the “woman of God”? The self-appointed evangelist or the impoverished next door neighbour who shares her last crust of bread with the hungry child?

I don’t believe that there is a single religion that is “right.” There is good and bad in all religions. There is good and bad in every person!

The Catholic’s decided which books were to be in the Bible. The Qur’an is a modified version of the Old Testament. The Torah is another modified version of the Old Testament.

I know there will be a reaction to this post. I know many people will “unfollow” me after this post. That is fine. It is your right to decide what to read. It is my right to write what I believe and have experienced.

Vic often asked me “Mommy, why do you think God hates me?”

The Church deserted Vic. Christians deserted Vic. Family deserted Vic. Friends deserted Vic. Even the most religious of religious did not have enough compassion for my child to lift a phone and ask “How is your child doing?” or “I am sorry to hear about her passing”. Family, yes you read correctly, did not even sympathise. What a cold God they must serve? Yet these righteous self-serving stone-Christians point fingers at others for not being “obedient” to God’s Word. Surely not the Word that says “Love thy neighbour”………

There is pain after death

On the 10^th of October 2012 I posted this:

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.

My Mom died a bad death! Two weeks after major surgery she died an agonising death from septicaemia. We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you but we will also be at peace… We will think of you and smile…

It is okay to let go my angel child.

Preparing for Vic’s death was not easy. It was however a breeze compared to the actual pain after Vic died.

In a way I supposed I almost romanticized Vic’s passing. I knew that I would miss her. What I did not know is how much….I did not know that my mind would block out the suffering beforehand.

I thought I would always remember her cries, her tears, and her pain. I did not realize that I would forget her cries, pain, tears…. I remember her shuffling little footsteps down the passage, her soft kisses on my cheek, her gentle nature, her laughter…

I thought I would be relieved that her suffering was over – Nothing and nobody could have prepared me for the huge void in my life.

Today I know that there is excruciating agony after death. For the living…

I wrote “We will think of you and smile…”

Vic, today I know we think of you and cry… selfishly I don’t have peace.

Chaka’s is not the same without you. Nothing will ever be the same without you my Angel.

I miss you so much!!!

I am waiting for a sign

I came to Chaka’s Rock with the intention of scattering some of Vic’s ashes here. The rest we would bury in her Angel Garden at home.

When we arrived we went shopping and came back with beautiful flowers. Vic’s photo and ashes are in the dining room that has a beautiful view of the ocean. Her flowers next to her…

Somehow I have just not been able to make my way down to the beach with Vic’s ashes. I know that I will receive a sign from her that this is what she wants… When a white feather finds me I will know it is the right time and place.

Vic and I often spoke about what to do with her ashes.

“Mommy, you can decide what to do with my ashes…”

“What would you want me to do with your ashes Angel?” I would ask

“You can decide Mommy. You can put me in the Wall of Remembrance with my Father if you want?” Vic would reply

“Maybe we will just make a memorial garden for you and keep you with us…” I would say

“Oh, that would be good Mommy!” Vic would say “That is what I would do for you…”

I am waiting to see if a white feather finds me…

New memories…

Funny/scary faces... — Funny/scary faces…

Chaka’s Rock 2013

A Mother’s Love for her Sons

A year ago I posted this. As I said in my previous post – Chaka’s 2012 is a separate story. I am reposting the separate story…

I have been researching the effect of a mother’s illness on her children. The boys are two beautiful, well-adjusted, honest and compassionate young men. Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life. At the tender age of thirteen Jared was cooking for the family… This must certainly have an effect on how the boys perceive relationships with people.

Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their

parents. They in effect become parents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.

“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.” The boys, especially Jared, falls into this category 100%. When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode, At the time I thought it to be extremely unhealthy that he already has this caregiving character trait. He used to always make the tea and offer to do so much around the house and for his Mom.

I have put a stop to this. I pray it is not too late for the boys to adjust to a “normal” household…

It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother. Vic has raised her sons to be respectful.

“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”

Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday. When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again. This is what Vic does.

Before Jared was wheeled into theatre he whispered into his mom’s ear. She took his hand and said “I promise”.

Vic, drip in hand, walking with Jared to theater!

The surgeon said the operation would last two hours. Vic dutifully went back to bed and rested. One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son. I begged her to at least sit on the chair, but she refused. “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”

It took a superhuman effort, but Vic’s love for her son drove her to keep her word. It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own. As Vic did. As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.

The vicious cycle of anger truly rose to the occasions on Wednesday. I got angry with Vic because she was not putting her health first! I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother. I want to wrap her in cotton so she would be spared that extra day…

Yesterday Vic said she doubted whether she would see the end of the year. She is however adamant to be at Jared’s confirmation…one more goal…

Go Girl!!!

Well, Vic is home. I am so grateful. She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!

I Grieve – Peter Gabriel

it was only one hour ago

it was all so different then

there’s nothing yet has really sunk in

looks like it always did

this flesh and bone

it’s just the way that you would tied in

now there’s no-one home

i grieve for you

you leave me

‘so hard to move on

still loving what’s gone

they say life carries on

carries on and on and on and on

the news that truly shocks is the empty empty page

while the final rattle rocks its empty empty cage

and i can’t handle this

i grieve for you

you leave me

let it out and move on

missing what’s gone

they say life carries on

they say life carries on and on and on

life carries on

in the people i meet

in everyone that’s out on the street

in all the dogs and cats

in the flies and rats

in the rot and the rust

in the ashes and the dust

life carries on and on and on and on

life carries on and on and on

it’s just the car that we ride in

a home we reside in

the face that we hide in

the way we are tied in

and life carries on and on and on and on

life carries on and on and on

did I dream this belief?

or did i believe this dream?

now i can find relief

i grieve

–Peter Gabriel

Vic, embedded in my heart and a building’s cement

Today the concrete foundation was laid of our Stepping Stone Hospice’s building.

It was a “moment” when I saw the concrete being poured. The builder, bless his soul, ordered extra cement and we now have a veranda area as well as a concrete path where our patients will leave our building for the last time… We also received a donation of a oxygenator.

I asked the builder if I could put a photo of Vic’s into the foundation of the building. He thought it was a wonderful idea. I phoned the boys, and they brought me their favorite photos of Vic and I. We placed it in plastic sleeves and embedded it in the foundation. It was covered with concrete.

Vic has been immortalised in the foundation of Stepping Stone Hospice.

Perhaps because Vic was cremated, it was an emotional moment for all of us seeing her being “buried” in cement. I know it was purely symbolic, but it was sad.

The boys and I huddled together and wept.

One day less

I am glad the day is over. I am grateful that I am one day closer to being reunited with my precious child.

Tonight I fulfilled one more of Vic’s wishes.

Twenty five years ago Vic was the bridesmaid at my brother and sister-in-laws wedding. She looked beautiful in a real grown-up pink dress… They gave her a string of perfect little pearls which she treasured and wore on very special occasions.

After Vic died I came across the string of pearls with a little note.

The note read: “25 years ago Johan and Henda gave me these because I was their bridesmaid. I would like to now return it to them…”

She wrote them a note telling them how much she loved them. She told my brother that he was her hero. She told my sister-in-law that she was amazing….

A lifetime of sadness

I am so tired of being sad. I am so terribly tired of missing my child. I miss our easy friendship, our laughter.

I miss laughing!

I miss being happy.

I miss looking forward to tomorrow…

The pain is just too much. I cannot bear the longing any more.

The sad thing is that I have a lifetime of sadness ahead of me.

My beautiful child

Vic’s letter from Heaven

Today it is 5 months since Vic died. I am trying to get Vic’s estate done (not doing well at all!!) and came across a file with a letter addressed to me.

It flashed through my mind…”A letter from heaven!”

It is not a recent letter. It is a letter that Vic wrote years ago. How do I know? It was with her old Last Will and Testament.

I am grateful for the letter. I am heartbroken that I am reading it.

I love you always and forever my Angel Child.

When tomorrow comes

I wish that…

Someone wrote a poem for me. I am grateful for the hand of comfort that was extended by a stranger. This stranger happens to be ill and suffer debilitating pain.

I was so touched! Thank you Belinda!!

13JUN2013 by http://busymindthinking.com/2013/06/13/i-wish-that

I wish that I had known you
when you struggled with your pain
but I didn’t know your situation
oblivious even to your name

I wish that I could have offered
an embrace when tears you cried
saying goodbye to your loved one
filled with sorrow when she died

I wish that things had been different
and that she didn’t have to leave
I wish most of all kind stranger
that you have comfort when you grieve

Never Alone

This was my song for Vic. I played it for her all the time. We spoke about the words and the meaning of the words.

Today it is 21 weeks since I have been able to touch my child, hold her, brush her hair. I know that she is around me, but I feel so alone without her. Vic was my dearest friend, my companion, my daughter, my soul mate.

Yes, Vic is in my heart. Not a minute goes by that I don’t think of her, miss her…. But I really want her to be with me. When will this pain end? When will I come to terms with the fact that I am alone now.

Yes, I know I am surrounded by people who love me…I know they are worried about me… But nobody can fill the void that Vic’s death has left.

I feel alone even when I am surrounded by lots of people, family….

Nothing in the world could have prepared me for this thing called “grief”. This devastating sorrow.

This weekend I will work in the garden and start preparing Vic’s Angel Garden. I don’t want my child in a friggin garden – I want her in my home. I want her sneaking up behind me and kissing me on the cheek. I want to hear her voice saying “I love you Mommy”. I want to tell her how much I love her.

I want to hear her talking to her boys. Telling them she loves them the “mostest in the world”; reminding them to brush their teeth

I don’t want to feel this sorrow and pain. I want to be happy again.

Category: Death of a child