When the soul leaves the body


http://www.youtube.com/watch?v=auoJV4re3nU
http://www.youtube.com/watch?v=auoJV4re3nU

When a child is born we laugh, cry with joy and celebrate; when a loved one dies we cry with heartbreak and mourn.  We spend a lifetime celebrating life.  Grief too deserves time, attention, honour and embracing.

Grief is painful, yet it gives us a glimpse of Heaven – afterlife… Life after death…

I have seen a quite a few people die.  Mostly very close family… my mom, my mother-in-law, my dad and my precious child.  I have seen strangers die – patients in TB hospitals, AIDS patients in hospital; a young man burning to death after a car accident…

My Mom died when she developed septicaemia from surgery.  She was confused from the raging fever and the infection ravaging her little body.  Mom knew that it would be her last surgery.  She said that she would not survive the operation and was prepared for death.  Mom died with my dad and us kids standing around her bed – taking turns to pray for her.  Like Vic she fought for life until death won the battle.

The day my mom-in-law died I sat next to her bed.  It was just the two of us.  I asked her whether she was scared.  She smiled and shook her head.  I know that she looked forward to death…to the afterlife.  Hours later when this gracious lady just stopped breathing her children and I were standing around her bed.  We were singing her favourite hymn.  Her death was gentle and dignified.

My Dad was not aware of the fact that he was dying… He developed Alzheimer’s pneumonia and gently lapsed into a coma.  My dad just forgot how to breathe.  If he was aware of the fact that he was dying I think he would have been surprised.  He did not “know” he was dying.  I know he would have been grateful that he had been spared that final indignity of Alzheimer’s.  He died the way he lived – with dignity and gentleness…

My precious child died fighting.  She had so much left to do.  She had children to raise.  Vic, like my mom, did not know how to not fight to live another day…

I suppose we all have pre-conceived ideas of how people should handle death emotionally and spiritually.  For years I would ask Vic whether she had asked God for forgiveness and mercy before she went into theatre for more surgery…Later in life I thought how stupid of me.  Vic lived a life, obedient to the greatest commandment – To love God with mind, body and soul….and her neighbour… I knew that Vic had made peace with God.  In death Vic requested Last Communion…  Her spiritual rituals were taken care off.

Vic said her goodbyes.  It was heart-breaking for everyone who loved her.  She needed to hear that we would honour her memory, not forget what she represented in life.  She needed to hear that her sons would remember her as their Mother and not use her as an excuse.  She thanked people over and over for their friendship and love; their caring and loyalty…

Nothing was left unsaid.    I read somewhere “something said or not said, something you wish you had done differently, can stick inside you like a splinter.”

The scenes of death that I have witnessed and lived through were sacred.  I saw souls depart from the bodies of my loved ones… I saw that there is more than life-sustaining organs to a body.  There is a soul…There is no comparison to the appearance of the body after the soul has left the body.

I saw Vic’s father’s soul leave his body five days before he was declared brain-dead.  I was standing next to his hospital bed asking him for forgiveness.  I realised standing there that I was not the only one who suffered from our divorce.  I realised that I too had caused him pain.  I spoke to him about God and Heaven – I prayed for him.  One bloody tear ran down his check.  He continued to breathe on the ventilator, but I felt his soul leave his body.

The willingness to sit at death’s bedside – to embrace the loss experiences in our lives – opens a window into Heaven.  I do not fear death.  I know when my time comes I will embrace death knowing that I will be reunited with my child, my parents, loved ones, friends…the ones I leave behind will eventually follow and join us.   When something leaves it goes somewhere.  It is a displacement of energy.

Now I am between birth and death.  Heaven awaits.

Some of my related posts and other great reads:

https://tersiaburger.com/2012/10/29/one-bloody-tear/
https://tersiaburger.com/2012/08/03/happy-birthday-mommy-3-8-2012/
https://tersiaburger.com/2012/07/18/487/
http://humansarefree.com/2011/03/russian-scientist-consciousness.html
http://www.youtube.com/watch?v=auoJV4re3nU
http://jimmyakin.com/when-the-soul-leaves-the-body
http://www.arachimusa.org/Index.asp?ArticleID=61&CategoryID=359&Page=1

 

Jon-Daniel writes…I wish


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Jon-Daniel is going through a rough time.  He posted this on his Blackberry Status.

I wish there were visiting hours in Heaven.  Miss you my little angel.  We all do!

Hamba Kahle Little One…


Friday evening we duly said goodbye to young Izak.  My heart is at peace.  His forever-parents are a wonderful couple.  The Dad refers to Izak as his “first-born” son and the Mommy glows with pride when he does something cute (which is all the time).

I am so grateful that he will be going to a loving home.  The parents are intelligent, sociable and gentle.  The Mommy seemed a little uncomfortable changing and feeding him, but I think she may have been a little intimidated by our presence.  The Dad was born to be united with Izak.  They even look-alike!

The precious little angel was at his best behaviour.  It is as if he knows something is brewing….

Lani is such a kind, gentle soul.  She arranged a “Stork Tea” for the Mommy.  Some of her friends made up little gift parcels, and Lani packed one of each of his cereals, Purity, finger biscuits, medicines etc for the Mommy with detailed instructions.  She also made a beautiful “First Bible” with Izak’s photos in it!  The Mommy cried!

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His Oumie (that’s me) bought him a jean, baseball jacket and in African Tradition – a blanket.  I hope that when he is wrapped in his blanket at night he will feel loved and cared for, even when we are gone from his life.

I did cry when I kissed him for the last time.  I felt good knowing that he has forever-parents that love him and who will cherish him.  I can see he will be their pride and joy!

Tuesday at 1 pm Lani has to kiss baby Izak goodbye.  I know she will be heartbroken.  She has such a special bond with him!  He looks at her with absolute adoration in his bright brown eyes.  I know the girls will be heartbroken for losing their little “brother”.  Tom cried on Friday night when he prayed for Izak and his Forever Family.  I know in his heart he had some dreams of being Izak’s “wingman” on his first night out on the town.

 Take my hand and hold it as if it is my heart....

Forever Daddy – take my hand and hold it as if it is my heart….

I pray that Lani will cope with saying goodbye.  I know how hard it is!

I salute Lani and Tom for making a difference in an incredible baby’s life!  I believe that his abandonment is the best thing that could ever have happened to him.  His birth mom made an incredible sacrifice to ensure a better life for him.  In Lani and Tom’s home he had the best possible start to a good life.  Izak was showered with love by everyone he came in touch with…He won over hearts of stone!

My wish for this adorable little boy is a life filled with blessings, love, care, good health and joy.  Izak has the potential to become president of this country.  I pray that his forever parents will cherish and nurture this potential and guide him wisely.

So my precious cherub who laughs a lot, know that you started life surrounded by love.   Hamba Kahle.  I will miss you little one.  You will always remain in my heart!  (Hamba Kahle means to “go well” or “stay well”, not really goodbye)

Tom, Lani and Girls – I salute you for selflessly loving this precious child.  You have given this little boy a chance in life.  I love and admire you for it.

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It is okay to let go my angel child.


Today was an amazing day.  I desperately miss my beautiful child.

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I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan.  I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself

“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”

I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done!  I cannot undo the lie or my decision not to go…  I will however confess if I see him again.

My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed.  There was a comment on one of my first posts…I reread the post and the next and the next and the next…  I reread every one of the 335 posts I had written.

Other times, when I reread any of my journal entries or blog posts, I teared up.  Today I did not.  I was filled with relief.

I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity.  The more I read the more I realised how selfish I was being.  I took cognisance of the fact that in the early days of my blog I was careful with my words…  Today I realised how much was never written.  I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.

Today I was grateful that her suffering was over!

Does that mean I am “over” the death of my child?  No! No! No!  But I am at peace today that Vic is free of pain…

I missed her today as I will tomorrow, the day after tomorrow, next year and forever!

Vic and I
Vic and I

23.5.2012

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…

She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

https://tersiaburger.com/2012/05/23/23-5-2012/

19.6.2012

Today was a day out of hell for Vicky.  She is deadly pale – she actually has a ghost like appearance.  She was so ill that she was unable to take pain medication and now her pain is out of control.

If I am having a hard time with this how must this poor child feel?  HOW CAN SHE CARRY ON???  https://tersiaburger.com/2012/06/19/37-years-on-death-row/

9.7.2012

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed with pain when I changed her.  Seeing my child sick and in pain, every day of her life , kills me.  I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/

12.8.2012  

Vic is still a very sick little girl.  The fact that her pain is better controlled does not mean that she is well.  If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death.  This week Vic’s amazing resilience again amazed me.  She is strong beyond comprehension!

My heart bleeds for her that her fragile body has once again failed her incredible will to live.  It is clear that she is merely holding onto life, as she knows it, with her fingertips……

I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved.  Vic will never function on any level again.  She is confined to bed relying on medication to keep her sane.  Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/

Schedule 6 medication - 28 days supply
Schedule 6 medication – 28 days supply
Rest of Vic's medication - decanted
Rest of Vic’s medication – decanted

21.8.2012  

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.                                                              https://tersiaburger.com/2012/08/21/today-was-a-bad-day/

2.10.2012                

This evening she asked if she could have her injection a little earlier.  Jared is going back to theatre tomorrow morning to have his stent removed.  “Mommy, I need to try and sleep so I can be with my son tomorrow”

It is as if her wish triggered an avalanche of events.

Vic has been projectile vomiting since, and the perspiration is pouring off her.  Her heart is racing, and her blood pressure is all over.  Her abdomen is so distended and extremely tender on the abscess side!

Vic will not be at her son’s side tomorrow when he is readmitted to hospital.

https://tersiaburger.com/2012/10/02/mommy-i-need-to-try-and-sleep/

4.1.2013
4.1.2013

14.10.2012

Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next.  When she has a good and busy day, like yesterday, she pays the price for weeks.  Vic has not been out of bed today.  She is deadly pale and drawn.

It is hard for her not having privacy.  Vic is embarrassed that I hold her hair or wipe her face when she is vomiting.  Yet she needs me with her….

We are however in this together as a family. It is a rough journey for everyone.

“I am so sorry Mommy…” …it echoes through my heart.

“I love you my angel” I whisper….                                                            https://tersiaburger.com/2012/10/14/i-am-sorry-mommy/

12.11.2012

We have already had so many “extra” years.  But the fact remains that Vic is ill.  Today she is more ill than yesterday or even last week or last month.  It is not an UTI causing the pain and fever.  Her pain control is good enough to mask symptoms.  Waves of severe nausea and cramping remain…

I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another….  I have read that it feels “uncomfortable”.  It is called terminal agitation.

Only time will tell….  Time is all we have….

How did it get late so soon?                                                                         https://tersiaburger.com/2012/11/12/how-did-it-get-late-so-soon-dr-seuss/

21.10.2012

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.  https://tersiaburger.com/2012/10/21/vics-roller-coaster/

Mothersday 2012
Mothersday 2012

14.11.2012

Vic had a night out of hell!  The nausea was vicious and unrelenting.  Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning.  I think she was a little taken aback by Vic’s condition.

Sue is an amazing person.  She was so gentle with Vic.  Vic’s heart rate is fast and her blood pressure is 101/58.  Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly.  Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.

https://tersiaburger.com/2012/11/14/a-night-out-of-hell/

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18.11.2012

Vic is having a lousy day.  She is exhausted and very swollen.  Despite the injections she has been nauseous all day.  This evening she had another vomiting bout.  Tomorrow we will see Dr Sue again.  Just maybe there is a 3rd anti-nausea type injection available

Vic also complained of a terrible “acidic” feeling.

I Googled her symptoms and found something that matches her new symptoms and blood test results.   Metabolic acidosis       https://tersiaburger.com/2012/11/18/worrying-doesnt-empty-tomorrow-of-its-sorrow-it-empties-today-of-its-strength/

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27.11.2012

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

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

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

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.                                                                                             https://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/

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3.12.2012 

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.                                                         https://tersiaburger.com/2012/12/03/we-need-a-miracle-again/

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5.12.2012

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

 “Then I can die…”

https://tersiaburger.com/2012/12/05/next-year-my-mom-and-i-are-going-to-italy/

Cellulitis
Cellulitis

5.12.2012

12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

            “I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.            https://tersiaburger.com/2012/12/05/vic-is-sleeping-peacefully/

7.12.2012

Vic’s arm is very painful.  The antibiotics have not started working yet.  Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization.  Obviously Vic need intravenous antibiotics and her tissue is too poor….

Tonight Vic had one of her worst vomiting spells yet.  It happened after 02:00am and her dinner of 7.30pm had not digested yet.  It is obvious that the oral antibiotics are not being absorbed.  https://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/

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7.12.2012

I ran down the passage knowing that my poor child had vomited again.  The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets.  The food had not digested at all.  She was shivering and crying.

I cleaned up whilst Vic showered.

“I am sorry Mommy.  I am so sorry Mommy”… Vic sobbed.

“I can’t do this anymore Mommy.  I don’t want to live like this anymore….”

I eventually got into bed at 5am.  Three hours sleep used to be enough sleep when I was younger.  I think I am getting old.  I need more than 3 hours.  Maybe it is time to look at a night nurse…..

Hospice called early this morning.  The antibiotics have been changed to IM injections.  We cannot put up an IV drip.  Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained.  Vic refused.  “No more hospitals.  Mommy you promised…”

Monday morning Dr Sue will come to the house and do the procedure here.

https://tersiaburger.com/2012/12/07/the-night-was-not-over/

Vic and her Dad
Vic and her Dad

 

20.12.2012

Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

https://tersiaburger.com/2012/12/20/i-dont-want-to-die/

 25.12.2012

This is our last Christmas as a complete family.

Vic has been vomiting non-stop.  The acid has burnt the inside of her mouth.  Her derriere is so lumpy, black and blue from the constant injections.  Sr Siza popped in.  She examined Vic and started drawing up a Clopamon and Morphine injection.

“Please Sister, not my bum.  Please do it on my thigh.”

Vic no longer has an appetite.  She is sleeping at least 20 out of 24 hours.  Vic is very warm to the touch and appears flushed.  The thermometer reflects a temperature of 37 degrees C.

“Do you understand what your body is telling you Vic?”  Siza asked

Vic nodded and whispered “I do not want to die…”

https://tersiaburger.com/2012/12/25/a-time-to-be-born-and-a-time-to-die/

Jon-Daniel telling his Mommy he received his honours blazer
Jon-Daniel telling his Mommy he received his honours blazer

2.1.2013

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service.  She cried when she (again) named her pallbearers.  “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”              https://tersiaburger.com/2013/01/02/sisters-by-heart/

Jared just quietly sitting with his mommy
Jared just quietly sitting with his mommy

1.7.2012

Vic worries about the family’s ability to cope with her illness and eventual death.  When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go.  She knows how deeply we love her and what void her passing will leave in all our lives.  If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add).  She always says “I am your Mother not your excuse”

https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012/

And then on the 10 th of September 2012 I blogged the words that I want to repeat today…

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.

https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/

I promise I will go back to Alan.  I love you so much Vic!

Today I smiled.  It may have been a sad smile but it was the smile of a mother who is at peace with her beloved child being pain-free. 

The four of us on Christmas Eve 2012
The four of us on Christmas Eve 2012

Stepping Stone Hospice


stepping_stones_of_memory_by_nwwes-d3krg59On the 1st of January 2013 we started Stepping Stone Hospice & Care Services in my suburb.  We operated from my home with one highly skilled Palliative Care Nurse, a Palliative Care Doctor,  a network of caregivers, a four women steering committee,  one car and a lot of enthusiasm and energy.

Vic was our first death.  Stepping Stone was borne out of her pain and her desire to “pass it (Hospice Care) forward”.  Many years ago, I promised her that I would start a Hospice in her honour…. It would be her legacy.  When Siza looked after my Dad in his final days we “connected”.  She is a beautiful, compassionate, efficient person.  She has a gentle yet confidence inspiring disposition, and she delivered on her promise to Vic on day one.  When she came to set up the subcutaneous driver the first time she promised Vic that she would take care of her pain needs.  This she did to the best of her ability.

I blogged on this new lease of life Hospice gave Vic.  We have at least two and a half wonderful months where Vic was able to “live”… go out for milkshakes with her boys.

We have been so blessed.  Six weeks ago we were able to move into an office on the premises of an amazing charity organization called Amcare.  We now have a donated desk, laptop and printer.  We have quite a lot of donated equipment such as wheelchairs, walkers etc.  We only have one dilapidated chair but our work is in people’s homes not in offices!

People have generously donated second-hand clothes which more than provides for the pain medication that is needed to treat our indigent patients.  Through generous donations by a couple of people we have managed to pay Siza’s salary, fuel and cell phone costs.  We have been able to buy a software program that will allow us to invoice the medical aids, of patients, that have terminal care cover.

Today Trix received a phone call from a lady, our of our second-hand clothing benefactors, who asked whether we could meet with her brother….he wants to donate a building to Stepping Stone Hospice!!

Our God is a faithful God.  We have not advertised nor marketed aggressively at all.

I am speechless with the wonder of people’s generosity and love!

Please pray that this will indeed happen!

Vic, your legacy will live on.  Thousands of people will be able to live and die with dignity because you had a dream.  I love you Angel Child.  I know you are our guardian angel!!

HOSPICE BLOGS:

https://tersiaburger.com/2013/01/03/tomorrow-may-be-better-than-yesterday/

https://tersiaburger.com/2012/12/18/the-right-to-live-with-dignity/

https://tersiaburger.com/2012/11/07/life-is-good-life-is-great/

https://tersiaburger.com/2012/10/15/remission-15-10-2012/

https://tersiaburger.com/2012/10/23/and-hospice-says-go/

https://tersiaburger.com/2012/09/24/mommy-i-thought-i-had-more-time/

Fracture 39, 40 and 41…


Vic with her right leg in plaster-of-paris
Vic with her right leg in plaster-of-paris

Two weeks after our arrival in Johannesburg we celebrated Vic’s 3rd birthday.  Tienie drove my car up and was able to be with us for Vic’s birthday.   By her birthday Vic had 38 fractures.

The day of Vic’s birthday Tienie and I went for a drive looking for an ice-cream parlour as a birthday treat for her.  Vic was sitting on the backseat.  Cars did not have safety belts in 1977… a dog ran across the road, and Tienie swerved out to avoid running it over….. Vic fell off the back seat.

I immediately knew her little arm was broken.

We drove to the nearest hospital.  It was Vic’s first visit to an Emergency Room in Johannesburg.  There was a long queue of patients waiting to be seen.  I completed the paperwork and we sat down for the long wait.

Vic being a toddler we got moved to the front of the queue.  A tall, tired looking doctor took down Vic’s medical history.

“Treatment?”  he asked…

I remember thinking “Duh….. You know there is no treatment.”  But, then a spark of hope flamed up and I asked “Do you know of treatment for Osteogenesis Imperfecta?”

“No” he said

“Vicky is having experimental homeopathic treatment.  The physician treating her is Professor Majorkenis” I said

He looked at me and took out a red pen from his pocket.  In huge red letters he wrote “Homeopathic treatment” across the page.  He drew two lines under the words…

In a terse voice he instructed the nurse to take us through to X-rays.  There was no radiologist on duty, and we had to wait for the call-out radiologist to arrive.  I eventually went through to the ER and asked the doctor whether Vic could have something for the pain.  It was 2.5 hours after the event, and she was crying from the pain.

“She cannot have anything for pain.  She may have to go to the theatre.  But then you know that don’t you?” he asked in a very sarcastic tone of voice!

I went back to X-rays seething but knowing that what he said was true.  If the bone had dislocated Vic would have to go to theatre.

By the time I got back to X-rays the radiologist had arrived and was busy setting up the machine.  Vic’s cries of pain are still etched into my heart and brain when her little arm was positioned on the table.  Tears ran down my cheeks whilst I kept telling her that if she kept still it would be over soon.

The X-ray showed 3 clean fractures.  No surgery would be necessary.

We went down to the ER, and the doctor started applying the plaster-of-paris to Vic’s arm.  She was sobbing with pain.

I absolutely lost it.

“If you have a problem with the fact that my child is having homeopathic treatment you take it out on me. “

He just fixed his tired eyes on me and said nothing.

“Do you know what it feels like when your child is sentenced to death and there is no appeal system?  Western traditional doctors, like you, have offered us no hope what so ever!  This Homeopath is prepared to TRY.  That is a hell of a lot more than what doctors like you are prepared to do! ”

His eyes were big and he had stopped working on Vic’s arm by then.

“Now, if you have a problem treating my child with the care and dignity that she deserves I suggest you get someone else in here to take care of her!”

He drew up a syringe with some pain medication and said “This will just sting a little, but it will help for the pain…”

He gave it a couple of minutes and then completed the plaster-of-paris process.

Without a word of apology he wrote a prescription for pain medication.  He curtly said “Take her to her orthopod in three weeks” and walked out of the cubicle…

I lodged a formal complaint against him the following day, but nothing ever came of it.

Was I surprised?  Hell no!  Homeopathic or alternative medicine was satanic in 1977 in South Africa!  We would go to hell for it any way…

On Vic’s 3rd birthday her fracture count went up to 41…

Burnt biscuits


burnt biscuit

Before my Dad’s death in May 2011 I subscribed to a wonderful support group for the caregivers of Alzheimers Patients. http://www.caring.com   I found it to be an amazing support group filled with love, compassion, practical advice and support!  I would never have survived the journey if it had not been for the support group.

I still go back although I don’t comment often any more.  In a way, it allows me to feel “connected” to my dad.  One of the regular contributors is Granny PJ who cared for her beloved husband, Jeryl, for many years until he passed away just over a year ago.  Granny PJ also goes back but unlike me she continues to encourage and support.  Today I came across this and it was so precious that I wanted to share it…  Granny PJ found this on Facebook  and neither one of us claim this as our original.  I also found this story blogged/posted in literally hundreds of blogs without a reference to who the original writer was.

http://inspirationalparenting.com/2010/01/25/burnt-biscuits/
http://www.turnbacktogod.com/story-burned-biscuits/
http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=2746100

words…http://www.caring.com/my/group/ad20d31c/posts?utm_source=stagegroups&utm_campaign=reply&utm_medium=email&emailauth=268972:db41f6f9a:-10950

 

Burned Biscuits – A lesson we all should learn.

When I was a kid, my Mom liked to make breakfast food for dinner every now and then. I remember one night in particular when she had made breakfast after a long, hard day at work. On that evening so long ago, my Mom placed a plate of eggs, sausage and extremely burned biscuits in front of my dad. I remember waiting to see if anyone noticed! All my dad did was reach for his biscuit, smile at my Mom and ask me how my day was at school. I don’t remember what I told him that night, but I do remember watching him smear butter and jelly on that ugly burned biscuit. He ate every bite of that thing…never made a face nor uttered a word about it!

When I got up from the table that evening, I remember hearing my Mom apologize to my dad for burning the biscuits. And I’ll never forget what he said, “Honey, I love burned biscuits every now and then.”

Later that night, I went to kiss Daddy good night and I asked him if he really liked his biscuits burned. He wrapped me in his arms and said, “Your Mom put in a hard day at work today and she’s real tired. And besides–a little burned biscuit never hurt anyone!” As I’ve grown older, I’ve thought about that many times. Life is full of imperfect things and imperfect people. I’m not the best at hardly anything, and I forget birthdays and anniversaries just like everyone else. But what I’ve learned over the years is that learning to accept each other’s faults and choosing to celebrate each other’s differences is one of the most important keys to creating a healthy, growing, and lasting relationship.

And that’s my prayer for you today…that you will learn to take the good, the bad, and the ugly parts of your life and lay them at the feet of God. Because in the end, He’s the only One who will be able to give you a relationship where a burnt biscuit isn’t a deal-breaker!

We could extend this to any relationship. In fact, understanding is the base of any relationship, be it a husband-wife or parent-child or friendship!

“Don’t put the key to your happiness in someone else’s pocket–keep it in your own.” So, please pass me a biscuit, and yes, the burned one will do just fine. And PLEASE pass this along to someone who has enriched your life–I just did! Be kinder than necessary because everyone you meet is fighting some kind of battle. “Life without God is like an unsharpened pencil–it has no point

dead woman walking


Last night I had a discussion with someone who Vic loves very dearly.  This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic.  She is actually the only person that has truly travelled this horrific journey with us.  Vic has lived through many death sentences and reprieves.  Lee has been around for at least the past 7 years of Vic’s journey.  Vic has nursed Vic back to health many times and I know she cares deeply for Vic, her friend.

I discussed the various treatment options with her.  Do I insist on having a stent fitted or do I request feeding tubes?  Or do I go with Vic’s non-intervention wish?  But if I comply how do I bring calmness and peace in Vic’s life?  Vic is no exception to the rule…As Bella pointed out last night even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation.  If I allow sedation, which is against her wishes, I will silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen.  Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting.  Her breathing is shallow and her heart rate weak but very rapid.  Her blood pressure is dropping and her circulation is poor.  The liver is very enlarged.

We are past the point of no return.  Vicky is dying and only a miracle can save her.  There is no operation, no magic medication, and no nothing that can save her.

Today I again witnessed her anguish and phenomenal will to live.  I saw Vic, in my mind’s eye, Vic being escorted, in deadly silence down a long dark passage.  Her family and friends were escorting her on her final walk into the chamber of death.  I clearly saw the fear in her eyes and I could feel her little body trembling with fear.  I heard a voice saying “Dead woman walking…”

I saw her walk into an execution room, being strapped down and the needle being inserted into her little arm.  I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

It is so cruel.  For all of us.  Why do people linger?  Why don’t we all just go to sleep and never wake up?  Or die in a car accident?  Why this suffering???  I want to go to sleep and never wake up.  Life sucks!

Vic is on a mild sedation.  She is more calm and peaceful than she has been for a couple of weeks.  She woke up this evening and had dinner…half a hamburger!!  My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food.  She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!”  She wailed

“I have let down my boys.  I always cover their books…”

“Oh Jared, look!  Oupa Tienie is standing behind you…”  It really spooked the boys.  Tienie died on the 5th of November 1999…

I wish Vic was married.  I wish her biological father was still alive!  I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased.  I will silence my child’s sweet voice.  I will also silence her tears and fears.

“Dead woman walking…”

 

Gramps was here…..


Vic and her Gramps 1.4.2011
Vic and her Gramps 1.4.2011

Monday 7.1.2013  was a crazy day.  Vic was not in a good space.

Angela, Vic’s BFF came to visit.  She is not only beautiful but also a calm and serene person.  She radiates goodness.  Angela being here gives me some time because I really trust her.  I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know.  He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15th of May 2011.  He died in our home (in the very same room as Vic) surrounded by his beloved family.  At times he was a stranger in the world.   Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom.  Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill.  At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…”  I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers.  Of course, Vic immediately got a bee in her bonnet and had to get out of bed.  Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”.  She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for.  She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit.  It was touching when she spoke with Vic and apologized for coming to visit too late.  Vic was sleeping and not aware of the visit.  Joanna left with tears streaming down her cheeks.  She left a little gift for Vic

“I wrote your name in the sand
But the waves blew it away
Then I wrote it in the sky
But the wind blew it away
So I wrote it in my heart
And that’s where it will stay.”

 Siza arrived and told me that Sue would be in tomorrow morning to assess Vic.  She said Vic’s colour is very poor and the circulation in her legs bad.  Siza is of the opinion that the most humane thing to do for Vic would be to sedate her…  Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn.  My poor child’s anguish and pain sears through every nerve ending in my body.  Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end.  But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die.  Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries.  He came to visit.  I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit.  When I told her that Vic had seen Dries she burst into tears.  She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit.  Bella, a dear friend over the years, spoke to the boys with so much compassion.  He grew up in a home with a mother who was ill.  He said that the congregation has never stopped praying for us as a family.  He said the congregation carries us in their hearts.  (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family.  Someone stifled a little sob.  There was absolute peace and a Godly presence in Vic’s room.

Related posts:

Rest in peace dear friend    https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work   https://tersiaburger.com/2012/07/18/487/

At the end of the year…


IMG_9662

Reposted from Dr Bill Wooten – http://drbillwooten.com/2012/12/31/at-the-end-of-the-year/

“The particular mind of the ocean
Filling the coastline’s longing
With such brief harvest
Of elegant, vanishing waves
Is like the mind of time
Opening us shapes of days.

As this year draws to its end,
We give thanks for the gifts it brought
And how they became inlaid within
Where neither time nor tide can touch them.

The days when the veil lifted
And the soul could see delight;
When a quiver caressed the heart
In the sheer exuberance of being here.

Surprises that came awake
In forgotten corners of old fields
Where expectation seemed to have quenched.

The slow, brooding times
When all was awkward
And the wave in the mind
Pierced every sore with salt.

The darkened days that stopped
The confidence of the dawn.

Days when beloved faces shone brighter
With light from beyond themselves;
And from the granite of some secret sorrow
A stream of buried tears loosened.

We bless this year for all we learned,
For all we loved and lost
And for the quiet way it brought us
Nearer to our invisible destination.”

~ John O’Donohue

 

 

 

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!