Vic is sleeping peacefully


IMG_4860

It is 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.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

We need a miracle again….


Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they will “host” our Hospice at their premises.

The CEO knows Vicky and the boys.  Jared was confirmed in his church earlier this year.

I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain.  Vernon (CEO) quietly listened to us and explained how difficult fundraising is.  Christians are tight with their money…

Vernon then shared the following with us.

“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky.  I knew she was in hospital as she was on the prayer list.  I drove to the Donald Gordon (Hospital) and was directed to the ICU.  The nurses welcomed me although it was way past visiting time.”

“Pray for her.  We are switching the machines off tomorrow morning…” they said.

I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys.  I stood next to a dead person that night.  Two days later I heard that Vicky did not die when the machines were turned off…”

I just stared at him.  I was speechless…  I had no idea!   It was the first time I had ever heard the story!

In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula.  Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer.  On the Tuesday Vic went into respiratory failure and was ventilated.  I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator.  By the Thursday her kidneys and liver had started shutting down.

ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit.   http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome

My BFF, Gillian drove 350 kilometres to be with me.  On the Thursday there was absolutely no sign that Vic could or would recover.  Vic had a DNR and a living will that she had provided the hospital.

That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired.  You must let her go…”

Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys.  They were already in bed when we arrived home.  We sat with them

Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own.  Mommy’s kidneys and liver is also not working that well anymore.  The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much.  They think it will be better for Mommy to be taken off the machines…”

Jared quietly started to cry.  Jon-Daniel was stoic.  Jared was 10 years old and Jon-Daniel 8 years old.

“What will happen with us Oumie” Jon-Daniel asked.

“Sweetie, Oumie and Oupie will ALWAYS be here for you.  This is your home.”

Jared cried himself to sleep.  Jon-Daniel just clung to me.  The three of us shared a bed that night.

The next morning early Gill, Lee and I set off to hospital.  When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”

The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.

Family and friends drifted in and out of the waiting room the whole day.  My minister came and prayed for my child.  Everyone said goodbye.

That afternoon Danie and I were allowed to see Vic.  The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face.  It was a grotesque sight.

Danie held her little hand and his tears dripped onto her arm.

Oh sweetie” he said, the sorrow and pain raw in his voice.

Vic opened her eyes and said “Daddy”….

Three days later Vic was discharged from ICU….. It was not her time.

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.

What gives life will hasten death


Courtesy of: http://www.flickr.com/photos/violetteultracore/7442358584/lightbox/

 

I am so tired.  I think it is emotional more than physical.

Vic went to the movies with her friend Tracey today.  As she wanted to leave, Hospice arrived.  Sr Siza was VERY dubious whether she should go…  Anyway the boys went with to make sure she was okay.  They are so protective of her.

When Tracey dropped her at home she was so tired she could not lift her feet.  She immediately got into bed and I know it will take days for her to recover.  I am grateful that she enjoyed the movie.  I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!!  She is the most anti-vampire person I know!

She said “Oh Mommy, the one part was scary but it was so much fun!”

I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure.  We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.

I don’t care.  I want Vic to be as pain-free as possible.  It is becoming increasingly difficult to do so.  She is literally on a “morphine on demand” regime.  She cannot overdose – she is too used to Morphine.  The dosages have been titrated over many years…

It will be a difficult night.

 

 

“I am sorry Mommy!”


Vicky constantly says “sorry Mommy.”   She says “sorry Mommy” when she vomits, when she is in pain, when she is ill…

Then there is a flood of “thank you’s”….. Vic says “thank you” all the time!  It drives me mad! I don’t want her to apologize for being ill and I don’t want her to continuously thank me.

Vic’s situation, our situation as a family, is unfair, arbitrary, frustrating and so sad.  Vic is blameless, helpless, a victim of poor sick genes and doctor error.

I know that Vic is sad about her situation.  I know that Vic is sad for what the family is going through.  She is sad because she cannot be the mother she wants to be.  She is sad that she has a lonely, sad life devoid of partner love, physical love and friendships not based on pity.  She sad because she does not have a social life and neither do we as a family.   Vic is sad that she is dying in the prime of her life.  Vic is sad that she has achieved so little in her life (by her standards only).

We no longer have lunches with friends, outings or holidays.  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….

A mother’s love is a glimpse of heaven – Joseph E Beck


A new born Jon-Daniel

Today was another milestone for Vic and the family.  Jon-Daniel turned 14 and he woke up to his loving mother’s birthday wishes and kisses.

I could not help but think back to the day he started “big” school.  Vic was violently ill but refused to be admitted to hospital before Jon-Daniel was taken to “big” school and settled into his new class…  Seven years ago she placed her own life at risk to take her son’s hand in hers and lead him into a scary new phase of his little life.

Vic kneeled next to his little chair and told him school was going to be one of the greatest adventures in his life.  She told him she loved him and he was in good hands.  His brother would look out for him at break.  He had to concentrate and listen to his teacher.  “Mommy will see you after school” she promised.

When we left the classroom Vic collapsed.  Colin took her straight to hospital.  Silent tears ran down her cheeks.

“Mommy, please bring the boys to hospital this afternoon.  I promised Jon-Daniel I will see him after school.”

I do not remember the exact details of that particular hospitalization episode but I do remember what a milestone Vic reached that day…

Yesterday my little girl dragged her body out of bed.  When Vic and the boys moved home a year ago I bought her a doughnut-making machine.  She had not used it.  Jon-Daniel loves baby doughnuts and keeps asking her when they are going to make doughnuts.  So, Vic made baby doughnuts with Jon-Daniel yesterday afternoon.  It wasn’t a big batch but she was absolutely exhausted and in terrible pain after she finished his “birthday doughnuts”.

I wonder if he will ever realise what a superhuman effort it took for his mother to make him birthday doughnuts….

Vic bought Jon-Daniel a sound system for his 14th birthday some time ago.  It has been wrapped and ribboned for a while.  I am so grateful Vic was able to give it to him, in person, this morning….  He was absolutely delighted!  The boys had to go to their Dad this evening so Vic made the decision to take Jon-Daniel out of school early today.  We did not have the normal “tea and cake” thing at home as we simply did not have enough time.  We went to lunch and had a wonderful time!  We screeched with laughter.  The boys joked with Vic because she is so short…. (She loves being ragged about her (lack of) height) and the boys love humouring her!

“Mom can’t do a ‘high five’ Oumie – she is too short…”  They just carried on and on joking with their mom.

Late afternoon, after the boys left, Vic and I quietly sat basking in the milestone day….

Vic said “You did not blog last night Mommy….”

“I know sweetie.  I did reblog the article on Meredith Thomas. (https://tersiaburger.com/2012/10/11/lots-of-tears-with-less-than-a-few-months-to-live/ ) I was too sad to blog after reading that article.  It really affected me you know…”

“It is so sad Mommy.  I wish I could write to her and tell her what an inspiration she is to me…” Vic said.  “I am so scared…. I have a hollow feeling on my tummy.”

We just sat in silence.  I held her little hand knowing what she was saying.  I did not have words for my little girl.

“I have such a good idea for your Christmas gift but I need the boys to help me.” she said

“Well, in 6 weeks’ time the boys will have finished their exams and they will have lots of time to help you.” I said

“I can’t wait that long Mommy.  My health is too precarious.   I must do it now…..”

With a hollow feeling on my tummy I wonder whether we will reach our next milestone….

This is Vic’s Journey


Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.

 “I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy.  We have always been so close….” Vic lamented this past week.

I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….

Knowing that death is imminent is takings its emotional toll on all of us

Vic said tonight that she has never been more scared in her entire life.  She is scared of being “isolated” from us.  She fears that we will not cope.  She is so scared of the pain.  She is so scared of leaving the boys behind….

I blogged on Vic’s fears before.  https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012   That blog was based on some research and actual observations.  Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months.   For the worse!

The good thing is that Vic is actually sharing her fears with me.  Tonight we prayed over her fears.  Vic, at last, is dealing with her fears.

Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad!  Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it.  Vic over the past couple of months has lashed out at the boys and I.

Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.

Vic feels guilty about being a burden on us.  She also feels guilty that she will be leaving her children behind.  Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident!  I told her that I felt guilty for yelling at her when she was 4 years old.  Until my dying day I will always remember the fear and confusion in her dark brown eyes….

Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…

We spoke and I told Vic that we simply have to let things go.  We cannot change the past.  We must fix what can be fixed and try to let go of the things that cannot be changed.

Vic is stressed that Jon-Daniel and she have drifted apart.  He is angry with the situation.  She wants to spend time with him to rebuild their relationship.

Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already.  The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.

Vic has had many physical and emotional losses which have come before the loss of life itself.  Yet she has gained some things too.  She is seeking spiritual peace, a new relationship with her God.

Hospice has given Vic Azor for the anxiety.  I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure.  She is getting her life in order.  Over the years we discussed death as a natural extension of life….  Now she is discussing her funeral with me.  Psalm 23 ans 1 Cor 13 will be the readings…  What I will dress her in… Her pallbearers…

I sense a loneliness of the heart in Vic.  I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly,  whilst her son suffered carrying The Cross…  She had to stand by and watch Him die the cruelest of cruel deaths…

Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time.  Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”

God please have mercy on my child.

Skin to Bone 13.8.2012


This morning, when I checked the BBM status’ of my loved ones,  Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status.  I did not realize that it was a song’s lyrics and wondered about the weird status.  Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”

After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before.  Obviously I hadn’t but even if I had,  I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!

He spoke about the lyrics and I asked him whether the song reminded him of his Mom.  He said “I suppose so.  When I first heard the words I thought of Mom”

Back home I downloaded the lyrics.

Linkin ParkSkin To Bone
Skin to bone, steel to rust
Ash to ashes dust to dust
Let tomorrow have it’s way
With the promises we made
Skin to Bone, steel to rust.
 
Ash to ashes, dust to dust
Your deception, my disgust
When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Right to left, left to right
Night to day and day to night
As the starlight fades to grey,
I’ll be marching far away
Right to left and left to right
 
Chorus:
(Aaah) Ash to ashes, dust to dust
(Aaah) Skin to bone and steel to rust
 
Let tomorrow have it’s way
With the promises betrayed
Skin to bone and steel to rust (x3)
Lyricsfreak.com © 2009

 “Skin to bone, represents her frail body to him.  “Steel to steel” her steely hold on life!  Her refusal to give up.  Ashes to ash, dust to dust”….. the inevitable

 “The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part…  The promise is not supposed to end in his early teens.

“Your deception, my disgust…..”  relates to his feelings of betrayal.  In a way he perceives his Mom’s ill health as a betrayal.  His Mom is not supposed to be this ill and suffer the way she does.  Vic was supposed to be a healthy Mom.  Their lives were supposed to be “normal.”  “My disgust” …. the despair of his life…..Anger for his mother’s suffering!  Disgust with the medical system failing her.  Anger for the OI gene.  He is unable to understand all the “why’s”.

 “When your name is finally drawn,
I’ll be happy that you’re gone
Ash to ashes, dust to dust.”

 Jared absolutely adores his mother.  He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does.  I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body.  So my precious grandson joins the song and broken hearted sings along with Linkin Park

 “I’ll be happy that you’re gone.  Ash to ashes, dust to dust….”

What can we hope for when there is no hope?


When Brendan (Vic’s gastroenterologist) took me into the passage, outside Vic’s hospital room, and said “No more.  This is the end of the road” my heart stopped.  How can there be no hope?  Brendan has been so brave until that moment.  It was not easy for him to sentence Vic to the “No Hope” section of her journey.

Where does hope live when we hear the words announced to us, “There is no hope”?  We cannot return to life as it was.

Immanuel Kant, who lived and wrote in the 1700s, thought a lot about the kind of subjects we might label as “the eternal verities”: hope, ethics, God, morality, the meaning of life. Kant came up with three questions that he thought expressed the central human concerns. Here are his famous questions:

What can I know?
What can I do?
What can I hope?

What can I know?
“A large part of Kant’s work addresses the question “What can we know?” The answer, if it can be stated simply, is that our knowledge is constrained to mathematics and the science of the natural, empirical world. It is impossible, Kant argues, to extend knowledge to the super sensible realm of speculative metaphysics. The reason that knowledge has these constraints, Kant argues, is that the mind plays an active role in constituting the features of experience and limiting the mind’s access only to the empirical realm of space and time.”  http://www.iep.utm.edu/kantmeta/

 I know I can only address this on an emotional level. 

I know that life is unfair and difficult! I know we are scared – not only of Vic’s painful journey but of what lies beyond her release from pain.  I know I hate seeing my child suffer and losing her dignity. 

I know I love my child more than life.  I know she wants to live.  I know she wants to love, be loved…..  I know she wants the frustration of facing peak hour traffic on her way to work or back.  I know Vic wants a job.  I know Vic wants financial independence, a trip to Italy.  I know Vic wants to attend her sons 21st Birthday parties, see them graduate, and meet the person they decide to spend their lives with.  Hold her grandchild..…grow old gracefully.  I know Vic wants to walk on the beach, see the sun set over the sea….. 

 I know that Vic is tired of the pain.  I know she wants to die.  I know she wants to live.

 I know dying is a lonely journey.  I know it is impossibly difficult to watch Vic grow weaker every day.  I know I am tired of being sad.  I know I want the boys to be happy…..

What should I do?

I know I should honor Vic’s wishes.  I know that I should try and stay positive for the boys sake.  I should fight harder for Hospice intervention.  I should remain cheerful and snap out of my depression.  I should concentrate on the positive moments in our lives.  I should endeavor to find a way of giving Vic peace – enough peace to let go.


What can I hope?
 I wish her pain control will continue to work as well as it is now…
I hope that her suffering will come to an end.  I hope that the boys will heal in time.  I hope that we will laugh again.  I hope that Vic will find peace. 

I hope that my beautiful little girl will fall asleep and not wake up.  I hope that God will be with her when the time comes

Happy birthday Mommy! 3.8.2012


Until death do us part….

My tiny, petite little mom was born on the 3rd of August. She died on the 3rd of June 1997 from septic shock. My earliest memories of my mother are that she was a career girl. My Mom worked before it was fashionable for women to work. She loved having a career. I remember how proud of her I was as a little girl. My Mom was the “Bookkeeper” at a large German company. I used to love walking to her office after school.

My Mom had the tiniest little feet. She wore a size 3 shoe. But boy, could she put that tiny little foot down!

My Dad was fiercely protective of his wife. They were absolutely united against us kids. When Jared was a couple of weeks old we went to Bloemfontein to show him to my folks. My Mom played in a Bowls competition that Saturday afternoon. When Mom got home she was on such a high. Her team had won and she had a brilliant game. Mom sat on Dad’s lap; their faces were close together when she told him about the game. At one stage she threw her head back and they laughed….. Deeply in love, committed to one another, united in their love.

Mom died 3 months later….. Dad was absolutely devastated!

Today it is my Mom’s birthday. I wish that I could sit and have a cup of tea with her and just chat. I wish I could apologize for thinking it was absolute rubbish that she could not pluck her own eyebrows because she could not see that close….. That she had started losing her hearing in her late 50’s…

Muslims have a saying “Paradise lies at your mother’s feet”. At the feet of my mother I learnt all the values that I hold dear in my life. I wish I could thank her for the example that she set for us children. I wish I could thank her for teaching us the value of family, loyalty and unconditional love. I wish I could thank her for being this absolutely amazing grandmother to Vic. I wish I could thank her for supporting me through all my mistakes, troubled times, heartaches and joys.

I know that Mom held onto life until we as a family, one last time, confirmed her love of us to her….. We were standing around her deathbed and her time was so close! Yet she would not let go. Johan, my baby brother, said to her”Mamma, it is okay to go. You know we all love you. We know you love Daddy, Tes, Lollo and me….” Within seconds her battle against septicemia ended….

My Mom was such a brave warrior. She suffered ill health the last 20 years of her life. Mom had this amazing ability to bounce back after surgery. She too suffered chronic back pain. She adored Vic. Vic spent so much time with my parents. She was the beginning and the end of my mom’s life. I truly believe that Vic got her fighting spirit from my Mom. I often look at Vic and see my Mom. Some many of the little things that my Mom did Vic does….. Where blood does not run it gushes!

My Mom was very close to her Mother. We were very close to my gran. Mom was absolutely heartbroken when my Gran died. I think she never truly came to terms with her mother’s death. It took me 5 years before I could speak of my mom without crying. We have a family legacy of close mother and daughter relationships…

A Mother’s Love – Author unknown

A Mother’s love is something
that no one can explain,
It is made of deep devotion
and of sacrifice and pain,
It is endless and unselfish
and enduring come what may
For nothing can destroy it
or take that love away . . .
It is patient and forgiving
when all others are forsaking,
And it never fails or falters
even though the heart is breaking . . .
It believes beyond believing
when the world around condemns,
And it glows with all the beauty
of the rarest, brightest gems . . .
It is far beyond defining,
it defies all explanation,
And it still remains a secret
like the mysteries of creation . . . 
A many splendored miracle
man cannot understand
And another wondrous evidence
of God’s tender guiding hand.

. Happy birthday my dearest Mommy. I love and miss you! I know when Vic’s time comes; you will be one of her angels guiding her Home!

Vic’s final hospital visit 30.7.2012


Vic's Humerus after Five Weeks

This weekend I saw raw resentment towards me in my little girl’s eyes.

We checked into Hospital on Saturday morning at 08:00.  Vic was seriously peeved that she did not get a private room as per the doctor’s instruction.  Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language.  She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.

Then she started telling us about this wonderful neurosurgeon that she works for.  She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down!  Vic then said that she had decided no more surgeries…wow!  Did this set the neighbour off!  She took the moral high-ground and started telling us that we must have faith and God will heal Vic.  Vic was in hospital because we keep asking God to heal her.  We should only ask once and then have faith…

She laid hands on Vic when I went downstairs for a cup of tea.  I would never have allowed it!!

Please don’t misunderstand me – I have nothing against religion.  Religion is important.  I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child.  Jared said to me today “Oumie, I don’t want to be a Christian like that …”

I do not stand in judgement of anyone.  It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin?  As my friend Marlene used to say “Who died that you think you became God?”  If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians.  If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…

People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made.  They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice.  Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that?  Surely love is unconditional?  Through thick and thin?

I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…

Jared sat at hospital with us all day Saturday.  He is old enough to want to do it!  That young man adores his Mommy.  Jon-Daniel copes in a different way.  He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend.  Jon-Daniel makes Vic laugh.  Jared makes Vic coffee.

Two different boys with two different ways of coping and two different ways of expressing their love.   Yet united in their love and despair for their mother.

Vic ended up going into theatre just before 19:00 Saturday night…she was starving!!  Poor little poppet!  I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre.  HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays.  He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta!  I must add that he too had never had an OI patient as old as Vic.  So Vic had two specialists operating on her little arm.

By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.

History was made Saturday.  A doctor wrote on Vic’s file “Mother of patient to stay with her”!  In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”.  What a bright and intelligent young man he is even if he charged double medical aid rates.

Vic was however extremely angry with me because she was sent to ICU.  Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward.  She cannot be given the amount of opiates that she needs, for pain control, out of ICU.

I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control.  (Thank you Google for the fact sheet).  When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!”  She cried.  I saw the resentment in her dark, sad eyes when she looked at me.

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Vic’s Humerus Pinned and Fixed

For once I did not care.  I love my child and I will do anything and everything to spare her pain.

I have to find out which anaesthetic they used.  The last two procedures at the Union resulted in terrible aggression in Vic.  Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister.  She told me exactly what she did and did not think of me.  It was a horrific experience.  I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.

Vic ended up spending 2.5 days in ICU.  I never left her side but to go shower at home and take Jared to the urologist this morning.  The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme.  I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.

Well this is now behind us.  We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm.  That Vicky will get better and enjoy some Jurnista quality of life!

I want to blog on ICU’s and what we subject our loved ones to next.  I am just too tired and emotionally drained to even attempt it today.

I am dying 9.7.2012


Vic and JD. (JD = Jared’s Dog)

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed in 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.

I don’t know how much longer I can handle this.  The chronic pain I am used to but this new pain is pushing all of us over the edge.

Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic…  How nice is that!!  But I cannot.  I cannot leave Vic now.  Nobody knows her body the way I do.   It is too big a responsibility to hand over to anyone.    She needs lots of personal help.  Vic needs pain meds’ every four hours, day and night.  If she misses med’s she breaks through her pain levels and then it is disastrous.  What if she needs help during the night as she so often does?  What if she vomits and needs me?  No can do!!  I cannot desert Vic.  Until she breathes her last breath I will be by her side.  No matter how long it takes.

Many years ago I promised Vic that I would not let her die alone.

When Jesus was praying in Gethsemane his disciples fell asleep on Him.  I am so scared that I will fall asleep on Vic in her final hour.  I don’t think Vic is near the end.  I have been around dying people enough to know the signs.  But she needs me now.

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.