Vic succeeded at life…


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

so sick

Vic in 2007

DSC_0531.JPG

Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

Image (172)

… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

A

…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

Vic’s monuments…

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

 

Vic loving World Cup 2010

……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

 

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

850 days


It is a mere 850 days since Vic died.  2 years and 4 months seems so short… 850 days seems far more representative of the longing.  It seems “longer”….

I woke up this morning with tears pouring down my cheeks.  I so longed to hold my child.  I know that the boys remembered too.  Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!”  The first to “like” his post was his brother.

I imagined that the longing would get better.  It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill.  I always felt guilty at the “reprieves” I had when I was travelling for work.  Now I would give anything and everything for just an extra minute with my child.

It was hard standing next to Vic’s bed hearing her cries of pain.  It was even harder seeing the despair in the eyes of her precious boys when they stood next to their mom’s bed helpless to ease her pain and fears.

So often over the years I wanted to run away.  In the end, when Vic cried from fear of dying, I felt the need to put an end to her suffering well up in me.   I put my hands over my ears and screamed in my head.

Vic and her Dad
“Don’t leave me Daddy!  I am scared!”

How do you answer your child when she cries “I am so scared”?

We have a patient at Hospice who vocalises her fear the way Vic did.  Today I just held her.  How do you still the fear of the unknown in a dying person?  And NO!!!!  It has nothing to do with religion.  Everybody is scared.

From that dreaded moment when a patient is told they are terminally ill an avalanche of shock and fear hits them.  It is called actually “named” – terminal fear.  Vic (and Elizabeth*) fear dying, pain, saying goodbye, loss of control and mostly all-encompassing the fear of the unknown.

Vic’s overwhelming fear was that people would forget her – that she would be replaced….  Vic questioned her life’s worth.  She did not work and in her mind that meant it that she had not achieved anything.  That she would leave no legacy.  No matter how many times we reassured her that she inspired hundreds of people worldwide, the fear never left.  I hope that she now knows how powerful her legacy is!  That hundreds of patients have benefitted from her death wish and, most importantly, that her sons are her true legacy.

I have witnessed that grieving starts the moment of handing down the sentence.  It is a long and hard journey for the dying person, their loved ones and friends.

And, today that Elizabeth’s* fear rests heavy on my heart, I know that we will provide her a safe haven where she can relax into death.  We will hold her hand and guide her family through this dreadful trauma of saying goodbye to a wife, mother, grandmother and friend.

I pray for wisdom and strength to handle the déjà vu of Elizabeth’s* final journey.

 

 

Rest in Peace Angel Child


Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.

“Rays of hope” I thought.

I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…

Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.

This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.  Alberton-20120114-00781  Image (178)

55

So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…

I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.

I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.

Rest in Peace my Angel Child. You are ALWAYS     in my heart.

120313_0514_MotherhoodD3.jpg  Image (205)Image (177) Image (209)

Godliness of a mother


“The woman who creates and sustains a home and under whose hands children grow up to be strong pure men and women, is a creator second only to God”   Helen Marta Fiske Hunt Jackson

DSC_0037

 

Vic raised two magnificent young men.  They have beautiful manners, they are respectful to their elders and especially women.  They are gentle, compassionate and like their mom they speak badly of no one.  They have a wonderful set of values and morals.

057

Vic had so little time to raise her boys.  She spent most of their lives in a hospital bed or in bed at home.  The boys grew up doing their homework in her room, helping her cook… Jared was four years old when he made his (and his brothers) bed.  “Because Mommy’s back is sore”…

10

The boys are old souls.  They have witnessed so much pain and suffering… They have lived with, and cared for, a dying mother.

There was almost a Godliness to the way Vic raised her boys.  Vic taught the boys to love their Lord.  It shows in their pure hearts.  Her legacy lives on through and in her boys.

I am so proud of you my Angle Child.  You did good!

 

A mother’s loss…




“No one loses a child the way a mother loses one. We are the ones who first felt life, carried it and protected them, nourished them, sacrificed our bodies for them, held them first in our hearts, then first into our arms. We were not only connected through flesh, but on levels so deep, you really have nothing to compare it too metaphysically.

It is a love so raw, and so elemental that is just present – just there from the beginning. We have a link to our children that cannot be replicated. No one understands a grieving mother except for another grieving mother. No one else can begin to understand that void that surrounds us, shadows us, haunts us. Our children’s screams that we can no longer answer, their bodies we can no longer grab and embrace, their tears we can no longer dry, and their hurts that we can no longer make better. They then become our own unanswered screams, our bodies that become un-embraceable, our tears that can never be dried and our hurts that never stop. There are constant reminders of what we live without, and must live without until we die – sometimes it feels like it’s life’s cruel way of taunting us. The grieving mother is never whole again, never fully present, because a piece of her heart and soul leave her with her child’s last breath.”

https://www.facebook.com/WingsofHopeLivingForward

May God have mercy on us…

I don’t want to forget


I don’t know whether I ever posted this.  I know that I was desperate to remember everything.  Today I know I did not write enough, I did not take enough photos, I did not spend enough time talking to my child.

So I don’t forget…

Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”

I sometimes wonder why do I blog?  My whole being screams “so I won’t forget”.  I want to remember every day, every spoken word, every unspoken word, every feverish touch.  My friends have lifetimes ahead with their children…I don’t.  They have many more Christmases and birthdays to look forward to.  The chances are that their children will bury them… As a family we lived one day at a time.  We were grateful for every morning when we wake up!

We have friends who lost their 17 year old son almost 17 years ago.  I have not seen her in a couple of years.  When I last saw her she said that it does not become easier with time.  One just learns to cope with the pain and the loss.  My friend had to walk away from her son.  He was declared brain dead after a drunk driver drove into the car transporting him to a rugby match….

She said “I touched his big feet.  I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…”  Steven’s heart beats on in another person’s chest.  They, generously in all their pain, donated his organs and saved the life of another mother’s child..

Joan never had the opportunity to say “goodbye forever” to Steven.  She said “Goodbye, have a good game.  Love you!”  Joan treasures the last hug, kiss, laugh… She holds onto it.

I want to hold onto every memory I possibly can.  As hard as it is, I write so I will remember everything. 

A lot of what I write I don’t post.  It is too raw.

I hold onto Vic’s last words to me…”I love you Mommy”.  I hold onto the memory of her beautiful smile, her brave battle, her devotion to her sons and family.  I hold onto the purity of her heart and the kindness in her heart.  I hold onto her gentle memories.

Never has the pain been as raw and the loss as real as now.  For a couple of weeks I arrogantly thought that a scab was forming over the pain.  Then it was cruelly plucked off.

In a weird way I am glad the scab was plucked off.  I am glad that I am feeling that intense pain again.  I am relieved that the tears are running over my cheeks blurring the words as I type.

I want to remember.  I don’t ever want to forget.  I want to remember my beautiful, precious angel child.

P1110060

Lessons From Strangers


I reblogged this lovely post from http://lizardomd.com/.

280 days ago my precious Vic died peacefully.  For a long time preceding her death Vic was at peace about leaving the world.  She was dreadfully sad that she would not see her sons grow up, turn 21, graduate, fall in love, get married….  She was sad to leave me behind.  She was sad to leave her friends behind.

Unfortunately, pain and a weak body prevented her from accomplishing some of her bucket-list items.  She however left a wonderful legacy – two young men who were/are proud to call her Mommy and a Hospice.  Vic taught people the meaning of living….  She never considered herself to be “dying”.  She never wallowed in self-pity.  She never stopped living.

We all have to die.  We can die kicking and screaming or with dignity.  

I hope I will be brave enough to be stoic and dignified when my time comes.

294844_635331459815195_1719179638_n

A Poem About a Mother’s Love for Her Very Sick Child


I posted this when Vic’s death was a future event.  I did not realise how dreadful the loss would be.  How devastating the longing for my child.  How severe the physical heartache would be… Today I would give everything I own just to hug and hold Vic one more time.

  Image

I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.

If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.

God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.

God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.

http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/?fb_action_ids=3587335596077&fb_action_types=og.likes&fb_source=timeline_og

The Anniversary


There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend.  Vic too surpassed all anniversaries and eventually I though she was invincible.  But with invincibility comes pain, indignity, despair, depression…  Thinking of you Mike in your brave journey.

200 days


Today we lit candles in remembrance of Vic dying 200 days ago. My mind keeps crying “No! It is not true!” The void in my heart and life shrieks “Yes, it is!”

I met with a new Hospice patient today. She is in her early 60’s, petite, bright, friendly, positive and so unbelievably brave! She is also in denial and dying.

“I believe I will wake up one morning and I will be healed!” she said

Her skin has discoloured from the chemo, her eyes are turmeric yellow and her belly is very extended. Her feet and legs are dreadfully swollen. I believe that she is close to death. Yet this incredible woman is determined to go to the office from the 12th of August until the 27th of August as her replacement is on leave then…. I doubt that she will live that long!

I sat there and it was déjà vu… It was as if I was listening to Vic planning next week, next month and next year…. I heard her husband encouraging her to write letters, finalising her will. I shared with them how Vic had labeled every piece of her jewellery, given strict instructions on what had to happen to her possessions, planned her own funeral…

“Am I correct when I say that I hear you saying your child died?” the patient asked.

“Yes” I said. “200 days ago today”

“I cannot believe that you can talk about your child’s death! You are smiling and look so normal” she said. “When our son died we could not talk about it. We cried all the time…”

“Death is not the enemy. I prayed for my child to die…” I said.

“It is okay to cry” they said

“I cry every day” I said

Bittersweet


100_9077I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her.  I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid.  I know that Vic did not share all her fears and thoughts with me.  She was trying to protect me.

Today I read a bittersweet post.  I wept when I read the words.  It was as if I heard Vic’s voice…felt her fear…

Bittersweet
June 4, 2013 by sugarmagzz        | 6 Comments
 
It happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified.  This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…
 
The look on Owen’s face when he sees Disney World for the first time.
 
The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.
 
Owen’s high school and college graduation ceremonies, his wedding.
Ashlei’s wedding, the birth of her children, becoming an Aunt.
 
Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.
 
Grandchildren.
I will not see these momentous occasions, they will occur without my physical presence.
 
I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.

Tonight I am doubting myself again.  I wonder – did I comfort my child enough?  Why was this precious child of mine condemned to a life of horrible pain and suffering?  She never truly lived!  Why did she die and bad people continue to live and prosper?  Why was she deprived of a future???  She was such a good person!!!!!

I want to hold her and protect her.  I want to tell her how much I love her.  That she is the best thing that ever happened to me.  That my life is empty without her.  That I understood her fears.  

I WANT MY CHILD BACK!!!

 

“Never Alone”


Kempton Park-20120905-00875

We played “Never Alone” as we carried Vic out of the church to the hearse…”Never Alone” because our love will always enfold you.  We love you so much!!IMG_8396 062

Lady Antebellum – Never Alone Lyrics

“Never Alone”     http://www.youtube.com/watch?v=lnNK4Alwbsw

May the angels protect you 

Trouble neglect you
And heaven accept you when its time to go home
May you always have plenty
The glass never empty
Know in your belly
You’re never alone

May your tears come from laughing
You find friends worth having
With every year passing
They mean more than gold
May you win but stay humble,
Smile more than grumble
And know when you stumble
You’re never alone

Chorus: Never alone
Never alone
I’ll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn’t goodbye
My love will follow you stay with you
Baby you’re never alone

well
I have to be honest
As much as I want it
I’m not gonna promise that the cold winds won’t blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

May the angels protect you
Trouble neglect you
And heaven accept you when its time to go home
And when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

My love will follow you stay with you
Baby you’re never alone

IMG_8291

24.12.2012
24.12.2012

It is okay to let go my angel child.


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

IMG_5072

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/

IMG_8055

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/

IMG_8508

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/

IMG_8398

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/

IMG_8394

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/

IMG_8570

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