I am your child…


It is finally 2014.  I am so grateful that 2013 officially in the past.  I also get to say “My daughter died last year”

2013 was filled with tremendous loss.  Not only did I lose my child, other loved ones but I also lost myself.  2013 was filled with lessons. Painful lessons…

I have learned that grief is a solitary, unique experience. I have the learnt the difference between grief and sadness. I have learnt that grief is never-ending. I have learnt that it takes courage to grieve. I have learnt that the depth of loss depends on the depth of the relationship that has been severed.

In this process of grieving for my child I have lost me…I have become a stranger to myself. Vic and I were always “one”. I am battling to function with half of me gone. I miss the other half of my soul…

Once I was an organised person now I have become totally disorganised. My house and filing is a mess. My time management sucks! I battle to read and complete tasks. I no longer trust my judgement. I have trusted people who have scorned my love and trust. I have become forgetful. I have hidden my jewellery somewhere and for the life of me I cannot remember where. I have hidden the boys Christmas gifts – I cannot remember where. I have missed appointments, mislaid my keys…

I am preoccupied with Vic’s death. Everything that happens, I relate back to Vic’s death. In unguarded moments I relive her final moments, the vision of seeing her being loaded onto a gurney… I hear her final words echo through my mind and body “I love you Mommy…”. I relive her fear of dying, her desperation at saying her final goodbyes…

I have become impatient and intolerant. I am on the defensive. I feel isolated in my grief. I truly feel that only my WordPress friends, who have also lost a child, understands. My real world friends and family do not. How can they? They have never lost a child. They get to hold their children….They can rest their heads on their children’s heads and smell their freshly washed hair, feel their soft skins….


I have lost interest in things that used to fascinate me. I no longer enjoy decoupage, scrapbooking, painting or baking. Life has taken on a different meaning. I have new responsibilities.  Vic entrusted her beloved sons to my care and tasked me with Stepping Stone Hospice.

Because grief is primarily a personal experience it certainly takes its toll on relationships. Partners can try to understand someone else’s grief but they can never experience it or take on the burden themselves.

On the surface it appears society is accepting of this unbearable sadness and people are supportive and open to talking about it. I’ve been surprised by people’s genuine kindness and empathy as much as I’ve been repeatedly shocked & disappointed by their lack of it.

Although friends and family have been supportive, there is a mandate as for how long their unwavering support, patience, understanding, concern and empathy lasts. The truth is, the situation is so unbearably sad that it becomes incredibly emotionally draining on the other person.

The realisation that they can’t fix your sadness sets in, the frustration builds because not even they can see an end in sight, then gradually it starts to impede on the happiness in their life. They haven’t lost their child so why should they spend all their time sad about yours?

I cannot expect anyone, who did not truly witness and live the horror of seeing my beautiful child die, to understand my grief.

What frustrates and angers me most is that people, in the misguided perception that they are guiding or comforting me, insist on how I must be feeling! Who gives anyone the right to decide whether my emotions are “right” or “appropriate”. Please don’t give me advice. Don’t pretend to understand and keep your criticism to yourself. Please just be there if I invite you into my private space.

I am so tired. I am tired of living without my child, tired of trying to justify my grief, minding my words…I am tired of being hurt. I am tired of the hurt.

This morning I read the Facebook status of a brave young woman who lost her two precious daughters last year… “God has added one more day to my life. Not because I need the day but because someone else needs me. So I will get out of bed…..”

So, on the third day of 2014, I was inspired to make a decision. I will fight back against this terrible grief that is threatening to destroy me. I cannot bring back my child. I cannot make people understand, love or accept me. I will try to take back my life this year. I will start writing Vic’s book. I will focus on those who care for me; I will disregard my detractors… I will change my eating habits, exercise and sleep in a bed. I will lose my vulnerability. I will honour Vic through my life.

On the 18th of January the boys and I will do something special to celebrate their Mom’s life. Our lives will become about celebrating Vic’s life – not her death.

My brave child’s words to her boys are ringing through my head – “I am your mother not your excuse”.

I hear Vic’s voice loud and clear “I am your child – not your excuse”.

I hear you precious child. I promise to continuously remind the boys too… I miss you so much. I will honour you through my life.

We need a miracle again….


 

 

 

 

I posted this a year ago.  We never did get the miracle we needed.Image (195)

Vic's Final Journey

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…

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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.

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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 shadow of grief


Grief becomes a shadow. It finds you and follows you. At times the shadow is small and then at times it is big.

Your shadow is a constant companion. It keeps up with your pace… It will run with you but it will also crawl with you. When you stop it will stop.

It follows you into the valleys of despair and will climb mountains of triumph with you. Grief is a constant companion.

When you are in the deepest valley your shadow is there. When at the heights of the highest mountain it is still there.

A shadow is a dangerous thing. If offers a wonderful hiding place. A place to lose one self. At times the shadow invites me in and I get lost in my shadow of grief. In the shadow I am invisible and no one can see my pain, my sense of loss, my loneliness. My shadow is a safe haven where I get to become one with my grief.

The boys are a light that draws me out from my shadow. Hospice and my faith is a light that draws me out from my shadow.

The grief of losing a child is not only on high days and holidays. Grief follows you on bad days, good days, every day… It gets into bed with you and awakens with you.

It even permeates your dreams.

Today it is 8 months since Vic died. Not a single day has passed that I have not been acutely aware of the shadow of grief that accompanies me on my journey. Has it become a journey of recovery? No, I doubt it. I think it is too soon. I do have better days…Then I have days where I walk into a supermarket and see Vic’s brand of deodorant or shampoo. I will put out my hand to touch a @$*# tin of deodorant and tears will well up in my eyes.

For heaven’s sake! A stupid tin of deodorant now has the ability to reduce me to tears!

Today I stood outside the Hospice building. It is nearing completion. I experienced a profound sense of achievement. Pride and satisfaction welled up in my heart but disappeared into that massive, gaping hole left by Vic’s death.

“This is because my child died” it rushed through my brain….

Of course someone would have started a Hospice. That I don’t doubt for one second. Maybe the rest of the team would have been involved. Maybe the financial backing would have been better – who knows? The fact remains that the reason I got involved is because my child died and I promised her that her death would not be futile.

I miss you Angel Child


At 10.35 today it will be exactly 7 months since my beautiful child lost her battle to live.  It will be 213 days…..

  • 18,403,200 seconds
  • 306,720 minutes
  • 5112 hours
  • 213 days
  • 30 weeks and 2 days

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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/

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

We were one


24.12.2012
24.12.2012

I had my first counselling session with the Hospice psychologist.  It was terribly difficult and emotional.

So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”

In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”

When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…

My standard answer to Vic was “I will be okay baby!” 

Vic would say “I know, but I worry about you.  Promise me you will see someone professional after I am gone?”

“I will be fine.  I will be grateful that your suffering is over…But I promise I will!”

I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself.  Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…

So I walked into Alan’s office this morning.  I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.

We spoke briefly about the boys, but Alan firmly said that today we would focus on me… 

I bravely started talking without waiting to be prompted.  After all, that is why I was there.

“I knew that I would miss Vic after her death but nothing could prepare me for this” I said

“Vic was diagnosed with Osteogenesis Imperfecta at 18 months.  The doctors said she would not live to be older than 12 years.”. 

I spoke clearly and succinctly about Vic’s medical history.  It was familiar territory.  I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life.  I ranted about Drs S + V.  I articulated my hatred of them, my anger at their arrogance.

I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU.  I told him about the ventilator been switched off and Vic starting to breathe on her own again…

I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…

I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.

I share with him my guilt at being the one who administered her sedation at the end of her life.  It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.

I saw Alan look at the clock on the wall.  I knew our time was almost up. 

He sat forward on his chair, his elbows on his knees.  His voice and eyes were gentle with compassion.

“Tersia, it is normal to grieve.  Vic has taken up all your time and energy for 38 years.  You never separated from her.  In your mind you were one…”

That is so true.  That is why I feel as if part of me has died.  Vic and I were so close.  She always remained my baby girl.  I never became Ma, Mom or anything but “Mommy”. 

On the 9th of October 2012 I posted these words

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

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

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

It is okay to let go my angel child.

Vic and I discussed this post… We cried then, and I cry now.

I pray that I will find peace.  

I will not close down my blog


559940_412504292172338_2020785244_nThis is a very emotional time in all our lives.  It is 8 weeks and 2 days since Vic died.  We have all lived on our nerves for a long time and although we thought it would be a relief that Vic’s suffering was over, the grief has been overwhelming.  Not only for the boys and I but also others that loved Vic…

I know the family is concerned about me.  I know their concern stems from love.

I however need to blog.  I need to hear from other bereaved parents that I am not going mad.  That my grief is normal and that it is okay to grieve for my beautiful child.

I have subscribed to several blogs or sites for bereaved parents and it is not working for me.  It is other parents words.

I will however borrow these words from another grieving parent

Dear Clueless

I would like to share with you my pain but that isn’t possible unless you have lost a child yourself and that I wouldn’t want you to have to experience. So with that being said, I would like to say this. I will try to my best to understand you if you try to understand me. I lost my child. My life will never be the same. I will never be the same again. I will be different from now on. I no longer have the same feelings about anything. Everything in my life has changed from the moment my child left to go to heaven. I will, on some days be very sad and nothing you say will changes that so don’t feel like it is your job to make me feel better on those days, just allow me to be where I am. 

When you lose a child you not only lose your reason for living, you lose the motivation to go on. You also lose your sense of self. It takes a long time to come to some kind of understanding for why this has happened, if ever. Of course we who have lost children know we have to go on but we don’t want to hear someone else tell us too. Especially from someone who has not lost a child. It makes me and anyone who has lost a child want to say who are you to tell me that? Did you bury your child? I don’t want this to sound like I don’t appreciate everything you say because I know you mean well, but I just want you to appreciate where I am coming from too. I want you to understand that some of the things you say hurt me and others like me without you really knowing it. I know it must be pretty hard to talk to people like myself, not knowing what to say. That is why I am writing this letter. 

If you don’t know what to say, say nothing or just say I’m sorry. That always works for me. If you want to talk ad say my child’s name feel free I would love to hear his name anytime. You not saying his name didn’t make me forget it, or what happened to him. So by all means say his name. When special dates come or holidays come please forgive me if I’m not myself. I just can’t keep it up on those days. I may wish to be by myself so I can think about my child without putting on a front. Most of all I want you to know I’m having a hard time with the death of my child and I am trying my very best to get back into life again. Some days it may look like I have accomplished that, and other days like I am at square one.

This will happen the rest of my life periodically. There are just no words to explain the living hell this feels like. There are no words that could ever do it justice. So please bear with me and give me time and don’t put your own timetable on my grief and let me be the person I am now and not have to live up to the person you think I should be. Allow me my space and time and accept me for me. I will try my best to understand you. 

Love, Your Friend in Grief  https://www.facebook.com/pages/Whispers-from-Heaven/604565892890783

So, if you are going to read my blog read it through my eyes and see my heart.  If you are unable to handle the rawness of my words know that you are reading my soul.  Remember that I don’t easily verbalize my emotions and this blog is my coping mechanism.

I have found hundreds of notes and journal entries in a file called “Our Story.”  Vic loved my blog and wanted me to share “Our Story”.  It was her wish.  I will continue to do so.

So, love me in my time of sorrow and allow me to cope whichever way I can….  I love you too and appreciate your caring.

 

“I’ll meet you at the end of the earth”


Vic and some of her highschool friends
Vic and some of her highschool friends

I am systematically packing up Vic’s belongings.  It has been a humongous job!  Vic was a squirrel – she hoarded! I have discarded hundreds of old VCR tapes….thousands of photos and many hundreds of cards.  The “Good luck with exam cards” were totally wasted on Vic – I came across her school reports again…; get better cards, I love you cards and thank you for your friendship cards from her school friends; lots and lots of Valentine cards… The one card that got to me was a card that read:-

To My Daughter

So many times

When you were a child,

I looked upon your

Sleeping face

And wondered

What kind of woman

You’d grow up to be?”

Then on the inside of the card it reads “You grew up as wonderful as I imagined” Today I can categorically state that was not true.  Vic grew up to be a far more wonderful person than I could ever have imagined. Vic was kind and generous.  Vic always smiled.  Vic loved unconditionally and never judged.  Vic was devoid of bitterness and hate.  She never spoke unkind words.  Her bravery goes without saying… Vic is the bravest person I know.  Vic always said “I am fine thank you…”  The shrillness of the “fine” was the “stress-indicator” of how ill she was.

The cards her school friends wrote were to thank her for her friendship and support.  Gia wrote on the 26th of March – year unknown: “This is just a short note to say thanks for all your help, attention, help and love while I’ve been under the weather…” On the 28th of October 1991 Tatum wrote “You’re a great friend and I am dreading this time next year when we all have to say goodbye.  Thank you for being you and putting up with me…”  Monique wrote “Thanx for everything.  You know what everything is.” One of the Vicky’s wrote “as friends we have walked together sharing joy, laughter and tears.  Though time may pass and things may change, I’m sure you’ll agree, That one thing always stays the same…each other’s loyalty” Mouse wrote “Vicks thank you for willingly giving help – be it a smile or a thoughtful thought – It may go unnoticed but it is appreciated” Gia ended most of her notes, cards and letters with “I’ll meet you at the end of the earth”

Vic is 2nd from the left in the back row.

I truly felt like a grave robber going through Vic’s private correspondence.  I cannot keep it all – there is just too much and I did not want to discard her whole life.  So I have made a memory box of all her school dance invitations and photos, her friends’ notes, some boyfriends’ letters and her theatre season tickets.  I have added some of the hundreds of cards I sent her over the years.  Yes…Vic kept them all!!!!

How can I just wipe out her lifetimes memories?  Vic treasured these items and I will keep it safely for her grandchildren to see one day… This memory box is her memory box.  A tribute by her friends… It was an experience to “see” Vic in high school.  Vic insisted on going to boarding school in High School, and she was accepted at one of the most prestigious girl schools in South Africa.  Vic LOVED the freedom and camaraderie of boarding school.  She got up to a lot of mischief!  I have now personally seen the photos of what the girls got up too…   But I am so glad.

I have come to realise that I never truly allowed Vic to grow up.  I was an over protective mother and quite honestly maybe even a little overbearing.  Vic always remained a child.  Albeit a mature child and an old soul but never the less a child. From the day my beautiful baby girl was born I knew I had to protect her from the world.  She was too tiny and beautiful for this horrible world we live in.  Now my beautiful baby girl is safe from pain, hurt and the ugliness of the world.

29 days – Promises Kept


My beautiful Angle Child

Today it was 29 long miserable days since you stopped breathing.

I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed.  My life has continued yet part of me is dead.  I have lost my words today.  I just want to have a cup of tea with you.  I want to tell you how much I love you and how much I miss you.

Promises Kept

I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.

I get up each morning,
I get through the day
struggling past tears,
every step of the way.

I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.

I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.

But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown

 

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/