Two years today


Our last coffee shop outing...
Our last coffee shop outing…

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My precious Angel Child

Two years ago I lay next to you listening to your laboured breathing. You lay motionless in your bed. Your hands and feet were ice-cold. Your body was burning up with fever. Daddy and I counting the seconds between your breaths. My hand on your little heart and my head next to yours.

I remember whispering how much I love you; that there was nothing to be scared of…I felt your heart beat getting weaker and weaker; your breathing becoming more shallow by the minute.
When your little heart stopped beating my heart broke into a million pieces. As your soul soared mine plummeted into a hell hole of grief and despair.

I knew that it would be hard but nothing in the world could have prepared me for the pain that followed. My heart aches for you and I would give anything to hold you one more time. To hear that mischievous giggle…

We miss you so much. Our family will never be the same again.

 Alberton-20130116-01485  IMG_8532

68  20121203_202928

The Locket


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© Kathy J Parenteau

I have a special locket that rest above my heart,
it holds your beautiful pictures while we must be apart.
It’s my hope that you’re still with me no matter come what may,
so I know that I can talk to you every single day.
When I walk into a storm you’re watching over there,
guiding me to sunny skies with tender loving care.
I’ll never have to be alone you’re always next to me,
you show me love in different ways the eyes could never see.
Your spirit fills my soul with love beyond any explanation,
with pride I’ll wear it every day in total admiration.
Of the woman who changed my life and patiently awaits,
arms wide open to welcome me when I reach heavens gates.
It’s never really good bye if in your heart you do believe,
a mothers love is endless, and never ever leaves.

Source: The Locket, Mourning Poem http://www.familyfriendpoems.com/poem/the-locket#ixzz2l0SJf7xl
#FamilyFriendPoems

 

 

The Vicky Bruce Dignity Room


I am sitting in the Vicky Bruce dignity room. The boys bought some wall decorations that they put up earlier this week. It is not perfectly positioned on the wall, but it was part of their healing process. I think it is beautiful.

Everybody has left, and I am alone here. The energy of the “living” have left the building. It is quiet and peaceful, and I can feel Vic’s presence.

Today I read a sad blog. It is a mother’s anguished cry about her grief for her 29-year-old daughter who died 33 weeks ago. Thirty three weeks says it all. She is still counting the days; the weeks dreading the heartache that she knows still lies ahead. http://forjuliaruth.com/2013/11/10/what-about-grief/

Compared to Dru I am a veteran at the grieving thing. Vic died 43 weeks ago. Ten weeks do not sound like a lot, but it is a lifetime in the life of a grieving mother. Dru’s pain is raw. So is mine I suppose. I think it has become such a part of my life that I cannot remember what it felt like to be happy and carefree.

I also read a heart wrenching blog written by a grieving father. http://kerrichronicles.com/2013/11/12/the-miracle-of-his-short-presence/ John wrote the following “I ran into the room and Anita was holding Noah, lifeless, with no tubes or machines hooked to him. I cried out “No No No” as I rushed over to him and held onto him with all my life. We both cried for an eternity. I ran my hands through his hair and begged God for this not to be happening. ”

These words catapulted me back to the 18th of January 2013 when I clung to the lifeless body of my precious child. I still feel the heat of her fevered body against mine. I remember how beautiful her hair looked. I remember holding her and kissing her head.

Will the pain ever subside?

I don’t think so. Well-meaning friends and acquaintances tell me it will. But quite honestly they have never lost a child.

Tomorrow it will be 302 days since I held my child. 302 days of raw longing. 302 days without my beautiful Vic. 365 days ago I realised that Vic had started dying. Vic’s nausea was relentless. Her little body started shutting down. Her organs had started failing. Vic knew that day that she was dying. https://tersiaburger.com/2012/11/14/a-night-out-of-hell/. The Doctor put up an intravenous line to try to stop the nausea. Vic was fracturing vertebrae from vomiting….

My poor precious baby girl. Why did you have to suffer the way you did?

Would I turn back the clock? To have another five minutes with her I would. For one last hug, one last “I love you”, one last “You will always be in my heart” and one last “You made my life worth living…”

I love you baby girl.

To God


“To God, I hope you look after Auntie Vicky. She is very sick. Love Chloe Alexa Burger” My precious 5 year old UK granddaughter wrote this…her mommy found it in her school satchel last week.

To God

Dear God, hear the words of a five-year old.

Happy birthday angel boy


Today Vic’s youngest son turned 15. It is his first birthday without his Mommy. As a family we have dreaded it.

Vic was a birthday person. Banners all over the house, balloons, singing, speeches and lots of laughter. Vic loved parties especially when they were her sons’ birthday parties.

We cannot do what she did. It would not be right to do what she did. We need to create new traditions around birthdays.

It is a day filled with pride and heartbreak. I know many people will think and say that Vic is smiling down from Heaven on her baby boy today. I know she is weeping. Vic never wanted to die. She so desperately wanted to live. She wanted to be at her sons’ birthdays, tell them how proud she is of them…Vic wanted to mother her boys herself…

The day has come and gone. We all hid our feelings so well. We laughed, smiled and sang….

Tonight when I get into bed I will weep with my child for my grandson…

10th birthday
10th birthday
Pregnant with Jon-Daniel
Pregnant with Jon-Daniel

Jon-Daniel 13th birthday
Jon-Daniel 13th birthday
Vic wrapping Jon-Daniel's gift
Vic wrapping Jon-Daniel’s gift
Jared smearing cream all over the birthday boy's face...
Jared smearing cream all over the birthday boy’s face…

8 months


243 days without my child.  8 months of mourning, weeping, sadness…  

Of course I appear to be “carrying on with my life”.  Why not?  The world demands it of me.  When I cry I confuse the world.  It has already been 8 months…I should be over my child death.

“Life goes on”…

Does it?  No!! Existing, breathing goes on… We live with this dreadful void in our lives.

Just think of it.  When you miss your child you pick up a phone, you Skype, get onto an aircraft or into a car and go visit.  You can hug and hold your child.  I have a box of crushed ashes.

So until you have walked in my moccasins – please don’t expect of me to “get on with it.”  I am doing the best I can.  Live your life, I will grieve the loss of mine.

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I miss you so much my Angel Child.  I missed you yesterday, I am missing you today, I WILL miss you tomorrow and every living second of my life.

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Al my love, yesterday, today, tomorrow – forever.

Mommy

Saturday poem: Loss


Thank you Kate Swaffer!  Kate blogs about the critical issues that impact on a person living with a diagnosis of dementia and their loved ones.  Kate is inspirational, motivated and positive.

loss

Loss

Tragedy so great

Illuminating you with sadness

Seems impossible to recover

Lack of lustre lasting forever

Acceptance and healing

A lifetime away

To hear a song or smell a scent

That throws you right back

Into the pit of grief

One step forward

Many steps backwards

From the intensity of sorrow

Meaninglessness, emptiness

Impaired judgments

Damaged relationships

Memories stained with pain

Walls crumbling inside your heart

The journey of loss is long

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She Died on a Monday


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

Where's my kid?

no medical image
In the seven years leading up to my daughter’s death, she suffered through hundreds of hospitalizations. I use the word “suffered” and I mean it. When I’d get the call from her husband in her distant city telling me she was once-again hospitalized, I’d do a quick survey of where we were in the week. Tuesday to Thursday = probably okay. Friday to Monday = disaster.

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

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

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Hospice – friend or foe?


Hospice – friend or foe?

A blogger friend, Terry, is preparing for her beloved brother Al, to move home from an Assisted Living Facility. Al suffers from Parkinson’s disease and his general health condition is extremely precarious. Terry blogged: “I finally heard nothing from the phone. I had done everything I could find to do trying not to have to make the dreaded call to Hospice. I decided not to use the Hospice here in our county. I was very disappointed in them with the lack of care they gave to my father.” http://terry1954.wordpress.com/2013/06/17/al-and-hospice-meet/

Vic wrote this on her Face Book page on the 15th of May 2011… “Today Hospice came to access my Grandfather… They dripped him & made him comfortable. He has lost his swallowing reflex, sleeps most of the day, is completely bedridden & can barely talk… The suddenness of his deterioration is very difficult to comprehend. Could you all say a big prayer for my Gramps and especially my Mom, who lost her best friend of 25 yrs., age 51 to a heart attack last Tuesday. My Mother is one of the strongest, bravest people I know… How do we say goodbye, how do I take my Boys to say their Goodbyes tomorrow, how do we accept that this incredible man has such little time left regardless of the fact that we all know that its best for him. How can I be strong for my babies when my heart breaks all over again, every day when I see him…? Especially my Eunice Friends will all remember how desperately my Gramps and Gran loved and spoilt me and how VERY MUCH they meant to me… I don’t want to live without him even though I realise that that is extremely selfish, but I love my Grandfather so desperately, it’s not fair… All I ask for is compassion… Compassion for Gramps and my Mother… Thank you to everyone for all your love & support through everything… Love Vic…”

I am a great believer in the services that Hospices offer – worldwide. Hospice cared for my Dad in the last week of his life and for Vic the last 5.5 months of her life. My experience was positive.

The hospice movement was started in the 1950’s in London by Dame Cicely Saunders, and the first hospice facility opened in London in 1967. Seven years later the United States opened their first hospice facility in 1974. In America the hospice movement has blossomed and hospice now serves 44.6% of patient deaths. Unfortunately, the median length of service for hospice patients is only 19.1 days, which means many patients did not receive the benefit of hospice care until the end of a difficult illness. In my country only 5% of the dying actually have access to Hospice services.

The original idea of hospice is that once curative treatments are no longer effective, a patient enrols in hospice to receive comfort care. In our culture of “fighting” death illness that should be addressed through ongoing decisions about the risk and benefit of interventions gets turned into a battle that should be won or lost. No one wants to be a loser, so the patient is reluctant to quit curative care until there is absolutely no hope. Many physicians are geared the same way, and their desire to give hope and “beat” disease results in a reluctance to call in hospice even when they know the situation is bleak.

Hospice care is for a terminally ill person who’s expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, however. Hospice care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.

The benefits of hospice and palliative care

Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.

Source: National Hospice and Palliative Care Organization

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

The above is all well documented facts. Yet, when a family is faced with that terrible decision to call in Hospice, it is a deeply emotional decision. The phone call is a terrifying telephone call. This is evident from Vic and Terry’s posts…..

It made me realise what a massive challenge lies ahead of us in Stepping Stone Hospice.  We need to educate the community.  We need to dispel the fear of and for Hospice.

stepping_stones_of_memory_by_nwwes-d3krg59


I wish that…


IMG_4810Someone wrote a poem for me.  I am grateful for the hand of comfort that was extended by a stranger.  This stranger happens to be ill and suffer debilitating pain.

I was so touched!  Thank you Belinda!!

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

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

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

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

21 long weeks of grief


Vic's last ever outing
Vic’s last ever outing

Thinking of You with Love
We thought of you with love today,
but that is nothing new.
We thought about you yesterday,
and days before that too.
We think of you in silence,
we often speak your name.
All we have are memories,
and your picture in a frame.
Your memory is our keepsake,
with which we will never part.
God has you in His keeping,
we have you in our hearts.
A million times we`ve wanted you.
A million times we cried.
If love could only have saved you,
you never would have died.
It broke our hearts to lose you.
But you didn`t go alone.
For a part of us went with you…
the day God called you Home.
~Author Unknown

TWENTY …


Vic as a 20 year old with Danie and I
Vic as a 20 year old with Danie and I

Properties of the number 20


Symbolism

  • Represent the God solar for the Mayas.
  • The number 20 is considered as ominous for saint Jerome because it indicates the universal fight, but it also represents the source of all energy of the world.
  • This number is represented in Hebrew by the letter caph, in form of opened hand, to seize and hold. The eleventh mystery of the Tarot, which corresponds to this letter, and consequently with this number, is “the Force” which expresses energy, the activity, the work, according to R. Allendy.
  • Number associated to the resurrection or to the reincarnation, according to Creusot.

Bible

  • Samson had judged Israel for twenty years. (Jg 16,31)
  • Under the commandment of Elisha, twenty barley loaves are enough to feed hundred persons. (2 K 4,42-44)
  • God asked Moses to make the census of all the community of Israelis being twenty years old and more. (Nb 1,3)
  • Jacob spent twenty years at Laban before to escape. (Gn 31,38)

General

  • One month in the religious calendar Maya contained twenty days.
  • Magic square of 20:

8 6 4 2

4 2 8 6

2 4 6 8

6 8 2 4

  • Number of characters of the alphabet of bards.
  • Anniversary of marriage: weddings of porcelain of China.

Occurrence

  • The number 20 is used 117 times in the Bible.
  • The number 24 is used 20 times in the Bible.
  • The number 20 is used only once in the Koran. (Koran VIII, 66)
  • The names of Cain and Rome are used 20 times in the Bible.

 

It is Friday again.  Twenty weeks ago my beautiful Vic died.  Twenty sounds too “little”.  It feels too “much”.  Twenty was always such a magical figure…Twenty had an allure of its own.  Twenty always felt like the “almost adult” number.  I remember when I was twenty years old I was so excited about turning 21…coming of age!

Now twenty represents the number of weeks that we have wept and longed for the presence of Vic.

A year ago I posted “Life aka Vicky” versus Death.  https://tersiaburger.com/2012/06/07/6-6-2012-3-2/

 I wrote “Mommy, I am sick” Every time Vic opens her eyes she utters these words. 

Will she win what we believe to be the final round?  Life aka Vicky vs. Death… Ten long, long years she has fought with every fibre in her little body.  I sense that she is tired.  Ready to concede defeat…  She says she isn’t scared.  I am!  I am scared of facing life without my baby. 

Now I have already faced 20 weeks of living without my baby.