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.

 

 

My soul mourns my child


This post has been sitting in my Drafts since the 23 of November 2014.  This morning I was told that my grieving is isolating me from the world… So be it.  I lost my child and she deserves to be mourned.  If people cannot cope they must simply just stay out of my life.  I will not invade theirs… So if I offend someone it is tough.  Once you have walked my journey you are welcome to criticise. Remember to hug your children – I never thought Vic would die.  Shit happens.

It is 671 days since Vic died.

I have not blogged in a while. I stopped because I felt too exposed.  People were reading my blog and “using” my emotions against me.  My public grief became a weapon to be used in dealing with me.

I have received a number of emails from some of my blogger friends asking me whether I have started a new blog. I haven’t.  I have missed blogging.

Blogging to me provides me access to a network of people who have experienced the loss of a child. If one has not lost a child you will never understand the pain thereof.  It is grief that no one can begin to understand.  I read other mothers blogs and their words are my words.

We have had a number of milestones.

I have thrown myself into Stepping Stone Hospice. I have grown as a person.  My heart has been broken by the deaths of precious patients’ and the pain of their families.  I have made new friends only to lose them weeks later.  I have stood next to close on a 100 death beds this year.

Jon-Daniel turned 16. Vic left a box of party goods to be used for his 16th birthday.  I opened the box, for the 1st time after her death, and found the polystyrene “Happy 16th birthday” lettering; party poppers, balloons.  Vic was always very set on being fair.  What she did for the one she would do for the other.  She set up Jared’s 16th birthday party.  She left the same for her baby.…..  A final act of love for her precious son.

There are no further birthday boxes prepared for the boys. She has left 18th and 21st birthday gifts; Jon-Daniels confirmation candles and their 21st keys.  But no further party goods.

On the 17th of October 2014 Jared attended his Matric Farewell (prom).  Exactly 22 years after Vic’s Matric Farewell.  He wrote on his Facebook that it was hard to be excited about

He was so handsome and his little girlfriend looked beautiful. Vic would have been so proud of her son!  I know that she was there but I also know that Jared would have given anything to have her physically presence….  He would have wanted her to straighten his bow tie and flaff with his hair.  She would have cried and insisted on 100’s of photos.

I vividly remembered Vic’s farewell and how exquisitely beautiful she looked. I remembered how careful I was when I helped her dress because her skin marked so easily and we did not want red marks spoiling the evening for her.  I remembered her and Gia giggling whilst they were getting ready for the Big Event.  I remembered my pride looking at my little princess…1450195_10201323732389339_1329957140_n    vic matric (2014_09_29 21_13_20 UTC)

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I slept very badly that evening because I actually remember that his mommy was very hung-over the morning after her farewell…. He arrived home in the early hours of the morning and he was sober! I could not have been prouder.

Now Jared is writing his school exams. I remember how I fought with Vic to study hard and get her marks up.  I remember the frustration of knowing that Vic was not performing to her ability.  She only did enough to pass comfortably. I realized then that all she ever wanted to be was a mommy.  It was hard to accept.  The dreams that I had for her were exactly that – my dreams.

Vic had no ambition to become a doctor or an advocate or even politician. She started thinking up her children’s names when she was 4 or 5 years old.  When she was old enough to draw she “designed” her wedding gown.  It was hard to accept.

Vic and I were so opposite to one another. I am ambitious and driven.  Vic was content to live…

So, here I am on my knees again hoping and praying that Jared’s marks will be good enough for him to gain university entrance. I gave him the letter Vic wrote him…the letter to be given to him just before his final school exams.  I was petrified that it would upset him and affect his mental state adversely.  He was thrilled and quietly said that it was so nice getting a letter from her and being able to read her words.  He said that he missed her little notes… and her hugs.

When I heard his words I felt his pain and loss all over again.

As time passes it is becoming more difficult. Maybe because people are “fed-up” with my grieving.  They are impatient with me and want me to forget and accept.  They become frustrated because I try and find every excuse to mention Vic’s name.  Their empathy has switched to impatience.

And, I don’t care!

My soul is grieving for Vic. The pain has travelled so much further than my heart.  It has filled my body and soul to the core.  I want my child back.  I want to hear her laugh.  I want to see her smile.  I want to feel her hugs.  I want to hear her voice.  I want to be a mommy again.  I want to be a grandmother again.  I want my life back.

 

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Time to say goodbye


Time to say Goodbye is a beautiful song and I especially enjoy the André Bochelli and Sarah Brightman version. It was the boys and my theme song on this holiday. A Time to Say Goodbye and heal….

As we toured Europe we lived Vic’s dream. It was her dream to go to Italy, stand in the Cistern Chapel, drink cuppachino’s on the streets of Rome, wander through the Christmas Mart stalls savouring the smell of Gluhwein and melted cheese….

I am filled with profound sadness every time I think of my child. Even if she lived Vic would never have been able to make the trip. The flight would have been too long, the cobblestone streets impossible for her wheelchair, the bus trips too long…

I cried when I saw the Pietà in the Cistern Chapel. This beautiful piece of art in a convoluted way symbolised Vic and my lives…

Both Mary and I were child brides. She was much younger than I was when she gave birth to Jesus – it is written that Mary was 12 years old at the time of her Son’s birth. Her child filled with wisdom and teaching as was mine… I once again realised, on this trip, how infinitely wise Vic was. She knew that I would have to remove myself from everyday life to heal.

She made me promise to do this trip with the boys.

Looking at the Pietà I saw a mother holding the body of her lifeless child. Tears filled my soul when I remembered holding the body of my lifeless child. For a fleeting moment I felt the heat that radiated from her fever wracked little body. I could hear the thundering silence from her breathing that had stopped…

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I saw the lonely sadness of a mother isolated from the world in her grief. I recognised that isolation that I experienced at the second of Vicky’s death.

I stood there and realised that it will never change. I will always be isolated in my grief and longing for the child that I lived for. No one in the world could possibly love her the way I did. She was blood of my blood.

She loved her boys the way I loved her. She loved her boys with every fibre in her body. Her thoughts, fears and sorrow centred on her sons until she breathed her last breath. The blood of her blood. Her future…

Standing in front of the Pietà I realised that the closest bond is the bond between a mother and a child. Not a child and a mother…. Children move on and live for their children

Walking the streets of Europe I was filled with an all-consuming anger. Anger at God, anger at careless doctors; angry at a horrific disease called Osteogenesis Imperfecta. I was angry at the fact that my child was robbed. Robbed of a life with her boys. That I was robbed of a lifetime with my child.

As the old Year is edging towards the New I am filled with trepidation and horrific sadness. Not only for my Vic but for the many who crossed my path this year and who are enfolded in their own grief.

So much pain, longing and sadness as we look to starting another year without our loved ones.

I have survived my birthday, Christmas Eve, Christmas Day and Jared’s birthday. I have cried on my own, in the shower, in shops. I have been filled with rage and despair when I saw all the Christmas cards “For my Daughter”… I will never buy another card for my precious child. I will never be able to open gifts with her under the Christmas tree. Nothing will ever be the same again.

In three weeks’ time it will be Vic’s 2 year anniversary. Two long years without my child, my best friend…

I read that it gets worse as time goes by. It does get worse. The raw sadness has dissolved into a steady all-consuming pain. The longing to hold her one more time overwhelming.

And, although I know that it is Time to Say Goodbye I know I will never move on.

In memory of Vicky by Dennis McHale


Tonight I visited the blog of a brilliant blogger Dennis McHale who writes hauntingly beautiful poetry.  I read through a number of his poems, very aware of the man own personal pain, when I came across this tribute to Vic that Dennis posted on the 2nd of May 2013.  Reading it, I was as touched as I was then…  Thank you Dennis.

I hope that one day I will read happiness in your words.

MAY 2, 2013

In Memory of Vicky

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This poem is dedicated to my dear friend “tersiaburger”
In memory of her beloved daughter, Vicky.

——————————————————————-

You and I
are touched by one star.

Wherever you are
we stand together in one light
which no depth or height or distance
can ever dim.

Wherever you are
your light shines;
past time and space
past flesh to thought,
I feel your power.

Wherever you go
the day will dawn
and the star will appear;
for you are a child of this light
and it fosters your heavenly dreams.

In this light, I have found ways
to heal, to bind up,
to tear down the feeble structures
of fear of your absence has
carelessly constructed within me.

You and I
are touched by one star.

In its glowing embrace
we find our true selves;
we find our peace.

Today I may stand alone,

missing you with all my heart
be I stand strong.
Through the corridors of our courage
you have helped me to
discover those eternal lines
of love within myself;
my birthright discovered because

Vicky and I are
touched by one star.

http://dlmchale.com/2013/05/02/in-memory-of-vicky/

 

Unimaginable pain


When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces.  But, the pain is no longer that same raw pain.  Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain.  At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”.  It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding.  And yet, there any many things I can no longer remember.  I read today that it is my body is protecting me… I am grateful for it.  I am glad that I have forgotten some of the horror of Vic’s death.  I am clinging to the good days.

I went away with two friends last weekend.  It was amazing.  We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another.  The empathy stemmed from knowledge.

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On our first night in the mountains I dreamt of maggots.  There were maggots everywhere.  I tried to kill them, but they kept crawling out of everywhere.  I was scared and nauseous.  I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death.  I fear dying in pain and indignity.  I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice.  My loved ones must kiss me goodbye and leave.  I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life.  So much has changed in the past 516 days.  I have lost more than my child.  I have lost being a mother.  I lost my best friend.  We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight.  I have lost others that I love because our pain collided.

Yet I am alive.  My life goes on despite the terrible void that Vic’s death left.  The boys are so amazing.  Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief.  The firsts never end.  Every morning the pain starts all over again.  The grieving never ends.

At a funeral I attended today the minister said “Grieve hard”.

I do.

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If tomorrow starts without me


This played just before Vic’s memorial service started. A deadly silence descended in the church as we all sat crying for this precious child of mine. I listen to this often. I still cry when I hear the words that Vic could have spoken. How I miss my precious child.

If tomorrow starts without me,
And I’m not there to see,
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things, we didn’t get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you’ll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I’d have to leave behind;
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I’d always thought,
I didn’t want to die.
I had so much to live for, So much left yet to do,
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I’d say good-bye and kiss you
And maybe see you smile.
But then I fully realized,
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things,
I might miss come tomorrow,
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven’s gates,
I felt so much at home.
When God looked down and smiled at me,
From His great golden throne,
He said, “This is eternity, And all I’ve promised you.”
Today your life on earth is past,
But here life starts anew.
I promise no tomorrow, But today will always last,
And since each day’s the same way,
There’s no longing for the past.
You have been so faithful, So trusting and so true.
Though there were times you did some things,
You knew you shouldn’t do.
But you have been forgiven, And now at last you’re free.
So won’t you come and take my hand, And share my life with me?
So when tomorrow starts without me, Don’t think we’re far apart,
For every time you think of me, I’m right here, in your heart.

Jared♡ĶįƦƧƳ.Ș♡(1)