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/

 

Wave Of Emotions ©Stacy Lynn Stiles


A tidal wave of emotions,
have sent my soul out to sea.
Crashing currents submersing,
what once was you and me.

Drifting afar distantly,
a glimpse of precious time.
While I held you close to me,
singing your favourite rhyme.

Rocking gently back and forth,
arms encircling you whole.
Lips pressed upon sweet innocence,
your cries I did console.

Praying the Lord may keep you;
wash your troubles away.
Hoping a bond forever remains,
the same tomorrow as today.

Splashing scents of adorable purity;
upon your mother’s face.
I draw you closer, your tiny being;
and even tighter I embrace.

Consumed with pure admiration,
at the woman you’ve became.
Beautiful imperfections,
your absence chastised me numb.

Although I know you had to,
spread those vast angelic wings.
I still can hear the laughter,
of a child’s heart that proudly sings.

These crashing, violent riptides;
will soon turn a peaceful wave.
Knowing the life I gave you,
is the life in me which you did save.

This current of my heart, is perfectly;
in synch with every beat.
A perfect bond between us;
without your love, I’m incomplete.

http://www.familyfriendpoems.com/poem/tidal-wave-of-emotions
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Time heals as the season changes


New emotions are raw and intense. Think back to when you fell in love for the first time – the butterflies, the beauty in everything….. Colours were more vibrant and life soared through your veins. In a new love we are more forgiving, nicer, gentler… One’s whole life revolves around the other person.

As time marches on, the balance is restored. We settle down to realising that nothing and nobody is perfect and/or everlasting. Sadly life forces the big picture back into our lives, our minds, our vision….

It is the same with grief.

Time heals as the seasons change. Reason does not heal.

When Vic died my entire existence was filled with pain, tears and longing. There was guilt and self-recrimination. It used to echo through my mind “what could I have done different?”  Madness lurked in my mind.

Four hundred and seventy-four days later I still grieve. I still cry. I still feel as if I am losing my mind at times…

The intensity that I experienced immediately after Vic’s death has started diminishing and become softer, gentler… I often sit with a gentle smile on my face remembering Vic as a cute baby, a funny toddler, a difficult teenager and a precious friend, daughter and mother of my grandchildren. I page through old photos and sometimes I laugh out loud at the memories.

Life has started re-emerging. My grief is not less – I have just become used to it. My grief has settled into my heart as snugly as old slippers settle around tired feet. I have grown accustomed to the void in my life.

Heartache has become a part of my life. I feel the sadness in my eyes and smile. Yet I have learnt to laugh again.

Life has gone on… The seasons are changing – again…..

 

 

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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.