Vic’s 3rd birthday in Heaven


Monday, the 31st of August 2015 was Vic’s third birthday in Heaven.

It was difficult….

It was the most difficult birthday to date…..

From the second I opened my eyes waves of grief crashed over me. My only conscious thought was to breathe. This too would pass.

Minutes before the clock struck 12 I thought “Now there are merely minutes left of this birthday. Tomorrow the mask is back in position. The world will see what they want to see.”

“I will indulge and consciously soak in this heartbreak for another couple of minutes. I remember the way Vic embraced her birthday. She loved every second of the day…. But now this day is mine – a day of reflection, a day of gratefulness, a day to celebrate the miracle of my daughter’s life and to mourn her death.”

From the first second I learnt I was pregnant I starting thinking, planning and fantasizing about my child’s life. I imagined a sport star; a brilliant academic… a family of my own exactly like my family. I dreamt of being a mother like my mom was. In my mind I created a beautiful world for my little baby.

Then my beautiful little baby daughter was diagnosed with Osteogenesis Imperfecta. My world crashed into a million pieces.
“Your daughter will not live beyond the age of nine…”

I thought I would lose my mind. I started spending every spare minute of my life researching Osteogenesis Imperfecta…finding a doctor that would help and cure my child. Thirty seven years after Vic’s diagnosis Vic finally died.
Hundreds of hours in theater; years in hospital, more years filled with pain, indignity and suffering has passed.

The beautiful world I dreamt of for my child was just that….. A dream…..a nightmare.

The death of a child is a pain so deep that it cannot be expressed in words.

The death of a child is life changing.

The loss of a child is a loss that the parent, no matter how much time goes by, will continue to mourn for their entire life. No matter how much support there is or isn’t, it is a journey a parent travels alone.

In the first year I was scared. I felt the madness gnawing on my soul. Today, I am better. I can breathe.

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But, I will NEVER stop grieving for my beautiful angel child.

and with my last dying breath I say I love you….


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This morning I came across a beautiful quote and it brought back a flood of memories of how hard Vic fought to live. Vic was born with a passion for living. Vic so desperately wanted to live. She fought for every second of her life. She battled pain, indignity, 81 abdominal surgeries…She lived with her impending death for years.

Please hear what I am writing – Vic LIVED

It is so difficult to read the journal which she kept meticiously. She recorded the cruel remarks that cut through her soul. I feel her pain and I am sure that if I had the pages foresically analysed there would be traces of tears on it. Vic’s tears….And yet, all the world ever saw was that beautiful smile of hers.

An entry from Vic's journal
An entry from Vic’s journal “OUR STORY”

Chaka 2007

Vic wanted her story told. She wanted people to know what is feels like to be cronically and terminally ill. She wanted the world to know how she experienced the switch from curative to palliative care. She wanted the world to know how helpless a sick person is. How vulnerable they are. She wanted to make a difference.

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It is her one wish I have ignored so far. As you know I have stopped blogging for almost a year. I can no longer ignore her wish. As hard as it is I have to do it.

Reading her journal I was reminded of her passion for life. How incredibly brave she was. Now, it is my turn to be brave. I will write her story. I will celebrate her life and journey. I will do my best to articulate Vic’s pain and vulnerability.

I will honour her life and wish.

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And the words that will echo in my ears will be her very last words ever… “I scream your name, but it’s too late…I’m on my way up the pearly stairway to heaven. I slowly open my eyes and with my last dying breath I say I love you.”

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I hope she hears my whisper “I love you with every fiber of by body, mind and soul my precious Angel Child”

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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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.

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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.

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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