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.

Thank you God 17.12.2012 – One year ago


Thank you God

I just finished a batch of choc-chip cookies.  The house is quiet and sweet smell of the biscuits has permeated the air.  The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped.  It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning.  She lanced the cellulitis abscess on Vic’s arm.  My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face.   He cried with pain.  Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated.  She has a kidney infection.  Kidney infections make her tired. I just checked on Vic, and she is sleeping so peacefully.  She has a serene expression on her beautiful face, and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home.  I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved.  I can now care for my child without having to consider my “position” in her life.  I am able to be her mommy and take care of her. The boys are settled and happy living with us.  We love having them so close to us.  They are such well-behaved, kind and helpful boys!  Before Vic moved home the boys, mainly Jared, had to cook most days.  Now they are able to be children. Life has settled into an easy routine.  We have laughter and fun.  We cry and despair.  We hug.  We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking.  She helped with the preparations for Jared’s 16th birthday party.  Vic passed me the spices when I baked this year’s Christmas cakes.  We laughed when we decided the cake needed another “splash of brandy”.  Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person.  He is my rock and pillar.  He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.  

Badge of honour


It is the silly season. The season of madness. It’s the time for holiday merriment with its relentlessly upbeat expectations, sometimes forced, especially for those of us grieving the loss of a loved one.

No matter where I or what I am doing, there is always one thought that is in the forefront of my mind: “My child is dead”. That thought can never be erased. It has become a part of my soul.

I sense an impatience in some people for me to “get over it”, “put it in the past”, “stop dwelling on your loss”, or “move forward”

Yes, I have moved forward, but I can never forget. There is an aching in my soul and a hole in my heart. There is always a part of me that is always aware that “my child is dead.” I will never be complete again. Nothing or no one can fill the place my child had in my life and heart!

Like a drowning person I am grabbing onto symbolic things – an angel garden, burning candles, a memorial light in a tree of remembrance, a Hospice….. These symbolic things simultaneously provides solace, searing pain and anger.

On Friday night the Tree of Remembrance was lit at the premises where our Hospice building is. I was filled with such immense sadness that I was unable to contain my tears. I know that I was not the only one moved by the lighting of the tree. I was flanked by a dear friend who lost her husband nine months ago and a colleague who lost her mother a year ago. Gentle tears ran down their cheeks. Jared, my eldest grandson who stood behind me, put his arms around me and whispered “I miss Mommy too…”


Many bereaved people will pretend this is just another holiday season. It isn’t. I refuse to pretend that it is.

This will be my first birthday, our first Christmas, Jared’s 17th birthday and New Year without Vic. My birthday I hope to ignore. Christmas Eve we will spend at Lani’s house with a lot of people we don’t know. I know there will be no room for thought. There will be a lot of food, gifts, talking, laughing…. Christmas Day I will go to a squatter camp with Reuben and the children in his church. We will provide the poor with a meal. Jared’s birthday – we will all make a huge effort to make special… New Year’s I will remember knowing last year that Vic was dying. That it was her last New Year.

Dick Lumaghi, bereavement coordinator for Hospice of Ukiah says “The depth of a grief is exactly proportional to the depth of attachment; from one perspective, a deep grief is a badge of honour, a big love between two people.”

I do wear my grief as a badge of honour. My precious child was gentle, kind, compassionate, beautiful, loyal and loving. She earned every tear I have ever shed. She earned ever tear I will ever shed. I wish people would understand that it’s total impossible for me to “get over it”, “put this in the past”, “stop dwelling on your loss”, or “move forward”.

I love my child. I miss my child. I want my child home with me.


An empty bottle of coffee


Vic's favorite beverage
Vic’s favorite beverage

2 months, 6 days or rather 65 days totalling 93,600 minutes or 1560 hours since Vic died…. Each minute feels like a lifetime of misery.

Every minute that passes pushes me further down into this horrible well of misery and despair.

Vic was an absolute coffee addict.  She would systematically drink her way through a 200g bottle of Jacob Kronung coffee per week. Vic drank a minimum of least 15 cups of coffee every day of her life.  Vic stopped drinking coffee just before Christmas.  It made her ill. She starting drinking Energade – naartjie flavour.  For the last month of her life it was all she drank.

Well, Vic’s last bottle of coffee is almost finished…I am dreading anyone asking for coffee…I want the coffee to last.  It is a link to my child.  How stupid does this sound??  Stupid or not it is the way I feel.  I have an unused bottle of coffee in the pantry.  I am weeping because of an almost empty bottle of coffee!

At night I lie on my sofa in my TV lounge waiting for her to either BBM or shuffle down the passage… “Could I please have some coffee Mommy?” I have cried myself into oblivion this weekend.  Danie is in Cape Town and the boys are with their Dad.  It is safe to cry.

The nights are so long without our chats.

 

 

 

The process of preparing for death


My beautiful baby girl
My beautiful baby girl

A while ago I read the following “When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death. For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death.” Terminal Illness – Preparing for Death – Dealing with Illness

Today a mere 24 days after my child stopped breathing I re-examined this statement.

“When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death.”  This is so true.  In one foul sweep everything changes!  The way one approach every day; every birthday, Christmas and New Year… One sets small goals.  You learn to appreciate the small things in life – having a cup of coffee with a friend, celebrating another Mother’s Day, living long enough to see the newborn of a loved one…

Last will and testament … setting up trusts for the children; sorting out photos; tidying up cupboards; making decisions whether to have a funeral or cremation….Just close your eyes and feel the terror of planning your own memorial service….  Feel the terror of knowing that your organs are shutting down….feel the terror of knowing that you will have to say goodbye to your loved ones – that they will walk out of your room and you will never see them again, feel the touch of their gentle hands, never hold your sons again…..  Imagine knowing that your life is running out.  Knowing that soon you will breathe your last breath!

This is what my Vic experienced.  She kept asking her BFF, Angela, “How do I say goodbye?”  Vic would cry  and hold onto Angela.  “Don’t go!  Please stay”.

Imagine being on death row with the execution date set.  The process has begun…. The condemned gets to make a will, meet his family for the last time, write his last letters, order his last meal and wonder what death will feel like…

Vic was scared.  She feared death.  She feared not knowing how death would feel….she feared closing her eyes and not ever seeing her loved ones again.

“For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death”….  What a load of hogwash!  No matter how much love surrounds the dying person there is no dignity in death.  How can death be rewarding?

It is however an amazing experience to witness the transition of the body when the soul leaves!

This time of preparation is a time filled with trepidation and fear.  Nobody KNOWS what lies beyond your final breath.  What is the Catholics are correct and you head for purgatory?  No one is sin free….What if Islam is correct and you are a Christian?  Then you are doomed to hell!  Hopefully the Christian faith will allow us entry into Heaven…. We will only know when we die!

Comforting time?  What comfort can there be in dying?  No more pain? Sure!  That is certainly comforting but what about the terrible, terrible knowledge that one will be separated from your loved ones?  The love that enshrouded you all your life will be plucked from your existence!  The love will continue but there is a divide between life and death that cannot be crossed!

Meaning to life?  Yes that is true I suppose if you are distant and removed from your family or loved ones or if you had a “purposeless” life.  Dying does give an opportunity to live each day, not waste time procrastinating or living in anger.

Dignity in death?  There is no dignity in a lingering death.  Bit by bit the terminally ill lose their dignity.  Every day there is some new loss to mourn.  The final days, if they are lucky, they will be sedated.  If not they will writhe in pain, choking on their own phlegm and gasping for breath, their hearts racing and delusional from fever.

People around the dying become scared and start praying for their deaths…I know because I did!  People stop visiting because they want to remember the dying person as a healthy, happy person….The terminally ill cease to exist to most of the world long before they die.

Stepping Stone Hospice has 26 patients.  We have had 12 deaths to date – Vic being the first.  Stepping Stone has allowed the dying to die pain-free.  Maybe the rewarding ending is for the living?

 

 

 

 

 

Rest in Peace My Angle Child 22.1.2013


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Where do I start?  How do I begin a farewell when I still can’t believe you’re gone?  How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love.  I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever.  Over the years people have complimented me for being a good mother but I truly cannot take credit for that.  You were born good, and great and amazing.  You were the one who taught me lessons in life.  I believe you are an angel God sent to teach me.

You taught me love.  You taught me honesty.  You taught me to love unconditionally.  You taught me how to forgive and how to be strong.  You are the strongest person I have ever known.  You gave me strength when I was weak.  When times were sad and tough you reminded me to be grateful for the small things in life.  You taught me how to be myself.  Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing.   It was so important to you to live.  And that you did.  You gave birth to not one beautiful baby but two!  You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world.  You rewrote medical history.  You defied death for so many years… You mocked bad news and a poor prognosis…

 

You made me so proud.  You have always been my greatest pride and joy.  At school you excelled as a pianist.  As a mommy you were an example to all.  As a dying person you were brave beyond words.

I’m not sure how I can live this life without you.  You worried about me just as much as I worried about you.  You told everyone how worried you were that I would not cope without you.  You fought so hard to stay alive.  You fought until you gave your very last breath.  You did not want to leave your boys.  You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you.  You made an incredible impact on the world.  You left two monuments of your love and mothering skills.  Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come.  It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you  started seeing angels.  You saw Gramps, Uncle Dries, your father and Auntie Marlene.  Then a week before your passing you said “My whole room is full of angels”  You fought to stay alive every single day of your life.  Eleven months ago you called a family meeting and told us that you had decided enough is enough.  No more surgeries.  No more hospitals.

Over the past 11 months you made your final wishes known.  You planned your memorial service.  You spoke to the boys about what was important.  I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body.  But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life.  You were always my first and last thought.  I feel numb and as if I am in a bubble.  You will be happy to know that we have been surrounded by love and support.  But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore.  But then I think, how can I be sad when I know you’re in a better place?  How can I be sad when you brought me so much happiness?   How can I be sad when God is already working miracles through you?  How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother?  How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes?  I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted.  We love them so much.  No-one in the world can ever take your place.  We promise we will keep your memories alive.  We will honour our promises to you.

So now we must bid you farewell.  It is your time to run, free from pain and suffering.  We will always love you.  We will never forget you.

Rest in Peace my Angel Child.