1423 days


I have survived 1423 days (3 years, 10 months, 23 days) without my beloved child.  

It has become easier.  I am used to the pain.  I am at peace with the fact that my child’s suffering is over.  I honor her memory every day of my life.  Every day, when I walk through the In-Patient-Unit of Stepping Stone Hospice I thank her for her selfless request that “no-one should suffer the way she did”.

Families talk to me about my brave little warrior and thank me.  Thank me?  I don’t think so.  I would never have had the guts to start a Hospice.  I would still be lying in my bed grieving.

Life has been hard without Vic.  It was so difficult getting my life back on track after she died.  I have missed her wisdom and guidance with the boys,  I have resented the fact that I have become a backup mother to my precious grandsons.  I wanted to be a mother and a grandmother.  I hated being a bereaved mother.  I still do.

Our lives have settled.  Until May this year.

On the 31st of May, I received a phone call from Jared (eldest grandson) to tell me his father had died.  I was filled with terror, heartache, and fear.  My go-to person was no longer around to advise me and run interference with the boys.

I was in England at the time of Colin’s death.  I flew back the same afternoon.  All I can remember of the flight was how my face ached from crying. I was heartbroken leaving my little UK granddaughters behind.  They sobbed.  I sobbed.  We all sobbed.  I dreaded arriving in South Africa and facing the boys’ heartache.  I was consumed with guilt that I wasn’t with them on that horrible day.

I arrived in South Africa to meet two dazed young men.  I had to go and identify Colin at the mortuary and once again arrange the funeral of a child.

On the surface, the boys were brave and yet so devastated.  I was heartbroken.  At a certain level, Colin’s funeral was more difficult than Vic’s.  Colin was young and healthy.  He had truly connected with the boys and they loved spending time with him and his new family to be.  They loved being part of a family.  Vic had been ill for so many years and her suffering inhuman.  I was relieved that her suffering was over.

But Colin was so young and alive.  He had so much to live for.  So much to give.  He was at peace with his life and in love with a wonderful woman.

The day Colin’s clothes were brought into Stepping Stone Hospice, as a donation, I had a total meltdown.  It was the second time a child of mine’s clothes were donated to Hospice.

Yet, time passed and I am once again getting used to the pain.  That horrible empty feeling in your heart when you suffer a great loss…

I read many blogs and I often wondered why people remained stuck in their grief.  I wondered why they were unable to move forward…

Vic’s eldest son started displaying signs of PTS (Post-traumatic stress).  He suffers from panic attacks  and stopped wanting to be home.  He was angry with the world and especially me.

There are many reasons for this and it is not for me to write about his reasons.

What I am able to write about is the fact that Jared was trying so hard to protect his little brother and I from the pain and trauma of Vic’s death that he never dealt with it for himself.  He spread his angel wings over us and never stopped looking to see whether we are okay or not.

Now this beautiful, “parentified” young man is caught up in a cycle of trying to deal with the layers of grief resulting from his parents’ deaths.  He is working so hard to learn how to deal with his complicated/compound grief.  He is brave and beautiful.  He is in so much pain.

But, I know that in time he will heal.  He is no longer avoiding his grief.  He is dealing with the cancer in his heart eating away at the very grain of his soul.

I pray that I will have the wisdom to guide him through this difficult time in his life as he guided his brother and me through the first years after Vic’s passing.  I pray that he will always remember my love for him.  I pray that I will learn to cope with my guilt of not protecting him from something that I was aware of…

I now know why people remain locked into that cycle of grief.

https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

Vic succeeded at life…


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

so sick

Vic in 2007

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Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

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… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

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…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

Vic’s monuments…

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

 

Vic loving World Cup 2010

……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

 

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

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.

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.

Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

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Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

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Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

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It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

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I hate my life.  I wish I were dead.

As I sit in Heaven


As I sit in Heaven
And watch you everyday
I try to let you know with signs
I never went away
I hear you when you’re laughing
and watch you as you sleep
I even place my arms around you
To calm you as you weep
I see you wish the days away
Begging to have me home
So I try to send you signs
So you know you are not alone
Don’t feel guilty that you have
Life that was denied to me
Heaven is truly beautiful
Just you wait and see
So Live your life, laugh again
Enjoy yourself, be free
Then I know with every breath you take
You’ll be taking one for me

http://www.wittyprofiles.com/q/666762121

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