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…”
Vic in 2007
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”
… 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.
…..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.
……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!
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.
But, I will NEVER stop grieving for my beautiful angel child.
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.
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.
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.
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.
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.
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.”
I hope she hears my whisper “I love you with every fiber of by body, mind and soul my precious Angel 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…
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.
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.
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…
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.
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.
In Memory of Vicky
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.
486 days; 1 year, 4 months; 69 weeks….
Oh dear God, will this pain never stop? Will my heart ever heal? Will I ever be able to look at a photograph without tears welling up in my eyes? No matter where I am or who I am with – I miss my precious Angel Child.
I know your pain is over. Remember the night you crawled into bed with me and I told you that I looked forward to your pain being over? Did you know that night how many tears I would shed for you? Did you know that my life would change forever?
Yes, I know you did. Your words echo through my mind…”Mommy, I am so worried about you. How will you cope when I am gone?”
My stock standard reply was “I will cope baby. I will remember your pain and be glad that it is over”. How stupid of me.
As time goes by I forget how sick you were my precious little one.
Then I look through my photos. I see your pain. I see death in your beautiful eyes.
You knew how hard it would be. In your infinite wisdom you tried to prepare me. You tried to prepare the boys… Sweetie, nobody or nothing in the world could have prepared me for the pain, the loneliness, the void…
Sometimes I wonder how many days it will be until we meet again. I pray it is soon. This is just too hard.
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…..
Friday morning, as the first rays of the new day peeped through the clouds, a brave young mother breathed her last breath. She was surrounded by her mother, her two daughters, her ex-husband and a friend… Seconds earlier her mom was whispering words of love to her. Telling her it is okay to go… Friday afternoon I attended the funeral of another brave young mother who had died at Stepping Stone. She died with her mom and Hospice volunteers next to her bed. Earlier we had sung for her, prayed for her… Her family could not bear to see her dying and abandoned her and her mom in her final days. This brave young woman had a beautiful smile on her lips when the undertakers arrived to remove her cancer ravished body. At the funeral pink balloons were sent into the sky
Friday evening I stood in the room of a father and husband who was dying. The youngest son sitting slumped in a chair. His eyes red and swollen. At the foot end of the bed a stepson smelling of alcohol. “Had a couple of beers tonight Pop. At least four for you” he said. “He was a man’s man. He came home drunk every night of his life. He lived his life! He provided well for my mom. He worked and played hard.” he said with admiration in his voice… My thoughts went back to earlier that day when the dying man’s wife tried to hug him. “F…. off… F…. off” he told her. His wife wept for him. She stayed with him. She will mourn for him.
My precious child
Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…
If feels as if a lifetime of sorrow has passed since you stopped breathing. If feels as if it has been a lifetime since I held you in my arms. It feels as if I have cried an ocean of tears.
In the past year I have aged. I have gained weight. I have existed. A year ago my life ended. The boys and I still burn candles for you.
I am still filled with rage. I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity. I know that you would more than likely have died before me but perhaps with less suffering?
I will always miss you. I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.
Today I want to thank you for my beautiful grandsons. Thank you for remaining my little girl through-out your life. Thank you for fighting for so long. You were such a warrior!
I thank God that you came home to die. I thank God that I had the privilege of caring for you. I thank God that He entrusted me with something as pure and precious as you.
I am grateful that you are no longer fracturing vertebrae from vomiting. As much as I miss your laugh I do not miss your pain filled tears. I am grateful precious baby that your suffering is over.
I miss your company. I miss our late night chats, drinking untold cups of tea/coffee. I miss your text messages, your telephone calls, your shuffling footsteps down the passage… the smell of smoke alerting me that you are awake and sitting on your step…
I miss the boys laughter. I miss the joy that you brought into our lives.
We will continue to honour your memory – every day of our lives. Your legacy will live on in each and every person that is allowed to live until they die with dignity.
I love you Angel Child with every fiber in my body.
Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…
I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…
Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…
Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…