Vic’s legacy – her story

I have not posted in a long time. I keep thinking up posts but I never seem to have writing time. I do dream of having time to write my book. No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered. The book must portray the immeasurable value of her legacy. It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.

On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice. I was given 20 minutes but I think I took much longer. I wanted people to meet Vicky. The “healthy”, carefree child/woman with a heart full of hope. I wanted people to see how during the last 10 years of her life she was stripped of so much.

And, when she realized that there was no more hope to feed on…

I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain. The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.

It felt almost “clinical”.

How do I begin to share the horror of my child’s journey? My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…

For so many years I did not sleep because I was scared I would not hear her. Physically and mentally I was exhausted. Now…I do sleep but my soul is tired.

I must capture the heartlessness of the medical profession; the lack of counseling; the importance of hope… I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.

But most importantly I must fight to keep Vic’s legacy alive. I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”

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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

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…

Vic and her boys.

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 16^th 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 1^st of January 2013 and Vic died on the 18^th 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.

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

Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube

This video touched me so deeply at every level.

I was petrified of holding Vic as a baby. I was even more petrified of anyone else holding my baby. I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks. She sucked her little thumb and fractured it… By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful. Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18^th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married. When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean… Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life. She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up. Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless. I could do nothing for my child. I had been relegated from being “the Mother” to being “the mother-in-law”. My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

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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.

Two years today

Our last coffee shop outing... — Our last coffee shop outing…

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.

Unimaginable pain

When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces. But, the pain is no longer that same raw pain. Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain. At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”. It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding. And yet, there any many things I can no longer remember. I read today that it is my body is protecting me… I am grateful for it. I am glad that I have forgotten some of the horror of Vic’s death. I am clinging to the good days.

I went away with two friends last weekend. It was amazing. We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another. The empathy stemmed from knowledge.

On our first night in the mountains I dreamt of maggots. There were maggots everywhere. I tried to kill them, but they kept crawling out of everywhere. I was scared and nauseous. I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death. I fear dying in pain and indignity. I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice. My loved ones must kiss me goodbye and leave. I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life. So much has changed in the past 516 days. I have lost more than my child. I have lost being a mother. I lost my best friend. We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight. I have lost others that I love because our pain collided.

Yet I am alive. My life goes on despite the terrible void that Vic’s death left. The boys are so amazing. Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief. The firsts never end. Every morning the pain starts all over again. The grieving never ends.

At a funeral I attended today the minister said “Grieve hard”.

I do.

If tomorrow starts without me

This played just before Vic’s memorial service started. A deadly silence descended in the church as we all sat crying for this precious child of mine. I listen to this often. I still cry when I hear the words that Vic could have spoken. How I miss my precious child.

If tomorrow starts without me,
And I’m not there to see,
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
While thinking of the many things, we didn’t get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you’ll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I’d have to leave behind;
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I’d always thought,
I didn’t want to die.
I had so much to live for, So much left yet to do,
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I’d say good-bye and kiss you
And maybe see you smile.
But then I fully realized,
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things,
I might miss come tomorrow,
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven’s gates,
I felt so much at home.
When God looked down and smiled at me,
From His great golden throne,
He said, “This is eternity, And all I’ve promised you.”
Today your life on earth is past,
But here life starts anew.
I promise no tomorrow, But today will always last,
And since each day’s the same way,
There’s no longing for the past.
You have been so faithful, So trusting and so true.
Though there were times you did some things,
You knew you shouldn’t do.
But you have been forgiven, And now at last you’re free.
So won’t you come and take my hand, And share my life with me?
So when tomorrow starts without me, Don’t think we’re far apart,
For every time you think of me, I’m right here, in your heart.

Vic’s Mother’s Day roses

Alberton-20110914-00206 — Entrance to Vic’s flat. The Iceberg Rose outside her bedroom window when it was still snow white… 14.9.2011

In 2005 I planted an Iceberg Rose outside Vic’s bedroom window. It looked pretty and gave her great pleasure.

Roses have always held a lot of meaning for me.


Red Roses: A red rose is an unmistakable expression of love. Red roses convey deep emotions – be it love, longing or desire. Red Roses can also be used to convey respect, admiration or devotion. A deep red rose can be used to convey heartfelt regret and sorrow. The number of red roses has special romantic meanings associated with them. 12 red roses is the most popular of all which conveys “Be mine” and “I love you”
White Roses: White is the color of purity, chastity and innocence. White flowers are generally associated with new beginnings and make an ideal accompaniment to a first-time bride walking down the aisle. White flowers can be used to convey sympathy or humility. They also are indicative of spirituality. Hence, white roses also follow suit.
Yellow Roses: Yellow roses are an expression of exuberance. Yellow roses evoke sunny feelings of joy, warmth and welcome. They are symbols of friendship and caring. The yellow rose, like the other roses, does not carry an undertone of romance. It indicates purely platonic emotions.
Pink Roses: There are a lot of variations of the pink rose. Over all, pink roses are used to convey gentle emotions such as admiration, joy and gratitude. Light pink rose blooms are indicative of sweetness and innocence. Deep pink rose blooms convey deep gratitude and appreciation. Pink roses also connote elegance and grace.
Orange Roses: While a yellow rose reminds us of the sun, an orange rose reminds us of a fiery blaze. These fiery blooms signify passion and energy. Orange roses can be used to express intense desire, pride and fervor. They also convey a sense of fascination. These flowers rival only the red roses as messengers of passion in romance.
Lavender Roses: A Lavender rose like its color conveys enchantment. It also expresses “love at first sight”. Darker shades of lavender roses (close to purple) convey a sense of regal majesty and splendor. These roses are used to express fascination and adoration.
Blue Roses: A perfectly blue rose is still elusive like the perfectly black rose. Blue roses cannot be achieved naturally so they represent the unattainable or the mysterious. Blue roses therefore embody the desire for the unattainable. They say “I can’t have you but I can’t stop thinking about you”
Green roses: Green is the color of harmony, of opulence, of fertility. It is also a color indicative of peace and tranquility. Green roses (these are off-white roses with shades of green) can symbolize best wishes for a prosperous new life or wishes for recovery of good health
Black Roses: Black is the color of death and farewell. A black rose, like the blue rose remains elusive. What we know as black roses are actually really dark red roses. Black roses convey the death of a feeling or idea. Sending black roses to someone indicates the death of the relationship.
Mixed Roses: By mixing rose blooms of different colors purposefully, you can create a bouquet of emotions. For example, a bouquet of red and white roses would mean I love you intensely and my intentions are honorable. A random mix of roses would convey mixed feelings or send a message: “I don’t know what my feelings are yet but I sure do like you enough to send you roses.”

The white roses symbolized Vic’s pure heart; the love that filled her precious heart… Vic had no malice in her. She was a people pleaser with an abundance of love. Vic loved passionately. There were no half measures in her life. She loved the way she lived. She loved her family, her boys, her friends. Vic loved life.

At Stepping Stone we started a memorial garden. Symbolic gestures are part of the healing. Planting a rose in memory of a loved one brings a certain amount of solace… I see people come back to check on their roses; they photograph the roses. Is it a way of clinging to something living that represents a loved one? I think it may be the case.

I awaited Mother’s Day with trepidation this year. Yet the morning dawned and I was fine. I spoke at a church on Hospice that morning. Jon-Daniel accompanied me. Poor baby. He sat through an Afrikaans sermon that I am sure he did not always follow. I stood in front of the congregation and wished all the mommies a happy Mother’s Day. I had a smile on my face but my heart wept for Vic’s precious boys who did not have a mom to celebrate the day with. I wept in my heart for me – I was childless. It was not a happy day for us.

In the afternoon we went to a nursery and bought roses for the memorial garden. The boys chose a deep pink and I chose a gentle pink. It represented Vic’s gentle nature, her femininity and “softness”. The boys said their rose reminded them of Vic’s boldness; her passion for life.

We bought Steers Burgers – Vic’s favorite hamburgers and that was indeed her last meal. We picnicked in the Stepping Stone Garden. We planted Vic’s roses and released balloons. Gentle tears ran down our cheeks as we sent up balloons filled with love and longing.

Vic's memorial Mother's Day Rose — Vic’s memorial Mother’s Day Rose

The Boys Memorial Mother's Day Rose — The Boys Memorial Mother’s Day Rose

A week ago I noticed an amazing thing. Vic’s white Iceberg roses, planted outside her bedroom window, started turning pink…

20140521_174502[1] — Vic’s message of love – white roses turning pink

My precious little Angel I am so grateful for the reminders that you are with me. I wish I could hold you but I know that you see our pain, our empty hearts and that you are trying to reassure us that you are indeed our guardian angels.

486 days…

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.

I Remember Vic

In the rising of the sun and in its going down, I remember her.
In the blowing of the wind and in the chill of winter, I remember her.
In the opening of the buds and in the rebirth of spring, I remember her.
In the blueness of the sky and in the warmth of summer, I remember her.
In the rustling of the leaves and in the beauty of autumn, I remember her.
In the beginning of the year and when it ends, I remember her.
When I am weary and in need of strength, I remember her.
When I am lost and sick at heart, I remember her.
When I have joys I yearn to share, I remember her.
So long as I live, Vic too shall live,
For Vic is a part of me, As I remember her.

I amended the words of this poem written by Rabbis Sylvan Kamens and Jack Riemer from Gates of Prayer, R.B. Gittelsohn

Stepping Stone’s first death

Vic was the first Stepping Stone Hospice death.

I was clearing up some filing at the office when I came across Vic’s case notes. Tears ran down my cheeks when I read the observation of the Hospice nurse…

21.11.2012:- Pt gradually getting weak but stable. Pain controlled and up and about

20.12.2012:- Very weak but stable. Pain controlled

3.1.2013 Pt experiencing obstruction. Started on SD (Syringe Driver). Buscopan, Zantac, morphine over 24 hours. Prognosis short

8.1.2013 Pt seen by Dr Sue, very weak. Actively dying. Not eating or drinking. Vomiting much better. Pt still responsive even in deep sleep. Continue SD

11.1.2013 Pt terminally weak but stable on SD. Actively dying. Family up to speed with progress

18.1.2013 Pt R.I.P this am. Peaceful and comfortable at home

Vic’s suffering had been reduced to a couple of lines. A couple of words. No mention of her vomiting blood or did I forget to mention it to the nurse? No mention of her being unable to breathe because of the pain. “Pain controlled”…

The pain of Vic’s death is as fresh as it was a year, a month and 11 days ago.

We have now lived many Hospice deaths. Some have been friends, some strangers that became friends and some strangers that remained strangers. I feel the pain of the mothers whose daughters died in the In-Patient-Unit. I held them and comforted them, but I could not take their pain away. I tried to prepare them for the emptiness that would follow the funeral…the guilt, the anger, the loneliness.

I know that our Nursing Sisters are compassionate and caring. I know that I would want to die in the Unit. I know the staff will light candles to shield me from the harsh fluorescent light…. I hope that Lorraine Msini will softly sing Amazing Grace as I end my journey on earth. I have truly learnt that death is not the enemy. Living is.

I no longer cry for those who are dying. I cry for the ones who are left behind. I cry for the emptiness I have seen in mothers eyes… the raw, undiluted pain… I know that when I see them in a few months’ time they would have learnt to mask that raw, undiluted pain and emptiness in their eyes.

One death, one funeral, one dying, one day….

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 First Message from Heaven

I have no doubt that my child is in Heaven. Vic lived hell everyday of her life. Maybe her journey on earth was a purifying process….I don’t know. What I do know is that Vic’s life was a lesson to most people.

Nobody can suffer a lifetime of devastating pain, indignity, loss and then still go to hell…This was her hell. It was a hell that she suffered and lived with dignity. She never stopped smiling. Often through her tears…but she smiled. Vic lived every second that she breathed.

I do believe that Vic is running free in Heaven. Running for the first time in her life… free of pain and suffering!

A year ago, today, we had Vic’s memorial service. It was incredibly sad and beautiful…it was also the day I received my first message from Heaven.

I RECEIVED MY SIGN!

Tuesday morning arrived. It had been a very long weekend. I battled with the eulogy and my broken heart. Everybody kept looking at me to make sure I was okay… Patting my hand and saying: “It is going to be okay!”

It is never going to be okay. Nothing can erase my child’s suffering and death from my mind. In time I suppose I will learn to live with the pain and longing, but it is NOT GOING TO BE FLIPPEN OKAY!!!!! EVER!!!

I have slept in Vic’s bed since her death to “demystify” her room. I also feel close to her. I can smell her in her pillow; I spray her perfume before I go to sleep.

After Vic passed and before the undertakers arrived I lay next to her lifeless little body. I spoke to her non-stop.

“Sweetie, If your soul is hovering in this room I want a clear sign from you that you are still with me…”

I woke early and prepared for the lousiest day of my life. I started chewing “Rescue” tablets. It was the only way I was going to get through the memorial service without making an absolute fool of myself. The boys looked so handsome! Their mom would have been very proud of her boys!

At the church the hearse was parked at the front door. Vic was already inside the church. A huge photo was on an easel, and at least a hundred candles were burning around the casket. The flowers were beautiful. Vic would have approved.

I sat in the pew with tears running down my face. I could not believe that my baby girl was lying in that casket! That I would never see her, never hold her again, never hear her voice again. Sitting in church I could not remember her pain and suffering only my own.

The service was beautiful! The minister spoke from his heart and shared his memories of a brave young woman with almost 200 people. He said that not many people are ever prepared for death, but Vic was to such an extent that she had planned her entire memorial service. He wiped a tear from his eyes where he spoke of Vic’s journey.

As instructed by Vic we sang “Amazing Grace” and “How great Art Thou”. I managed to sing – not a pretty sound though! My voice was all over! Vic would have giggled and told me that I sound like my mom!

I did the eulogy with the two boys standing on either side of me. At times my voice wavered and at times even I could hear how strong I sounded.

And then it was time to carry the coffin to the hearse for the FINAL part of Vic’s journey. I could hear the boys quietly sobbing as we carried Vic on her final journey. I felt my face contort with grief and tears.

The coffin was so light! I remember thinking “I wonder if Vic is really in the coffin….”

We lay single roses on the coffin. The two boys’ red roses and the rest of us pink…. Kari and Simone (Vic’s nieces) came up and stroked the coffin. They sobbed uncontrollably. I could hear people crying.

The minister said a final prayer, and it was time for Vic to leave.

The undertaker solemnly hugged me and closed the rear door of the hearse. It opened…. He pushed the coffin into position and relocked the locking mechanism. He closed the door again. Once again the door closed and opened!

“Vic is here and she is telling us she is going no where!” I said

People laughed nervously….

The undertaker unlocked the lock and pushed the coffin into position again. The undertaker locked the locking mechanism for the 3rd time. He closed the door. This time it remained closed. Vic had gotten her message through to me…I received my sign.

My precious child is still with me.

Rest in Peace Angel Child

Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.

“Rays of hope” I thought.

I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…

Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.

This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.

So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…

I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.

I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.

Rest in Peace my Angel Child. You are ALWAYS in my heart.

One year today

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…

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