Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Today the concrete foundation was laid of our Stepping Stone Hospice’s building.
26.6.2013
It was a “moment” when I saw the concrete being poured. The builder, bless his soul, ordered extra cement and we now have a veranda area as well as a concrete path where our patients will leave our building for the last time… We also received a donation of a oxygenator.
I asked the builder if I could put a photo of Vic’s into the foundation of the building. He thought it was a wonderful idea. I phoned the boys, and they brought me their favorite photos of Vic and I. We placed it in plastic sleeves and embedded it in the foundation. It was covered with concrete.
Vic has been immortalised in the foundation of Stepping Stone Hospice.
Perhaps because Vic was cremated, it was an emotional moment for all of us seeing her being “buried” in cement. I know it was purely symbolic, but it was sad.
I am glad the day is over. I am grateful that I am one day closer to being reunited with my precious child.
Tonight I fulfilled one more of Vic’s wishes.
Twenty five years ago Vic was the bridesmaid at my brother and sister-in-laws wedding. She looked beautiful in a real grown-up pink dress… They gave her a string of perfect little pearls which she treasured and wore on very special occasions.
After Vic died I came across the string of pearls with a little note.
The note read: “25 years ago Johan and Henda gave me these because I was their bridesmaid. I would like to now return it to them…”
She wrote them a note telling them how much she loved them. She told my brother that he was her hero. She told my sister-in-law that she was amazing….
A gentle death, when comfort, caring, and presence are priorities, is invariable a death at home or in the peaceful surroundings of a Hospice In-Patient Unit. The opportunity to have your loved one drift away peacefully, in the comfort of their own home, in their favourite bed or in your arms, with their loved ones there at their side, is truly a gift of immeasurable worth.
Too often doctors keep treating the actively dying person aggressively. The ill person accepts the aggressive treatments doctors keep piling on them even though there is no benefit to be derived from it. At this stage of the terminally ill patient their medical care controls their lives. Pain, NG tubes, stomach tubing, IV tubing, catheters…. They remain hooked up to all sorts of beeping, pumping devices until the bitter end. We are conditioned to accept aggressive life-prolonging treatment that often destroys our family’s financial stability and quality of life.
2007
This is what the medical profession is trained to do. To heal…
It is so hard to die with all the medical technology and treatments available. People no longer die of heart attacks. People go onto preventative cholesterol and blood pressure treatments. They become old enough to develop Alzheimers…
What changes have occurred which mean we are now living longer than previous generations?
During the twentieth century, life expectancy rose dramatically amongst the world’s wealthiest populations from around 50 to over 75 years. This increase can be attributed to a number of factors including improvements in public health, nutrition and medicine. Vaccinations and antibiotics greatly reduced deaths in childhood, health and safety in manual workplaces improved and fewer people smoked. As a result of this – coupled with a decline in the fertility rate – many major industrial countries are facing an ageing population.
According to UN statistics for the period 2005 – 2010, Japan has the world’s highest life of expectancy of 82.6 years followed by Hong Kong 82.2 years and Iceland 81.8 year). The world average is 67.2 years and the UK average is 79.4 years. The average South African is expected to live to at least 60 years, an increased figure when compared with the 2005 figure of 53 years. .
During the Roman Empire, Romans had an approximate life expectancy of 22 to 25 years. In 1900, the world life expectancy was approximately 30 years, and in 1985 it was about 62 years, just five years short of today’s life expectancy.
Why are we living longer? Well in South Africa or even Africa it is because of revised HIV Anti Retro Vital policies. HIV has become a chronic illness. It is no longer a life-threatening illness. As long as you take your ARV’s you will be fine!
Improved food packaging and an increased awareness of the nutritional value of food have led to healthier lifestyles. Increased fitness levels and the reduction of smoking have also paid a major contribution in increasing life expectancy world-wide.
Adverts on buses and tubes inform us of the importance of washing our hands and covering our mouths when we cough or sneeze in order to reduce the spread of illnesses and diseases. Health and safety legislation provides strict regulations for hygiene in restaurants, hospitals and factories.
This is great but we have an increasing older population suffering from diseases like Alzheimers and Parkinson’s. I don’t believe that it is the environment or lifestyle that has led to this. Years ago people simply died younger… Our grandparents were OLD at the age of 60. Now 70 year olds have knee replacements and still play sport.
Vic was diagnosed at the age of 18 months with Osteogenesis Imperfecta. At the time it was a death sentence. I remember the professor telling us that she would not live to the age of 12.
We celebrated her 12th birthday, her 16th, 18th, 21 and 30th birthdays…We celebrated her 38th birthday. Every birthday from her 27th birthday became more difficult. The doctors and I fought to keep her alive.
Keeping her alive came at a price. Eight one (81) abdominal surgeries, literally years in hospitals, pipes and tubes in every orifice of my child’s little body, prodding and prying by strangers hands. She was stripped of her dignity. At times litres of faecal matter poured out of her intestines into bags and bottles….She had to drink revolting liquids, tablets crushed and vomit until she fractured vertebrae.
Why did we not allow her to die with dignity? Why did we fight for her life? Why did we sentence this poor child a violent life filled with suffering and pain? Because I was selfish. I drilled fighting and survival into her little brain from the age of 18 months. Vic did not know how to not fight.
The greatest gift I ever gave Vic was to respect her wishes and allow her to die. It was the most difficult thing I have ever had to do… Retreat and not fight!
July 2012
St. Francis of Assisi portrays death as “kind and gentle” in the hymn “All Creatures of our God and King”. This is certainly a minority view in our culture and faith. It speaks of a familiarity with death that seems to have been more prevalent in previous generations than it is today. Society sanitizes death. In a culture devoted to the avoidance of suffering, a culture that lives as if this life were all there is, it’s not surprising that we relegate death to the morticians. Morticians do the final honour. They wash and prepare our dead for the last time…
We avoid the sick and funerals. We relegate our dying to a noisy hospital room with beeping machines and staff on a schedule. No gentle music and candles – just harsh hospital lights and a lot of noise 24 hours a day. Hospitals are not trained in palliative care – only curing.
When someone is dying, everyone has to wait. It takes time. All of us have a different timetable. Some wait mere hours. Some drag on for days, others, weeks. It is a lesson in patience. And it is a time when “being” edges ahead of “doing”, and just being present your loved one’s bedside is seen as the ultimate act of service.
We must allow our dying and infirm to die a gentle death. We must HEAR what they are asking! Are they ASKING for more invasive treatment or the right to die a gentle death?
Vic 15.1.2013
Five months and 7 and a half hours ago I allowed my most precious child to die a gentle death. If I had not ignored her wishes her suffering would have ended many years ago. I have to live with this.
Today it is 5 months since Vic died. I am trying to get Vic’s estate done (not doing well at all!!) and came across a file with a letter addressed to me.
It flashed through my mind…”A letter from heaven!”
It is not a recent letter. It is a letter that Vic wrote years ago. How do I know? It was with her old Last Will and Testament.
I am grateful for the letter. I am heartbroken that I am reading it.
Someone wrote a poem for me. I am grateful for the hand of comfort that was extended by a stranger. This stranger happens to be ill and suffer debilitating pain.
This was my song for Vic. I played it for her all the time. We spoke about the words and the meaning of the words.
Today it is 21 weeks since I have been able to touch my child, hold her, brush her hair. I know that she is around me, but I feel so alone without her. Vic was my dearest friend, my companion, my daughter, my soul mate.
Yes, Vic is in my heart. Not a minute goes by that I don’t think of her, miss her…. But I really want her to be with me. When will this pain end? When will I come to terms with the fact that I am alone now.
Yes, I know I am surrounded by people who love me…I know they are worried about me… But nobody can fill the void that Vic’s death has left.
I feel alone even when I am surrounded by lots of people, family….
Nothing in the world could have prepared me for this thing called “grief”. This devastating sorrow.
This weekend I will work in the garden and start preparing Vic’s Angel Garden. I don’t want my child in a friggin garden – I want her in my home. I want her sneaking up behind me and kissing me on the cheek. I want to hear her voice saying “I love you Mommy”. I want to tell her how much I love her.
I want to hear her talking to her boys. Telling them she loves them the “mostest in the world”; reminding them to brush their teeth
I don’t want to feel this sorrow and pain. I want to be happy again.
Thinking of You with Love
We thought of you with love today,
but that is nothing new.
We thought about you yesterday,
and days before that too.
We think of you in silence,
we often speak your name.
All we have are memories,
and your picture in a frame.
Your memory is our keepsake,
with which we will never part.
God has you in His keeping,
we have you in our hearts.
A million times we`ve wanted you.
A million times we cried.
If love could only have saved you,
you never would have died.
It broke our hearts to lose you.
But you didn`t go alone.
For a part of us went with you…
the day God called you Home.
~Author Unknown
I have never consciously given thought to the difference between the words “love” and “cherish.”
Today I did.
The definition of love is as follows:
Love/ləv/
Noun An intense feeling of deep affection: “their love for their country”.Verb Feel a deep romantic or sexual attachment to (someone): “do you love me?”.Synonyms noun. affection – fondness – darling – passion verb. like – be fond of – fancy – adore
The definition of cher•ish is as follows: /ˈCHeriSH/ Verb Protect and care for (someone) lovingly: “he cherished me in his heart”. Hold (something) dear.
Synonyms nurse – nourish – foster
The Latin phrase for Cherish is Alo (alui Altum), Alo (alui Altum) is defined as: nourish, cherish, support, sustain, maintain, keep.
To cherish someone means to treat them with affection and tenderness, to hold them dear – close to our hearts. To me “cherish” implies gentleness, tenderness, respect and friendship; purity of emotion….
We feel cherished when we feel precious….Feelings of being cherished takes me back to my childhood. When my parents loved me unconditionally and I was ensconced in this amazing feeling of being treasured, protected, cared for….safe.
We all crave to be cherished by our friends, family and loved ones. When we are cherished we have a warm, “safe” feeling within the relationship.
It explained to me why I felt safe in some friendships… There are relationships where I feel loved and then there are relationships where I feel cherished. I am tough. A friend once said I was as strong as the rock of Gibraltar. Little did he know how vulnerable I was at that stage of my life….
I suppose we feel loved by the ones who do not necessarily look out for us and protect us and cherished by those who go the extra mile and have our backs.
Love is easy. We love family because we are bound by blood, DNA of the heart, memories, intellectual and physical attraction. We love our car, our homes, our pets… We cherish our children, some friends, our memories…
Yet there are many people who will not allow others to cherish them —for example, someone who exhausts herself helping others, but when she needs help herself quickly says, “No thank you, I’m fine.”
The irony is that often these people experience a kind of elemental disbelief when they feel uncherished and think someone has let them down. “Oh no! It can’t be! Why am I not loved?” A sense of loss, a basic anxiety, grips them.
I know that I will move the world for my loved ones. Yet I find it hard to allow people close enough to me, to “cherish” me…I am a do-er. I get embarrassed when people “do” things for me…
I recall once Lani wanted to give me a hand massage…I was too embarrassed to allow it…. I stayed busy to avoid the intimacy of being cherished by someone I love dearly…
There is a difference between cherish and love. I find it hard to allow people to cherish me because that means I have to trust them with my heart and soul. Love is less intimidating…
I am grateful that I am able to love and cherish. I am grateful that people have patiently hacked away at my defences and love and cherish me…
Today I miss my precious child whom I love and cherish and who loved and cherished me….
Until 2012, there were “at least” one million families in China that had lost their only child, Xinhua wrote in a separate report carried by the Jinghua Times. About 76,000 families are added to the sad roster each year, it said.
There is a special term for the parents that has lost their only child….”shidu” family.
In the rest of the world the average woman gives birth to 2.75 children.
I gave birth to one. My only birth child has died. I am a “shidu”
Today I am (again) desperately missing my child. I feel as if I have lost my future. I only have my past. But I know that is not true. I have Vic’s two amazing son’s to care for; 4 precious stepchildren; 9 step grandchildren that I love like my own…
Many years ago when Danie proposed I asked God for a clear sign. I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives. I asked for a clear scripture!
I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”
I immediately went back on my knees and prayed again. “God, thank you for the scripture you gave me but what about all the children?”
I opened my Bible and it fell open on page 793 of the Old Testament. Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “
My answer was a prophesy… Not only is my life filled with these precious people but I now also have Izak, Reuben, Nonthanthle and Shekinah to love. I am blessed.
Does this however fill the void that Vic’s death has left?
I feel ungrateful for being in this well of despair whilst I am not alone. I am motherless not childless. The fact remains that I desperately miss my child. My life is empty. I have lost my future.
Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…
Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation! Next week construction will start and by the end of the month we will move in!
Behind the building there is a duck pond and a quaint little chapel. I look forward to planting some roses in the garden! We anticipate wheeling our day-care patients into the garden so they can feed the ducks.
Of course we do not have furniture yet. The boys are donating the furniture for the two Dignity Rooms (dying rooms). It was their decision! We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…
Yesterday I was at the site and I was looking at the terrain that they were clearing. All of a sudden there was this perfect white feather…Another message from you Angel. Thank you. I needed a sign…
Stepping Stone Hospice is daunting. This week an article appeared in the Tames Times. It opened a floodgate of telephone calls… An elderly man called. His voice was raw with grief and despair. His wife is dying from liver cancer and he is going through all those familiar caregiver anguish. How will he know when it is time? But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time…. Quite a few new patients this week…so much pain and fear…
We have had wonderful offers of help. A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions!
I am amazed at the goodness and generosity of people. The company that donated the building belongs to a young man, Jaco Schultz. You would have liked him my angel. He is really a nice young man with a “white heart”.
I can hear you asking “Where did you find him Mommy?”
I did not find him. He found us! Long story…here is the short version!
We sell second-hand clothing to raise funds… El-Marie, Jaco’s sister took 14 bags of clothing to Trix. Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients). Two weeks later she dropped off more bags and asked whether we could meet her brother…
The meeting itself was quite funny. It was when I had that terrible flu. The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die. Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012? She was at the meeting. I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience. It must have looked so funny! Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs!
Jaco asked to see the terrain, and we went on a walk-about. He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!
Within weeks the promise is becoming a reality. Construction starts next week! I am so excited! So my Angel Girl, there was a purpose to your suffering after all. I wish it was differentbut it isn’t. We have been blessed beyond comprehension.
I believe that God is personally overseeing this project.
Vic's Final Journey 