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.
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.
The number 20 is considered as ominous for saint Jerome because it indicates the universal fight, but it also represents the source of all energy of the world.
This number is represented in Hebrew by the letter caph, in form of opened hand, to seize and hold. The eleventh mystery of the Tarot, which corresponds to this letter, and consequently with this number, is “the Force” which expresses energy, the activity, the work, according to R. Allendy.
Number associated to the resurrection or to the reincarnation, according to Creusot.
Bible
Samson had judged Israel for twenty years. (Jg 16,31)
Under the commandment of Elisha, twenty barley loaves are enough to feed hundred persons. (2 K 4,42-44)
God asked Moses to make the census of all the community of Israelis being twenty years old and more. (Nb 1,3)
Jacob spent twenty years at Laban before to escape. (Gn 31,38)
General
One month in the religious calendar Maya contained twenty days.
Magic square of 20:
8 6 4 2
4 2 8 6
2 4 6 8
6 8 2 4
Number of characters of the alphabet of bards.
Anniversary of marriage: weddings of porcelain of China.
Occurrence
The number 20 is used 117 times in the Bible.
The number 24 is used 20 times in the Bible.
The number 20 is used only once in the Koran. (Koran VIII, 66)
The names of Cain and Rome are used 20 times in the Bible.
It is Friday again. Twenty weeks ago my beautiful Vic died. Twenty sounds too “little”. It feels too “much”. Twenty was always such a magical figure…Twenty had an allure of its own. Twenty always felt like the “almost adult” number. I remember when I was twenty years old I was so excited about turning 21…coming of age!
Now twenty represents the number of weeks that we have wept and longed for the presence of Vic.
I wrote “Mommy, I am sick” Every time Vic opens her eyes she utters these words.
Will she win what we believe to be the final round? Life aka Vicky vs. Death… Ten long, long years she has fought with every fibre in her little body. I sense that she is tired. Ready to concede defeat… She says she isn’t scared. I am! I am scared of facing life without my baby.
Now I have already faced 20 weeks of living without my baby.
On the 17th of May 2012 I posted this. It was my first blog post ever. I was however something I had written ion the 27th of November 2003
How could I ever think that I want my child back? It is over. Vic is at peace and pain free. The pain has transferred to me…
My dearest child
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in,poison flowing through your veins… You are dying
I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her. I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid. I know that Vic did not share all her fears and thoughts with me. She was trying to protect me.
Today I read a bittersweet post. I wept when I read the words. It was as if I heard Vic’s voice…felt her fear…
Bittersweet
June 4, 2013 by sugarmagzz | 6 CommentsIt happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified. This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…The look on Owen’s face when he sees Disney World for the first time.The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.Owen’s high school and college graduation ceremonies, his wedding.Ashlei’s wedding, the birth of her children, becoming an Aunt.Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.Grandchildren.I will not see these momentous occasions, they will occur without my physical presence. I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.
Tonight I am doubting myself again. I wonder – did I comfort my child enough? Why was this precious child of mine condemned to a life of horrible pain and suffering? She never truly lived! Why did she die and bad people continue to live and prosper? Why was she deprived of a future??? She was such a good person!!!!!
I want to hold her and protect her. I want to tell her how much I love her. That she is the best thing that ever happened to me. That my life is empty without her. That I understood her fears.
“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, respect and admire 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 2 am one morning that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma.
…..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!
Sixteen years ago today, my beloved mother lost her battle against the septicaemia ravaging her tiny little body. I woke up this morning thinking “well at least this year Mom has Dad and Vic with her…”
Christmas many years ago…Vic and her Gramps and Moekie
It was very hard for me to come to terms with my Mom’s death. I spoke to her every day of my life regardless of where I was in the world. I was a real “Mommy’s Girl”. Mom adored Vic. They were so close.
I was cruising (I know “surfing” is the correct terminology) the web looking at bereavement sites when I saw that on the 9th of December 2012 it was Compassionate Friends 16th Worldwide Candle Lighting. The 9th of December is my birthday. It was a special birthday – my last with my precious child. Worldwide bereaved parents were lighting candles for their dead children…This year I shall join them in sorrow – lighting up the world.…
I found a section “To the Newly Bereaved”. It is now 4 months and seventeen days or 137 days since Vic died. Am I still a newly bereaved parent or am I becoming a seasoned bereaved parent?
When your child has died, suddenly it seems like all meaning has been drained from your life. When you wake in the morning, it’s difficult to get out of bed, much less live a “normal” life. All that was right with the world now seems wrong and you’re wondering when, or if, you’ll ever feel better.
We’ve been there ourselves and understand some of the pain you are feeling right now. We are truly glad that you have found us but profoundly saddened by the reason. We know that you are trying to find your way in a bewildering experience for which no one can truly be prepared.
When you’re newly bereaved, suddenly you find yourself on an emotional roller-coaster where you have no idea what to expect next. Here are thoughts on some of what you may be experiencing or feeling (many of these will apply to bereaved siblings and grandparents):
Psychological
You’re in shock from what has happened and a numbness surrounds you to help shield you from the pain. I thought I was going to lose my mind when Vic died. The pain was unbearable. Now numbness has settled in. It is a survival mechanism.
You find yourself in denial. Your child cannot be dead. You expect to see your child walk through the door any moment. No – I have passed this stage. Vic is dead. She will never shuffle down the passage again.
You see your child in the faces of others walking down the street. No – Vic was uniquely beautiful. I wish I could see her face on a walking body because that may erase some horrible memories from my mind.
You wonder how someone can feel this much pain and survive. Absolutely!
Thoughts of suicide briefly enter your mind. You tell yourself you want to die—and yet you want to live to take care of your family and honor your child’s memory. Absolutely!
You want to know how the people around you can go about their day as if nothing has happened—don’t they understand that your life—everything that meant anything to you—has just ended? Your purpose in life is gone. Absolutely
You are no longer afraid of death as each day that passes puts you one day closer to being with your child. Absolutely yes!!!!
Thoughts of “what ifs” enter your mind as you play out scenarios that you believe would have saved your child. Yes
Your memory has suddenly become clouded. You’re shrouded in forgetfulness. You’ll be driving down the road and not know where you are or remember where you’re going. As you walk, you may find yourself involved in “little accidents” because you’re in a haze. Absolutely
You fear that you are going crazy. I fear I am…
You find there’s a videotape that constantly plays in an endless loop in your mind, running through what happened. I try very hard not to think about it
You find your belief system is shaken and you try to sort out what this means to your faith. Yes
Placing impossible deadlines on yourself, you go back to work, but find that your mind wanders and it’s difficult to function efficiently or, some days, at all. Others wonder when you’ll be over “it,” not understanding that you’ll never be the same person you were before your child died—and the passage of time will not make you so. Absolutely correct!
You find yourself reading the same paragraph over and over again trying to understand what someone else has written. Yes – it is scary. I watch TV programs and cannot remember the show afterwards.
Emotional
You rail against the injustice of not being allowed the choice to die instead of your child. ABSOLUTELY CORRECT!!!!
You find yourself filled with anger, whether it be at your partner, a person you believe is responsible for your child’s death, God, yourself, and even your child for dying. ABSOLUTELY CORRECT!!!!
You yearn to have five minutes, an hour, a day back with your child so you can tell your child of your love or thoughts left unsaid. No, I have no unspoken words or emotions. I just want her back with me!
Guilt becomes a powerful companion as you blame yourself for the death of your child. Rationally you know that you were not to blame—you most certainly would have saved your child if you’d been given the chance. Thank God this phase has passed.
You feel great sadness and depression as you wrestle with the idea that everything important to you has been taken from you. Your future has been ruined and nothing can ever make it right. My life will never be the same again. I wonder whether I will ever experience true happiness again.
Physical
Either you can’t sleep at all or you sleep all the time. You feel physical exhaustion even when you have slept. Have these people moved into my home? This is absolutely true.
You no longer care about your health and taking care of yourself—it just doesn’t seem that important anymore. Maybe….
You’re feeling anxiety and great discomfort—you’re told they’re panic attacks. No
The tears come when you least expect them. Absolutely
Your appetite is either gone or you find yourself overeating. Oh yes!
Family & Social
If you have surviving children, you find yourself suddenly overprotective, not wanting to allow them out of your sight. Yet you feel like a bad parent because it’s so difficult to focus on their needs when you’re hurting so bad yourself. I am petrified of not being with the boys all the time. I hate not being with them! I am stressed when they are with their father or friends. I am terrified of leaving them to go overseas…
You find that your remaining family at home grieves the loss differently and you search for a common ground which seems difficult to find. Yes
You’ve been told by well-meaning people, even professionals, that 70-80-90 percent of all couples divorce after their child dies. You are relieved to find that new studies show a much lower divorce rate, from 12-16%, believed to be caused by the “shared experience” aspect of the situation. We have gone through a very rough time in our marriage. We have worked through it. But I can see that it is a distinct possibility in a newly bereaved situation.
Old friends seem to fade away as you learn they cannot comprehend the extent or length of your grief. No…they faded away when Vic was ill and she did not die soon enough
Things you liked to do which seemed so important before now seem meaningless. Absolutely correct
Others say you’ll someday find “closure,” not understanding that closure never applies when it is the death of your child. Darn right!
Fleeting thoughts of pleasurable activities bring about feelings of guilt. If you child can’t have fun, how can you do anything that brings you enjoyment? Maybe
When a child is born we laugh, cry with joy and celebrate; when a loved one dies we cry with heartbreak and mourn. We spend a lifetime celebrating life. Grief too deserves time, attention, honour and embracing.
Grief is painful, yet it gives us a glimpse of Heaven – afterlife… Life after death…
I have seen a quite a few people die. Mostly very close family… my mom, my mother-in-law, my dad and my precious child. I have seen strangers die – patients in TB hospitals, AIDS patients in hospital; a young man burning to death after a car accident…
My Mom died when she developed septicaemia from surgery. She was confused from the raging fever and the infection ravaging her little body. Mom knew that it would be her last surgery. She said that she would not survive the operation and was prepared for death. Mom died with my dad and us kids standing around her bed – taking turns to pray for her. Like Vic she fought for life until death won the battle.
The day my mom-in-law died I sat next to her bed. It was just the two of us. I asked her whether she was scared. She smiled and shook her head. I know that she looked forward to death…to the afterlife. Hours later when this gracious lady just stopped breathing her children and I were standing around her bed. We were singing her favourite hymn. Her death was gentle and dignified.
My Dad was not aware of the fact that he was dying… He developed Alzheimer’s pneumonia and gently lapsed into a coma. My dad just forgot how to breathe. If he was aware of the fact that he was dying I think he would have been surprised. He did not “know” he was dying. I know he would have been grateful that he had been spared that final indignity of Alzheimer’s. He died the way he lived – with dignity and gentleness…
My precious child died fighting. She had so much left to do. She had children to raise. Vic, like my mom, did not know how to not fight to live another day…
I suppose we all have pre-conceived ideas of how people should handle death emotionally and spiritually. For years I would ask Vic whether she had asked God for forgiveness and mercy before she went into theatre for more surgery…Later in life I thought how stupid of me. Vic lived a life, obedient to the greatest commandment – To love God with mind, body and soul….and her neighbour… I knew that Vic had made peace with God. In death Vic requested Last Communion… Her spiritual rituals were taken care off.
Vic said her goodbyes. It was heart-breaking for everyone who loved her. She needed to hear that we would honour her memory, not forget what she represented in life. She needed to hear that her sons would remember her as their Mother and not use her as an excuse. She thanked people over and over for their friendship and love; their caring and loyalty…
Nothing was left unsaid. I read somewhere “something said or not said, something you wish you had done differently, can stick inside you like a splinter.”
The scenes of death that I have witnessed and lived through were sacred. I saw souls depart from the bodies of my loved ones… I saw that there is more than life-sustaining organs to a body. There is a soul…There is no comparison to the appearance of the body after the soul has left the body.
I saw Vic’s father’s soul leave his body five days before he was declared brain-dead. I was standing next to his hospital bed asking him for forgiveness. I realised standing there that I was not the only one who suffered from our divorce. I realised that I too had caused him pain. I spoke to him about God and Heaven – I prayed for him. One bloody tear ran down his check. He continued to breathe on the ventilator, but I felt his soul leave his body.
The willingness to sit at death’s bedside – to embrace the loss experiences in our lives – opens a window into Heaven. I do not fear death. I know when my time comes I will embrace death knowing that I will be reunited with my child, my parents, loved ones, friends…the ones I leave behind will eventually follow and join us. When something leaves it goes somewhere. It is a displacement of energy.
I have often compared Vicky and my lives with the lives of Aurora Greenway (Shirley MacLaine) and her daughter Emma (Debra Winger). Terms of Endearment cover three decades in the lives of widow Aurora Greenway (Shirley MacLaine) and her daughter Emma (Debra Winger).
Fiercely protected by Aurora throughout childhood, Emma runs into resistance from her mother when she marries wishy-washy college teacher Flap (Jeff Daniels). Seventy five minutes into the movie Emma discovers that she has terminal cancer. http://www.rottentomatoes.com/m/terms_of_endearment/
The final third of the movie is about Emma dying and the family’s journey coming to terms with it.
Aurora, the mother, is a sharp-tongued, controlling mother who is fiercely protective of her only daughter. Emma, the daughter, is a rebel… Just like Vic and I were.
I was distraught, like Aurora, when I found out Vic was pregnant. I hated the foetus that was growing in her body… I knew it could kill her. The second I lay eyes on Jared, I experienced a rush of love that has never been equalled…Don’t misunderstand me – I love all my grandchildren equally. But, when I first saw Jared I knew I was capable of perfect love.
Aurora grows to love her grandchildren with that perfect love.
Aurora and I are not the touchy types. Vic and Emma would hug and hold on forever. I was often uncomfortable with the “excessive” display of emotion. Vic and I always held hands but I get uncomfortable with long hugs….being that close to another person for a “long” time. Vic thought I was the worse hugger ever. There was a day that Vic said “You have not gone all stiff Mommy. That was a perfect hug.” In the movie there is a scene where mother and daughter hug. Emma Horton says: “Momma, that’s the first time I stopped hugging first. I like that.”
Then of course there is the dreadful hospital scenes where Emma is in so much pain. Aurora is calm, matter of fact and placating when she talks to her beloved daughter. She loses her calm exterior the minute that she walks out of the room into the nurses’ station.
Aurora Greenway: It’s past ten. My daughter is in pain. I don’t understand why she has to have this pain. All she has to do is hold out until ten, and IT’S PAST TEN! My daughter is in pain, can’t you understand that! GIVE MY DAUGHTER THE SHOT!
Whilst I was with Vic I smiled, I encouraged and placated…the minute I walked out of Vic’s hospital room God help the sister or doctor I got hold off… Doctors made U-Turns when they saw me waiting for them; Brendan actually said he was scared of me and would not want to bump into me in a dark passage.
But that is what Mother’s do. We fight for our children. We protect them at all costs and with total disregard to the rest of the world.
Living with a terminally ill child is devastating. I wanted to fold Vic into my arms, lock out the world and the disease, and protect her from pain. In the real world we fight with our dying child to keep on fighting, look after themselves, to do what we believe is right… We fight for them, with them…..We fight for their lives.
This fragile balance and relationship is beautifully depicted in Terms of Endearment when the mother (Aurora Greenway) says: I just don’t want to fight anymore.
Aurora Greenway: WHEN do we FIGHT? I always think of us as fighting!
Emma Horton: That’s because you’re never satisfied with me.
Vic often used similar words. She would never “space” herself. Half a breath of oxygen in her lungs and she was driving and organising a party. I would fight and remind her that driving (under the influence of humungous quantities of morphine) invariably lead to a fractured vertebrae or two…
“Don’t fight with me Mommy” she would say.
4th of January 2013
The most moving scheme in the movie is when Emma says goodbye to her sons. In the two years, before her dying, her eldest son had withdrawn from her.
Emma Horton: I know you like me. I know it. For the last year or two, you’ve been pretending like you hate me. I love you very much. I love you as much as I love anybody, as much as I love myself. And in a few years when I haven’t been around to be on your tail about something or irritating you, you could… remember that time that I bought you the baseball glove when you thought we were too broke. You know? Or when I read you those stories? Or when I let you goof off instead of mowing the lawn? Lots of things like that. And you’re gonna realize that you love me. And maybe you’re gonna feel badly, because you never told me. But don’t – I know that you love me. So don’t ever do that to yourself, all right?
Vic was so worried about Jon-Daniel. He withdrew during her very ill spells. I remember the one night when she crawled into bed with me. She was crying bitterly. https://tersiaburger.com/2012/05/23/23-5-2012/ She spoke about how Jon-Daniel would suffer from guilt after she died. “Tell him I say thank-you for making me laugh”
Jon-Daniel and his brave Mommy – January 2013
In the dying scene Emma folds her hand under her chin. Vic always slept with her little hand under her chin.
I am posting two interesting articles. These are not medical opinions. The first on fruit I reposted this from an email that I received. The originator is apparently a Dr Stephen Mak who makes wild claims of curing 80% of all cancers with a fruit diet. I don’t believe that at all. But that is my personal opinion. I love fruit and could quite honestly live on fruit. I did find it interesting that one should only eat fruit on an empty stomach.
I know that grated apple and celery on an empty stomach is a 100% cure for constipation.
We all think eating fruits means just buying fruits, cutting it and just popping it into our mouths. It’s not as easy as you think. It’s important to know how and when to eat.
What is the correct way of eating fruits?
IT MEANS NOT EATING FRUITS AFTER YOUR MEALS! * FRUITS SHOULD BE EATEN ON AN EMPTY STOMACH. If you eat fruit like that, it will play a major role to detoxify your system, supplying you with a great deal of energy for weight loss and other life activities.
FRUIT IS THE MOST IMPORTANT FOOD. Let’s say you eat two slices of bread and then a slice of fruit. The slice of fruit is ready to go straight through the stomach into the intestines, but it is prevented from doing so. In the meantime the whole meal rots and ferments and turns to acid. The minute the fruit comes into contact with the food in the stomach and digestive juices, the entire mass of food begins to spoil….
So please eat your fruits on an empty stomach or before your meals! You have heard people complaining — every time I eat watermelon I burp, when I eat durian my stomach bloats up, when I eat a banana I feel like running to the toilet, etc — actually all this will not arise if you eat the fruit on an empty stomach. The fruit mixes with the putrefying other food and produces gas and hence you will bloat!
Graying hair, balding, nervous outburst, and dark circles under the eyes all these will NOT happen if you take fruits on an empty stomach.
There is no such thing as some fruits, like orange and lemon are acidic, because all fruits become alkaline in our body, according to Dr. Herbert Shelton who did research on this matter. If you have mastered the correct way of eating fruits, you have the SECRET of beauty, longevity, health, energy, happiness and normal weight.
When you need to drink fruit juice – drink only fresh fruit juice, NOT from the cans. Don’t even drink juice that has been heated up. Don’t eat cooked fruits because you don’t get the nutrients at all. You only get to taste. Cooking destroys all the vitamins.
But eating a whole fruit is better than drinking the juice. If you should drink the juice, drink it mouthful by mouthful slowly, because you must let it mix with your saliva before swallowing it. You can go on a 3-day fruit fast to cleanse your body. Just eat fruits and drink fruit juice throughout the 3 days and you will be surprised when your friends tell you how radiant you look!
KIWI: Tiny but mighty. This is a good source of POTASIUM, MAGNESIUM, VITAMIN E & FIBER. Its VITAMIN C content is twice that of an orange.
Photo Credit: Wise Geeks
APPLE: An apple a day keeps the doctor away? Although an apple has a low VITAMIN C content, it has antioxidants & flavonoids which enhances the activity of VITAMIN C thereby helping to lower the risks of colon cancer, heart attack & stroke.
STRAWBERRY: Protective Fruit. Strawberries have the highest total antioxidant power among major fruits & protect the body from cancer-causing, blood vessel-clogging free radicals.
ORANGE: Sweetest medicine. Taking 2-4 oranges a day may help keep colds away, lower cholesterol, prevent & dissolve kidney stones as well as lessens the risk of colon cancer.
WATERMELON: Coolest thirst quencher. Composed of 92% water, it is also packed with a giant dose of glutathione, which helps boost our immune system. They are also a key source of lycopene — the cancer fighting oxidant. Other nutrients found in watermelon are VITAMIN C & POTASIUM.
GUAVA & PAPAYA: Top awards for vitamin C. They are the clear winners for their high VITAMIN C content… Guava is also rich in FIBER, which helps prevent constipation. PAPAYA is rich in CAROTENE; this is good for your eyes.
Drinking Cold water after a meal = CANCER! Can u believe this???? For those who like to drink cold water, this article is applicable to you. It is nice to have a cup of cold drink (water or juice) after and/or during a meal. However, the cold water will solidify the oily stuff that you have just consumed. It will slow down the digestion. Once this ‘sludge’ reacts with the acid, it will break down and be absorbed by the intestine faster than the solid food. It will line the intestine. Very soon, this will turn into fats and lead to cancer. It is best to drink hot soup or warm water after a meal.
A serious note about heart attacks…….. HEART ATTACK PROCEDURE’: (THIS IS NOT A JOKE!) Women should know that not every heart attack symptom is going to be the left arm hurting. Be aware of intense pain in the jaw line. You may never have the first chest pain during the course of a heart attack. Nausea and intense sweating are also common symptoms. Sixty percent of people who have a heart attack while they are asleep do not wake up. Pain in the jaw can wake you from a sound sleep. Let’s be careful and be aware. The more we know the better chance we could survive.
Photo Credit: Westmidlands Health UK
The 1 minute stroke test – By Peggy PeckWebMD Health News
Feb. 13, 2003 (Phoenix) — A team of stroke researchers has devised a one-minute test that can be used by ordinary people to diagnose stroke — and the test is so simple that even a child can use it. Such an easy, quick test could potentially save thousands of stroke sufferers from the disabling effects by allowing faster treatment.
“It is just three simple steps” says Jane Brice, MD, assistant professor of emergency medicine at the University of North Carolina-Chapel Hill School of Medicine. Brice tells WebMD that the test is based on a scale developed by researchers at the University of Cincinnati. The three-part test, called the Cincinnati Pre-Hospital Stroke Scale (CPSS), can be used to diagnose most strokes, says Brice.
Brice and her colleagues measured the accuracy of the test by first teaching it to 100 healthy bystanders. The bystanders then performed the test on stroke survivors. To diagnose a stroke, the bystanders performed the following three steps:
1. Bystander told the patients, “Show me your teeth.” The “smile test” is used to check for one-sided facial weakness — a classic sign of stroke.
2. Then the patients were told to close their eyes and raise their arms. Stroke patients usually cannot raise both arms to the same height, a sign of arm weakness.
3. Finally, the patients were asked to repeat a simple sentence to check for slurring of speech, which is another classic sign of stroke. “In Cincinnati, the researchers asked patients to say, ‘The sky is blue in Cincinnati,'” says Brice. But in the study, the researchers varied four simple phrases such as “Don’t cry over spilled milk.”
Overall, 97% of the bystanders were able to accurately follow the directions for giving the test, says Amy S. Hurwitz, a medical student at UNC who helped design the study.
The bystanders were 96% accurate at detecting speech problems and 97% accurate at spotting one-sided arm weakness. They were less accurate at detecting facial weakness — with only a 72% accuracy rate for this test. But Hurwitz says, “It is difficult to detect differences in the smile of a stranger. We are hoping that in most cases the ‘bystander’ will actually be someone who knows the patient and so an unusual smile will be apparent.”
A cardiologist says if everyone who gets this mail, sends it to 10 people, you can be sure that we’ll save at least one life.
This post is all about pain and the myths and realities in hospice care
Palliative care usually starts too late. We see it on a daily basis at Stepping Stone Hospice… Most patients die within days of becoming patients. Doctors continue to treat the patients until days before their death. Referring a patient to Hospice means “conceding defeat”.
If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without. It is a total fallacy that Hospice patients die sooner than non-hospice patients.
Survival Periods For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079). This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression. The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792). http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf
World Health Organization (WHO) definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated withlife-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice
Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”
The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.
Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.
Myth:“My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”
Reality:In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.
Myth: “It is best to wait until the pain is severe before taking pain medications.”
Reality:It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.
Myth:“People who take strong narcotic pain medication become addicted.”
Reality:Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.
Myth: “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”
Reality:Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.
Myth: “The side effects of strong pain medications make people too sleepy.”
Reality: The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.
Myth:“Once you start taking morphine, the end is always near.”
Reality:Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.
Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.
I know that Hospice provided my child with life. I believe that Vic would have died months earlier if she had not been treated by Hospice. It is a basic human right to die with dignity. I am grateful that Vic had the privilege of dying with dignity.
In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.
Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.
We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.
Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….
We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…
My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…
One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”
“Of course I love my family! Why are you asking such a question?” I replied
“Because you are never home….”
I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.
So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!
In 2009 my Dad came to live with us. He suffered from Alzheimer’s.
Dad and I
Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.
I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.
I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.
It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.
My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.
I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.
Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.
My life centred round my sick child and family.
Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.
How amazing is this?
If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….
Vic's Final Journey 