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.
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.”
What a lovely surprise. Gillian and Len popped around for a cup of tea! What makes it unusual is the fact that they live in White River and have just been to the Sani Pass. Vic was so happy. She cried tears of happiness when she saw Len. For a precious hour today we were able to laugh and visit with dear friends.
Len is the second “oldest” living male role figure in Vic’s life. My brother Johan is the “oldest” living male role model. Gill and Len have been my dearest friends for the past 34 years. Is oldest the correct word? Len is older than Johan and yet Johan is the “oldest” male…So “oldest” in this case means the “longest around”…
Gill was so amazed. When she last saw Vic she was convinced that she would not see Vic alive again… In the meantime Vic has had her fall and technically speaking should be so much worse off. But Vic has once again bounced back.
I decided that maybe I should check the difference between critical, chronic and terminal illness. Maybe Vic is just chronically ill and the doctors got the terminology wrong.
“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects. The term chronic is usually applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and HIV/AIDS”. From Wikipedia
Critical illnesses are serious illnesses that put the afflicted in danger of possibly dying. The illnesses that are considered critical tend to vary. Typically the big four critical illnesses that are covered would be heart attack, cancer, stroke and coronary artery by-pass surgery.
“Terminal illnessis a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer”. From Wikipedia
So according to Wikipedia Vic squarely falls into the terminal illness category.
The experience of death and dying has been transformed over time by significant advances in medical care and technologies, from a short-term event into one that usually involves a prolonged time of slow decline from chronic degenerative conditions.
Let’s look at Vic. Vic was diagnosed with Osteogenesis Imperfectaas the age of 18 months. By her 3rd birthday Vic had had 41 fractures. The prognosis: – Vic would not live to be older than 12
Vic survived her 12th birthday and got married at the age of 21. Vic fell pregnant 6 weeks after the wedding. The prognosis: Vic would not survive the birth of her baby.
Vic survived the birth of Jared. When he was 7 months old Vic needed surgery to both her wrists. She had fractured both her wrists and torn the ligaments picking up her baby. When Jared was 13 months old Vic fell pregnant for the second time. The prognosis: Vic and the baby would not survive the pregnancy. Vic was on bed rest when she was 3 months into her 2nd pregnancy.
It was a difficult pregnancy. Vic survived and so did Jon-Daniel.
At the age of 26 Vic had a hysterectomy. Age 27 Vic had her blotched pro-disc surgery. Life threatening sepsis resulted in 80, mainly abdominal surgeries. Now in 2012 there is no further treatment or surgeries available. Over the past 10 years Vic has bounced between life and death. She has certainly had good times as well as bad times over the past 10 years. She has loved and hated, laughed and cried. She has had good days and real bad days. She has raised two beautiful boys to be compassionate, caring, responsible young men. Boys that have brought so much joy to their mother’s life and that make us all so proud. Young men that we know will honor their mother and their upbringing for the rest of their lives.
The difference however is that this year I believe Vic went from chronic illness to terminal illness. This year the medical profession has given up hope. Brendon has categorically stated he will perform no further gastrointestinal operations on Vic, The orthopedic surgeon refuses to pin her arm and the physician cancels blood tests… On Friday we went back to the orthopod as her hand is so swollen and the pain is getting worse in the arm. The X-rays showed that the fracture has been aggravated. The displacement worse and yet he cannot do anything. The sepsis from the spine and abdomen will spread to the arm.
Everyone has given up on Vic.
It is so soul destroying that no-one is prepared to try anymore. This year every darn doctor has refused me. I have always been able to bully them into trying one more time…just one more time. I cannot take Vic to another gastroenterologist because someone who does not know the condition of her abdomen will certainly cause her death.
Tonight, after Vic’s 23:00 medication she just sobbed and sobbed. I know her arm is really hurting. She asked me to lay with her and I held her until her sobs subsided and her breathing became deep and peaceful. She kept murmuring “I am sorry Mommy…”
Sorry for what? Vic is sorry that she has “let me down”. That she has failed at surviving and truly bouncing back. Being able to maintain a “life” and assuming responsibility for her own household and family.
Gill gently suggested that I blog happy moments… So when I sat down tonight I tried to think of happy moments to share but I could not! Gill says my blog is sad and I suppose it is. The blog however mirrors my deepest feelings.
I am sad for my beautiful little girl. I am sad seeing Vic deteriorate and her suffering increase. I am sad for my beautiful grandsons and the despair in their eyes when they look at their Mom…