Nothing in the world can ever prepare a parent for that moment when the death sentence is pronounced over your beloved child. I remember it as if it was yesterday.
Thank God Vic was in ICU and heavily sedated at the time. Brendan told us in the passage of the Donald Gordon. Colin and I went into shock. We did not ask a single question. We just looked at him … Mute for that dreadful, heart wrenching, moment.
Later that day Colin and I went to Brendan’s consulting rooms and spoke with him. I had so many questions and he had so few answers. He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly. The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s. The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts. There would come a stage when they could no longer operate or her little body could not take the strain anymore…
Strange Vic knew…when she eventually came round she knew that life as she knew it was over.
When I broke the news to her she was calm. See, all her life she knew that eventually this day would come.
The doctor recommended that we get in touch with Hospice. We did. We had a family meeting. Colin parents, Danie and I and Vic and Colin. Colin went through an anger phase. He felt let down… he thought they would grow old together. They had two little boys aged 3 and 5… So many challenges! So many emotions. So many medical bills! In 2002 Vic’s medical costs were R3.2m. ICU Pharmacy accounts ran into the hundreds of thousands of rands!
With terminal illness come HUGE medical bills. As long as there is money the doctors will operate and treat, hospitals will admit and treat… Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.
When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.
Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.
Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again. In their lives Vic no longer lives….
When the time comes I wish I could have a “by invite only” funeral for Vic. If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral? It has been 10 years and 
Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned. The control of acute and chronic pain is the biggest challenge that we face. Medication every four hours is a challenge. The days are fine but the nights – well that’s a different matter. It is easier to stay awake until 03:00 and then go to sleep. Danie or the boys are up by 07:00 so I sleep in. Getting enough pain medication prescribed is the BIGGEST challenge of all. Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!
The other issues that we have to contend with is constipation, nausea and weakness. Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back. Showering and shaving her legs is a challenge. Almost the biggest challenge is Vic’s hair! Vic has a thick bunch of hair and she will not wash and towel dry it! Her hair must be blow dried!
Vic went through many stages – anger, sadness, anxiety, and fear. It is strange that at first we all go into denial. Even now I still do. Vic said earlier this week: ” Mommy, I am so happy I will be around for Jared’s confirmation. I know I won’t be at Jon-Daniel’s confirmation” I immediately retaliated and said “Of course you will be baby. You just have to keep fighting” Why did I feel compelled to make an empty promise?
Vic’s emotions are real. Touch is comforting to her. She loves being hugged, touched, kissed. She appreciates the truth.
If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.
Vic is now tired and ready to die.
Vic regrets not going to Italy. She desperately wants to go to Chaka’s Rock one more time. She wants to see her boys grow up. She wants to make a speech at their 21st birthdays!
As a family, there is nothing unsaid. We love Vic and she knows it. She will continue to live even after she stopped breathing. We will honor her wishes for the boys and keep her memory alive. Vic may stop breathing one day but she will always live in our hearts.
I started this blog because I don’t trust myself to talk. If I start crying I may not stop. Actually I don’t have too many people to talk to. For the past 10 years we have been waiting for Vic to die. Initially, I think, people believe, that holding a dying person’s hand in the final hours is “romantic” but then the person doesn’t die…and the world moves along. People carry on with their own lives. That is just the way it is. People battle to handle the emotion, the waiting, the suffering. And it is okay for them to move on.
It is not only other peoples fault’s. I don’t have time to visit, go for coffee, phone… It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family. Many of my old friends must think I deserted them. Maybe I have but time in every which way has deserted me.
I have been moved by old friends and acquaintances sending me messages of support. Thank you all. I had no idea that people would actually read my blog.
Earlier today I read an blog written by Michael Wolff, a writer, where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true. I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye
Good news! Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her. She will do an experimental “procedure” on Vic next week. Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion. Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance. That will be so merciful!! Vic takes 400mg of morphine, in tablet form, twice a day. She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain. The meds is not what is causing her sleeping.
Vic sleeps 95% of the time. When she is awake it is to whimper or vomit.
Jared has started to display symptoms of severe stress. His school marks are dropping and he doesn’t sleep. Like me, he is awake every couple of hours to check on his Mom. Jon-Daniel doesn’t talk. He just carries on. I worry about him – how will he handle The Day, when it comes?
In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls. Especially on Vic and the Boys souls…
Vic's Final Journey 