“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
Muriel posted this message on Vic’s Facebook page. Today it echo’s my feelings. I am so tired of living. I am so tired of this miserable existence that we call life. Surely, there must be more to life than breathing!
Today was a day out of hell. I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating. I got up with great difficulty, showered, and made Kreemy Meal for my family. Both Jared and Vic need soft foods. I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.
Within 5 minutes, I was stuck in terrible traffic. Five lanes reduced to two…
Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!! I phoned Vic to check on her only to be told that she had gotten ill all over herself! She had to bath and I was not home to help her! I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again. Once she felt better, she would have to ask Primrose, the helper, to help her bathe. I could not leave the test site.
Danie phoned to tell me – “No Morphine Syrup – come back next week”. Some good news was that Esther came to visit and helped Vic bath. That girl is an absolute saint! Esther also took Jon-Daniel to the movies. I am so grateful that he could get out of the house of gloom and illness.
Then the system failed… The shipment would be delayed by at least another 5 weeks!
Another traffic jam to my next meeting…
An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic! A 20-minute trip became a 1.5-hour trip! Arghhhhhh
At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00. In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him. I put it through the strainer and rushed off to his room with a tray and his pureed food. I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor! I just burst into tears.
I cannot believe that something that I would normally laugh off as an accident set me off. Poor Jared had to eat soup for dinner. He is so tired of soup!
Well today, I am fed-up with life. I am tired to the core of my soul. I do not want to hear that I am doing a great job or that I am strong. I do not want to hear anything! All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.
Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party? I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill. I do know I cannot afford to cry. It distresses everyone around me.
I need a stronger anti-depressant.
I am going to bed. I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives. Life is already so hard for them. Tomorrow is another day and we will face whatever life throws at us!
“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“
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 have been researching the effect of a mother’s illness on her children. The boys are two beautiful, well-adjusted, honest and compassionate young men. Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life. At the tender age of thirteen Jared was cooking for the family… This must certainly have an effect on how the boys perceive relationships with people.
Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their parents. They in effect become p
arents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.
“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.” The boys, especially Jared, falls into this category 100%. When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode, At the time I thought it to be extremely unhealthy that he already has this caregiving character trait. He used to always make the tea and offer to do so much around the house and for his Mom.
I have put a stop to this. I pray it is not too late for the boys to adjust to a “normal” household…
It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother. Vic has raised her sons to be respectful.
“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”
Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday. When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again. This is what Vic does.
Before Jared was wheeled into theatre he whispered into his mom’s ear. She took his hand and said “I promise”.
The surgeon said the operation would last two hours. Vic dutifully went back to bed and rested. One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son. I begged her to at least sit on the chair but she refused. “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”
It took a superhuman effort but Vic’s love for her son drove her to keep her word. It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own. As Vic did. As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.
The vicious cycle of anger truly rose to the occasions on Wednesday. I got angry with Vic because she was not putting her health first! I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother. I want to wrap her in cotton so she would be spared that extra day…
Yesterday Vic said she doubted whether she would see the end of the year. She is however adamant to be at Jared’s confirmation…one more goal…
Go Girl!!!
Well, Vic is home. I am so grateful. She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!
The focus today was Hospice.
The physician came in today and suggested that once Vic is well enough to be discharged we should have her admitted to a Step-Down facility. A Step-Down facility is an in-between Hospital and Home facility…How wonderful would that be!
Vic refused.
Well, the meeting with Prof Froehlich went quite well, if she keeps to her commitment! She will engage in a discussion with the Pain Clinic’s Social Worker and Home Nursing Representative who deals with Hospice. I also got a letter from the Physician and Orthopod treating Vic at the Union. I will submit these letters to Hospice and if they refuse to treat Vic I will take them to the Constitutional Court. So help me God I will not give up!
Jon-Daniel posted on his BBM status that “No child should ever hear their mother cry from pain”. No child should have to. I know that Sunday evening’s fall (Hero to Zero) will haunt the boys and me forever!
Vic is just a bundle of pain today. Danie sat with her whilst I was at the Pain Clinic. We insisted that the boys go to Gold Reef City as planned. Jared needs to get his mind off his operation and Jon-Daniel needs to be with his big brother. They were traumatized by Vic’s fall. I hope they have a wonderful day!!
Tonight we planned on taking them to dinner as it would the last good meal that Jared will have in many months! Maybe I can find someone to sit with Vic. Jared’s surgery is major. It is to repair an underdeveloped reflux valve, hiatus hernia and creating a junction to tummy due to scar tissue formed from burning. I have a lot of confidence in the specialist surgeon. My biggest concern is how I am going to keep Vic in bed…Fortunately they will both be in the same hospital!
I am so tired. I have slept in a chair at the hospital and have no intention of leaving until Vic can cope without me. Hospitals are noisy and Vic is in so much pain when she moves!!
Today is a glorious, wonderful day!! Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!
I say “seems” because she is ill. By her own admission today, she is ill but she has decided to “live a bit”. And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……
This child of mine is so stubborn!! She truly does not know the meaning of giving up. The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die! In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story. This is one stubborn lady!
A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…
What makes her strong?
Her Heritage
Vic, My Dad, My Mom, Jared and I
Vic comes from a long line of stubborn Vikings. Vic’s maternal grandmother was an amazing person. She too was ill most of her life. From her sickbed she “controlled” our family – as Vic now does. My Mom certainly kept the family together. Her immediate family was everything to her! We only truly realized and came to appreciate her strength after her passing.
My Dad was a wonderful caregiver and provider. A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul. He was a true gentleman who never let on that he did not know who you were. Once, when he was hospitalized, I went to fetch him on his discharge. When he saw me he exclaimed “My goodness, how wonderful to see you! Imagine bumping into you here of all places…” Dad lived with us…
This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up.
Tienie, Vic’s biological dad, was an amazing person. He lived life to the fullest – every single second of it!! He did not ever want to grow old. He wanted to die young. He died young… He died living! He hated sleeping. Considered it a waste of time. He was generous even in death. He was an organ donor.
Vic and her father on her first day of school!
Tienie and I separated when Vic was very young. He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic. Vic’s paternal grandfather died from OI at the age of 35. All the other paternal grandchildren are unaffected. The only affected family member is Vic and now I believe Jared. The curse of Osteogenesis lives on in my beautiful, innocent grandson!
Vic comes from a long line of people who lived. It must be so hard for Vic to be trapped in a body that barely allows her to breath. Imagine a life of pain with absolutely no prospect of recovery…
Vic is the greatest warrior of all!! Living in the shadow of death has truly made Vic embrace life whilst she is still alive. She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…
Today is a glorious, wonderful day!! Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!
I say “seems” because she is ill. By her own admission today, she is ill but she has decided to “live a bit”. And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……
This child of mine is so stubborn!! She truly does not know the meaning of giving up. The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die! In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story. This is one stubborn lady!
A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…
What makes her strong?
Her Heritage
Vic, My Dad, My Mom, Jared and I
Vic comes from a long line of stubborn Vikings. Vic’s maternal grandmother was an amazing person. She too was ill most of her life. From her sickbed she “controlled” our family – as Vic now does. My Mom certainly kept the family together. Her immediate family was everything to her! We only truly realized and came to appreciate her strength after her passing.
My Dad was a wonderful caregiver and provider. A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul. He was a true gentleman who never let on that he did not know who you were. Once, when he was hospitalized, I went to fetch him on his discharge. When he saw me he exclaimed “My goodness, how wonderful to see you! Imagine bumping into you here of all places…” Dad lived with us…
This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up.
Tienie, Vic’s biological dad, was an amazing person. He lived life to the fullest – every single second of it!! He did not ever want to grow old. He wanted to die young. He died young… He died living! He hated sleeping. Considered it a waste of time. He was generous even in death. He was an organ donor.
Vic and her father on her first day of school!
Tienie and I separated when Vic was very young. He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic. Vic’s paternal grandfather died from OI at the age of 35. All the other paternal grandchildren are unaffected. The only affected family member is Vic and now I believe Jared. The curse of Osteogenesis lives on in my beautiful, innocent grandson!
Vic comes from a long line of people who lived. It must be so hard for Vic to be trapped in a body that barely allows her to breath. Imagine a life of pain with absolutely no prospect of recovery…
Vic is the greatest warrior of all!! Living in the shadow of death has truly made Vic embrace life whilst she is still alive. She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…
Today I researched a guide how to handle a terminally ill patient. The advise is as follows:
1. Listen, to the patient.
Tick. I like to believe that we do this. We listen to Vic’s fears, concerns and wishes. Vic does not talk a lot anymore. Her basic conversation is about how she is feeling, her pain levels and tiredness…she has discussed her last wishes, her wishes for the boys. There is nothing unsaid. All her paperwork is in place.
2. Respect their position in the family.
“If the dying loved one is a parent, then it is important to allow them to continue to live with dignity in their final days. Care for them, but don’t treat them like a child. They will be much more content knowing that they maintained the role of the parent until the very end.”
When she first moved home we really did respect her role but we are now at the stage that Vic is no longer capable of being the parent. We try and consult her on everything but it is difficult because she is either sleeping or out of it with pain. Quite frankly I think Vic is relieved that the boys are settled in and that we have assumed responsibility for them. It has also provided security for the boys. I actually disagree with this point of the “Industry Guide on Dying”
3. Share responsibility.
“A better strategy is to share and delegate care responsibilities with siblings or other family members. Sometimes only one family member takes the entire responsibility and it adds to stress or depression. Sharing the responsibility will help to reduce the burden on one person and patient also get the opportunity to talk with other members as well.”
Oops GUILTY!! “EPIC FAIL” as the boys would say. Vic is my baby girl. I do not want to delegate the responsibility of caring for Vic to anyone. Danie is amazing! He fetches and carries the boys. He has even driven to the Pain Clinic and sat there for hours waiting to get a morphine script. The boys help with small things but I try and shield them as much as possible.
It is not that Esther and Lani do not offer to help. They ask if they can help all the time. Rob and Tracy also offer help all the time. Reuben and Nonthanthle said they would come and stay at home to look after Vic if we wanted to go away for a weekend…Will I ever do it? No, No, No!!! And it is not because I don’t trust them…I am selfish! I want to spend every second I can with Vic…
My sister will come stay with Vic while Jared is in hospital.
4. Encourage them to talk.
“Giving a terminally ill individual a chance to talk about their life provides two benefits: it takes their mind off of the pain associated with their illness, and helps them find peace and satisfaction with everything they have enjoyed and accomplished throughout their lives.”
We are past this stage.
5. Seek professional help.
“The individual who is caring for a terminally ill relative will likely to be burdened with a great deal of mental stress. They may also show symptoms of anxiety or depression. Family therapy or support group or psychological counselling can help the caretaker to cope up.”
We have sought professional help for the boys. They are seeing a wonderful lady, Renee, on an informal basis. There is no way I am going now. Later maybe. I have managed to keep my emotions well packaged, together and organized.
The one thing that is missing from the Guide is that no where does it say “Seek Professional Help for the Terminally Ill person” I think this is due to the fact that is assumed that at this stage of the journey Hospice is already in place. Well, maybe in the rest of the world but not in South Africa. Hospice care is only available for AIDS and Cancer patients and then also for patients with an Advanced Neurologic Disease or Organ Failure. Osteogenesis Imperfecta does not fall into any of the categories.
A country is judged on how it cares for it’s citizens. As much as I love South Africa, our government fails it’s citizens basic constitutional rights as far as medical care goes. Is there anything I can do to change it? Well I don’t vote for the ruling party, I endeavor to alleviate poverty and to make the country a better place. I will have to find a way to improve palliative care for the dying in this country.
“Death should simply become a discreet but dignified exit of a peaceful person from a helpful society …..without pain or suffering and ultimately fear (Phillipe Aries 1981)”
Well, I am seeing Prof Froehlich on Tuesday and I will NOT leave her office until she has spoken to Hospice. For years I fought to keep Vic alive. Now I will fight for her to die with dignity! Doctors have made U-Turns in the passages when they see me – this will happen again!
So be warned Hospice. The Mother is on the Warpath!
It has been a busy weekend! Friday afternoon Reuben and Nonthanthle came to visit. Reuben is my son from another mother and Nonthanthle is his beautiful wife. She is 14 weeks pregnant with their first baby. Life and death go hand-in-hand and I wonder if this is the baby that will celebrate Vic’s life?
Reuben is a pastor in a poor community. He is an amazing person filled with love and compassion. I truly admire him for all the hurdles he has overcome in life. He is proud and yet not scared to talk about his fears. He fears that he will not be a good father to the baby… It made me think: What makes a good father?
So today, on Fathersday, I reflected on fatherhood…
I was blessed with a wonderful father. My Dad was a gentleman as well as a gentle man. He was a wonderful provider, husband, father and friend. A cruel blow of fate was dealt this wonderful, proud man when he was diagnosed with Alzheimer’s. Mercifully my dad succumbed to Alzheimer’s Pneumonia on the 20th of May 2011. So, even though I could not wish him a happy Fathersday today, I have first hand experience and knowledge of what a good father should be like…
Danie is a wonderful father to Vic. If she had been a biological child he could not have been more caring and loving than he is. Vic’s own father could not handle the guilt knowing that he was a carrier of Osteogenesis Imperfecta. He coped with the diagnosis by walking away. He could not handle seeing her broken little body knowing that it was his genes that caused it. We were so young. I no longer judge him but I am grateful that he is not around to see her suffering now. I know that when the time comes Tienie will be around to help her pass…
Vic so desperately wanted to get out of bed to be with the family at lunch. Poor poppet only made it to the bathroom. She sobbed her little heart out. Esther, gentle soul that she is, lay with Vic until her sobs subsided. .. Eventually the pain meds kicked in and she was able to sleep peacefully for a while.
I received a sms from Robbie (Vic’s friend) and she wrote ” I feel so sorry for you all. Poor Vicky. Its too awful. For all of you. One wonders if God is watching. I always pray for you but you don’t seem to have a guardian angel”
Some days I agree. Today after having the kids around for the day I disagree. Guardian angels come in many different forms. Some come as a young pastor who travels far and at great expense to come and pray for Mercy, a sister (Esther) who lies beside Vic and cries with her, another sister (Lani) who brings flowers and milk tart, a Dad who takes Vic toast and coffee at 06:30 so she can have tablets. We are surrounded by guardian angels…
I pray that Vic will have a good night’s sleep – undisturbed by pain.
I pray for just one more good day with the boys.
My heart nearly stopped when I walked into Vic’s room this morning. She looked as if she had died. Vic had had a terrible night and actually, a terrible day too.
Today, I again realized that Vic is truly a prisoner of pain and despair. For 36 years she has held onto life, against all odds. Poor precious child. I cannot help but ask the question “Why was Vic dealt such horrible cards in life?” Surely there must of been people more worthy of this tortuous life??? Oh yes, the purification process… Surely we have been through the melting ovens enough – if we have not been purified by now it will never happen! Now whoever brought this upon us – please move along!! It is someone elses’s turn.
Vic once said to me that if she believed in reincarnation she may have understood her life. She would then have believed that she was Pontius Pilate in her her previous life…
If I could change places with my child I would. If by any magic I could take over her pain and misery – even for a couple of hours, I would. I can’t!!!!!
“Where there is life there is hope”. Who came up with that stupid cliche? Vic has hoped and prayed for so long! Everyone has prayed for her. People from all continents and across all religions and denominations have prayed for her to be healed. She has been anointed with oil. And then there are those religious know-it-all’s who claim that the sins of our forefathers have brought this curse upon Vic. What absolute hogwash! How can people, who believe in a God of Mercy, make such a statement?? Either there is a God of Mercy and a Son who died for our sins or there isn’t! You cannot have it both ways!
Walk in our shoes for one day before you make such cold, uncaring, loveless statements. Look at Vic’s beautiful sons and then YOU, oh righteous, pious one, tell them that Vic’s journey is because of a curse cast on her by the God that they trust and love…
We’re all on a journey toward death anyway – how we get there, and what we’re able to do in that time is the important thing. But all journeys have an end. I pray that Vic’s journey will end! 
Vic's Final Journey 