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.
This poem is for you Daddy. You are my hero; the best father in the world. You loved unconditionally. you held onto your dignity with superhuman effort….
I was so proud of you. You clung to your old-fashioned manners and values until death.
I am glad you died with your dignity intact. I loved you every day of your life and will continue to love you every day of my life.
A special PoemDo not ask me to remember.Don’t try to make me understand.Let me rest and know you’re with me.Kiss my cheek and hold my hand.I’m confused beyond your concept.I am sad and sick and lost.All I know is that I need youTo be with me at all cost.Do not lose your patience with me.Do not scold or curse or cry.I can’t help the way I’m acting,Can’t be different ‘though I try.Just remember that I need you,That the best of me is gone.Please don’t fail to stand beside me,Love me ’till my life is done.– UnknownMy Dad a month before his death….it was such a wonderful day!My dad and I on my wedding daySimply the bestVic adored her Gramps and he adored her!
I read this lovely post that truly brought a smile to my face. – Thank you Kate! This post brought a smile to my face and a lovely memory moment to my heart. I am not going to spoil this funny post by telling you what it is about as I would encourage you to pop over and read it personally. I cannot do it justice. http://kateswaffer.com/2013/05/28/tuesday-humour-is-god-a-woman/
For one or other reason this post reminded me of a funny incident when Vic was in Gr 2 at a Convent.
Vic was a very bright little girl and a natural-born leader. She was an excellent little speller. Vic was never allowed to participate in any Physical Training lessons at school. The poor little poppet had to sit and watch her little friends running around, honing their developmental skills through exercise.
It is not clear what the reason was, but one of her little friends decided that she would join Vic on the benches – just watching. Maybe she forgot her PT clothes at home, maybe she wanted to keep Vic company – who knows? Mrs Bowling was the PT teacher. The kids were pretty scared of her… She had a booming voice and intimidating stature.
When I arrived at school that afternoon I was taken aside by Vic’s class teacher, Sr Norbitt. In a hushed tone she told me that I had to see the principal… There had been an “incident”. Dear Sr Norbitt’s face had a disapproving scowl on it, but she did assure me that Vicky was not ill or hurt…
I was asked to take a seat in the principal’s office. I was really very concerned that something serious had happened.
Mother Superior proceeded to tell me that Vic’s little friend had presented a letter to Mrs Bowling excusing her from PT. She took out the note and I immediately recognised Vic’s baby handwriting…big, perfectly rounded letters saying…
“Dear Mrs BowlingMirella can not do PT. She is sick. She has X-RaysMirella Mommy”
When the girls were confronted with this very obvious forgery, they admitted that Vic had written the letter because she was the best speller in the class and knew about diseases because she was always sick… Vic wanted to really impress the girls but the only “sick” word she could spell was….. X-Rays!
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 busy with my child’s estate. It is absolutely horrible!!!!!!
Today, 131 days after Vic died, I have to complete an insurance form. The question I cannot answer is “Date of Cremation”. I did not want to know! This is another date that will stick to my memory until the day I die…. I had to send an email to the undertaker. I await his reply.
I held my child death certificate and Notice of Death form DHA-1663A in my hands… On page 1 of 3 is Vic’s tiny little thumbprints, on page 2 of 3 – my thumbprint. I am listed as the “informant”. On page 3 of 3 the thumbprint of the Undertaker…
Form number DHA-1663A
The darn certificates are smudged with tears now. Oh well, tough luck!!
No parent should ever have to do, whatever executors have to do, for their child… It feels as if my heart was ripped out of my chest!
To-do list: OUTSTANDING FORMS TO SUBMIT
DEATH NOTICE – FORM J294
PARTICULARS OF NEXT-OF-KIN FORM J192
INVENTORY – FORM J243
ACCEPTANCE OF TRUST AS EXECUTOR
CREDITORS LIST
AFFIDAVIT RE EXECUTORSHIP
SPECIAL POWER OF ATTORNEY
INSURANCE POLICY CLAIMS
I DON’T EVEN KNOW WHO TO SUBMIT THESE STUPID DARN FORMS TO!! I suppose there will be a website somewhere that will tell me.
I woke up crying this morning. I wept for my child, my motherless grandsons, Izak, who has gone to a forever home, my blogger friend Julie @ http://jmgoyder.wordpress.com/ who is going through a dreadful time; Len @ http://myownheart.me/ who still counts the days since her precious Klysta died, Morgan’s Mom…Sandra @ http://thedrsays.org/ dying from congenital heart failure… I did not want to get out of bed.
Well, I eventually did and found this wonderful email from my friend, Christelle. It brought a smile to my face, and I decided that I MUST share it with all of you… I hope it brings a smile to your face too…
Life isn’t about how to survive the storm,
but how to dance in the rain.
If you are having a bad day, remember it could be worse…..
I am starting to forget Vic’s pain, the relentless nausea, intestinal obstructions, cramping. I have blocked all the excursions to doctors, Radiology and Pathology Departments…the countless “Bad News” meeting with doctors. I now focus on my longing for her. The good and funny times…
I am unable to remain angry for a long time. Well, at least with people I love. I forgive easily. Life is too short, and negative energy drains me. Danie, my husband, believes I have a split personality. If, or rather when we have an argument, I will say what I want to say. I play the ball and not the man. I don’t get personal nor do I generalise. Within minutes of the argument I would have forgotten I am angry and start chatting again as if nothing ever happened. Danie will sulk and stay angry for days…
When I have been harmed by malicious people, I forget. They no longer “exist” in my life, but I don’t walk around with anger in me. I will remain civil. I just don’t care anymore.
The bad thing about this wonderful brain of mine is that it also blocks out the good parts of bad memories… As I no longer have a daughter to cure I Googled my own “symptoms” and found the following information http://io9.com/5952297/two-ways-to-forget-bad-memories-according-to-a-new-scientific-study “One mechanism, directsuppression, disengages episodic retrieval through the systemic inhibition of hippocampal processing that originates from right dorsolateral prefrontal cortex (PFC). The opposite mechanism, thought substitution, instead engages retrieval processes to occupy the limited focus of awareness with a substitute memory. It is mediated by interactions between left caudal and midventrolateral PFC that support the selective retrieval of substitutes in the context of prepotent, unwanted memories.”
Specifically, individuals could remember what caused the event, but were able to forget what happened and how it made them feel. Co-author Professor MacLeod said: ‘The capacity to engage in this kind of intentional forgetting may be critical to our ability to maintain coherent images about who we are and what we are like.’
In one of my posts, https://tersiaburger.com/2013/05/25/most-influential-blogger-award/, I wrote that I would like to meet Nelson Mandela. A blogger friend commented on it and it triggered something in my mind. I HAVE met Nelson Mandela. I should have articulated it differently – I should have said I would like to talk to him.
It was a horrible time of our lives when Vic started going to the Pain Clinic. Her pain was out of control – or so I thought. It was actually just “preparation school” for what was yet to come…. I was mortified that she was on 600 mg of morphine, a week…. When Hospice accepted Vic onto the program, she was already on 600mg of morphine, twice per day.
I digress.
Vic needed to consult with an anaesthetist, specialising in pain control, on a monthly basis to examined, her pain evaluated and to get a new prescription for the morphine. It was one of those dreadful experimental phases of her life. But, bad things lead to great things…
The Pain Clinic was in an élite part of our city. It was a schlep to get to it and took hours out of a day.
This particular day Vic was in terrible pain, and it was difficult moving her from the car into the wheelchair. Her beautiful eyes were dark from pain and filled with tears. I remember thinking “How tiny and sad she looks”…
We stood at the elevator for what felt like a lifetime. All I wanted to do was get Vic into the consulting rooms so she could get an injection for pain… I was getting quite impatient with the delay of the lift when it started moving down. I noticed quite a build-up of people on the outer periphery but did not pay too much attention to it.
The door opened. Two tall men, wearing sunglasses, walked out. There was an audible gasp in the hall. The greatest statesman in the world, Nelson Rolihlahla Mandela, stood behind them. He was so tall!
In total awe I moved Vic’s wheelchair back clearing the way for this amazing man.
He walked out of the lift and came towards us. He stood in front of Vic, stuck out his hand, and said “Hello my dear. How are you?”
“I hope you feel better soon,” he said in his beautiful, raspy yet gentle voice.
He greeted me, still holding her hand. I will never forget his gentle eyes. He had an aura of greatness. Two great warriors were locked in a moment of kinship.
“Goodbye” he said and walked away.
Death is however closing in on this amazing man. This year, by the Grace of God, our country and the rest of the world will celebrate this great man’s 95th birthday. Given his poor health and advanced age, it is to be expected that he will die not too far in the future. It will be a sad day for South Africa and the rest of the world.
I know that he will meet Vic again in Heaven. I believe that the two brave souls will recognise one another. This time there will be enough time for them to linger and chat. The people they are- it will be about their loved ones, the grace they experienced in their lives… I know they will not discuss the hardship, pain or suffering.
Two incredible people… Nelson Rohihlahla Mandela and Vicky Bruce. Hero’s of many… two people who have made a difference, lead by example.
“Oh Mr President, my mom is your biggest fan ever…”
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….
Trouble neglect you
And heaven accept you when its time to go home
May you always have plenty
The glass never empty
Know in your belly
You’re never alone
May your tears come from laughing
You find friends worth having
With every year passing
They mean more than gold
May you win but stay humble,
Smile more than grumble
And know when you stumble
You’re never alone
Chorus: Never alone
Never alone
I’ll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn’t goodbye
My love will follow you stay with you
Baby you’re never alone
well
I have to be honest
As much as I want it
I’m not gonna promise that the cold winds won’t blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone
Chorus
May the angels protect you
Trouble neglect you
And heaven accept you when its time to go home
And when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone
Chorus
My love will follow you stay with you Baby you’re never alone
Yesterday morning I teared up – again. Danie asked “And now? What’s wrong?”
“Just missing Vic” I said
“Shame” he said with sadness in his voice. “I miss her too”
We spoke about how my grief had changed over the past four months. Today it is exactly four months since my precious child died. I keep using the words “death and died” and not the gentler “passed”… I do that because death is harsh. My child DIED, she is DEAD. My pain is as real as it was 4 months ago. My grief is however no longer as transparent as it was to the world.
Four months ago when Vic died my body physically hurt. My heart was physically aching. The pain was new. Now my grief is in me, part of me as if it is a limb or organ… My grief is hidden from the world. If I did not tell you, you would never know.
To the world – I seem to have adjusted to the loss of my child. I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…
“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sunrises every morning.
Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”
We just keep on living with it and do the best we are able to do.”
I miss Vic more today than I did four months ago. I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free. It is becoming more difficult to see the positive side of Vic’s death. My mind is blocking out the horror of her suffering! I am remembering the good times only.
I hear you say “It is good” No, It is not good! If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.
The night that haunts my sister
My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me. She said Vic was crying and saying “Mommy I am so sore. I can’t do this anymore” Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting?????? On the 13th of November I posted “Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!” https://tersiaburger.com/2012/11/13/signposts-for-dying/
I want my child back with me. I want to hold her, tell her I love her. I want to hear her footsteps in the passage; I want to hear her voice…
I had a total meltdown today. Maybe because I heard last night that a couple are adopting baby Izak. Izak is the beautiful 8 month old foster son of Lani and Tom’s. The poor little angel was abandoned as a day-old baby at a taxi-rank.
This precious baby boy stole my heart and proved to me that one little boy can truly change peoples hearts.
But, the time has come for him to be blessed with loving parents in a permanent home. He is one of the lucky few.
We live in a country with hundreds of thousands of orphans and abandoned children. We do not have enough orphanages to accommodate all our orphans and abandoned children. The children continue to live in their shacks or homes after the death of their parents and often the head of the family could be as young as 11 years…
DIscipline is one of the few problems that arises from the situation. Children grow up with no social skills, no education and often suffer brain damage and poor physical development due to malnutrition.
One way or another the communities take care of their own. We seldom hear of a child starving to death or dying from exposure.
Baby Izak was one of the lucky ones to end up in a loving foster home. He looks at his “mommy” with absolute adoration in his soulful eyes. He loves touching my face and is a great hugger!
He is an intelligent, happy baby. He is ahead on all his milestones. His biological mom has AIDS, but thanks to the ARV program of our government Izak is healthy and not HIV positive!
I am sad that he is leaving our family. I am devastated that for the 2nd time this year I have to say goodbye to someone that I love dearly. I pray that he will be loved and be allowed to develop to his full potential. I pray that his new parents will protect him.
On Friday we have to say goodbye to this precious baby. I won’t go! Last Saturday he fell asleep on my lap. I want to remember that. I cannot bear to hold him even one more time just to have to let him go too.
So baby boy, I hope that you will know that I love you. I will always carry the memory of you in my heart. I am grateful that you enriched my life. I will never forget you. I hope you will continue to change peoples lives and perceptions. I know you have the potential to become the president of our beautiful country.
In my heart you are my grandson and will always be.
It happened without warning…
Vic's Final Journey 