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.
Vicky Bruce, brave warrior, beloved mother of Jared and Jon-Daniel Sadie, beautiful daughter of Tersia and Danie Burger, sister and friend lost her brave battle against Osteogenesis Imperfecta on 18 January 2013. Finally, you can run angel child! Your incredible will to live and your beautiful soul will live on in your amazing sons. They are truly monuments that will honour you forever. You are finally free and reunited with you Daddy, Moekie and Gramps.! Run Vic run! Love you now and forever baby!
Last night I had a discussion with someone who Vic loves very dearly. This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic. She is actually the only person that has truly travelled this horrific journey with us. Vic has lived through many death sentences and reprieves. Lee has been around for at least the past 7 years of Vic’s journey. Vic has nursed Vic back to health many times and I know she cares deeply for Vic, her friend.
I discussed the various treatment options with her. Do I insist on having a stent fitted or do I request feeding tubes? Or do I go with Vic’s non-intervention wish? But if I comply how do I bring calmness and peace in Vic’s life? Vic is no exception to the rule…As Bella pointed out last night even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.
Last night I decided no sedation. If I allow sedation, which is against her wishes, I will silence Vic’s voice, her fears and her tears.
Dr Sue says the bleeding is from the abdomen. Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting. Her breathing is shallow and her heart rate weak but very rapid. Her blood pressure is dropping and her circulation is poor. The liver is very enlarged.
We are past the point of no return. Vicky is dying and only a miracle can save her. There is no operation, no magic medication, and no nothing that can save her.
Today I again witnessed her anguish and phenomenal will to live. I saw Vic, in my mind’s eye, Vic being escorted, in deadly silence down a long dark passage. Her family and friends were escorting her on her final walk into the chamber of death. I clearly saw the fear in her eyes and I could feel her little body trembling with fear. I heard a voice saying “Dead woman walking…”
I saw her walk into an execution room, being strapped down and the needle being inserted into her little arm. I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??
It is so cruel. For all of us. Why do people linger? Why don’t we all just go to sleep and never wake up? Or die in a car accident? Why this suffering??? I want to go to sleep and never wake up. Life sucks!
Vic is on a mild sedation. She is more calm and peaceful than she has been for a couple of weeks. She woke up this evening and had dinner…half a hamburger!! My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food. She has passed no urine today.
She sobbed when I told her the boys had covered their school books…”I want to do it for them!” She wailed
“I have let down my boys. I always cover their books…”
“Oh Jared, look! Oupa Tienie is standing behind you…” It really spooked the boys. Tienie died on the 5th of November 1999…
I wish Vic was married. I wish her biological father was still alive! I wish the decision was not mine!!!
Tomorrow I will ask that the sedation be increased. I will silence my child’s sweet voice. I will also silence her tears and fears.
Vic is rapidly deteriorating. Last night the nausea was absolutely relentless. With no food in her stomach Vic vomited blood. Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night. I cried and slept in her bed with her.
Today Sr Siza tried to put up an IV drip. Vic has absolutely no veins left that are suitable for a drip. The sub-cutaneous driver is back up. At this stage of the game the risk of cellulitis is less than the need for pain and symptom control. We will reposition the subcutaneous driver as and when we need to.
Dr Sue has prescribed Cyklokapron. “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.” http://en.wikipedia.org/wiki/Tranexamic_acid
She suggested that Vic be admitted to hospital. Vic refused.
On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating. It is pretty ironic that Vic may well be our first death.
But then again, tomorrow may be better than yesterday….Today was better than last night.
Reposted from Dr Bill Wooten – http://drbillwooten.com/2012/12/31/at-the-end-of-the-year/
“The particular mind of the ocean Filling the coastline’s longing With such brief harvest Of elegant, vanishing waves Is like the mind of time Opening us shapes of days.
As this year draws to its end, We give thanks for the gifts it brought And how they became inlaid within Where neither time nor tide can touch them.
The days when the veil lifted And the soul could see delight; When a quiver caressed the heart In the sheer exuberance of being here.
Surprises that came awake In forgotten corners of old fields Where expectation seemed to have quenched.
The slow, brooding times When all was awkward And the wave in the mind Pierced every sore with salt.
The darkened days that stopped The confidence of the dawn.
Days when beloved faces shone brighter With light from beyond themselves; And from the granite of some secret sorrow A stream of buried tears loosened.
We bless this year for all we learned, For all we loved and lost And for the quiet way it brought us Nearer to our invisible destination.”
On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy. I cried with joy when I first saw him and that first “rush of love” hit me.
Baby Jared
Vic fell pregnant 6 weeks after she got married. When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies. They both said “We know…” I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.
I will never forget that dreadful Sunday night when they told us that Vic was pregnant. My heart stopped. I sobbed in the shower. For the first time in her life I feared for Vic’s life.
Vicky refused flat out to have an abortion. She said the baby a gift from God. And so he was….
Jared is an amazing young man. According to our government he is now old enough to vote, get his learners licence for a motor bike and work… I look at him and I see a little boy who was going to be a stuntman; a young child helping his Mommy cook; get out of bed; walk down stairs…
Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.
Jared is a “computer nerd” with a wonderful personality. He has a keen sense of humour and wise beyond his years. He is fiercely protective of his mother. A very dear Saudi friend of mine says Jared has a “white heart”. (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).
Vic, once again, managed to get out of bed. She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left. Laughter and joy reverberated through the house. Vic was the proud mother. It was a happy home for the day…
The boys have a hard time coming to terms with the stage that Vic’s illness is at. Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”. He researches every symptom and sends me links on liver and renal failure. He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school. The subject was “My Hero“. We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom. (His brother followed suit two years later)
He said that his mom is his hero because despite the fact that she is so ill she still looks after them…
Jared and his Mommy
Jared had a wonderful 16th birthday. He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.
She ain’t heavy – she is my mother
Yesterday was a milestone in Vic’s life. I fear it may be the last she will reach. It is clear that Italy will not be possible.
I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom! She feels it is “disrespectful”.
Mother and Son
As much as Vic resents the fact I may have to bring in a night nurse.
I remember Vic’s 16th as if it was yesterday. Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth
Many years ago we started a project, where on Christmas Day, we would feed the under privileged. The first year we fed approximately 300 people. The last year (2008) that we ran the project, we fed 1500 people on Christmas Day. We had three feeding points in different squatter camps and we also handed out little gifts of face cloths, soap, toothpaste and tooth brushes at a TB Clinic.
My late father, who suffered from Alzheimers, came to live with us in 2009, and since then I have not had the time, energy or finances to continue running the project. The community has however started running a similar project, and they now fundraise themselves. For many years I cooked up to 50 turkeys, made salad and cooked rice… (I cannot handle the smell of turkey and my husband becomes nauseous when he has to carve turkey…) I suppose we are all turkeyed out….
One of the feeding points. The children are so patient and well-behaved!There is no greater joy than givingVic and her friend Lee and a community member sharing a happy moment!
“You can give without loving, but you cannot love without giving.” ― Amy Wilson-Carmichael
We also visited the TB Clinic and gave the children in the Pediatric Section gifts. Young Elizabeth, an 11 year old girl, died two weeks later. She never let go of her Christmas Teddy Bear…
When my dad came to live with us I had to stop many of my community projects. It broke my heart but I knew that it was my “family’s time” In the words of Mother THeresa – “Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.”
2012 will be a Christmas of making time for my family.
A couple of days ago Vic wistfully said “This is my last Christmas Mommy” I hope she is well enough to have a Christmas that her boys will treasure and remember for the rest of their lives. This may well be our last Christmas.
Christmas Eve 2009 – (L to R) Lee, Vic, My Dad and I
“It’s not how much we give but how much love we put into giving.” ― Mother Teresa
This was so funny I just had to reblog this. I do plead guilty to sharing most of the behavioural traits listed below….. Thank-you Shirley for reblogging this.
As we progress into 2013, I want to thank you for your educational e-mails
over the past year. I am totally screwed up now and have little chance of recovery.
I can no longer open a bathroom door without using a paper towel,
nor let the waitress put lemon slices in my ice water without worrying
about the bacteria on the lemon peel.
I can’t sit down on a hotel bedspread because I can only imagine
what has happened on it since it was last washed.
I have trouble shaking hands with someone who has been driving
because the number one pastime while driving alone is picking one’s nose.
Eating a little snack sends me on a guilt trip because I can only
imagine how many gallons of trans fats I have consumed over the years.
I can’t touch any woman’s handbag for fear she has placed it on
the floor of a public toilet.
I must send my special thanks for the email about rat poo
in the glue on envelopes because I now have to use a wet sponge with
every envelope that needs sealing.
ALSO, now I have to scrub the top of every can I open for the same reason.
I can’t have a drink in a bar because I fear I’ll wake up in a bathtub
full of ice with my kidneys gone.
I can’t eat at KFC because their chickens are actually horrible mutant
freaks with no eyes, feet or feathers.
I can’t use cancer-causing deodorants even though I smell like a
water buffalo on a hot day.
Thanks to you I have learned that my prayers only get answered
if I forward an e-mail to seven of my friends and make a wish within five minutes.
Because of your concern , I no longer drink Coca Cola because
it can remove toilet stains.
I no longer buy fuel without taking someone along to watch the car,
so a serial killer doesn’t crawl in my back seat when I’m filling up.
I no longer use Cling Wrap in the microwave because it causes
seven different types of cancer.
And thanks for letting me know I can’t boil a cup of water
in the microwave anymore because it will blow up in my face, disfiguring
me for life.
I no longer go to the cinema because I could be pricked with a
needle infected with AIDS when I sit down.
I no longer go to shopping centers because someone will drug
me with a perfume sample and rob me..
And I no longer answer the phone because someone will ask
me to dial a number for which I will get a huge phone bill with calls to
Jamaica , Uganda , Singapore and Uzbekistan ..
Thanks to you I can’t use anyone’s toilet but mine because a
big black snake could be lurking under the seat and cause me instant
death when it bites my butt.
And thanks to your great advice I can’t ever pick up a
dime coin dropped in the car park because it was probably placed
there by a sex molester waiting to grab me as I bend over.
I can’t do any gardening because I’m afraid I’ll get bitten by the
Violin Spider and my hand will fall off.
If you don’t send this e-mail to at least 144,000 people in
the next 70 minutes, a large dove with diarrhea will land
on your head at 5:00 p.m. tomorrow afternoon, and the
fleas from 120 camels will infest your back, causing you
to grow a hairy hump. I know this will occur because it
actually happened to a friend of my next door neighbor’s
ex mother-in-law’s second husband’s cousin’s best friend’s
beautician!
Oh, and by the way…
A German scientist from Argentina , after a lengthy study,
has discovered that people with insufficient brain activity
read their e-mails with their hand on the mouse
Don’t bother taking it off now, it’s too late.
P. S. I now keep my toothbrush in the living room, because
I was told by e-mail that water splashes over 6 ft. out of the toilet..
NOW YOU HAVE YOURSELF A VERY GOOD DAY…
It has been a crazy week. Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles. I have not had time to blog or read all the blogs I am following.
Vic has had a reasonable week. I can see her getting weaker every day. At night I give Vic a Pethidine, Zantac and Buscopan injection. The Pethidine makes her sleepy. During the day she is able to tell me she needs an anti-nausea injection. At night the drug-induced sleep does not allow her the luxury of early warning. Vic projectile vomits every day of her life!
Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups. I fear she will fracture ribs and vertebrae if we are not able to control this quickly. I have started giving her antihistamine tablets. Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.
Her arm is still very inflamed and painful. We are now on the 3rd round of antibiotics. The tissue in her derriere is very poor. It is lumpy and bruised. It is becoming more and more difficult finding good tissue where I can inject her.
Emotionally it is really a difficult time. Vic is spending as much time with the boys as possible. She is doing a lot of what appears to be “lasts”….
It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family. Our gifts are not as extravagant as other years. Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.
Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”
“No problem angel. I’ll switch the kettle on.” I said
“I will be back in a minute” she said
I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….
I went through to her room and the poor baby had fallen asleep on her bed…
Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.
He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.
Just before 01:00 am Vic shuffled into my TV lounge.
“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”
We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)
The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.
It was a perfect day.
Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.
All the grandchildren wanted to stay.
Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.
Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)
Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.
Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.
“I miss you too Vic. How are you feeling?” Jnr asked
“I am battling Boetie (Little Brother) Vic said
“We are coming to visit in April then I will see you Vic”
“I don’t know if I am going to make it to April” Vic said
“Just hang in there Vic. It is not that long to April…” Jnr consoled her
“I know but I am tired. I am just missing you” Vic cried
“I will fly over for a weekend. I want to see you again” Danie promised
Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.
I know this will more than likely be another last for Vic.
My poor child had a horrible night. The pain was under control, but her arm still throbbed, and she was restless. I was busy with some Christmas gifts. I tried to go to sleep, but gave it up as a bad job. So I wrote a post. At 2am this morning I had just “published” when Vic rang the intercom.
The intercom is her 911
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Yesterday I spoke with a wonderful young man, Marchelle. I was privileged to have worked with Marchelle worked for a couple of years. Unfortunately we lost a large contract and had to go our separate ways.
Marchelle has a pure heart. He is selfless and one of the very few people I trust with every fibre of my being. Marchelle has never let me down.
Marchelle told me he is following my blog. He asked me whether I thought the situation is truly as bad as Hospice say it is. I said I did.
He asked “what is different this time? You have been told so many times that Vic was dying, and then she bounces back…”
I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back. Organ failure is organ failure…. Talking to him I thought “Marchelle is right! Why am I giving up this time? I have NEVER given up on my child, and I will not give up now.”
I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping. I am so tired that I am allowing the negativity of the situation to get to me. It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.
Marchelle said he prays for us every day, and I believe him.
This morning Vic took her precious boys to pick up their report cards. Both Danie and I said we would take them. Vic very politely refused. She wanted to take her boys. She wanted to be first to see their marks. Maybe for the last time…
She was absolutely delighted with their marks. The boys had worked hard and deserve every mark they received. I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.
We are so proud of them. They are brave kids.
On Sunday we will celebrate my birthday. On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids. Simone still believes in Santa! On the 25th we will go to Church. On the 26th we will celebrate Jared’s birthday. On the 27th we will start planning our New Year celebrations.
Forward planning is “The power of positive thinking”…
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
Tonight Vic had one of her worst vomiting spells yet. It happened after 02:00am and her dinner of 7.30pm had not digested yet. It is obvious that the oral antibiotics are not being absorbed.
Vic was very tired today, but insisted on going with Jon-Daniel to the orthodontist. In years to come will he remember that his mommy was with him when he heard his orthodontic treatment ends on the 1st of February at 09:15am?
My sister phoned tonight. She categorically told me that I have no business injecting Vic. Nurses go to College for 4 or 5 years so they know what they are doing…. I did not even bother to explain that it is the Hospice site that is bad… My two sites are only in the beginning stages of going septic… I wonder whether she remembered that Vic has sepsis in her spine and abdomen…
The pethidine has kicked in. My child is in a pain-free sleep. I will now try to sleep. Tomorrow may be a rough day.
Vic's Final Journey 