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.
Thirteen years ago Vic’s dad was involved in a bad car accident. He was airlifted to a hospital with an excellent trauma unit.
When Vic and I arrived at the hospital we were greeted by a trauma councillor. He explained that Tienie was being stabilized but that the situation was grave…. It was terrible seeing Tienie lie in the ICU ventilated, swollen, battered and bruised.
The news was not good. Tienie would be a quadriplegic if he survived….
Tienie was one of the most vibrant, energetic party animals I ever knew. We were childhood sweethearts. We started dating when I was 13.5 years old. I have photos of us dancing at his 16th birthday party. We got married very young. We got divorced very young. We remained friends and business partners until his death. Tienie was an accountant by profession and hated every second of it. He turned to property development and went from one cash flow crisis to the next. He was one of the most intelligent people I ever met but also one of the stupidest!
Tienie was a giver… He would give away the clothes off his back. He hated sleeping. He said it was a waste of time. Tienie never cried… he mourned Vic OI diagnosis in a different way. Some men love cars…Tienie loved women. He was a loyal friend. He was the world’s friend. Everybody loved Tienie.
The day after the accident I had some time alone with him. I spoke to him and told him that I had forgiven him for cheating on me and finally leaving me. Standing next to his bed I realized for the first time that I had also caused him a lot of pain!! I asked him to forgive me.
I also told him that I knew he was worried about his situation at that moment in time. All he had to do was pray to God and ask him for forgiveness. I held his hand and prayed for him.
A single bloody tear ran down his cheek. I knew he had heard me and that all was okay….
The machines went crazy and I was asked to leave. I knew Tienie was gone as I walked out of the ICU….
Six days later Vic signed the consent forms for the machines to be switched off. She also signed the consent for Tienie’s organs to be donated. That is what he would have wanted.
Tienie was buried on his birthday, the 10th of November 1999
Thirteen years later my child still mourns her father.
I know that when the time comes Tienie will be there to take Vic’s hand to lead her towards the light….
Aarthi Raghavan, http://sickocean.wordpress.com, http://mysticparables.wordpress.com, a very talented poet, whose work I enjoy immensely, has written a beautiful poem and dedicated it to Vic and I. We are so honored and blessed with the gift of your words and your heart! Thank you so much Aarthi!
the love you share the words that say you care those moments between you and your daughter those drops of peace and happiness and joy save them like drops of pearls save them like diamonds rare that is a form of unending love that gives and gives and never expects be there like a rock for your child and i am sure she would win and survive our world is one of miracles too our world is an oasis rarities and your child too shall her courage prove just be there with a smile always give her the courage to stand taller than before she shall overcome her struggles soon prove all wrong and herself right she must win and win this time make sure you are there to know witness her strength, her wars, her fight love can kill the worst of fears and happiness shall soon return changing the way she views her life…
South Africa is advertised as “Sunny South Africa” with beautiful white shores and blue skies. Barbeque is our national pastime. Today is an overcast day. It is as if Mother Nature is preparing me for England’s grey skies, drizzling cold and wet weather.
By now I assume everyone has concluded that I got the go-ahead from Hospice to travel!
I am hopping, skipping and jumping with excitement. I cannot wait to see my UK babies. Not only see them but hug, kiss and hold them.
Vic is insisting that I go. We are both fearful but I also realise that I desperately need a break. There is never a perfect time. Vic is very swollen and not well at the moment. She is partially obstructed but we will clear it by Thursday. The Hospice Sister will pop in every day to evaluate and monitor her and report back to me.
In the words of the Hospice Sister Ceza: “Things are slowly going downhill. Go now. You need your strength for what lies ahead”.
Timing, as always, is an issue. Vic is well enough for me to travel but on Monday it is little Yuri (youngest grandson’s) school concert, Simone (2nd eldest granddaughter) birthday and Lani’s (2nd eldest stepdaughter) 40th birthday in the week that I will be away. I have still not seen Liza and Adrian…. On the other hand I will get to see the girls “trick or treat”, Chloe is on a week’s school holidays and I will watch the extravagant Guy Fawkes fireworks displays and bonfires being lit… I feel so selfish and caught between two fires.
I am scared for Vic, worried about the boys, guilty for Yuri, Simone and Lani and excited as can be about seeing Danie, Michaela and the girls. On the one hand I feel so selfish. On the other hand I realise that I need a break. It has been a year out of hell! On a daily basis the demands on me are increasing. It sounds as if I am having a pity party and/or trying to justify my decision to go to the UK….Yes I am!
The Hospice Nurse will start on Wednesday evening. I must shop for groceries and ensure all meds are in stock. I must write up a medication schedule for the nurse….
Got to run! Lots to do! I will make it up to everyone….I hope!
The VoyageLocated at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters
The life of someone who is chronically ill can be equated to being on a roller coaster ride. Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation. Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.
Every chemical that enters your body has a side effect. Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life. Living with illness affects every part of your life and every significant relationship you have.
There have been times in the past couple of months that all Vic can do is lie in bed and breathe. Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement. There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milkshake. She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!
Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused. She is on the down ride hurdling to who knows what stage of her journey.
Vic is so sad that she is unable to actively participate in her children’s lives. Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.
Danie and I planned to go to dinner on Friday night. Vic was not well so we decided we would go on Saturday. On Saturday Vic had another lousy day. She fluctuated between being confused and weepy. She was up and down like a little jack in the box. By Saturday night she was asleep on her feet. The intestinal cramping kept her awake. She was weeping from pain and frustration.
Last night Vic cried “Mommy, I am such a burden. You don’t have a life because of me.”
“Sweetie you are not a burden.”
“I am” Vic sobbed. ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”
“Sweetie, it was our choice to stay home” I said
“But I have ruined your life” Vic cried….
Jared spent the weekend with a friend. The child never goes out. The two of us are too scared to leave. I suppose we have become overprotective control freaks.
I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too. My protective behavior is a bad example to Jared and is causing Vic distress. My entire family is concerned that I will “crack” under the pressure.
I hope to fly to England for just over a week to spend some time with my UK children. I have so much to arrange. I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..
Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..
when a mother cries
her tears stab at her daughter’s heart
as they plummet to the floor
when a mother cries
he daughter cries too
because her heroine is wounded and she doesn’t know how or why
she cries because she cannot rid her mother of the pain
she cries most of all because she loves her mother
when a daughter cries because her mother cries,
her mother cries more
because her weakness has hurt her child
she cries because it hurts to know she’s the cause of her daughter’s tears.
she cries most of all because she loves her daughter
once the tears have ceased however
love remains
the love forever shared between a mother and her daughter
The albatross is a large seabird with a wingspan of up to eleven feet. The albatross are regarded as the planet’s ultimate frequent flyers. The albatross don’t flap their wings, they use wind energy. An average black-browed albatross may cover 100 miles a day during its lifespan of more than 40 years. Over a lifetime, an albatross may cover 1.5 million miles.
A master at gliding, the albatross can stay aloft on virtually motionless wings for many hours at a time. For that reason, seamen used to believe that the albatross had magical powers. There was also a belief that albatrosses, hovering endlessly above the ships at sea, contained the souls of lost sailors, former comrades of the sailors below. Many sailors believed that disaster or death would haunt anyone who harmed or killed the bird.
In 1798 the great English poetSamuel Taylor Coleridge made albatross mythology the basis for his famous poem The Rime of the Ancient Mariner. The Ancient Mariner (that is, the “old seaman”) tells the story of how he, while on a ship at sea, killed an albatross for no apparent reason. Later the wind stopped blowing, and the ship could not reach port to get fresh water.
The crew assumed that the disastrous turn of events occurred because of the death of the albatross. Angry at the Ancient Mariner, the crew picked up the dead bird and hung it around the man’s neck as a symbol of guilt and punishment. The profound intent of the symbolism was reflected in the Ancient Mariner’s own words:
“Instead of the cross, the albatross
About my neck was hung.”
Today that imagery has generalized, so that anything that causes deep, persistent anxiety can be called an albatross. And an encumbrance that hinders accomplishment is an albatross around one’s neck.
(Principal sources: Oxford English Dictionary; Darryl Lyman, Dictionary of Animal Words and Phrases, Jonathan David Publishers, http://www.jdbooks.com)
Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease. In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).
As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily. Collagen in the body is what cement is in a building. It keeps the tissue/bricks together! Vicky has poor quality collagen.
Vic has a very bad spine. Her neurosurgeon decided to do experimental surgery in 2002. The Prodisc Total Disc Replacement is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery. http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;
Vic had the Prodisc procedure on Wednesday morning, the 13th of February 2002. The operation was scheduled to last “two hours and thirty-seven minutes”. Six hours after Vic was pushed into theater we were told that she is in recovery. Vic would go to ICU for “pain control”.
She was pretty out of it the entire Wednesday and Thursday. Friday Vic was conscious and in dreadful pain. No amount of morphine brought her pain relief. Her face and nose itched in a reaction to the morphine. Vic was losing her mind with pain.
Early Friday morning I cornered the surgeon. He said she is fine. I kept badgering the ICU staff to increase her pain medication. I pointed out that her heart rate was elevated and she was running a temperature. Her breathing was shallow and fast. If it was today I would have recognized the danger signs.
That evening I was too scared to leave. My child was in trouble. Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated. The X-rays did not show up anything but my concern had “alarmed” him.
“Mommy, you must decide. We can take her back into theater and check her out. The chances are that we are going to subject her to unnecessary anesthetic and surgery. The decision is yours…”
“Take her back to theater tonight” I said
“I will get a specialist surgeon to do the surgery” he said.
At 9.30 pm Vic was pushed into theater again. Eleven hours later she was rushed back to ICU. Sunday the 17th of February Vic went back t theater for a further 9 hour surgery. She came out ventilated.
She spent 22 days on the ventilator hovering between life and death.
Doctor arrogance and negligence has led to almost 11 years of sheer undiluted hell and misery. I wish there was a way I could make the arrogant fool pay for Vicky’s lost life. I wish I could put him in Vic’s shoes for one day. I wish with every fiber in my body that I could make him give the boys back their mother. I wish my child could be pain-free.
The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. Thank God for adhesions.
I digress. The specialist surgeon, Brendan Bebington, which Dr Frank S tried to get to do the surgery that Friday night, wife was in labor His locum was called in. Years later (after surgery maybe 30) we ended up back with Dr Bebington again. He has managed to keep Vic alive for many years.
Brendan calls Vic his “albatross”. He is still consumed by guilt that he wasn’t available to do her emergency surgery… I wonder whether the neurosurgeon ever thinks of her?
I want to reiterate at this point that the Prodisc is an excellent alternative to spinal fusions. Surgeon arrogance is the cause of this disaster! Giving the choice again, we would more than likely opt for the same procedure again. Different surgeon.
When the albatross glides across the skies it is stunningly graceful and beautiful. But when the albatrosses webbed feet touch down on earth it walks clumsily, like a staggering drunk, and becomes the object of ridicule and pity.
One day Vic will soar through the sky, graceful and beautiful. Free from pain and suffering!
WebMD Pain Coach™ offers a holistic approach to balancing lifestyle with chronic pain conditions to help inspire a better day. WebMD’s new app is a mobile companion to help you through daily health and wellness choices so you can better manage your chronic pain. Enjoy a personalized experience as physician-reviewed tips related to your specific condition are delivered daily to you. WebMD Pain Coach™ puts you in control of your lifestyle choices so you can review personal patterns to understand triggers, set goals, and easily share progress with your physician.
WebMD Pain Coach™ is specially designed and customized for people with the following chronic pain conditions:
✓ Back pain
✓ Neck pain
✓ Nerve pain
✓ Fibromyalgia
✓ Migraine
✓ Osteoarthritis
✓ Rheumatoid arthritis
If your chronic pain condition is not listed above, you can still use the app to track pain, set goals, and get pain management tips, articles, slideshows and videos.
When you first download and use WebMD Pain Coach™, you are asked to select your chronic pain condition(s), as well as symptoms, triggers and treatments that apply to your condition(s). If privacy is important, the option to set a four digit PIN will keep your information secure. WebMD’s drug look-up allows you to search and select over-the-counter and prescribed medications, and record the dosage of each drug selected.
WebMD Pain Coach™ is organized into four easy-to-use sections:
✓ JOURNAL
The Journal section allows you to quickly and easily record your day. A separate Journal screen exists for each day. Once entries are created for multiple days, flip back to see your pain history. Turn your phone sideways to generate your Pain Coach™ Report: a historical chart that plots your general well-being against your pain levels while listing your most common symptoms, triggers and treatments. Tap on a day to view a snapshot of your pain history and export your Pain Coach™ Report to PDF and email it to yourself or your physician.
♦ Record how you generally feel each day by sliding the Pain Coach™ ‘Well Being Belt.’
♦ Log a pain entry to track details surrounding pain: pain level from 1-10, symptoms, triggers, treatments and notes.
♦ Reminder to log a pain entry by receiving a Pain Coach™ notification once a day.
♦ View a new Daily Tip that is personalized to your condition(s), triggers and treatments.
♦ If you set goals to better manage pain, tap ‘Today’s Goals’ to check off achieved goals.
✓ Goals
The Goals section allows you to browse and select physician-approved goals from five lifestyle categories related to your pain condition(s): Food, Rest, Exercise, Mood, and Treatments. You can also create your own goals. Each related tip can be viewed before selecting a goal. The goal duration can be set from one day to one year.
♦ The green ribbon at the top of the Goals screen indicates the percent completion rate for active goals.
♦ Once a goal is selected, tap ‘My Goals’ to view Goal Activity for active and completed goals.
♦ If you have more than one chronic pain condition, the goal that is suggested for a specific condition is indicated.
✓ Library
The Library section contains all of the critical, physician-approved content relevant to your condition(s) and pain management. The Library contains hundreds of articles, videos, slideshows and quizzes. All articles are available for offline reading.
♦ Library content contains links to WebMD’s mobile website.
♦ The Library is searchable.
♦ Share all Library content via email, Facebook or Twitter.
✓ Tips
The Tips section features hundreds of ‘bite-sized’ tips that are matched with goals and organized into the same five lifestyle categories: Food, Rest, Exercise, Mood and Treatments. Each goal has between 3-10 supporting tips.
♦ Search for a specific tip.
♦ After reading a tip, view the goal related to the tip, or view related Library articles.
What a game changer. I can finally define my pain in my terms.
brilliant app!
by pyroclasticlux
excellent for tracking my migraines & other chronic pain. it’s a well thought-out app & is very user-friendly! i definitely recommend this programme; it is both easy to use and comprehensive.
Great little app for my neck pain
by Grimlock2011
On a recent ride to Cheyenne i bit it and was in the hospital for 2 days. Some disks popped in my neck, and let me tell you, goody’s powder wasn’t cutting it. i like this app because it helps me think about ways to feel better and i can also show my doctor my pain charts. looking foward to rejoining the boys and riding again soon! Get this app you won’t be sorry.
Vic could live like this. We could live like this. Please let this continue! Today I pray that this is the case. I pray for a miracle. I pray that Vic is in remission.
On the 17th of September Vicky was accepted onto the Hospice program. Dr Sue Walters, the Hospice doctor and Sr Ceza, Hospice Nursing Sister, thought she would die within days. Vic was barely conscious and too weak to walk. Vic was breathing but had already ceased to live!
In two days’ time we celebrate Vic’s “One Month with Hospice” and I think she is getting stronger every day. We still have bad days but her pain control is great! Vic is reasonably mobile; she laughs and spends constructive time with the boys and the family! She is sorting out photos and all sorts of things that she has neglected for months. She is spending less time in bed. She is sleeping less and eating more.
It is as if she has a new lease on life!
Could it be possible that the pain was killing her? Is it possible that the adhesions have stopped their devastating path of destruction? That just maybe the sepsis has cleared?
Vic still needs assistance with basics. Vic could live like this. We could live like this. Please let this continue! Today I pray that this is the case. I pray for a miracle. I pray that Vic is in remission.
Vicky constantly says “sorry Mommy.” She says “sorry Mommy” when she vomits, when she is in pain, when she is ill…
Then there is a flood of “thank you’s”….. Vic says “thank you” all the time! It drives me mad! I don’t want her to apologize for being ill and I don’t want her to continuously thank me.
Vic’s situation, our situation as a family, is unfair, arbitrary, frustrating and so sad. Vic is blameless, helpless, a victim of poor sick genes and doctor error.
I know that Vic is sad about her situation. I know that Vic is sad for what the family is going through. She is sad because she cannot be the mother she wants to be. She is sad that she has a lonely, sad life devoid of partner love, physical love and friendships not based on pity. She sad because she does not have a social life and neither do we as a family. Vic is sad that she is dying in the prime of her life. Vic is sad that she has achieved so little in her life (by her standards only).
We no longer have lunches with friends, outings or holidays. Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next. When she has a good and busy day, like yesterday, she pays the price for weeks. Vic has not been out of bed today. She is deadly pale and drawn.
It is hard for her not having privacy. Vic is embarrassed that I hold her hair or wipe her face when she is vomiting. Yet she needs me with her….
We are however in this together as a family. It is a rough journey for everyone.
“I am so sorry Mommy…” …it echoes through my heart.
Today was another milestone for Vic and the family. Jon-Daniel turned 14 and he woke up to his loving mother’s birthday wishes and kisses.
I could not help but think back to the day he started “big” school. Vic was violently ill but refused to be admitted to hospital before Jon-Daniel was taken to “big” school and settled into his new class… Seven years ago she placed her own life at risk to take her son’s hand in hers and lead him into a scary new phase of his little life.
Vic kneeled next to his little chair and told him school was going to be one of the greatest adventures in his life. She told him she loved him and he was in good hands. His brother would look out for him at break. He had to concentrate and listen to his teacher. “Mommy will see you after school” she promised.
When we left the classroom Vic collapsed. Colin took her straight to hospital. Silent tears ran down her cheeks.
“Mommy, please bring the boys to hospital this afternoon. I promised Jon-Daniel I will see him after school.”
I do not remember the exact details of that particular hospitalization episode but I do remember what a milestone Vic reached that day…
Yesterday my little girl dragged her body out of bed. When Vic and the boys moved home a year ago I bought her a doughnut-making machine. She had not used it. Jon-Daniel loves baby doughnuts and keeps asking her when they are going to make doughnuts. So, Vic made baby doughnuts with Jon-Daniel yesterday afternoon. It wasn’t a big batch but she was absolutely exhausted and in terrible pain after she finished his “birthday doughnuts”.
I wonder if he will ever realise what a superhuman effort it took for his mother to make him birthday doughnuts….
Vic bought Jon-Daniel a sound system for his 14th birthday some time ago. It has been wrapped and ribboned for a while. I am so grateful Vic was able to give it to him, in person, this morning…. He was absolutely delighted! The boys had to go to their Dad this evening so Vic made the decision to take Jon-Daniel out of school early today. We did not have the normal “tea and cake” thing at home as we simply did not have enough time. We went to lunch and had a wonderful time! We screeched with laughter. The boys joked with Vic because she is so short…. (She loves being ragged about her (lack of) height) and the boys love humouring her!
“Mom can’t do a ‘high five’ Oumie – she is too short…” They just carried on and on joking with their mom.
Late afternoon, after the boys left, Vic and I quietly sat basking in the milestone day….
“It is so sad Mommy. I wish I could write to her and tell her what an inspiration she is to me…” Vic said. “I am so scared…. I have a hollow feeling on my tummy.”
We just sat in silence. I held her little hand knowing what she was saying. I did not have words for my little girl.
“I have such a good idea for your Christmas gift but I need the boys to help me.” she said
“Well, in 6 weeks’ time the boys will have finished their exams and they will have lots of time to help you.” I said
“I can’t wait that long Mommy. My health is too precarious. I must do it now…..”
With a hollow feeling on my tummy I wonder whether we will reach our next milestone….
I am reblogging this amazing post. It is the sad and poignant blog of a young woman who is terminally ill. This is her story.
Lots of Tears With Less Than a Few Months to Live
Posted: 10/09/2012 3:40 pm
The day after her 36th birthday, Meredith Israel Thomas was diagnosed with stage IV breast cancer that had spread to her liver, lymph nodes, spine, ribs and other bones. Doctors didn’t think remission was possible, so opted against a mastectomy, but she has undergone a number of other treatments since then.
An advocate for early detection, she pledged to make the most of what was to be limited time with her family — including her young daughter Niomi, a“miracle baby,” she wrote in a blog post for HuffPost — and closest friends.
After receiving some troubling test results, Meredith met with her doctor, who broke the news that “the cancer has won,” she wrote on her CaringBridge page. “I will die from liver failure. Not in three to six months, but from weeks till around three months. The liver won, and I will die.”
I will never get over my fears of not being there for Niomi as that is what truly scares me to death, but until the day comes, I will live each day to the fullest. I will instill in her the most valuable lessons I can. I will teach her to be strong, to give her advice through letters, through videos and even through our little talks while she’s falling asleep at night. But for now, we live day by day and that takes my fears away.
She took to the blog platform to explain the doctor’s opinions and to share her plans for the precious next few weeks.
I want to let everyone know that I tried my heart out in the fight, I won’t quit until the last drop and I’ve done the best I can. This blog is the real story for Niomi. I can’t remember everything, but with this, she will know everything.
I can’t wait for her to read all the journal entries from people on the blog. People will tell her the stories about how much her mommy loves her. I must admit I am scared to walk into that playground tomorrow, but for Niomi, I will do whatever it takes.
I will cherish the dinner between my parents and Gary tonight. It was pouring rain as we left Sloan tonight and I said to my dad, doesn’t this seem like deja vu? I didn’t believe in the one-year diagnosis, but this time the results were right and realistic. My dad keeps hoping that on April Fool’s Day, we say April Fool’s, gotcha! Maybe that’s the miracle. Who knows?
To warn you — I threw out two cancer jokes today. Couldn’t help it, but that’s me. I guess that is how I live life. Example: I told my friend about this project and said it has to get done and I asked when. She said, “I promise to take care of it.” I then texted her back: “I’m on a timeline here, a real timeline, so they really need to move.” She started laughing and said, “Only you would still make jokes on a day like this.”
Everyone, thank you so much for sharing my story with people and spreading the word about early detection. Thank you for being there for me and supporting me. I read every email, text, Facebook post and guestbook entry. They all bring my family and me strength. Thank you!!!!
Can you believe I won’t know the season finale of Grey’s Anatomy, Private Practice andParenthood? UGH. Now, that sucks. Hopefully they know these things in Heaven.
Before I leave though, I want to try to get Niomi on skis, I want to be running down the beach with her as much as possible, apple picking and taking in as much healthy air as possible while she smiles.
I have lots to write and to get to on my list. I may not like that I may die bald, that I never really recovered from Bells palsy and lost the pigmentation in my face, but at the end of the day, I am beautiful no matter what. I have a husband who loves me more than anything in this world, and Niomi. I think Los Angeles would have been great and would have been great for my health, but the cards didn’t align this time and maybe it was all meant to be. Three weeks ago I was walking in Cape Town, South Africa and three weeks later I was told I will be dead within weeks to a month or so. Life leaves us all with a lot of questions, but I know I don’t blame anyone and they just better find a fucking cure for this disease before Niomi and the kids of all my friends who have been diagnosed have to fear this horrible disease.
My head is soaked and itchy. Maybe when we get her to a ski mountain, which isn’t really possible, I will walk out into the snow naked to cool off. Just kidding.
Must work on a better list that doesn’t have me flying all over the world. He won’t approve of that. But I dream of Hilton Head. My happy place. I must get back to Hilton Head to see Niomi back there on the beach or bay. I need to find all my happy places on the east coast.
Jared and Vic lighting Jon-Daniel’s 13 Candles 12.10.2011
People have said “I am taking a break from your blog. It is too difficult for me to read” or “Some days I just cannot read your blog”….. Listen up people on the 20th of July 2012 I blogged “When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless. “https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/
My best friend says my blog is sad and I suppose it is. The blog however mirrors my deepest feelings. It is our journey and you (the royal you) don’t have to feel you are under an obligation to read my “sad” blog.
Well today I will however try and blog some happy moments. Jon-Daniel, Vic’s youngest son, turns 14 on Friday the 12 th of October. We are busy arranging his birthday party. He wants a pool party but I don’t think the weather will co-operate! Weather predictions are 80% chance of rain on Saturday!
Vic was born on one of the coldest days of the year. I remember sitting hunched up in front of the fireplace saying “if ever I am going to have this baby it is going to be tonight!” I finished work that day and was looking forward to my maternity leave. I had weird little contractions at work but paid no attention to it. My back was killing me! But I had work to finish and the staff held a little “stork party” for me. I lost my temper with someone at work and yelled at him! I ate ice-cream in front of a heater and craved a milkshake! It was such a busy day.
My case had not been packed as Vic was only due a month later….In true Vicky form she decided “enough is enough” and I went into labor that evening! Vic is a “lingerer” and was born 27.5 hours after I went into labor.
When I was admitted my mother-in-law accompanied me. She was plumpish with a youthful face. The maternity staff thought she was being admitted…. I only gained 8 pounds (3.64 kilograms) and barely looked pregnant. I still wore all my normal clothes.
When Vic was born she was so perfect! Her father said “Oh, look she has my toes!” She was heartbreakingly beautiful with a mop of black hair!
Some facts – Vic weighed in at 2.2 kilograms. She was a mere 48 cm tall. She was tiny but so strong and perfect! She was the best “pooper” in the maternity ward. Vic was a bottle baby and her preemies clothes were too big for her.
For the first two months of her life I was too scared to bath her. My mom did. Vic walked at 17 months but had her first tooth at 3 months. She had her first fracture at 3 weeks – sucking her thumb!
Vic was diagnosed at 18 months with Osteogenesis Imperfecta. By her 4th birthday she had fractured 40 bones. Vic spoke her first words before she could sit and built basic wooden puzzles before her 1st birthday. Vic spoke Afrikaans and English fluently by the time she was 3.
At the time of diagnoses the doctors said she would not live to the age of 12. Well she certainly showed them!
Every single birthday of Vic’s we have had lousy weather! It was always the last cold before spring sets in on the 1st of September.
Vic does not have a good sense of humour. Wait, let me rephrase that – Vic cannot tell a joke! She loves a good laugh. She has a beautiful smile that reaches her eyes. Her dark brown eyes are truly the mirror to her soul. Her eyes are now either clouded from morphine or pain. Her eyes now “tear up” even when she is not crying.
Vicky is a people pleaser. She will do everything in her power to make people happy. She is also the most stubborn person the good Lord put on this earth.
Vic is a wonderful mother. She loves her sons unconditionally. Jared is her gentle giant. He helps her mobilize and makes her coffee. He will make her breakfast and lunch. He is gentle and tender with his Mom. He will carry her when she cannot walk. He protects her…. He has a brilliant analytical mind. He hates homework and studying. He under achieves at school. His room is not the tidiest in the world. He is an accomplished guitarist. Jared is generous and has an easy smile. Jared is her eldest.
Jon-Daniel is the genius (he has my brain – hahaha). He is a perfectionist and when he leaves for school his room is perfectly tidy. He immediately starts homework when he gets home. His lowest mark is for art – 78%. He is an accomplished sportsman. He only watches sport on TV and knows all the international soccer greats, tennis and cricket players. He makes Vic laugh. He fools around until she screeches with laughter. He is angry because she is ill. Even as a little boy he would cry to see Vic when she was in hospital. Once he saw her he would start acting up – insisting that we leave! He even saves airtime…. Jon-Daniel is her baby.
Vic loves her boys and her boys adore her. I wish their lives were easier. I wish I could save them the pain they live on a daily basis.
Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….
Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”
“You read my blog?” I asked.
“Yes” Vic replied.
“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”
“I know that Mommy but what if I am still in pain… What if the pain does not stop?”
“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”
Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”
Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”
sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”
“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/
I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind.http://thedrsays.org/2011/03/25/the-one/
Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.
My Mom died a bad death! Two weeks after major surgery she died an agonizing death from septicemia We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you but we will also be at peace… We will think of you and smile…
He eased his body onto the mattress while pulling up the covers and rested his head on the pillow. There are far too many memories of his selfishness, but he will not deny them; he will learn from them. That is both his prayer and his hope. Mercifully, the memories were not all bad. He smiled as another one surfaced.http://thresholdofheaven.com/2012/09/27/now-i-lay-me-down-to-sleep/
This is an extract from a blog of a father’s journey after the death of his young son. Like all parents he is wracked by feelings of guilt and inadequacy.
Shortly after her third birthday Vic developed a bad cold. Her nose was running and I asked her to go wipe her it. She looked at me and in her most defiant tone of voice said “No! I won’t”. I gave her a light smack on her bum. She moved her little arm in front of her bum in an attempt to stop me … three of my fingers struck her arm. She screamed! I immediately knew I had broken her arm…
The x-rays showed that the ulna was broken in three places…. Imagine my horror, guilt, feelings of inadequacy and self-doubt!
I worked hard as a young mother. I was young, divorced, a single parent climbing the corporate ladder. My child had been diagnosed with Osteogenesis Imperfecta (brittle bone disease) and I needed a lot of money to keep Vicky alive and living a fair life. She attended a private school. Did I neglect her at times as a child? Yes, I am sure I did. Not because I wanted too but because I had to work extra hard for that bonus or the next promotion!
Did I abuse her as a child? Absolutely not! My neighbors and some emergency rooms did however think I did… By her 3rd birthday she had had 40 fractures…
When Vic was a little girl there was no internet and Osteogenesis Imperfecta was a “new and extremely rare” disease. I spend many hours, days, weeks even months researching OI in libraries. I went from doctor to doctor. I tried alternative medicine, physiotherapy and hormone treatment! I have spent thousands of hours on the internet researching every single medical report, diagnoses, blood test result that Vic has ever received. I have bullied doctors, nurses and anyone who ever dared cross our path. An ICU sister once told me I am a control freak and that I feed off Vic’s illness!
I can however honestly say that I did my best. I cannot apologize for the mistakes I made as a mother as, at the time, whatever decision I made, I thought it was in Vic’s best interest.
Am I special? Absolutely not! I only do what any other mother would do under the same circumstances. I cringe when people say “oh you are so brave” or “Oh you are so special” or “What an exceptional mother you are. Vicky is lucky to have you as a mother”. Nothing could be further removed from the truth… I am the one blessed with an incredibly brave, compassionate, brilliant child! Vic has enriched my life so much! If I could choose a life with a healthy (different) child where I could have a life of my own, I would not. Vic is part of my journey.
I come from a long line of very good mothers…My Mom taught us the values of being a “family”, honesty, unconditional love, caring and nurturing… I am surrounded by good mothers. Vic is a good mother to her sons. Esther, Lelani and Michaela are good mothers to their children! All my grandchildren have good mothers.
Mothers love the way love is needed. If the child needs caring they get caring, if they need nursing they are nursed. A mother’s love is love in its purest form.
When Vic was 10 years old she lied to me about a school test. It was not the first time she had fibbed and I knew I had to punish her. Lying is an unforgivable transgression! I always told Vicky that it is better to face my wrath for 5 minutes than to lie to me and destroy the trust that we had forever. If she lied I would ALWAYS doubt her…Remembering the broken arm episode and knowing that she knew that I was a pacifist at heart, I decided the worst punishment I could give her would be a smack on her bottom. I made her lie on her bed, on top of her arms, and gave her three smacks with my slipper. (It sounds so barbaric!)
She smirked “It did not hurt at all” and I sobbed….
I phoned my Mom and sobbed “I am such a failure. I am such a lousy Mother! My child is lying to me. I failed as a mother AND I GAVE HER A HIDING!”
Mom quietly asked me “What can you do to be a better Mom?”
I replied “Nothing! I don’t know what else to do! That is why I am phoning you! I need guidance and advice! Please tell me what to do!”
My Mom gently replied “You can never do better than your best!”
These wise words have remained with me all my life.
Vic's Final Journey 