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 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.
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.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.” –Dame Cicely Saunders
The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman. She has a gentle voice and long fingers with short nails. She drives a Jeep and keeps large dogs. She looks like a naturalist.
“I am Dr Sue Walters from Hospice. The Pain Clinic asked us to see you. Is it okay for me to examine you?” she asked Vic in her gentle voice.
Vic’s abdomen was severely distended and very tender. She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication. Vicky’s vitals were poor.
Sue administered a strong morphine injection.
“Vicky, you appear to have an abscess on the right-hand side of your abdomen. The skin is hot to the touch and distended. I think you have a partial obstruction.” Dr Sue said to Vic.
“I am here to see if Hospice can help you. Do you realize that you are very ill my love?” Dr Sue asked Vic.
“Hospice will not hasten your death my love. It would be our aim and purpose to provide you with pain relief and quality of life. We will treat you and not the disease. It is exclusively your decision whether you want us to help you and how you want us to help you.” She explained to Vic
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care
Vic was in so much pain that she was barely able to speak. Tears welled up in her eyes and she softly said “Please doctor”.
“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked
“I want no life extending treatment. I am so tired doctor” Vic whispered. “I can’t do this anymore…..”
“That’s fine my love. We will try and relieve your pain and give you some quality of life.”
“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.
Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a subcutaneous morphine syringe system by that afternoon. Hospice would arrange for counseling for the boys.
She hugged me and left. All of a sudden I felt so alone again!
Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.
The first couple of days Vic slept a lot. She was tired but there was immediate pain relief.
The nausea subsided and the partial obstruction cleared two days later!
The first infusion site was in her leg. Within a day and a half the area “tissued”. A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain. We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm. Within two hours the needle came out again and the morphine was running onto the skin. It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.
Last night the tissue in the abdominal area had tissued again. It was also bloody and the morphine was running onto the skin and not into the tissue. Vic was nauseous with pain. I had no option but to remove the needle and re-inserting it into a different site.
“I think we should put it into the other side of your tummy” I said
“Mommy, I will insert the needle if you help me…” Vic replied
“No sweetie” I said. “I will do it”
My heart was in my throat. I removed the needle and cleaned the injection site. I disinfected the new site that I had identified. I took the needle in my hand and lifted the skin. I pushed the needle against the skin. I assumed that the needle would just slide in… It did not just slide in! There was resistance!! I let go of the skin and changed my position. I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.
“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.
I exerted pressure on the needle and it slid in… Sweet success!!!!
“Oh Mommy you are such a star! Thank you. That did not hurt at all!” Vic gushed.
I do not believe her. I had felt her little body tense up as the needle went in. It hurt!
My entire body shook. The bile rose in my throat and I slowly let out my breath.
We have all come such a far way. Until last night I could not watch anyone stick a needle into my child. Now I have stuck a needle into my child’s flesh. I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.
The good news is that I was actually able to work the whole week. It was the annual African Air and Defense Show and we exhibited. Normally I would be absolutely frantic about Vic. But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.
Vic is far more active. She is truly so much better. The partial obstruction appears to have cleared! She spends time chatting to the boys. On Saturday she took Jared shopping for a new shirt and shoes!
On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡” Vic handed him his baptism candle that she received 15.5 years ago at his christening. He lit his candle as he took responsibility for his own walk with God. Vic and I laid hands on him and prayed for him. It was so touching.
Joyous day!
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively. I have argued with physicians and meet with pain specialists at the pain clinic every month. I have bullied hospital nursing staff. I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…
The month of September is dedicated to help bring awareness to a very much misunderstood disease, Chronic Pain (C/P). In the USA, Chronic Pain has finally been inducted by the American Medical Association as a disease, with its own diagnostic code even though it encompasses multiple over-lapping conditions and diseases.
As a mother of a terminally ill child, who suffers debilitating chronic pain, I have researched pain extensively. I have argue d with physicians and meet with pain specialists at the pain clinic every month. I have bullied hospital nursing staff. I have witnessed and lived my child screaming like a wounded animal from pain….. Doctors telling her that she is a morphine addict and pharmacists double-checking and verifying Vic’s scripts…
Yet the levels of Vic’s pain force us to eat humble pie. We have to go back time after time asking and even begging for pain medication.
Tracy at http://ohwhatapain.wordpress.com/ is a passionate advocate bringing awareness about this chronic illness, and this month she has a special project. Please visit Tracy’s blog. Even if you are not directly involved chances are there is someone in your life that is. I have a headache (maybe) once a year. I never have a tummy ache, earache, toe-ache or any ache as a matter of fact. Yet I am a specialist on the subject of pain… I will therefore participate as a caregiver of someone who suffers debilitating chronic pain…..
So from Tracy’s Blog this month and all month-long;
Please answer the following questions:
What condition(s) do you have that have led you to living with chronic pain?
“Frozen abdomen,” is a condition in which repeat surgeries to remove the fibrous bands create so much internal scar tissue that further surgical intervention becomes dangerous. Inflammatory conditions like appendicitis, internal infections and abdominal surgeries can cause the abdominal tissues to bind together, forming scars. Adhesion formation in the abdominal or pelvic cavity can cause debilitating pain, nausea, vomiting, cramping. Patients with intestinal obstruction may experience constipation, diarrhea or a combination of both. In severe cases, adhesions can cause intestinal obstruction, bowel strangulation, complications with childbirth and infertility.
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her lifetime. http://www.oif.org
The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronicprimary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. Addison’s disease should also be distinguished from secondary and tertiary adrenal insufficiency, which are caused by deficiency of ACTH (produced by the pituitary gland) and CRH (produced by the hypothalamus), respectively. Despite this distinction, Addisonian crises can happen in all forms of adrenal insufficiency.
Endometriosis A major symptom of endometriosis is recurring pelvic pain. The pain can be mild to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage (1 through 4) of endometriosis, with some women having little or no pain despite having extensive endometriosis or endometriosis with scarring, while other women may have severe pain even though they have only a few small areas of endometriosis. Throbbing, gnawing, and dragging pain to the legs are reported more commonly by women with endometriosis.[4] Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting rectal pain and a sense of their insides being pulled down.[citation needed] Individual pain areas and pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.[citation needed]
Endometriosis lesions react to hormonal stimulation and may “bleed” at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.[citation needed]
Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.[2]http:
2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
Vic has lost her spontaneity. She has to plan every single outing well in advance whether it is a trip to the hairdresser or the doctor, watching Jon-Daniel play cricket or having a cup of coffee with a friend. Vic has lost her ability to live. She merely breathes.
3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
Both.
4. What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void?
Playing with her boys…. Vic was never able to play ball or “touches” with the boys. Vic spent a lot of time reading to the boys when they were younger. Now her health and pain is at levels that prohibits any compensatory actions.
5. What have you heard from others that made you feel better?
“It is okay to give up….”
6. Do you feel that people view/treat you differently? How?
People get tired of hanging around people who are always ill and in pain. They avoid Vic. The average person does not know how to handle her raw pain and they are scared that pain or “bad luck” is contagious. Vicky is viewed as someone who is past her “sell by” date.
7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
Vic used breathing techniques earlier in the diseases timeline. Now it is too painful. When Vic has a good day she will do something extravagant like pick the boys up from school and take them for a milkshake. It allows her for a brief moment to believe that her life is normal. It is a form of a coping mechanism. Living the moment and pretending that her life is “normal”
Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011
It is Monday the 3rd of September 2012. Vic had a horrible night and looked absolutely terrible this morning. Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.
Vic wanted to go with but Jared held her little body in his arms and said: “Mommy please stay in bed. Oumie will take me to the doctor. I promise I will phone you if I am scared or need you.”
Vic sobbed uncontrollably.
“Please Mommy, you are just going to be more sore and sick if you go with now…”
Jared and Jon-Daniel are strong and terribly protective of their Mommy. It stresses and scares them when Vic tries to do too much. The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price. They feel guilty…they assume responsibility for Vicky’s actions.
“Mom picked me up from school and is now very tired….”
” Mom came to watch me play cricket and is now sick in bed for a week again…”
” Mom broke another vertebra taking me to school…. “
Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives. They are missing out on their own childhood experiences. Most of the children in Jared’s class are having “Sweet Sixteen” parties. Jared is invited but chooses to stay home. He says it is because the kids smoke and drink… But I know he does not want to leave his mother.
Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking. You see, although we know death is inevitable, the timing is uncertain. It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.
Yet Vic struggles with dying. It is impossibly painful to leave her sons. To let go….. To allow them to be grandmothered….
Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012. The sonars show at least two more kidney stones. Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution. The urologist will perform ureteroscopy. Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.
Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother. He will bravely write a maths test and excel at it. Success and high marks are his coping mechanism.
Tomorrow, on the 31st of August, we will once again celebrate Vic’s life! Every year, for the past 10 years, we expected it to be Vic’s last birthday. Today I know that Vic will live forever. She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!
Tonight I sat doing Vic’s medication for the next 24 hours and I popped an extraJurnista into tomorrow morning’s tablets. Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain….. My gift to Vic an extra tablet so she can a better day.
So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.
I would pray for adequate pain relief. I would pray for some quality of life time for Vic with her boys. I would pray for Vic to have financial independence. I would pray for Vic to have peace of mind. I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.
I do thank God that Vic is still alive. I thank God for Dr Jabber Hussain and Jurnista. I thank God for Vic’s incredible boys. I thank God for the brave decision that Vic made not to have further surgery. Above all, I thank God that Vic is home.
Tomorrow Vic will have a busy day. She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Esther, afternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us. I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.
What is a relatively quiet day for us is a marathon for anyone as ill as Vic. I know that she will try so hard to survive the birthday and the party day. Somehow I don’t think she will manage it all. I just hope that she has a good day so she can spend some constructive time with her boys. They will need to remember this as a good birthday in years to come…..
On Saturday we will celebrate all the August/September birthdays. Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September…. I hope Vic will be able to handle two busy days in a row. Maybe the birthday high will carry her through it!
We have a family tradition of doing “birthday eulogies”. Everyone present gets to say something nice about the birthday person. Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is. This year I will I will merely thank her for being here!
What a wonderful caring community I have entered. I occasionally get a personal email from someone, who read my blog, and has a special word of encouragement for us as a family. I truly appreciate it.
I find that I am constantly coming back to my blog and emails so see if there is any new advice or message. I may be developing an emotional dependence upon the support I am getting from the blogging community….
I am re-posting an email that I received today from Alison of Tapestries of Hope. “Tapestries of Hope is a central New Jersey non-profit dedicated to honoring each woman in the community who is grieving the death of her mom or mother figure. Tapestries was created to provide a peer supportive environment for women to express their grief through workshops, support groups, expressive arts, and programs for continued healing.” I was reduced to tears by her loving, compassionate email. I want to share the compassion that we have been shown. I was so concerned about baring my tattered soul to the world that I was hesitant to start the blog…It is the greatest thing I have ever done.
Alison, thank you for your kind words. You how no idea how “bruised” and isolated I felt today, Thank you for showing me that you care and that there is a caring world out there – even if only in cyberspace! Thank you for taking the time to write me a personal email. You are a special lady!
Hi Tersia,
Forgive me for not emailing you right away. I’ve been reading the blog you’re keeping as Vic goes through her illness, and I’ve been touched beyond measure as I read of her struggle, yours, the joy, the roller coaster of emotions. And it took my breath away to listen to the song you dedicated to her “Never Alone”. One of the events we sponsor here at Tapestries of Hope is our yearly pre-Mother’s day gathering, called “Our Moms, Our Memories” and that is the song that one of the daughters sang two years ago.
I worked in hospice for many years, and our current president, Alisa, works at one now, as bereavement coordinator. I don’t know how hospice is in your part of the world, but I’m a strong proponent of it. It makes an impossible time just a little bit more manageable, and I hope your Vic, and you, will make use of it when you decide the time is right. My sister and I called in hospice for my 36 year old brother, Kysa, when he was ill with cancer, and again 6 months later when my mom, Betty Catharine, died of breast cancer. It was my experience with them that led me, ultimately, to work for hospice and then found Tapestries of Hope along with Alisa.
There are no words that I can give you that will make any of this better, but I want you to know that I understand your wishing so desperately for your mom to be here with you now, to listen, to help, to be there for you. My husband Chuck went through a very aggressive cancer last year (thankfully he has a clean bill of health now) but through it I wished for nothing more than to be able to call my mom and know that, even if nothing changed, I would feel better after speaking with her.
If you would like to connect with other daughters who have grieved their moms, I can put you in touch with so many. We have well over 200 daughters who make up Tapestries, both locally in NJ and around the country. We have a facebook page also, and you can find so much support there. Just type “Tapestries of Hope” into your search engine, and you will find us.
Whatever I can do to offer support to you as you find your way through this, please reach out. I’m very approachable and spend so much of my time chatting with daughters and emailing back and forth with them.
Please stay in touch when you can~
Alison, daughter of Betty Catharine Founder TOH,Support/Outreach
Yesterday I was really angry with Vic and the unfairness of life!! I know it was because Jared was hurting and I was scared. I watched nurses put needles and IV’s into my beautiful grandson. I saw him being wheeled into theater for the second time this year. I remembered how ill he was as a baby and a toddler. I felt the same fear strike at my heart as 13 years ago…
I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives. I wish I could hold them close and ward off all hardship, pain and fear. I cannot. I can only promise that I will never desert them. I will continue looking for brave doctors and cures….
On the 23rd of July, we found out that Jared had kidney stones. (https://tersiaburger.com/2012/07/23/deje-vu-7/). At the time the kidney stones were not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months. On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!
I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid… In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!
By Sunday night the poor soul was quite pale and said his pain was at an “8”. There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, Urobilinogen, pH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….
I managed to get an appointment with the Urologist for 10:00 this morning. He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year. Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning! The child did not whimper or moan! He was stoic in his pain! The 6th kidney stone was dissolved with a procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.
In the passage of the hospital Vic said to me “Mommy, I am so grateful. Jared got through the operation like a real trooper. ” I was immediately filled with an all-consuming anger. The operation went well, Jared did get through it like a trooper but what has started happening in his young body? Adhesions people!! Flippen adhesions!!!!
I said nothing but she saw my face.
As soon as we had Jared settled and comfortable I brought Vic home. She was totally exhausted and in absolute agony!
In the car Vic said to me “Mommy, you seem so angry with me? What have I done?”
“I am angry that an innocent child is going through the same hell that you went through as a child”
Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family. We made the decision not to have more children after Vic was diagnosed. We were determined to never subject another child to OI.
From a young age, we told Vic that OI was a genetic disorder. She KNEW that she should not have children. She fell pregnant TWICE. I know she was on the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds. Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!
I love the boys with every fiber in my body! I am so grateful that they are in my life. They have enriched my life in every way. I cannot imagine my life without them. I don’t want to live without them. But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day… They see their mother’s suffering. They live her suffering! Jared is starting to live his own suffering.
We are seeing Jared regress into Osteogenesis. It has been obvious for a long time that Jared’s ligaments and tissue are affected. He has only had a couple of mild fractures but he is always hurting somewhere.
Today Vic said that I have become “hard”. I suppose I have. Vic thinks I am hard because I believe in death with dignity. Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk! Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).
I cannot do this again. I am venting. I am so angry!! I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.
Vic's Final Journey 
