“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.”
Category: Religion in my world
Vic’s Roller Coaster….
The Voyage Located 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…..
I hope that it will not happen whilst I am away.
Remission 15.10.2012
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.
Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity. http://en.wikipedia.org/wiki/Remission
Remission 15.10.2012
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.
Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity. http://en.wikipedia.org/wiki/Remission
Lots of Tears With Less Than a Few Months to Live
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.”
Writing in June for HuffPost, Meredith expressed not a fear of death, but of leaving her daughter behind. She wrote:
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.
The following was first published on Meredith’s CaringBridge page:
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.
Love always, Meredith
I am taking a break from your blog
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.
Is there pain after death – post 2
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…
It is okay to let go my angel child.
Danie – the “Wind Beneath My Wings”!
Today my beloved Danie turned 74. He is an absolutely amazing person. He has the wonderful ability to love and to be loved.
I met this amazing man through mutual friends 24 years ago. It was two weeks before his 50th birthday. I casually asked whether he was going to have a big party and he said “no”. He was newly divorced and did not feel up to a party. In a moment of pity I said “Well, nobody should be alone on his birthday. If you are not doing anything pop around for a glass of wine…”
He duly popped around for a glass of wine. After a couple of glasses of wine I asked him if he had dinner. He said “No” and I said I would see if I could throw together a tuna salad… I opened my fridge and it was pretty empty. Some salad stuff, milk, apples and a couple of bottles of wine…
I managed to put a salad together but I could see the birthday boy was not overly impressed. I was not concerned at all. He was far too good looking and newly divorced so I did not want to get involved with him. I had been divorced for many years and Vic was used to it just being the two of us.
I dodged all Danie’s advances for more than a year. On the 8th of December 1989 I accompanied Danie to a black tie event. At the function I could not help but notice the reverence his colleagues had for him. He danced like a dream and remembered that it was my birthday at 12 O Clock…. It was truly a fairy tale night and I fell hopelessly in love.
Vic immediately sensed that there was danger! She referred to him as “that man”…. She cried a lot and wanted to come home from boarding school. Vic made a 360 degree turn around. She went from wanting to go to boarding school to wanting to move home… from independent to needy… from being a difficult teenager to being an impossible teenager.
I met Danie’s children. I was terrified! I did not know or like children. My life was structured, neat, organized and perfect. I was totally committed to my career. I had property, a business, lots of friends, a healthy bank balance and my own toolbox. I did not need any complications in my life!!
I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives. I asked for a clear scripture!
I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”
I immediately went back on my knees and prayed again. “God, thank you for the scripture you gave me but what about all the children?”
I opened my Bible and it fell open on page 793 of the Old Testament. Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “
Barren? That was me… The day after Danie’s 52nd birthday we were married.
So tomorrow this wonderful man and I will celebrate our 22ND Anniversary. We have managed to create a “home” for our five children. The children, I feared, I now love as my own. Two of the four call me “Mom”. Their children are MY grandchildren. They allow us to be part of the children’s lives and do not discriminate between the grandmothers. From the day we were married Vic has called Danie “Daddy”. Danie’s four children are her siblings. They are our infrastructure.
Danie has been so absolutely amazing with Vic and her illness. When my dad moved in with us Danie just accepted it as part of our journey. He was incredibly patient with my Dad who suffered from Alzheimers. He is my back-up system. His selfless, caring nature has allowed me to pursue my career. I am able to travel internationally for my work as he is home…..he is my back-up. He fetches and carries the boys. He checks on Vic and loves her and the boys unconditionally. He shops and manages the home in my absence. He thinks I am beautiful and smart.
This beautiful man is more than I deserve. I love him with every fiber of my body. I am grateful to him for the gift of his children and grandchildren every day of my life. I am grateful that he taught me the biggest commandment of all – love!
So tonight I salute a wonderful man, husband, father and grandfather. He is my best friend. He is an amazing father to Vic. Thank you God!
He is truly “The wind beneath my wings” http://www.youtube.com/watch?v=c9ZMDPf9hZw&feature=colike
Lovely Blog Award
I was recently nominated for the lovely blog award and graciously accept. Thank you Tracy Rydzy for this nomination. http://ohwhatapain.wordpress.com.
Tracy has opened my eyes to the world of the chronic pain sufferer. Vic hides things from me because she tries to protect me. I am so healthy and do not know or understand pain. Tracy articulates pain and her journey beautifully and I am grateful to her for sharing her painful journey with the world. It is such a valuable source of information! It has given me an insight into the dark, fearsome world of pain. Thank you Tracy and all the people who I nominated. You and bloggers like Katie Mitchell – http://connectivetissuedisorders.wordpress.com, (who nominated Tracy), have made my world a better place. I thank you all.
The Rules for The Lovely Blog Award:
– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire.
– Contact the bloggers you nominate to let them know and to link them back to your post.
1. I cry in the shower
2. I only learnt to cook after I got married – the 2nd time!
3. My ultimate career would be to be a spy.
4. I want to be the oldest person to ever skydive
5. I read the eulogy section in the newspapers
6. I feel guilty because I am so healthy.
7. I am a loner.
I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:
http://grammarofgrief.wordpress.com
http://ourlonggoodbye.wordpress.com
http://missmorgansmom.wordpress.com
http://poemattic.wordpress.com
http://fullcircledme.wordpress.com
I hope that you will take time out of your schedule to check out some of these beautiful bloggers. It is truly inspiring.
This is Vic’s Journey
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
This is Vic’s Journey
Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.
“I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy. We have always been so close….” Vic lamented this past week.
I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….
Knowing that death is imminent is takings its emotional toll on all of us
Vic said tonight that she has never been more scared in her entire life. She is scared of being “isolated” from us. She fears that we will not cope. She is so scared of the pain. She is so scared of leaving the boys behind….
I blogged on Vic’s fears before. https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012 That blog was based on some research and actual observations. Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months. For the worse!
The good thing is that Vic is actually sharing her fears with me. Tonight we prayed over her fears. Vic, at last, is dealing with her fears.
Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad! Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it. Vic over the past couple of months has lashed out at the boys and I.
Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.
Vic feels guilty about being a burden on us. She also feels guilty that she will be leaving her children behind. Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident! I told her that I felt guilty for yelling at her when she was 4 years old. Until my dying day I will always remember the fear and confusion in her dark brown eyes….
Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…
We spoke and I told Vic that we simply have to let things go. We cannot change the past. We must fix what can be fixed and try to let go of the things that cannot be changed.
Vic is stressed that Jon-Daniel and she have drifted apart. He is angry with the situation. She wants to spend time with him to rebuild their relationship.
Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already. The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.
Vic has had many physical and emotional losses which have come before the loss of life itself. Yet she has gained some things too. She is seeking spiritual peace, a new relationship with her God.
Hospice has given Vic Azor for the anxiety. I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure. She is getting her life in order. Over the years we discussed death as a natural extension of life…. Now she is discussing her funeral with me. Psalm 23 ans 1 Cor 13 will be the readings… What I will dress her in… Her pallbearers…
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly, whilst her son suffered carrying The Cross… She had to stand by and watch Him die the cruelest of cruel deaths…
Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time. Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”
God please have mercy on my child.
Hospice counseling….
“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.
via Hospice counseling…..
Hospice counseling….
We met with Alan, the Hospice counselor, today.
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!
Mommy, I thought I had more time….
“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
Mommy, I thought I had more time….
“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.
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
Vic has reached another milestone in her life.
Vic's Final Journey 