Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.
“Rays of hope” I thought.
I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…
Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.
So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…
I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.
I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.
Rest in Peace my Angel Child. You are ALWAYS in my heart.
This year – today – I am saying “Why don’t I just go to sleep and never wake up?”
Last year Vic said: “My boys don’t need me anymore. I have been sick all my life. Even my ears hurt. ”
On the 8th of January 2013 Vic said “Mommy my room is full of angels…”
Tonight I reread something a friend sent me as a comment https://tersiaburger.wordpress.com/wp-admin/edit-comments.php?p=383&approved=1
I have been following your journey now for some time and my heart goes out to you and your family. It is NOT EASY to care for somebody that is terminally ill. It makes it even more difficult if that person is your child.
I would like to share something with you though. It is vitally important that you take care of yourself in this tiring time. Please accept all the help from family and friends that’s been offered to you. This will give you some breathing space. It will also allow Vic to know that it is okay if Mom is just having a little bit of “me” time. Her energy is very powerful and she proved it to everybody up to now that she wants to survive.
Allow all Angels and guides to assist you with the care that you and your family so much need right now. God allows you to call upon their assistance when you need them. When Jacob was struggling with an Angel he called the Angel Michael to assist him and Michael was there not only to help him, but also to guide him with whatever he was struggling with. There are many stories in the Bible and other scriptures about God’s Angels. What still amazes me is that God found it necessary to create Angels. HE knew that we and all other creatures would need assistance and comfort when we are lonely. It took me a long time to work this out. It was only after my mom passed away and I fell very ill that my awareness of these wonderful creations of God was awakened.
Dear Tersia, know they are there, they are with you. You just need to ask for their guidance and assistance. Please know that Angels come in all forms. It might be your neighbour, your friend, nursing staff or maybe a presence! Nurture yourself. Get all the friends, family and help that you can now and trust people. They will be guided and equiped with the knowledge to help you now. You need to be taken care of now and so does your family.
The angels did come to comfort my child in her most fear-filled day.
We have found many angels in human form. Friends, family, acquaintances, WordPress Friends, Facebook friends…..
Thank you Louise for opening my eyes to the angels. Thank you for the angels that comforted my child in her hour of need and thank you for the angels that came and took her by the hand and whisked her away to a pain-free, joy filled place.https://tersiaburger.com/2013/01/08/gramps-was-here/ https://tersiaburger.com/2012/06/17/i-always-pray-for-you-but-you-dont-seem-to-have-a-guardian-angel-17-6-2012/
Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..
It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.
It is estimated that a maximum of 5% of people who die from terminal illness in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.
Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?
Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?
They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?
I read the post of an amazing woman who is suffering from congenital heart failure. She is in so much pain. I cried when I read her post. http://thedrsays.org/2012/11/08/ She replied to a question whether better pain control was possible….. “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”
Vic has received a new lease on life. Vic has 100% better quality of life since her pain is under control. We discovered, through the expertise of a wonderful palliative care team that Vic’s body did not absorb monstrous quantities of morphine! Now she is not only functioning, she is LIVING! Vic is more lucid than she was before.
The pain was killing Vic… Palliative care has given her life.
Being prepared to die is one of the greatest secrets of living. George Lincoln Rockwell
When Tony Nicklinson’s legal team visited him two days after the high court decision, he communicated via computer by moving his eyes “So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.
“I suppose it was wrong of me to invest so much hope and expectation into the judgment but I really believed in the veracity of the arguments and quite simply could not understand how anybody could disagree with the logic. I guess I forgot the emotional component.”
Nicklinson’s despair following last week’s ruling was evident to all, as he broke into sobs that shook his paralysed body. In a statement issued through his lawyers, he added: “I am saddened that the law wants to condemn me to a life of increasing indignity and misery.” http://www.guardian.co.uk/uk/2012/aug/22/tony-nicklinson-right-to-die-case?newsfeed=true
Today at 10:00 Tony Nichlinson died surrounded by his loved ones. His family said he simply gave up….. This supports my theory that death is actually a conscious decision. I have seen Vic turn back from death. It is not anything physical but in that second something changes! We all know of someone who has “held on” until a loved one walked in whilst others wait until their loved ones have left the room before they die. I have personally experienced this with my mom when she passed.
I take great comfort from all my research into Near Death Experiences.
First, published studies have shown that people who undergo cardiac arrest can recall specific memories and demonstrate consciousness. Second, during cardiac arrest, there is no measurable brain activity. “If you combine these two sets of data together, it indicates a need to do a large study to determine: is this real or not? Can this really be going on?”
Still, the explanation behind these events can be attributed to the complexity of the human mind, not, as some believe, a universal spiritual experience, or even a new realm of science.
“When you study mind and brain, you see that, although in many circumstances this practical model we have developed — mind and brain are the same thing — is fine, when you go to an extreme environment like during a cardiac arrest…they don’t seem to apply anymore,” says Parnia. “It may suggest that there’s something that hasn’t been discovered scientifically.”
Studies by Parnia and other researchers show that between 10 and 20 percent of who are resuscitated from cardiac arrest had a near-death experience (NDE). Various other studies show the frequency of near-death experience to be between 4 and 18 percent. The experience is typically described as a progression of stages. First, the person has a sense of peace, then a sense of separation from the body. The person then enters into darkness, and sees a bright light like the end of a tunnel. Finally, the person enters the light and interacts with an entity, described as God, Allah, or simply a universal cosmic force.
During the time that people report the feeling of detachment from their physical body, or an out-of-body-experience, they report a perception of floating above their body, or floating near the ceiling in the room where the experience occurs. http://www.popsci.com/sam-barrett/article/2008-10/first-few-minutes-after-death?page=1
The art of dying is the art of letting go. Our fear of death and letting go keeps us in fear of uncertainty and change, which are a natural part of life. Out of these fears we hold on to old beliefs which make us live in fear, misery and the idea of separation. Our fear of death is deeply repressed and usually unconscious. We are filled with fear and trepidation when a beloved dies, is terminally ill, or when we ourselves are challenged with illness, old age or a life threatening situation.
I am grateful that Tony Nicklinson’s suffering and misery has ended. He is at peace and I believe now truly lives in a healed body His suffering is over. I thank God for His Mercy.
Rest in peace Tony Nicklinson – brave warrior!
When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.
So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.
Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!
An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.
My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!
As usual I digress.
Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her. She fears that the boys will abandon her and look to us, the grandparents, for parenting. She fears losing the only “position” in life that she has left – the position of “Mother”. It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
Today was a bad day – again.