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.
9. http://geeton1.wordpress.com/ is an amazing blog of two people, Toni and Gerry, who share a passion to stop Child Exploitation and to bring Missing Kids and Adults, back home safely.
10. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has been an amazing friend. Thank you BB.
5 questions for you all
1. Who would you like to be, if you could not be yourself.?
2. If you could visit ANY place on Earth, where would it be?
3. What is your favourite Movie?
4. What is your favourite Song?
5. Why did you start blogging?
Thank you once again Shaun. You are a wonderful friend and blogger!!
I have been very slack and decided before I depart this world from this vicious flu-virus that I have contracted, I should get my affairs in order and accept all my awards.I apologise profusely for only accepting now. I LOVE getting awards, but I find it so difficult to pass the award on to so few bloggers. So I have come up with a strategy of saving my awards and doing it one-shot and hopefully I will not leave any one out… If I do – It is the flu…I received the Best Moment Award from two amazing bloggers – Jane – johannisthinking and Shaun http://prayingforoneday.wordpress.com/2013/04/10/best-moment-award-2/
Three Time Winner
Awarding the people who live in the moment,
the noble who write and capture the best in life,
the bold who reminded us what really mattered –
Savouring the experience of quality time.
I would like to thank two of my dear blogger friends for this amazing award. I dedicate this award to my precious child who is the reason and inspiration behind my blog. I started my blog when Vic was going mad with pain, and I was still fighting the system to get her into a Hospice Program.
Shaun has more than 670 followers after only blogging for a couple of months…He is articulate, bright, honest, sensitive and an amazing friend and blogger. I have so much respect for this young man who has overcome so much tragedy and hardship in his life. His love for Dawn and his children radiates from his blog.
The second is Wisconsin native Jane Johann, is a retired Reading Specialist and Language Arts Teacher. Jane received her undergraduate degree from Marquette University, where she earned a B.A., majoring in English Literature and a minor in Secondary Education (1974). She attained her M.A. as a Specialist in the Acquisition of Language and Reading Instruction, K-12, graduate of Cardinal Stritch University (1994).
I have never had any formal training – I just write from my heart. What I am trying to say is that Jane has every reason in the world to be a literary snob. Jane however is a kind, generous and compassionate friend. She writes to me and always has kind and encouraging words for me. I find peace in Jane’s writing. She cares deeply for others whilst she seeks “light, love and truth within ourselves is paramount to receiving the light, the truth and the love in others. Only in first accepting our worth, we will then be open to accepting the worth of others. Only in first loving and caring for ourselves, will we better equipped to love and care for others. I try to keep in mind the words of Kahlil Gibran, “It is not that God lives in us, rather we live in the heart of God!” Understanding that we all are part of each other, hopefully we will create a better world.”
Shaun and Jane thank you for honouring me with this wonderful award. I humbly accept.
The WordPress Bloggers that I nominate for this award are:
Wendie Jeanne Deacon at http://deaconfamilyblog.wordpress.com/an-angel-named-vic/. Wendie is a new blogger. I actually don’t know how she found my blog but I am grateful that she did. Wendie has fallen under Vic’s spell! Wendie is a very, very brave young woman. I cannot share her bravery and determination with you because she shared it with me in private correspondence. Wendie you are great. Thank you for your tribute to Vic and your friendship! I hope that you will blog about your challenges so the world can learn from you.
2. Krista – http://wordstohealthepain.wordpress.com is a young woman who is battling to come to terms with the death of her fiancé and soul mate. She is a new blogger too and can do with some support. She writes well. “Grief is a solitary journey. No one but you knows how great the hurt is. No one but you can know the gaping hole left in your life when someone you know has died. And no one but you can mourn the silence that was once filled with laughter and song. It is the nature of love and death to touch every person in a totally unique way ~~ Unknown”
Lori at http://letstalkaboutfamily.wordpress.com/was her late Mom’s advocate and caregiver. Her beloved father suffers from Alzheimer’s and Lori suffers from debilitating back problems. Lori is caring and understands the stresses of caregiving. Lori blogs about elder care, death and dying, assisted living, family relationships, hoarders and hoarding. She is an excellent blogger.
http://ericalagan.net is a gifted engineer who writes beautiful poetry about Life, Love and Family – giving these profound topics a boy’s/man’s point of view. This brave man writes “Yes, men do remain faithful to their loved one and men do cry.”
Gloria at http://grannyscolorful.wordpress.com is an amazing friend. Gloria always leaves a word of encouragement after reading my posts. She writes about her sadness after her son’s death, her anger, depression and the rare happy day. Gloria is a very colourful blogger and I encourage you to visit her blog.
Emmitt Owen Riley at http://mysteryoriley.com/dear-grieving-parents/ is a blog that gives one a glimpse of how these parents are coping with their journey of unbelievable grief, loss, and mystery after the mysterious death of their 20-year-old son. Truly a brave blog.
Mary Russell blogs her Journey Through Grief after the sad death of her son. It is poignant and raw blog yet filled with courage and hope. Thank you for blogging your pain Mary. http://maryrussell12.wordpress.com/
Mel Lefebvre at http://hopethebean.wordpress.com is blogging her pregnancy. She lost her precious baby, Henry, to Osteogenesis Imperfecta. It is the genetic disorder that my precious Vic was born with. This blog is about hope, fear, more hope and love. Please hold Mel in your prayers. Love you Mel!!
Diana at http://talktodiana.wordpress.com/ ‘s blog is a wonderfully upbeat blog. I love the quote section! “Never stand begging for that which you have the power to earn.” – Miguel de Cervantes is just one of many! Great fun. Thank you Diana for featuring Vic’s journey (and my blog)on http://talktodiana.wordpress.com/2013/04/12/friday-pick-46/ . It meant so much to me!!!
Jane at http://janevanwyk.wordpress.com/ blogs about her daughter DD and her daughter’s illness. She is a brand new blogger and I am giving her this award to encourage her to come back and continue blogging.
Kelly at http://nevercryoverspilledmilk.com is a single mom who bravely battles chronic pain. She makes the brave statement “you can’t cry over the small things and you have to look at the big picture.” Kelly you are a brave young woman.
Victoria Bruce at http://furrynuff.wordpress.com/ is a fellow South African blogger with my Vic’s names…I love commenting on her excellent posts because I get to type “Victoria Bruce”….She also happens to be a great blogger. I hope you accept this award Victoria Bruce.
Jonathan at http://afathershope.com/ eloquently writes about his grief when his baby daughter was born without kidneys. Jonathan writes from a father’s perspective. He admits to his raw pain and shares how he copes with his grief. It is a blog of hope.
Denise at http://forphilip.wordpress.com/ blogs about her raw, undiluted pain after the death of her son, Phillip. It is a difficult blog because she so perfectly articulates my pain, anger and longing. Diane I hope you will accept this award.
MJgoodburn at http://mymomsmemoirs.wordpress.com shares her mom’s final journey and the trauma within the family. It is a difficult journey…
http://behindthemaskofabuse.com is a heart wrenching blog about a woman’s life of abuse. She was raised by a narcissistic father, and a mother who rarely protected her from his verbal, mental , emotional and psychological abuse. She endured molestation, both inside and outside the family setting, raped at the tender age of 11 years old. This blog is written by an amazing person. A strong person battling recovery, anger and betrayal. She battles C-PTSD and BDD. Out of her pain two books were born and are published on Amazon “Buckwheatsrisk-Abuse Survival”, and a poetry book entitled “If I Could Write my Heart” I salute you!
Alison at http://happilyhomeless2.wordpress.com ‘s Handsome Husband died on the 21st of April from cancer. She is going through a dreadful time. She is angry, very angry… Alison I don’t expect you to do anything with this award but I am nominating you so you can know I am thinking of you. Hugs of strength to you.
Optie at http://walking-on-eggshells.com is another fellow South African whose blog I enjoy for her humour. Optie has however also been an amazing friend – always leaving a little message of encouragement. Thank you Optie.
RULES:
Winners re-post this completely, with their acceptance speech. That could be written down or video recorded.
Winners have the privilege of awarding the next awardees! The re-post should include a NEW list of people, blogs worthy of the award, and winners. Notify them the great news.
What makes a good acceptance speech?
Gratitude. Thank the people who helped you along the way.
Humour-Keep us entertained and smiling.
Inspiration – Make your story touch our lives.
Get an idea from the great acceptance speech, compiled in MomentMatters.com/speech
Display the award’s badge on your blog/website, downloadable in MomentMatters.com/Award
I would like to encourage you to visit some of these blogs. It will be a worthwhile visit…
I am finding it difficult to see what I am typing. My dear friend Dennis McHale posted this beautiful poem as ‘n tribute to Vic. I am touched that this talented man would take the time to do this. Dennis has been such a great friend. http://dlmchale.com/2013/05/02/in-memory-of-vicky/
Today has been such a mixed day. I have been filled with the deepest sadness and sorrow and yet I have felt at peace that Vic’s suffering is over. I miss her terribly.
I am feeling flu-ish and fell asleep on the sofa. Jon-Daniel covered me with a blanket, and I woke when he gently kissed me on the forehead. The way his mommy used too…
I want my child back! It is too hard trying to live without her.
Dennis thank-you for your beautiful words. Thank you for your love and support over the past year. I am too teary to write so I shall post this beautiful poem for the world to read and enjoy.
I love you my Angel Child. You have touched people all over the world.
This poem is dedicated to my dear friend “tersiaburger” In memory of her beloved daughter, Vicky.
——————————————————————-
You and I
are touched by one star.
Wherever you are
we stand together in one light
which no depth or height or distance
can ever dim.
Wherever you are
your light shines;
past time and space
past flesh to thought,
I feel your power.
Wherever you go
the day will dawn
and the star will appear;
for you are a child of this light
and it fosters your heavenly dreams.
In this light, I have found ways
to heal, to bind up,
to tear down the feeble structures
of fear of your absence has
carelessly constructed within me.
You and I
are touched by one star.
In its glowing embrace
we find our true selves;
we find our peace.
Today I may stand alone,
missing you with all my heart
be I stand strong.
Through the corridors of our courage
you have helped me to
discover those eternal lines
of love within myself;
my birthright discovered because
Stepping Stone Hospice is the name of the Hospice that we started as a tribute to Vic’s journey. It is the only thing that makes sense – why else would my child have suffered so long and hard?
I am busy with the website for Stepping Stone Hospice and accidentally came across this beautiful poem…I share it with you.
If any of you talented bloggers out there have appropriate poetry that we could publish on our website please send it to me. We will link it back to you.
The Menu will contain a Grieving and Bereavement Folder and I would like a “Poems of Love and Compassion” Section.
Please help.
Together We Walk the Stepping Stones – by Barb Williams
Come, take my hand, the road is long.
We must travel by stepping stones.
No, you’re not alone. I’ve been there.
Don’t fear the darkness. I’ll be with you.
We must take one step at a time.
But remember, we may have to stop awhile.
It’s a long way to the other side
And there are many obstacles.
We have many stones to cross.
Some are bigger than others.
Shock, denial, and anger to start.
Then comes guilt, despair, and loneliness.
It’s a hard road to travel, but it must be done.
It’s the only way to reach the other side.
Come, slip your hand in mind.
What? Oh, yes, it’s strong.
I’ve held so many hands like yours.
Yes, mine was once small and weak like yours.
Once, you see, I had to take someone’s hand
In order to take the first step.
Oops! You’ve stumbled. Go ahead and cry.
Don’t be ashamed. I understand.
Let’s wait here awhile so that you can get your breath.
When you’re stronger, we’ll go on, one step at a time.
There’s no need to hurry.
Say, it’s nice to hear you laugh.
Yes, I agree, the memories you shared are good.
Look, we’re halfway there now.
I can see the other side.
It looks so warm and sunny.
On, have you noticed? We’re nearing the last stone
And you’re standing alone.
And look, your hand, you’ve let go of mine.
We’ve reached the other side.
But wait, look back, someone is standing there.
They are alone and want to cross the stepping stones.
I’d better go. They need my help.
What? Are you sure?
Why, yes, go ahead. I’ll wait.
You know the way.
You’ve been there.
Yes, I agree. It’s your turn, my friend . . .
To help someone else cross the stepping stones.
I started fiddling on the Appearance etc links and changed the theme of my site!! I have made booboos and don’t quite know how to fix it…. I have categories in twice – I am not sure whether the colour works!
Today I read the post of a very dear blogger friend. She is an unbelievably strong and resilient woman who is dying from congenital heart failure. She is a medical professional who served her country bravely. Sandra is married to an amazing man, and she loves his children dearly. They are a great source of joy to her.
I have just re-read most of Sandra’s old posts. It filled me with sadness reading her brave posts, an almost intellectual outlook on death… My friend is not a stranger to death. As a medical professional she encountered death often. Death in every form, indiscriminate of age, colour or creed.
Sandra posted : 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/2011/03/25/
When I read this post I recognised the same almost detached approach to death that Vic had…As emotionally intelligent people Vic and Sandra look at death and know that their loved ones are the ones who will suffer the loss. Vic so often expressed her concern for her loved ones who would be left behind. My friend does the same in her posts…
Sandra wrote:
I believe and hope that I will die with dignity,
we are not born with fear and so we can die without fear. I think a lot of us are not so much afraid of dying as we are of not being remembered. it is only human to hope that our kids will have some fond memory, our grandkids, friends and maybe even some people who just passed through on the way to somewhere else. I would like to think there will be some fond memories of me. Chris is going to have a memorial at our home (I think) for me. I have asked for a celebration of my life. remember me as I am a real person with some good some bad and some … that should maybe stay in the vault:)
Today she posted: “for tonight i am not going to lie to you. i feel death coming closer, i hear the bear growl. at times i think i may see her but then she moves a little and we continue down this path. the toxins are working their way through my body to the skin where they are sores that itch and bleed. i have these toxins because my liver and kidneys are not working the way they should. my liver is enlarged and causes great pain. it is like having the worst charlie horse you have ever experienced just under your ribcage on the right side of your body. of course the spleen takes up its chorus on the left side and the kidneys can be felt in more places than you think and may be different in different people. i am so weak at times that just standing takes a monumental effort. my arms and legs can turn to shaking jello. sometimes my eyes won’t focus and my mind is hard to clear. forget about reading or even looking at the temp control on the wall.” http://thedrsays.org/2013/04/29/sex-lies-and-videotapes/
I am re-living Vic’s final journey with this precious, brave woman.
The purpose of my post is to thank Sandra for her friendship, support, guidance, compassion and advice over the past year. Often when I vented about Vic being stubborn or ill Sandra would gently advise me from a terminally ill person’s point of view. She opened my eyes to so much of my child’s emotions and personal struggle… She knows because it is her journey too.
My friend is a medical professional and KNOWS what is happening in her body. Vic knew too…
In November 2012 Vic started saying that death was close…she would not bounce back this time…and now my friend says “I feel death coming closer…”
Oh my friend what can I say? I know the emotional agony that Vic went through when she was where you are now. I wish I could give you some of my health. I wish I could wave a magic wand, and you would have more time. We both know I cannot do any of this.
Please know I hold you in my heart. I am sad that your journey is almost over. I am so sad for the dreadful pain you are in. I hope you are having pro-active symptom control.
I want to thank you today whilst you are strong enough to hear my words. Thank you for your friendship, compassion and support over the past couple of months.
I think you are incredibly brave, and you remind me of Vic…Stubborn, compassionate, intelligent…amazing! I hope that you will meet her when it is your time to cross over. Please know that I treasure you as a dear friend.
I pray for a miracle, that you will have lots of time, pain-free days. Know that you are loved and admired. I wish we had met.
I am not saying goodbye – just thank you for being a wonderful friend
To all my blogger friends out there – please pray for Sandra and Chris….
I found this wonderfully talented poet blog when I was reading some Freshly Pressed blogs. This woman is a member of the “My Child is Dead” club too. When I read these words they echoed through my soul. I am hoping that I will feel whole again…I don’t yet.
I miss my child!!!!!
When my brave daughter planned her memorial service she specified these words of wisdom to be in the funeral letter. It was a personal note from Vic to us. I wonder how many people actually realized it?
Reason, Season and Lifetime …
People always come into your life for a reason, a season, or a lifetime. When you figure out which it is, you know exactly what to do. …
When someone is in your life for a REASON, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, or to provide you with guidance and support, to aid you physically, emotionally, or even spiritually. They may seem like a godsend to you, and they are. They are there for the reason you need them to be. …
Then, without any wrong doing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. …
Sometimes they die. Sometimes they just walk away. Sometimes they act up or out and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled; their work is done. The prayer you sent up has been answered and it is now time to move on. …
When people come into your life for a SEASON, it is because your turn has come to share, grow, or learn. They may bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it! It is real! But, only for a season. And like Spring turns to Summer and Summer to Fall, the season eventually ends. …
LIFETIME relationships teach you lifetime lessons; those things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person/people (anyway); and put what you have learned to use in all other relationships and areas in your life. It is said that love is blind, but friendship is clairvoyant.
Thank you for being part of my life.
Love
Vicky
When I read this the first time I categorized people in to the Reason; Season and Lifetime categories… I clearly remembered and recognized the “Reason” and “Season” friends… I found that the “Reason” people were people who crossed my path early in my life… I almost felt that it was old work colleagues, school friends, childhood neighbours. Character defining people who either moved on or were left behind by me.
A “Season” can be defined as an hour, day, week, year, or several years. Maybe even part of a lifetime, but it will at some time fade out and for no real reason. The “Seasoners” will bring you an unbelievable amount of joy. Believe it. It is real. But only for a season. The season relationship is not something to force or cling to… It dies naturally and through no fault of either person.
Lifetime friendships offer not only good times, but also survives bad times, offers times for growth and challenge. The friendship grows over time, and a deep abiding bond develops – a love which sustains both people in the friendship. They become members of your family. They may be people with whom you’ve grown up or met yesterday, but they will be there “until death do us part”.
I stood in front of the church flanked by my grandsons when I delivered my precious child’s eulogy. I looked at the people and recognised the “Reasoners, Seasoners and Life timers…”
I saw so many Life Timers who truly loved Vic until death saved her from more pain and suffering. Friends that never abandoned her, patiently waited for a good day to see her… Friends quietly crying tears of deep sorrow and loss….
I remembered why Vic chose this poem, in 2003, to be in her funeral letter. She wanted to thank each and every person for the role they played in her life. She wanted people to know that she clearly saw and accepted this truth. She felt great sorrow when someones time with her ended. It’s only natural when we come to love someone to want them to be there forever. Vic clung to relationships and friendships way past their “expiry” date. She mourned her losses.
Vic did however learn that very valuable life lesson – to be grateful for whatever time she was granted with those she cared about. Vic clung to life to extend her time with the “life timers”…
My beautiful Vic
Death had to pry her fingers from Life and her Life Timers…
Does time really heal all wounds? Mothers who have lost a child to death assure us that “it will get better.” Friends and loved ones have started telling me that “it is time to get over it and get on with life.”
Researchers say that a mother never ceases mourning the death of her child. I believe this finding.
In those immediate hours, after my precious child’s death, time stopped. My life ground to a halt.
At Vic’s Memorial Service I was amazed that people rushed off after the service and tea to meetings, to pick up children from school…I remember thinking that everyone had already moved on…
I stood next to the hearse not wanting it to leave. I rested my hand on the wood of the casket…I wanted to pull my child out of that darn coffin and wrap her in my arms. I was not ready to say goodbye.
Today it is 100 days filled with searing pain and longing since Vic left home for the last time.
I have begun to mark time differently. I count the number of days, weeks and months that I have mourned and missed my child.
I know that every day that passes is one day closer to me being with my beloved child again. I know that Vic’s suffering is over; I know that it is for the best that Vic’s dreadful pain filled life is over…. It does not make my mourning less.
So today I am burning candles for my child. I am praying that my child is at peace. I am praying for grace to endure this longing. I pray that I will have the strength to continue honouring Vic’s memory….
I pray that I will be worthy of the trust she put in me to look after her precious boys.
On the surface it appears as if the boys are coping well. I heard a comment from a teacher this week saying that, despite the trauma they went through with Vic’s death this year, they are actually doing better than last year.
It was so difficult watching her suffering!
So today, once again, I say “Rest in Peace my beautiful Angel Child”
Today it is the 14th sad Friday since Vic died. Will I ever experience a Friday without sadness again?
It is 99 days today… Tomorrow it will be 100 long, tear filled days…
Sweetie, I love you as much as I did the day you stopped breathing. I miss you more than I could ever have imagined. I miss your gentleness, your unconditional love, your caring, your friendship and your voice.
Today was an amazing day. I desperately miss my beautiful child.
I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan. I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself
“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”
I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done! I cannot undo the lie or my decision not to go… I will however confess if I see him again.
My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed. There was a comment on one of my first posts…I reread the post and the next and the next and the next… I reread every one of the 335 posts I had written.
Other times, when I reread any of my journal entries or blog posts, I teared up. Today I did not. I was filled with relief.
I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity. The more I read the more I realised how selfish I was being. I took cognisance of the fact that in the early days of my blog I was careful with my words… Today I realised how much was never written. I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.
Today I was grateful that her suffering was over!
Does that mean I am “over” the death of my child? No! No! No! But I am at peace today that Vic is free of pain…
I missed her today as I will tomorrow, the day after tomorrow, next year and forever!
Vic and I
23.5.2012
At about 01:00 this morning Vic came into my room and got into bed with me. Her tummy was cramping badly and she was scared. She just lay with me for a long time, sobbing and talking about her fears.
E.H.Chapin said: “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”…
Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…
She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…
Today was a day out of hell for Vicky. She is deadly pale – she actually has a ghost like appearance. She was so ill that she was unable to take pain medication and now her pain is out of control.
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed with pain when I changed her. Seeing my child sick and in pain, every day of her life , kills me. I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/
12.8.2012
Vic is still a very sick little girl. The fact that her pain is better controlled does not mean that she is well. If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death. This week Vic’s amazing resilience again amazed me. She is strong beyond comprehension!
My heart bleeds for her that her fragile body has once again failed her incredible will to live. It is clear that she is merely holding onto life, as she knows it, with her fingertips……
I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved. Vic will never function on any level again. She is confined to bed relying on medication to keep her sane. Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/
Schedule 6 medication – 28 days supplyRest of Vic’s medication – decanted
21.8.2012
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!
This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”
It is as if her wish triggered an avalanche of events.
Vic has been projectile vomiting since, and the perspiration is pouring off her. Her heart is racing, and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!
Vic will not be at her son’s side tomorrow when he is readmitted to hospital.
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.
We have already had so many “extra” years. But the fact remains that Vic is ill. Today she is more ill than yesterday or even last week or last month. It is not an UTI causing the pain and fever. Her pain control is good enough to mask symptoms. Waves of severe nausea and cramping remain…
I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another…. I have read that it feels “uncomfortable”. It is called terminal agitation.
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 milk shake. 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”. https://tersiaburger.com/2012/10/21/vics-roller-coaster/
Mothersday 2012
14.11.2012
Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.
Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.
Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.
Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.
Vic is having a lousy day. She is exhausted and very swollen. Despite the injections she has been nauseous all day. This evening she had another vomiting bout. Tomorrow we will see Dr Sue again. Just maybe there is a 3rd anti-nausea type injection available
Vic also complained of a terrible “acidic” feeling.
Hospice has just fitted a subcutaneous driver – again. Vic’s pain has spiralled out of control over the past couple of days.
Vic was in absolute excruciating pain during the night. She battled to breath.
“Help me Mommy! I can’t stand the pain anymore…”
I lay next to her and put constant pressure on the area that hurt most. It was just below her ribcage – liver. “Oh Mommy, it is so sore. Can you feel how sore it is?
As a little girl Vic used to believe that I could “feel” her pain…
“Feel how sore my toe is Mommy…”
As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease. It cannot be so I look for a new spot on her bum to stick in a needle. https://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/
3.12.2012
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
12:42am and Vic is sleeping peacefully. She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!
Vic’s legs are growing very weak. The cellulitis on her arm has worsened despite the antibiotics. It is now oozing pus. Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics. She had a violent vomiting spell just after she took her antibiotic tablets tonight. It is very difficult for her to keep tablets and food down. Despite the six-hourly anti-nausea injections she has…. And of course there is the problem of the poor absorption.
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.
“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded
I lay behind her back, gently holding her whilst the tears wracked through her little body.
“I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried
Vic has been vomiting non-stop. The acid has burnt the inside of her mouth. Her derriere is so lumpy, black and blue from the constant injections. Sr Siza popped in. She examined Vic and started drawing up a Clopamon and Morphine injection.
“Please Sister, not my bum. Please do it on my thigh.”
Vic no longer has an appetite. She is sleeping at least 20 out of 24 hours. Vic is very warm to the touch and appears flushed. The thermometer reflects a temperature of 37 degrees C.
“Do you understand what your body is telling you Vic?” Siza asked
Jon-Daniel telling his Mommy he received his honours blazer
2.1.2013
Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.
“Something is wrong mommy.”
This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service. She cried when she (again) named her pallbearers. “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible” https://tersiaburger.com/2013/01/02/sisters-by-heart/
Jared just quietly sitting with his mommy
1.7.2012
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
And then on the 10 th of September 2012 I blogged the words that I want to repeat today…
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…
On the 1st of January 2013 we started Stepping Stone Hospice & Care Services in my suburb. We operated from my home with one highly skilled Palliative Care Nurse, a Palliative Care Doctor, a network of caregivers, a four women steering committee, one car and a lot of enthusiasm and energy.
Vic was our first death. Stepping Stone was borne out of her pain and her desire to “pass it (Hospice Care) forward”. Many years ago, I promised her that I would start a Hospice in her honour…. It would be her legacy. When Siza looked after my Dad in his final days we “connected”. She is a beautiful, compassionate, efficient person. She has a gentle yet confidence inspiring disposition, and she delivered on her promise to Vic on day one. When she came to set up the subcutaneous driver the first time she promised Vic that she would take care of her pain needs. This she did to the best of her ability.
I blogged on this new lease of life Hospice gave Vic. We have at least two and a half wonderful months where Vic was able to “live”… go out for milkshakes with her boys.
We have been so blessed. Six weeks ago we were able to move into an office on the premises of an amazing charity organization called Amcare. We now have a donated desk, laptop and printer. We have quite a lot of donated equipment such as wheelchairs, walkers etc. We only have one dilapidated chair but our work is in people’s homes not in offices!
People have generously donated second-hand clothes which more than provides for the pain medication that is needed to treat our indigent patients. Through generous donations by a couple of people we have managed to pay Siza’s salary, fuel and cell phone costs. We have been able to buy a software program that will allow us to invoice the medical aids, of patients, that have terminal care cover.
Today Trix received a phone call from a lady, our of our second-hand clothing benefactors, who asked whether we could meet with her brother….he wants to donate a building to Stepping Stone Hospice!!
Our God is a faithful God. We have not advertised nor marketed aggressively at all.
I am speechless with the wonder of people’s generosity and love!
Please pray that this will indeed happen!
Vic, your legacy will live on. Thousands of people will be able to live and die with dignity because you had a dream. I love you Angel Child. I know you are our guardian angel!!
Vic's Final Journey 