Death – Page 10 – Vic's Final Journey

Hospice patients live longer

This post is all about pain and the myths and realities in hospice care

Palliative care usually starts too late. We see it on a daily basis at Stepping Stone Hospice… Most patients die within days of becoming patients. Doctors continue to treat the patients until days before their death. Referring a patient to Hospice means “conceding defeat”.

If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without. It is a total fallacy that Hospice patients die sooner than non-hospice patients.

Research published in the Journal of Pain and Symptom Management found that terminally ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life. Source: National Hospice and Palliative Care Organization

Survival Periods
For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079).
This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression. The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792). http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf

World Health Organization (WHO) definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice

Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”

The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.

Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.

Myth: “My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”

Reality: In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.

Myth: “It is best to wait until the pain is severe before taking pain medications.”

Reality: It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.

Myth: “People who take strong narcotic pain medication become addicted.”

Reality: Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.

Myth: “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”

Reality: Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.

Myth: “The side effects of strong pain medications make people too sleepy.”

Reality: The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.

Myth: “Once you start taking morphine, the end is always near.”

Reality: Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.

Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.

http://www.careconfidently.com/2012/05/14/all-about-pain-myths-and-realities-in-hospice-care/

I know that Hospice provided my child with life. I believe that Vic would have died months earlier if she had not been treated by Hospice. It is a basic human right to die with dignity. I am grateful that Vic had the privilege of dying with dignity.

Nelson Rolihlahla Mandela

How we forget things… even great things!

The brain is a marvellous thing. Let me rephrase that – my brain is a marvellous thing! It shuts out bad memories…

http://sadderbutwiser.wordpress.com/

I am starting to forget Vic’s pain, the relentless nausea, intestinal obstructions, cramping. I have blocked all the excursions to doctors, Radiology and Pathology Departments…the countless “Bad News” meeting with doctors. I now focus on my longing for her. The good and funny times…

I am unable to remain angry for a long time. Well, at least with people I love. I forgive easily. Life is too short, and negative energy drains me. Danie, my husband, believes I have a split personality. If, or rather when we have an argument, I will say what I want to say. I play the ball and not the man. I don’t get personal nor do I generalise. Within minutes of the argument I would have forgotten I am angry and start chatting again as if nothing ever happened. Danie will sulk and stay angry for days…

When I have been harmed by malicious people, I forget. They no longer “exist” in my life, but I don’t walk around with anger in me. I will remain civil. I just don’t care anymore.

The bad thing about this wonderful brain of mine is that it also blocks out the good parts of bad memories… As I no longer have a daughter to cure I Googled my own “symptoms” and found the following information http://io9.com/5952297/two-ways-to-forget-bad-memories-according-to-a-new-scientific-study “One mechanism, direct suppression, disengages episodic retrieval through the systemic inhibition of hippocampal processing that originates from right dorsolateral prefrontal cortex (PFC). The opposite mechanism, thought substitution, instead engages retrieval processes to occupy the limited focus of awareness with a substitute memory. It is mediated by interactions between left caudal and midventrolateral PFC that support the selective retrieval of substitutes in the context of prepotent, unwanted memories.”

Specifically, individuals could remember what caused the event, but were able to forget what happened and how it made them feel. Co-author Professor MacLeod said: ‘The capacity to engage in this kind of intentional forgetting may be critical to our ability to maintain coherent images about who we are and what we are like.’

The research, which was funded by the British Academy, is published in the Journal of Experimental Psychology: Learning, Memory and Cognition. Http://www.dailymail.co.uk/sciencetech/article-2162606/People-trained-forget-bad-memories-potential-breakthrough-emotional-disorders.html#ixzz2USqbrFM2

In one of my posts, https://tersiaburger.com/2013/05/25/most-influential-blogger-award/, I wrote that I would like to meet Nelson Mandela. A blogger friend commented on it and it triggered something in my mind. I HAVE met Nelson Mandela. I should have articulated it differently – I should have said I would like to talk to him.

It was a horrible time of our lives when Vic started going to the Pain Clinic. Her pain was out of control – or so I thought. It was actually just “preparation school” for what was yet to come…. I was mortified that she was on 600 mg of morphine, a week…. When Hospice accepted Vic onto the program, she was already on 600mg of morphine, twice per day.

I digress.

Vic needed to consult with an anaesthetist, specialising in pain control, on a monthly basis to examined, her pain evaluated and to get a new prescription for the morphine. It was one of those dreadful experimental phases of her life. But, bad things lead to great things…

The Pain Clinic was in an élite part of our city. It was a schlep to get to it and took hours out of a day.

This particular day Vic was in terrible pain, and it was difficult moving her from the car into the wheelchair. Her beautiful eyes were dark from pain and filled with tears. I remember thinking “How tiny and sad she looks”…

We stood at the elevator for what felt like a lifetime. All I wanted to do was get Vic into the consulting rooms so she could get an injection for pain… I was getting quite impatient with the delay of the lift when it started moving down. I noticed quite a build-up of people on the outer periphery but did not pay too much attention to it.

The door opened. Two tall men, wearing sunglasses, walked out. There was an audible gasp in the hall. The greatest statesman in the world, Nelson Rolihlahla Mandela, stood behind them. He was so tall!

In total awe I moved Vic’s wheelchair back clearing the way for this amazing man.

He walked out of the lift and came towards us. He stood in front of Vic, stuck out his hand, and said “Hello my dear. How are you?”

“I am fine thank you Mr President,” Vic said

“I hope you feel better soon,” he said in his beautiful, raspy yet gentle voice.

He greeted me, still holding her hand. I will never forget his gentle eyes. He had an aura of greatness. Two great warriors were locked in a moment of kinship.

“Goodbye” he said and walked away.

Death is however closing in on this amazing man. This year, by the Grace of God, our country and the rest of the world will celebrate this great man’s 95^th birthday. Given his poor health and advanced age, it is to be expected that he will die not too far in the future. It will be a sad day for South Africa and the rest of the world.

I know that he will meet Vic again in Heaven. I believe that the two brave souls will recognise one another. This time there will be enough time for them to linger and chat. The people they are- it will be about their loved ones, the grace they experienced in their lives… I know they will not discuss the hardship, pain or suffering.

Two incredible people… Nelson Rohihlahla Mandela and Vicky Bruce. Hero’s of many… two people who have made a difference, lead by example.

"Oh Mr President, my mom is your biggest fan ever..." — “Oh Mr President, my mom is your biggest fan ever…”

Caregiver Isolation

It happened without warning…

In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.

Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.

We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.

Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….

We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…

My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…

One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”

“Of course I love my family! Why are you asking such a question?” I replied

“Because you are never home….”

I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.

So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!

In 2009 my Dad came to live with us. He suffered from Alzheimer’s.

Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.

I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.

I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.

It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.

My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.

I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.

Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.

My life centred round my sick child and family.

Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.

How amazing is this?

If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….

“Love you Mommy…”

“Love you Baby Girl”

“Never Alone”

We played “Never Alone” as we carried Vic out of the church to the hearse…”Never Alone” because our love will always enfold you. We love you so much!!

Lady Antebellum – Never Alone Lyrics

“Never Alone” http://www.youtube.com/watch?v=lnNK4Alwbsw

May the angels protect you

Trouble neglect you
And heaven accept you when its time to go home
May you always have plenty
The glass never empty
Know in your belly
You’re never alone

May your tears come from laughing
You find friends worth having
With every year passing
They mean more than gold
May you win but stay humble,
Smile more than grumble
And know when you stumble
You’re never alone

Chorus: Never alone
Never alone
I’ll be in every beat of your heart
When you face the unknown
Wherever you fly
This isn’t goodbye
My love will follow you stay with you
Baby you’re never alone

well
I have to be honest
As much as I want it
I’m not gonna promise that the cold winds won’t blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

May the angels protect you
Trouble neglect you
And heaven accept you when its time to go home
And when hard times have found you
And your fears surround you
Wrap my love around you
You’re never alone

Chorus

My love will follow you stay with you
Baby you’re never alone

Jon-Daniel writes…I wish

Jon-Daniel is going through a rough time. He posted this on his Blackberry Status.

I wish there were visiting hours in Heaven. Miss you my little angel. We all do!

I WANT MY CHILD BACK!!!

I WANT MY CHILD BACK!!!.

I WANT MY CHILD BACK!!!

Yesterday morning I teared up – again. Danie asked “And now? What’s wrong?”

“Just missing Vic” I said

“Shame” he said with sadness in his voice. “I miss her too”

We spoke about how my grief had changed over the past four months. Today it is exactly four months since my precious child died. I keep using the words “death and died” and not the gentler “passed”… I do that because death is harsh. My child DIED, she is DEAD. My pain is as real as it was 4 months ago. My grief is however no longer as transparent as it was to the world.

Four months ago when Vic died my body physically hurt. My heart was physically aching. The pain was new. Now my grief is in me, part of me as if it is a limb or organ… My grief is hidden from the world. If I did not tell you, you would never know.

To the world – I seem to have adjusted to the loss of my child. I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…

Earlier tonight I read this on Facebook –https://www.facebook.com/TheGrievingParent

“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sun rises every morning.

Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”

We just keep on living with it and do the best we are able to do.”

I miss Vic more today than I did four months ago. I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free. It is becoming more difficult to see the positive side of Vic’s death. My mind is blocking out the horror of her suffering! I am remembering the good times only.

I hear you say “It is good” No, It is not good! If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.

My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me. She said Vic was crying and saying “Mommy I am so sore. I can’t do this anymore” Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting?????? On the 13th of November I posted “Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!” https://tersiaburger.com/2012/11/13/signposts-for-dying/

I want my child back with me. I want to hold her, tell her I love her. I want to hear her footsteps in the passage; I want to hear her voice…

I WANT MY CHILD BACK!

My 1st Mothers Day

Today, the 12^th of May 2013, is my first Mother’s Day in 38 years without my precious Vicky.

I attended my sister’s birthday party. I smiled and participated in her birthday and Mother’s Day celebrations. I know that worldwide millions of other mothers joined me today in quietly reflecting on our grief and sadness.

I know that the family and especially Danie were worried about how I will handle Mother’s Day. On Friday morning Danie asked whether he could get me flowers for Mother’s Day as he has done for the past 22 years. I declined.

I know that even though today is dedicated to mothers, entire families will be affected. Fathers too experience grief and yet the world seems to forget about them. Maybe it is because men are so stoic in their grief.

I saw this on a Facebook site – Grieving Mothers, and it really shook me…

I know that Danie is grieving for Vic. He is grieving with the boys and me. He is grieving for us. I know he fears that he lost part of me….

Today I share Mother’s Day with my fellow club members – the grieving mothers of the world. Tonight I will reread 30 odd Mother’s Day Cards and drawings that I received from my precious child over the years. I will cry on my own. I will burn candles for my child and for the moms of Henry, Tommy, Raymond, Phillip, Klysta,Jason, Alex, Matthew, Caitlyn, Morgan, “B”, Jason David, James, Jesse, Steven, Graham, … I will weep for my beautiful grandsons who did not have a mommy to wish a “Happy Mother’s Day” today… I will mourn my Mom – a woman of great strength, beauty and love.

Yet I am filled with gratitude and love for my stepchildren and grandchildren; the messages of love and support that started coming through from friends, family, Vic’s friends and even the boys friends mothers…

My phone started pinging early this morning. I ignored the pings. Danie sneaked into my TV lounge where I was sleeping on the sofa. I closed my eyes and pretended to be asleep. Then my phone rang, and I could not ignore the call… It was Lee-Ann. She said “HI T, I am just phoning to tell you I love you…” I burst into hysterical tears. Poor lee!

Danie brought me letters that the boys had written me… Jared wrote “Dear Oumie, I know we don’t have a reason to celebrate mothers day, other than to remember Mom and all she meant to us. So I have decided that we are changing the name to Oumie’s Day. We got you a sign that says “HOME” . That is because this is OUR home, and it always will be.”

Jon-Daniel wrote: “Happy Mothers Day Oumie” It may not be the happiest time of the year for you. Although your very own child is up in Heaven, you have GRANDchildren. Nothing will ever fill the gap – Mommy’s gap! This is the first year you will be celebrating Mother’s Day without the One who made you a Mommy. It is difficult,you must know I am always here. After all you are our grandmother. The word says it all, “grand” – great, awesome, amazing. And “Mother” – well, no need to describe that. Everybody knows how special a mommy is.”

Henk, second eldest grandson wrote “Ouma, it was a difficult year but you are always here to help and love. You always have a smile no matter how bad things are for you. We are grateful for it, and that is why we love you so much and always will do.”

Yesterday little Simone put her arms around me and said “Thank you for being my Ouma. Thank you for spoiling us. I love you very much. My words are your Mothers Day present.”

I have had beautiful messages of love and caring from all my stepchildren. It has truly filled me with joy.

I also read a card that Vic gave me in 2000 “We have all changed a lot through the years Mommy but one thing will never change – and that is the love between us. It is a special bond that keeps us close no matter where we are. I love you more than words can say.”

I know that today my precious child and Mom are celebrating Mother’s Day together. I am grateful for all the years we were able to celebrate together. I love you and honour you both today. Two amazing mommy’s…

Thank you God that today is over!!!!!

A Mother’s Love Quotes

In honour of Mother’s Day I would like to share some of my favorite Mother quotes.

Pilgrim Peace “Pure love is a willingness to give without a thought of receiving anything in return.”

No language can express the power, and beauty, and heroism, and majesty of a MOTHER’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin.

Vic and her boys 1999

A MOTHER is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.~Washington Irving.

A man loves his sweetheart the most, his wife the best, but his mother the longest. — Irish Proverb.

The natural state of motherhood is unselfishness. When you become a mother, you are no longer the center of your own universe. You relinquish that position to your children. Jessica Lange.

MOTHER’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path. Agatha Christie.

All women become like their mothers. That is their tragedy. No man does. That’s his. –Oscar Wilde,The Importance of Being Earnest

When your mother asks, “Do you want a piece of advice?” it is a mere formality. It doesn’t matter if you answer yes or no. You’re going to get it anyway. –Erma Bombeck

Motherhood is neither a duty nor a privilege, but simply the way that humanity can satisfy the desire for physical immortality and triumph over the fear of death. –Rebecca West

A mother’s love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking. -Helen Rice

A mother’s arms are more comforting than anyone else’s. –Diana, Princess of Wales

Vic and I in healthier days

The hand that rocks the cradle Is the hand that rules the world. -W. R. Wallace

Mother’s Love for Her Very Sick Child

I know that I would do all things for you.

My spirit would always take care of you.

And when I die and leave this world behind.

You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.

You have always remained right here in my heart.

I will forever whisper in the wind

Unconditional love that’ll forever stay within.

If only I could go wherever you go

So I could do things I need to do for you.

Since I can’t, the best sacrifice I can give

is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart

‘Cause I know that you don’t know where to start.

I’m transferring all the pain inside of you

Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear

This greatest pain to let you go, I swear.

Know in your heart that my love will forever stay

Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you

Of all the pain and tears inside of you.

No need to worry for all your pain will be gone.

It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.

If you only knew how I fought for you each night.

Just remember that there are signs everywhere.

So look around and acknowledge that they are there.

God said to me that love will always prevail.

And each day there is a tale for you to tell.

If you could already see the signs before your eyes.

Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two

When you least expect it, it is said to you.

It may also be the people that you have met.

Places, names, or things that you kept.

God told me to tell all these things to you

So happiness would set in and peacefulness, too.

I’m always here, and I’ll always love you.

I never wanted you to be in pain. It’s OK for you to go.

Marlene, BFF – Rest in Peace my beautiful friend!

Today, two years ago my best friend died. On the one hand it feels as if a life time has passed and yet it is as if it was yesterday…

There are only a handful of people who come into your world, and touch your life in a dramatic fashion. Some of the people are just flickers of light during a long life, while others are a consistent glow for years. For me, Marlene was my consistent glow.

I met Marlene 27 years ago. We immediately started chatting and never stopped! For 25 years Marlene and I were inseparable. We would be in one another’s company for hours and within 10 minutes of leaving one another, one of us would remember something else that we forgot to mention and call the other. Our first words would be “Hi Poepies, I forgot to tell you…….. “

Marlene was one of the most beautiful people I have ever known. Nobody looked good next to her. At most we merely enhanced her beauty… Marlene was totally unaware of the effect her beauty had on people. She was very, very hard on herself. I miss that beautiful laughter of hers – nobody could laugh (or cry) like my friend.

Marlene was a human SPCA. It is ironic that her heart, that was so big, eventually let her down.

I was privileged to deliver her eulogy. At her memorial service I saw a sea of faces. Old friends, new friends, school friends, work colleagues, family. Marlene had compassion that was scary… always wanting to help – to do… The word “Love” is a verb; not an adjective…Marlene knew that. She lived that knowledge.

She always made her friends and loved ones designer gifts.

Marlene and I agreed many years ago that we would “make” gifts…I thought we would bake biscuits or something… My birthday was the first “homemade” gift event…my dear friend made me a porcelain doll with photos of Vic, the boys and Danie in a necklace…. How could I ever compete with that???

Marlene’s personal best friend had to be the phone…She LOVED speaking on her cell regardless of whether she was driving or not…she spoke on the phone every spare minute she had. Marlene and Sonja spoke from the crack of dawn… I am a late starter, but we spoke until late at night. On the Tuesday of her death I spoke to her at 10:45am – I started phoning her just after 3pm because I was in Marlene chat withdrawal…Needless to say I think Marlene was already chatting to angel Gabriel and boy did she have a lot that she wanted to tell him…

Christmas was Marlene’s favourite time of the year. For decades our families celebrated Christmas together. Her home looked like SANTALAND.. Marlene was an amazing cook. She had a standing rule – everyone had to have two helpings of food to qualify for dessert! She was an amazing hostess.

Marlene helping me "get married" — Marlene helping me “get married”

Marlene had a relationship with God that was a very personal relationship. I don’t know anyone who worked so hard at herself – Marlene strove for perfection…The day she died Marlene was at peace with her God. Marlene is exactly where she has wanted to be for so many years – at the feet of her Heavenly Father.

Marlene was so happy the last couple of weeks of her life – the business had picked up, she had forged beautiful friendships with some of her clients and that was a source of great joy to her; Marlene was at peace in her friendships and was on the brink of a new life with an old friend.

The perfect hostess, the life and soul of a party!

Marlena, I love and miss you. I still feel lost without you. Thank you for a lifetime of chats, unconditional love, all Vic’s school concerts you sat through. Thank you for your loving support with Vic over the years; the times you kept me company when Vic was in hospital. Thank you for “tolerating” my busy house. I KNOW my house drove you crazy with all the grandchildren. Thank you for allowing me to believe that I made better pancakes and fudge than you did…I still don’t trust those statements, but I will give you the benefit of the doubt!

Vic's Kitchen Tea... — Vic’s Kitchen Tea…

My dearest friend, I hope you are resting at the feet of your Heavenly Father; I hope that you are experiencing the peace that you craved on earth. I hope you and Vic have organized a wonderful anniversary party in Heaven celebrating the Ultimate Event in your life.

Thank you for being here when Vic passed. She told me before she lapsed into a coma that her Gramps and you were in her room; that you were there to guide her on her final journey…

Marlene and Vic at Marlene's 50th birthday Party — Marlene and Vic at Marlene’s 50th birthday Party

I am selfish when I say “I wish you were here”. I miss you little sister and best friend!

I am the last mother…

I come from a long line of exceptional mothers.

My Mom died 15 years and 11 months ago. She was tiny and petite. I remember my school friends telling me that my Mom reminded them of a fairy princess. My Mom dressed beautifully, had perfectly manicured nails and hair…. She taught us the finer things in life.

My Mom always worked…she was bright and diligent in her profession as a bookkeeper. She was proud to be a career girl. Mom knitted beautifully and made glorious tapestries!

The surprising thing is that we did not ever feel deprived because Mom worked. I was proud of my mom. As a family, we went on wonderful holidays every single year of our childhoods. We were always the well-dressed kids on the block…We got new bicycles, and we had a beautiful home.

As a child, I thought we were rich. Of course, I knew that many of my parent’s friends lived in seriously nice homes, but somehow I never thought those people were wealthier than we were. Today I realize that I grew up in a middle-class home. As a child, I felt protected and RICH! How amazing is that?

My mother was a remarkable lady. She brought us up to be compassionate, honest people; to never let the sun set on an argument; to love unconditionally, to protect our own… We learnt from her strength, her respect for others, her courage, faithfulness and her love for God. Mom was around for the happy and sad times.

“As mothers and daughters, we are connected with one another. My mother is the bones of my spine, keeping me straight and true. She is my blood, making sure it runs rich and strong. She is the beating of my heart. I cannot now imagine a life without her.”
― Kristin Hannah, Summer Island http://denacronholm.com/

My Mom died after she developed septicaemia post-operatively. It was two agonizing weeks! We sat next to her bed willing her to fight, get well…. To die…

When my Mom died I thought my life was over. The grief was overwhelming. It was my first “real” death. My gran had passed many years ago, but that was my mom’s grief… I was young, ambitious and climbing the corporate ladder. My life went on. I remember my Mom crying at silly times because she was missing her mom. I remember thinking “surely it can’t be that bad? Old people die…”

After my mom died I read these words, “A daughter without her mother is a woman broken. It is a loss that turns to arthritis and settles deep into her bones. ” ― Kristin Hannah, Summer Island. My mom grieved for her mom until the day she died.

I must add that my father was an amazing gentleman. He supported my mom on every level. He treated her like a queen and tolerated no less from us children. I adored my dad! But today’s post is about my mom and motherhood.

I only understood my mom’s love for us after I gave birth to Vic. It was an all-consuming love. I held my tiny baby girl in my arms and knew that she needed me for every one of her needs; she could not survive without me… My mom and I were so close after Vic’s birth. We shared a selfless love that only mothers can understand. As mothers, our children come first; nothing is more important than our child’s comfort, happiness and safety.

“Womanhood is a wonderful thing. In womankind we find the mothers of the race. There is no man so great, nor none sunk so low, but once he lay a helpless, innocent babe in a woman’s arms and was dependent on her love and care for his existence. It is woman who rocks the cradle of the world and holds the first affections of mankind. She possesses a power beyond that of a king on his throne.
…Womanhood stands for all that is pure and clean and noble. She who does not make the world better for having lived in it has failed to be all that a woman should be.”
― Mabel Hale, Beautiful Girlhood: A Timeless Guide for Christian Adolescence

I know there are mothers out there that really suck… I know because I have been told by friends that they were never protected or defended by their moms. I am so sad for people who do not have a good relationship with their mothers. I was blessed with an amazing mother and that enabled me to be a good mother to my child. My child was an amazing mother to her sons. She loved her boys with every fibre in her body. She suffered excruciating pain and indignity to stay alive… Vic could have given up much earlier in her life. She fought to live right until the end…why??? It is easy – to bring up her beloved boys herself!

I am so proud of the mother Vic was. She packed a lifetime of parenting into the little time that she had with her boys. Jon-Daniel’s (14 years) BBM message this morning read “I really do miss you Mommy. I miss the laughs we had and the time we spent together, and I miss talking to you. Love you Mommy.”

A moment in the sun in the Hospital courtyard

The boys are level-headed, clean-living boys. They have taken their mother’s words to heart “I am your mother not your excuse”. Academically they are doing well. Emotionally they are coping. They are beautiful boys and truly do Vic’s memory honour.

I am the last mother alive…there will be no next generation mother to carry forward this miracle of motherhood. The boys may become fathers, but I am the last of a long line of great mothers.

I will think of it on Sunday when millions celebrate Mother’s Day all over the world.

“The pain passes, but the beauty remains”.

I have flu. I get ill once in 5 years and I am a ninny. I do not handle pain and discomfort well… I whinge, moan and groan until I am better…

This time I have embraced my flu. I can stay in bed and there is no pressure for me to get up…. I can just lie in bed with my eyes closed and it is okay! For the first time since my precious child died I don’t have to communicate, talk or pretend. I can just be sick!!!! I have spent four days in bed not having to talk, smile or pretend….

I am sick to the core of my soul – not only from the flu but from heartbreak. I was able to feel the loneliness and emptiness that permeates my life since Vic died. For four days I have not had to smile or live – I could lie in bed and hope to die.

There are days that I really do cope. There are days that I am able to smile and laugh. Most of the time I live a lie…

I have made peace with the fact that my precious child’s suffering is over. I know that never again will she fracture vertebrae from vomiting, scream from pain, whimper because she does not have the strength to scream… But all I have done is learnt to accept that Vic was amputated from my life. I still have to learn to live without the amputated part of my body; the pain of the missing part of me continues to taunt me…

I miss my child so much! I want to love and hold her. I wish I could have protected her from the ravages of Osteogenesis Imperfecta and doctor error! No, I don’t have guilt…I did everything I possibly could for my baby girl. I just desperately miss her! I miss her company.

I am hoping that the pain will pass…I do remember the beauty of my precious Vic all the time. The wonderful mother and daughter that she was; kind and gentle; incapable of malice…Her beauty will remain with us for ever.

Tomorrow I will get out of bed and carry on living.

Best Moment Award

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.

BEST MOMENT AWARD

My Acceptance:

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.

First person to thank is Shaun – http://prayingforoneday.wordpress.com/about-2/ Recently Shaun wrote me an email and said the following

“The 1^st blog I read of yours was the one with you holding Vic https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/ Dawn and I cried and cuddled for about an hour, over time whenever you speak to me Dawn is asking “How is she” and “What is she saying” and caring…

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 21^st 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?
1. Gratitude. Thank the people who helped you along the way.
2. Humour-Keep us entertained and smiling.
3. Inspiration – Make your story touch our lives.
4. Get an idea from the great acceptance speech, compiled in MomentMatters.com/speech
5. 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…

In Memory of Vicky – dmchale

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.

In Memory of Vicky

by dmchale

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

Vicky and I are
touched by one star.

Together We Walk the Stepping Stones – by Barb Williams

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.

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My love will follow you stay with you Baby you’re never alone

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My love will follow you stay with you
Baby you’re never alone