Vic succeeded at life…


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

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Vic in 2007

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Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

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… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

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…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

Vic’s monuments…

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

 

Vic loving World Cup 2010

……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

 

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

Vic’s 3rd birthday in Heaven


Monday, the 31st of August 2015 was Vic’s third birthday in Heaven.

It was difficult….

It was the most difficult birthday to date…..

From the second I opened my eyes waves of grief crashed over me. My only conscious thought was to breathe. This too would pass.

Minutes before the clock struck 12 I thought “Now there are merely minutes left of this birthday. Tomorrow the mask is back in position. The world will see what they want to see.”

“I will indulge and consciously soak in this heartbreak for another couple of minutes. I remember the way Vic embraced her birthday. She loved every second of the day…. But now this day is mine – a day of reflection, a day of gratefulness, a day to celebrate the miracle of my daughter’s life and to mourn her death.”

From the first second I learnt I was pregnant I starting thinking, planning and fantasizing about my child’s life. I imagined a sport star; a brilliant academic… a family of my own exactly like my family. I dreamt of being a mother like my mom was. In my mind I created a beautiful world for my little baby.

Then my beautiful little baby daughter was diagnosed with Osteogenesis Imperfecta. My world crashed into a million pieces.
“Your daughter will not live beyond the age of nine…”

I thought I would lose my mind. I started spending every spare minute of my life researching Osteogenesis Imperfecta…finding a doctor that would help and cure my child. Thirty seven years after Vic’s diagnosis Vic finally died.
Hundreds of hours in theater; years in hospital, more years filled with pain, indignity and suffering has passed.

The beautiful world I dreamt of for my child was just that….. A dream…..a nightmare.

The death of a child is a pain so deep that it cannot be expressed in words.

The death of a child is life changing.

The loss of a child is a loss that the parent, no matter how much time goes by, will continue to mourn for their entire life. No matter how much support there is or isn’t, it is a journey a parent travels alone.

In the first year I was scared. I felt the madness gnawing on my soul. Today, I am better. I can breathe.

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But, I will NEVER stop grieving for my beautiful angel child.

486 days…


486 days; 1 year, 4 months; 69 weeks….

Oh dear God, will this pain never stop? Will my heart ever heal? Will I ever be able to look at a photograph without tears welling up in my eyes? No matter where I am or who I am with – I miss my precious Angel Child.

I know your pain is over. Remember the night you crawled into bed with me and I told you that I looked forward to your pain being over? Did you know that night how many tears I would shed for you? Did you know that my life would change forever?

Yes, I know you did. Your words echo through my mind…”Mommy, I am so worried about you. How will you cope when I am gone?”

My stock standard reply was “I will cope baby. I will remember your pain and be glad that it is over”. How stupid of me.

As time goes by I forget how sick you were my precious little one.

Then I look through my photos. I see your pain. I see death in your beautiful eyes.

You knew how hard it would be. In your infinite wisdom you tried to prepare me. You tried to prepare the boys… Sweetie, nobody or nothing in the world could have prepared me for the pain, the loneliness, the void…

Sometimes I wonder how many days it will be until we meet again. I pray it is soon. This is just too hard.

How to die


People live as they die.

If they constantly worried about their health and each and every little pain and symptom in life, they will worry until the end. If people were unconcerned about their health in life they will be slack in seeking help and treatment. If they were bad-tempered and impatient in life, they will die impatient and bad-tempered. Gentle people die gentle deaths.  (I am excluding violent deaths from the statement above.)

In Hospice I am amazed to see with how much stoic dignity some people die. Many of my acquaintances have died in the past 14 months under our care. People that I knew were dignified, in life, died peaceful dignified deaths. Up to the end they will say “please” and “thank-you.” I have witnessed, and experienced people hold onto life with every fibre in their bodies (as did Vic). I have also seen people “decide” to die. We see it in their eyes. Death is a decision.

Dying is not a two-minute thing… some people die slowly over many days. In these slow, lingering days it is our job to keep the dying pain and symptom free. Comfortable surrounded by their loved ones.

In a perfect world people die at Hospices surrounded by their loved ones – in theory that works, only in theory.

Many people are dropped off at the In-Patient-Unit and as soon as it is “decent” the family will leave to rest… Some don’t return. Some do after many phone calls updating them of the gravity of their loved ones condition. Some will pop in for the final moments. Some don’t. Some stay. They enfold their loved one with compassion and love, complementing us in our job. Some people die with their loved ones united in prayer; others die with the family singing gentle songs. Some die telling their loved ones to f… off…..

I have come to the conclusion that people without a spiritual and/or religious base die bad deaths. They swear at their families and the world until their final day… They worry about their new cars; a business deal – some have alcohol sneaked into the IPU. They deliberately remove their diapers and urinate on the sheets; one even defecated on his sheets defiantly grinning at the staff. A final “f— you” act. No, he was fully conscious of his actions and the effect that it has on those caring for him. He was dying from cancer not Alzheimer’s.

Seeing someone die is quite amazing. It is a beautiful experience witnessing the soul leave the body. There can be no doubt that there is life hereafter.

A young woman died in the IPU. She lingered for 8 days. Finally only her mom was left next to her bed gently whispering words of love and encouragement. After she died we prepared her cancer ravished little body for collection by the undertakers. When they arrived I escorted them to her room. She lay there with an angelic smile on her face. I called her mom and said “you have to see this…” When her mom had left her side it was just a tiny little bag of bones that lay there. When her mom next saw her she had this peaceful, angelic smile on her face. Truly a message for heaven for her grief-stricken mother.

I hope that I will be stoic and brave in death. That fear of the “Great Beyond” will not overwhelm me. I hope that I will be dignified and brave in death. I am such a ninny in life.

“Promise me Mommy…..” 13.1.2013


ImageIt has been a long day.  Vic is in a drug induced sleep.  She looks so peaceful.  Vic is not anesthetized – she wakes when she is thirsty or in pain.  She has only urinated once in 24 hours.  Her end is near.

Vic is looking angelically beautiful.  Her skin is blemish free and almost transparent.  Her hair seems to have taken on a life of its own.  Her little hands look skeleton like.  Her body is wasting away and yet she remains as beautiful as ever!

I will not sleep tonight.  Many years ago I promised Vic that she would not die alone or in a hospital.  The time is near and I must honour this promise.

Earlier tonight she woke up and I wasn’t in her room.  She had a panic attack… Danie found her trying to walk down the passage.  She was holding onto the wall and tears were running down her cheeks.  “Mommy, I am scared…”

Something has started bleeding again.  Vic vomited and there are signs of old and new blood again.  “Look Mommy, my mouth is bleeding…” she said.

Vic is deadly pale and her body has involuntary “jerking” movements.   She is decidedly unstable.

“Mommy, you have to get me to the awards evening.  I don’t care how.  Promise me Mommy!!!”  She sobbed tonight.  Tomorrow I will speak to the school and make the arrangements.  It is not a wheelchair friendly school and Vic could never sit through a two-hour ceremony.  We will find a way.

We had a strangely “normal” day today.  Jared brought his gaming computer down from the study into my TV lounge.  It is something I don’t encourage because there are wires and cords all over and I HATE the untidiness of it.  Today I welcomed it.  We needed to be close to one another.  I swam twice and we ate spaghetti bolognaise.

The boys have fear in their eyes.  I have fear in my heart.

Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

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Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

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Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

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It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

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I hate my life.  I wish I were dead.

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks.  The patients have controlled pain and symptoms.  Many caregivers are also looking for a dumping ground.

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

I thank God that we are able to make a difference!

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell

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To God


“To God, I hope you look after Auntie Vicky. She is very sick. Love Chloe Alexa Burger” My precious 5 year old UK granddaughter wrote this…her mommy found it in her school satchel last week.

To God

Dear God, hear the words of a five-year old.

What am I doing?


This is one of the most heart wrenching posts I have read in a long time.  I read a lot of blogs written by grieving mothers.  Why did this post affect me to this extent?   I don’t know.  Maybe because this mother’s grief feels as real as my own grief.  Maybe it is because I am doing the same.  Writing and desperately trying to keep my Vic alive…hugs and tears Gatito.

My Bright Shining Star

What am I doing Kaitlyn? What am I trying to do by my endless blogs about you, the photo albums, the posts on Facebook, the printed out version of my blog, the printed out comments by your friends after you died on your Facebook, in my private messages and by email, the posts I made on Student Doctor Network warning them of what could so easily happen if they don’t heed the warning within them of depression, for posting about you In the off topic sections of forums I belong to that are about motorcycles, RVing, and cats. Posting on suicide survivor forums. Posting every video and song that remotely has to do with what you were and I am going through. Making DVD slides of you. Going through all you music CDs, going through all your recent things, old things, things I put up long ago, things that are…

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US legal system fails it’s citizens


Raymond's brave mom - Shirley
Raymond’s brave mom – Shirley

A dear blogger friend of mine, Shirley, has had to come to terms with the death of her beloved son Raymond.  Independant toxicology reports clearly show high levels of barium and selenium – both lethal chemicals, in his system.  Yet the legal system has failed Raymond and family.

His widow was jailed for a couple of days for falsifying his will.  His murderers walk free…

I am an avid follower of Law and Order, Special Investigation Unit, CSI, NCIS etc…. Having followed Shirley’s blog it is clear that the amazing forensic work in these TV shows are as futuristic and far fetched as a Star Wars movie.

I am reblogging one of Shirley’s latest posts.  Please pop into her blog and support this brave mother!

Shirley, you are an example and inspiration to many!  I wish I could do something to help you!

Remember “The dead cannot cry out for help – it is the responsibility of the living to do so for them.”

 Raymond Marc Zachry
March 5, 1960 – September 25, 2007

We will never forget, we will never give up
until we have solved the mystery of the
source for the two lethal chemicals that
were listed in Ray’s toxicology during
autopsy.

Barium and selenium are both lethal
according to CDC reports

Death investigation industry gone wild…  http://justiceforraymond.wordpress.com/2013/09/04/death-investigation-industry-gone-wild/

 

At the web site http://denied-justice.com is posted the laboratory toxicology report from the autopsy that was furnished to my physician and another that was furnished to an attorney on my  behalf.  The  two reports are strikingly different.  However both confirm the presence of a lethal chemical in the blood sample furnished by the coroner of Montgomery CountyPennsylvania.  Both of the reports are altered, but by whom?  No one will answer these questions…one report redacted the quantity that was probably more accurate than the one that was later furnished to Coroner at her faxed request…(also posted on this web site).  What to do?

This story posted at http://pathologyblawg.com/pathology-news/lab-chemist-accused-faking-test-results-tainted-40000-drug-cases/, further documents the ailing death investigation industry where coroners have been found to steal body parts that they sell for huge profits.  Where does the money go?

Enough!

“Lab chemist accused of faking test results may have tainted 40,000 drug cases”  According to the president of the Massachusetts Association of Criminal Defense Attorneys, the:  lab analyst in question had unsupervised access to the drug safe and evidence room, and tampered with evidence bags, altered the actual weight of the drugs, did not calibrate machines correctly, and altered samples so that they would test as drugs when they were not.

Ms. Dookhan, who apparently also falsely claimed to have a Master’s degree in chemistry, had a reputation for being the most productive tech in the lab; she would routinely process more than 500 cases per month, when an average tech could only process 50-150 cases per month.

She was also a darling to prosecutors working on drug cases.  This may be because she would reportedly work on cases out of order for some prosecutors when asked, deliberately report negative tests as positive and report results for cases she never even analyzed.

While the impact this one chemist has had is incredible, the state’s public defender is worried there may be more than just one tech who have “cut corners or falsify results.”

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Where is Auntie Vicky’s skin?


Those of you that follow my blog will know that my UK grandkids are visiting. They are the cutest, brightest and busiest little girls in the world. They are a source of immense pleasure and joy in my life.

They left South Africa exactly two years ago. I cried for a week. In the two years I have seen them 5 times. In terms of international travel it is a lot but in terms of a grandmother’s heart it is not nearly enough. When they lived in South Africa we saw them at least once a week.

Osama (the eldest terrorist) is 5.5 years old. She is bright as a button and full of tricks. She told me, in confidence, that when she turns 6 she is going to marry her “boyfriend” Freddy… I tried to use the impending marriage as a bargaining tool to encourage her to help tidy up her room.

Me: “Sweetie if you want to marry Freddy you will have to learn to tidy your room. What do you think his Mommy will say if she sees your toys lying around? He won’t marry an untidy girl…”

Osama: “That’s okay Oumie. Then I will marry someone else…”

This little girl has a mind of her own. She is heartbreakingly beautiful. Her eyes sparkle with the joy of life and intelligence. She is also kind and caring (a little manipulative as well). She has me twisted around her little finger! She also has an amazing memory!

She was 3, 5 years old when they left South Africa.

She was so excited to visit South Africa and kept sayings things like “I remember your big (dining room) table; where will I sleep? In my old room?” She always throws in the odd “Do you remember….?” She remembers their South African home and her school. She remembers the sunshine. She remembers Vic.

“Oumie….why did Auntie Vicky die?” is her daily question.

Her mommy and daddy have told her that Auntie Vicky’s soul is in Heaven with “Baby” Jesus… She is happy that Auntie Vicky is no longer sick. The big question is however “Where is Auntie Vicky’s skin?”

This is a difficult question to answer honestly. If I told the little poppet that her precious Auntie Vic is lying on the antique sideboard table, in a little box with a brass plate on the lid, she would be distressed… So I sort of implied that she was buried…

“Is Auntie Vicky’s skin in a box (coffin)?” she asks

“Yes” I would say. “But remember, Auntie Vic does not need her skin anymore. She has a new skin and beautiful angel wings in Heaven.”

“Is Auntie Vicky a Zombie?” – She shivers and says “Oooohhhhhh, I am so scared of Zombies!”

“No sweetie, she is an angel.” I said

I am sharing an excellent guide to help

the young, understand something that most adults battle with! http://www.hospicenet.org/html/understand.html

Children’s understanding of Death is provided by Hospice of Southeastern Connecticut Bereavement Program. This chart is meant to be used as a guideline and not a checklist. All children develop at different rates and it is important to remember that the parents know their own child the best.

Newborn to Three Years
Child’s Perception: Infant/Toddler can sense when there is excitement, sadness, anxiety in the home; can sense when a significant person is missing, presence of new people

  1. No understanding of death
  2. Absorbs emotions of others around her/him
  3. May show signs of irritability
  4. May exhibit changes in eating, nursing patterns, crying, and in bowel and bladder movements
  5. Depends on nonverbal communications; physical care, affection, reassurances

Providing Support:

  1. Keep normal routines and structure whenever possible
  2. Be verbally and physically affectionate and reassuring
  3. Provide warm, loving caretaker when parent is not available
  4. Exhibiting healthy coping behaviors

Three to Six Years
Child’s Perception: Child thinks death is reversible; temporary, like going to sleep or when a parent goes to work; believes that people who die will come back

  1. “Magical thinking”; believes their thoughts, actions, word caused the death; or can bring deceased back; death is punishment for bad behavior
  2. Still greatly impacted by parent’s emotional state
  3. Has difficulty handling abstract concepts such as heaven
  4. Regressive behaviors; bed wetting, security blanket, thumb sucking, etc.
  5. Difficulty verbalizing therefore acts out feelings
  6. Increased aggression – more irritable, aggressive play
  7. Will ask the same questions repeatedly in efforts to begin making sense of loss
  8. Only capable of showing sadness for short periods of time
  9. Escapes into play
  10. Somatic symptoms
  11. Hungers for affection and physical contact, even from strangers
  12. Connects events that don’t belong connected
  13. May exhibit little anxiety due to belief that deceased is coming back

Providing Support:

  1. Keep normal routines and structure whenever possible
  2. Provide opportunities to play, draw
  3. Read books on death & loss with child
  4. Help to verbalize feelings and fears
  5. Help to identify feelings and reactions
  6. Be honest and tell a child if you do not have an answer
  7. Explain in specific, concrete language – not euphemisms; explain what has happened giving specific explanations about physical reality of death
  8. Gently confront magical thinking
  9. Make sure child does not feel responsible for the death
  10. Be tolerant of regressive behaviors
  11. Modelling healthy coping behaviors
  12. Avoid clichés; “At least you have another brother”, “You can always get a new pet”
  13. Use specific, concrete words – not euphemisms; Avoid “Mommy has gone to sleep”, “God has taken Grandpa”

Six to Nine Years
Child’s Perception: Child begins to understand the finality of death; some do and some may not.

  1. Sees death as a taker or spirit that comes and gets you
  2. Fear that death is contagious and other loved ones will “catch it” and die too
  3. Fascinated with issues of mutilation; very curious about what body looks like
  4. Connects death with violence and may ask, “Who killed him?”
  5. 3 categories of people. who die: Elderly, handicapped, klutzes
  6. Asks concrete questions
  7. Guilt – blames self for death
  8. May worry how the deceased can eat, breathe, etc.
  9. Continues to have difficulty expressing feelings verbally
  10. Increased aggression
  11. Defends against feeling helpless
  12. Somatic symptoms
  13. School phobia (especially if single parent)
  14. Continues to have difficulty comprehending abstractions such as heaven, spirituality

Providing Support:

  1. Talk with child
  2. Ask questions
  3. Make sure child’ does not feel responsible in any way
  4. Identify specific fears
  5. Provide opportunity for play, drawing, art
  6. Normalize feelings & fears
  7. Address distortions & perceptions
  8. Be honest and tell a child if you do not have an answer
  9. Help to cope with impulse control
  10. Help them share bad dreams
  11. Help them with positive memories of the deceased
  12. Model healthy coping behaviors
  13. Avoid clichés; “Don’t worry, things will be O.K.”, “You’re such a strong boy/girl”
  14. Use specific, concrete words – not euphemisms; Avoid “Grandma went to sleep and is now in heaven”, “Grandma was very sick and the sickness made her die”

Nine to Thirteen Years
Child’s Perception: Child’s understanding is nearer to adult understanding of death; more aware of finality of death and impact the death has on them

  1. Concerned with how their world will change; with the loss of the relationship, “Who will go with me to the father-daughter banquet?”
  2. Questions have stopped
  3. Fragile independence
  4. Reluctant to open up
  5. Delayed reactions – at first seems as if nothing has happened, then grief reaction May show strong degree of affect
  6. Beginning to develop an interest in rituals (spiritual effects of life)
  7. Disrupted relationships with peers
  8. Increased anger, guilt
  9. Somatic symptoms
  10. School phobia
  11. Self-conscious about their fears (of own death, remaining parents)

Providing Support:

  1. Encourage discussion of their concerns
  2. Provide & encourage expressive experiences such as writing or drawing
  3. Address impulse toward acting out and allow opportunity to identify their feelings
  4. Allow for regressive behaviors
  5. Be honest and tell a child when you do not have an answer
  6. Gently relieve child from attempts to take over adult responsibilities
  7. Model healthy coping behaviors
  8. Avoid clichés; Avoid “You must be strong so I don’t have to worry about you”, “Big boys don’t cry”

Thirteen to Eighteen Years
Adolescent’s Perception: Adolescent has adult understanding about death

  1. Death is viewed as an interruption. Death is an enemy
  2. Bodily changes emphasize growth and life. Death is a contrast
  3. Increased vulnerability due to many other changes and losses simultaneously occurring
  4. A sense of future becomes part of their psychology
  5. Increased risk taking in effort to reduce anxiety or to defy fate
  6. May intellectualize or romanticize death
  7. May act indifferent to death of someone close as a protection against feelings
  8. May show full range of affect or almost no affect
  9. Wants to grieve with her/his peers not adults
  10. May need permission to grieve
  11. Suicidal thoughts
  12. Represses sadness, feels anger, depression
  13. Escapes; drives fast, uses drugs or alcohol sexually acts out
  14. Denial – tries not to think about it, doesn’t want to talk about it
  15. Difficulty with long term plans
  16. Somatic symptoms
  17. Questions religious/spiritual beliefs

Providing Support:

  1. Don’t assume they can handle themselves and their problems without help, support
  2. Be available, but don’t push
  3. Help them find peers who will support their feelings
  4. Or find other trusted adults
  5. Give permission for regression
  6. Be honest and say when you do not have an answer
  7. Assist in relieving adolescent of burden of adult responsibilities
  8. Help impulse control toward reckless behavior
  9. De-romanticize death
  10. Discuss feelings of helplessness
  11. Model healthy coping behaviors
  12. Avoid clichés; “You’ve got to be strong to help your mother”; “You seem to be taking this so well”, “Now you’re the man of the house.”

200 days


Today we lit candles in remembrance of Vic dying 200 days ago. My mind keeps crying “No! It is not true!” The void in my heart and life shrieks “Yes, it is!”

I met with a new Hospice patient today. She is in her early 60’s, petite, bright, friendly, positive and so unbelievably brave! She is also in denial and dying.

“I believe I will wake up one morning and I will be healed!” she said

Her skin has discoloured from the chemo, her eyes are turmeric yellow and her belly is very extended. Her feet and legs are dreadfully swollen. I believe that she is close to death. Yet this incredible woman is determined to go to the office from the 12th of August until the 27th of August as her replacement is on leave then…. I doubt that she will live that long!

I sat there and it was déjà vu… It was as if I was listening to Vic planning next week, next month and next year…. I heard her husband encouraging her to write letters, finalising her will. I shared with them how Vic had labeled every piece of her jewellery, given strict instructions on what had to happen to her possessions, planned her own funeral…

“Am I correct when I say that I hear you saying your child died?” the patient asked.

“Yes” I said. “200 days ago today”

“I cannot believe that you can talk about your child’s death! You are smiling and look so normal” she said. “When our son died we could not talk about it. We cried all the time…”

“Death is not the enemy. I prayed for my child to die…” I said.

“It is okay to cry” they said

“I cry every day” I said

The whimper


I am in such a bad place.  I have been trying to write a post for 4 days.  Words elude me.

Very dear friends of ours lost their son and two granddaughters on Thursday.   It is a family murder/suicide and my heart is breaking for the family.  Our friend, the father of the son who committed suicide (and murder) phoned on Wednesday night to hear how I was coping with Vic’s 6 month anniversary… On Thursday – on Vic’s 6 month anniversary I sympathised with him and his wife on their devastating loss….

I am in shock (as is the entire community) and heartbroken for our friends, his parents and the grandparents of the two beautiful girls.  I fear for the mother of the girls.  Her life is out of danger, but I cannot imagine her pain or imagine her recovery and healing…

I have been thinking about how different our grief is but I will write later.  Now I have to cry.

Reposted from http://reneejulene.com/2013/07/11/the-whimper/                                                   There is a sound that somehow I had forgotten.  I don’t know how I forgot it because it is a sound that I am all too familiar with.  It is the sound of a broken heart.  It is the sound of the leveling of the soul.  It is the sound of exhaustion.  It is the sound of anguish.  It is the noise made after there are no more tears.  Losing a child is not loud, forceful and superficial.  It is quiet, deep and profound.  It is the saddest sound of all.  It is the whimper of a mother who has lost a part of her very being, her child.

http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg
http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg

 

My funeral


http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg
http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg

I am writing this through my tears. A dear cyber friend of mine is dying from congenital heart failure. She is a wise and terribly brave person. She posted this today…

“so here it is and then i am off to sleep.  when my sister was here we started talking about cremation.  of course she is the only person in my family that i would have this discussion with.  may i add we laughed although not all would find this humorous.  when cremated how do they separate the human remains from the ashes of the container used?  if no container is used why do they charge for it?  i have looked online for the answer and didn’t find it.”

This post jerked me back to Vic’s death bed. The memory of Vic sitting in her bed with an open file on her lap was burnt into my mind…. The folder – “My Funeral”

“Mommy, these are the hymns I want for my funeral…”

“Amazing Grace” and “How great thou art” were Vic’s hymns of choice…

“Mommy, do you think I can have candles? Lots of candles?” Vic asked.

In May 2012 Vic asked whether I would deliver her eulogy… She asked me to thank Jared for taking care of her and Jon-Daniel for making her laugh.

“Remember to make a list of everyone that we need to thank Mommy. I would hate for us to leave out anyone… “

On the 2nd of January, 16 days before she died, 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; she requested that her minister be called to administer communion.

“Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”

I still feel the despair I felt then knowing that death was on the forefront of my child’s mind. I felt her fear of death; her terror of the unknown. I felt her desperate sadness and her reluctance to say goodbye… On the one hand her pain filled, little body was so diseased and weak. On the other hand,her will to live was so strong!

I was helpless. I was praying that Vic would die – that her suffering would end. I was bargaining with God to spare her. I tried negotiating with Him – my life for hers.

I still feel the madness that I felt then.

My dear friend is going through the same fears and emotions that my precious child did. She is making the same decisions. I wish I could reach out and hug her. I wish I could grab her from the claws of death.

I am thinking of you tonight my dear friend. In my thoughts you are well and safe. I wish I could spare you this journey. Lots of love and hugs.

https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/

https://tersiaburger.com/2013/04/28/seasons-and-reasons/

https://tersiaburger.com/2013/04/25/it-is-okay-to-let-go-my-angel-child/

https://tersiaburger.com/2013/01/02/sisters-by-heart/

https://tersiaburger.com/2012/12/20/i-dont-want-to-die/

http://thedrsays.org/2013/07/16/quick-question/

I am Vic’s mother!


Child-loss is a black hole of grief and sorrow in which every emotion is compressed and compounded.   It is an inescapable vortex.  

Vic was the centre of my emotional cosmos. My world revolved around my precious child. Vic was my past, my present and my future. When she died it felt as if my life ended.


For the first time in 38 years I cried. I truly cried and called to the heavens. It was as if 38 years of pent up fear, anguish and stress was released. I screamed, I sobbed, I wept… Did you know that there is a difference between weeping and sobbing? I clung to my child. I stroked her hair. I washed her little body and dressed her in her favourite pyjamas. I sprayed her favourite perfume on her.

Grief is a strange journey.

When I embarked on the Journey of Mourning it was a strange road. I had lost people I love dearly before. My mom, my dad, BFF’s, colleagues and family had died. Of course grandparents too… But I had never lost a child. This is a road I had never travelled before. I did not only lose my precious child but I also lost the person I was.

Within a millisecond I ceased to be a mother. Wait – I became a “bereaved mother.” The hope I had clung to for 36.5 years was lost! The fight in me was gone.

The second my child’s soul left her body my heart shattered into a million pieces.

The hardest thing I had to do in my life was say goodbye to my child; listening to her breathing getting weaker and weaker…. knowing that her last breath was so close.


Then I thought nothing would match my pain watching my precious baby leave our home for the last time in a plastic sheet on a gurney until I had to stand and watch the hearse drive away with my precious, precious child lying in a cold hard coffin – her destination a crematorium!

No matter how prepared I thought I was for Vic’s death – I wasn’t! People seem to think I should be grateful Vic is dead. Just as people did not want to listen to me talking about Vic’s terrible suffering they now don’t want me to talk about Vic after she died. They ask you how you are doing hoping you won’t be honest and answer…

It is almost surreal to see that the world has carried on with its business; that the heavens are unchanged; that life has continued. I look at myself and I think that people that don’t know me would never guess that my life ended 6 months ago… People pat me on the back and say “You are so strong…”

We are nearing Vic’s 6 month anniversary and I have learnt to breathe again. I have learnt to stay strong for the boys. My life will and must mirror Vic’s strength and courage. Her dream of a Hospice will continue to live on in me…Her goodness will continue to spread to the community and the world!

I raised Vic to be strong, courageous, and brave. Vic taught her sons that she is their mother not their excuse…


I am Vic’s mother – she is my reason; not my excuse!