death – Page 3 – Vic's Final Journey

We were one

I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.

So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”

In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”

When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…

My standard answer to Vic was “I will be okay baby!”

Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”

“I will be fine. I will be grateful that your suffering is over…But I promise I will!”

I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…

So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.

We spoke briefly about the boys, but Alan firmly said that today we would focus on me…

I bravely started talking without waiting to be prompted. After all, that is why I was there.

“I knew that I would miss Vic after her death but nothing could prepare me for this” I said

“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.

I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.

I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…

I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…

I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.

I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.

I saw Alan look at the clock on the wall. I knew our time was almost up.

He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.

“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”

That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.

On the 9^th of October 2012 I posted these words

https://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…

It is okay to let go my angel child.

Vic and I discussed this post… We cried then, and I cry now.

I pray that I will find peace.

I love you Angel Child

100_7810 — Vic and her boys on her 38th birthday

I am at a stage where it feels as if it is impossible to recover from the pain of losing Vic. I am told that the grief will gradually get better and become less intense as time goes by.

The first few days after Vic died was so intense. Family and friends cried, and we comforted one another. The house was busy with people coming and going. The planning that goes into a funeral and the writing of the eulogy took a lot of time. My grief was raw and incredibly intense. My heart physically ached. I experienced feelings of anxiety, panic, sadness, and helplessness. Yet it is actually a surreal feeling… it felt as if we were removed from the world. It felt as if I looked in from the outside. I heard myself speaking and reacting mechanically…Old school friends phoned and I rushed to get through their words of condolences so I could ask them about their lives. I did not want to discuss Vic’s death. They must have thought I was crazy.

People said “you are so strong…”

When a loved one dies at home I think it is harder afterwards…There is a “mystique” to the room of death. The smell of death lingers and the room is littered with medication, blood pressure equipment, thermometers and syringe containers. Bedpans and vomit-dishes are still in the bathroom…

The planning of Vic’s memorial service actually helped me get through the first days after her death. Friends and family spend time with us talking and sharing memories about Vic.

Many times, people show their emotions during this time of ritual. Overwhelmed by Vic’s death we actually did not show emotion right away — even though the loss was very hard. We stood amongst our friends and family at the reception after the memorial service smiling and talking. To the world it must have appeared as if we were strong and accepting of Vic’s death. Being among other mourners was a comfort; it sort of reminded us that some things will stay the same.

But the time came when the far-away family left, friends went back to their lives and the steady flow of visitors stopped. In a way it was a relief. We were forced to stop and come to terms with the reality of the situation….the pain of the loss and the enormity of our grief.

Within a week we were back at work and school. People were and still are wary of us – they do not know how to handle our grief. We quickly learnt that other people are not interested in our grieving process…We stopped talking about Vic’s death…But although we no longer continuously talk about our loss, the grieving process not only continues but intensifies.

It’s natural to continue to have feelings and questions for a while after someone dies. It’s also natural to begin to feel somewhat better. A lot depends on how your loss affects your life. It’s OK to feel grief for days, weeks, or even longer, depending on how close you were to the person who died. I was told yesterday by someone who truly loved Vic that Vic’s death is only a reality when they are in our home. When they leave it almost becomes a distant memory….

The loss of a child is different to the loss of a parent. The boys’ grief is different to my grief… I will go further and say that the grief of a teen is different to the grief of an adult child who lost his aged parent.

Vic’s death has been a devastating, distressing experience in the life of the boys. Although the boys have spent the majority of their lives in our home their sense of security and stability in the world has been turned upside down. Vic’s death has become the defining event in the boys lives. The boys have begun to define their lives into two categories: “before Mom died” or “after Mom died.”

The boys and I have experienced a sense of relief, ambivalence; guilt and regret after Vic’s passing. The boys have categorically expressed their sense of relief that Vic’s intense suffering and pain is over. I prayed for Vic to die. This sense of relief has however brought on more guilt!

Jon-Daniel was the first of the boys who had to cope with the realization that Vic would not be around to celebrate rites of passage; Vic slipped into a coma the day Jon-Daniel received his school’s honours award for academic achievement…..

The boys are battling to cope with Vic’s death. Their grief is intensifying.

On the 8^th of April they will meet the Hospice Psychologist. On the 25^th we are flying down to Cape Town for 13 days. We need a change of scenery. We need to grieve without being told to “let Vic rest…”

I make a point of telling them that I miss their Mommy too. They light candles for Vic. I cry in my pillow.

I know that the boys will eventually move on. It is the way it is – children bury their parents. It is normal. But a parent should never have to bury their child…

For 38 years my beautiful child was the centre of my life. I lived for her. Now I merely exist.

I hear her say “Mommy I love you” and I whisper “I love you more than life angel child…”

The boys and their grief…

Today, Jared (16) was called in by the school psychiatrist.

The psychiatrist spoke to him at length about the stages of grief. Jared loves facts.

Thanks to Google I am well versed in the stages of grief and constantly try to monitor where the boys are in the process. I did not stop to think that knowing the stages, in detail, would give them a sense of comfort.

Ten years ago we were told by the doctors that Vic had maybe 5 years to live. The boys were then 6 and 4 years old.

At the age of five, a child may have thought of death as a deep sleep from which the person would eventually awaken, (like the princess in Sleeping Beauty). At seven, the child may believe that only grandmas and grandpa’s and other elderly folks can become ill and die—but not little kids or their parents. Age 12 they know that death can happen at any time…

Jared developed a sugar problem at the age of 6…due to the stress of Vic’s illness. Over the years he has developed a weight problem as he stress eats. His school marks have dropped and he has lost interest in sport, his friends and life. He is a Type 2 Diabetic.

On the surface Jon-Daniel appears to be coping far better than Jared.

He excels in school and has immersed himself in sports or hobbies. I think what may really be at work here is a defence mechanism known as sublimation. I believe that Jon-Daniel has over the years subconsciously channeled his strong feelings of grief into a more “socially acceptable” outlet. He directs his attention solely to areas where he feels comfortable. It is his way of regaining control over a world that has been jolted out of orbit.

Having the intellectual capacity to grasp the implications of death doesn’t necessarily equip teenagers to cope emotionally with the tragedy. Adolescents typically appear to feel grief more intensely than adults, especially if one of their parents has died. The Adolescent Life Change Event Scale (ALCES), which mental-health specialists use to help quantify the events that are the most stress-inducing in teenagers, ranks a parent’s death as the number one cause of adolescent stress. Second is the death of a brother or sister, followed by the death of a friend.

The stress started years before Vic died. The boys grew up knowing that their Mommy was ill and in a lot of pain. The realization actually only hit home with them in 2007 when we told the boys on a couple of occasions that Vic was dying. In hindsight it would have been better if we never told them but at the time I believed it to be the right thing to do. I could not lie to the boys and tell them Vic was doing well when she was fighting for her life on a ventilator and the doctors were turning off the ventilator.

It was clear with Jon-Daniel over the years that he harboured resentment towards Vic when she was in hospital. In his eyes Vic abandoned them…his way of coping was to “harden” his heart. He would literally ignore her or act up when she was ill… Over the past year he however “softened” his attitude towards his sick mom.

Because adolescents are so sensitive about their “image”, they may feel self-conscious or outright embarrassed by displays of grief and struggle to suppress their emotions. This can also be a means of protecting themselves.

As a family we experienced “anticipatory grief”. During the past year especially we resorted to black humour. There is no “right way” or “wrong way” to mourn. Jared told me today that he asked his Church councillor last year whether you can mourn someone whilst they are still alive….

Grief is often expressed in one of the following ways:

Depression
Changes in conduct or acting-out behaviours
“Perfect” behaviour
A decline in academic performance
Refusing to attend school
Turning to alcohol or illicit drugs to numb the emotional pain
Seeking solace through a sexual relationship
Overeating or under-eating
Sleeping more than usual or not getting enough sleep
Physical symptoms

It is said that a teenager who loses a parent is also subconsciously mourning the end of the childhood he’d led up until now. However in the case of Vic the boys have potentially regained a childhood…I just hope and pray it is not too late for them to have a childhood.

Five Stages of Grieving

Shock / Denial

This is a protective mechanism that helps the person to function for the time being. With denial, the person may refuse to believe what happened. For instance, one teen was waiting for her friend to come to her graduation party and kept texting him to see when he would be there. Finally, she got a call from his sister telling her that he was killed in a motorcycle accident. She refused to believe he was dead, however, and reacted by telling the sister she was lying. Of course, his friend was experiencing shock. During shock, the person can function as though nothing happened, but may feel like she is in a surreal world or place.

Anger

Often there is blaming others for the loss or lashing out at people. Sometimes people act out their anger in other ways. The mother of a teen realized she was blaming her son for causing his own death after she began telling his friends, “Please, don’t do this to your mothers.” In essence, she was saying to her son, “Look what you’ve done to me.” The anger needs to be processed, though. The mother began to realize that her son was a teenager and that teenagers take risks. Teenagers’ brains aren’t fully developed in the area of judgment, so they don’t gauge risks the same way as an adult. Also, there were other factors that contributed to her son’s death besides his risk-taking behavior. Working through the anger helps a person to move through the other stages of grieving.

Bargaining / Magic

This often involves either cutting a contract with yourself, asking your higher power to take you out of the situation or fantasizing that this is some sort of dream and tomorrow you’ll wake up and it will never have happened. This stage helps the person to feel some control over the situation. For example, when one mother saw her son in the hospital emergency room lying dead in a body bag after all attempts of resuscitation had failed, she laid over his body begging God to breathe life back into him, praying for a miracle.

Depression / Grief / Sadness

This stage involves a lot of “what ifs.” The person now turns the anger inward and blames herself for the loss. Often this is false guilt, though, and the person really had no control over what happened or no real way to prevent it. This stage provides an opportunity for the person to grow spiritually and perhaps further develop spiritual beliefs as she searches for the meaning or purpose of life, death, pain and suffering. Even if the person is somehow at fault, perhaps the person’s actions or shortcomings are being used as part of a greater plan.

Acceptance / Forgiveness / Resolution

Accepting the loss doesn’t mean you like what happened. It does mean that you are trusting that life can be good again in spite of the hurt and pain the loss has caused you. Sometimes we need to forgive the loss or perhaps someone who has directly caused our pain or grief. Forgiving means letting go of bitterness and revenge, which only harm us and not the offender. To be unforgiving means we are not moving on and letting go, but continuing to allow ourselves to be hurt by the other party or the loss. We feel more powerless when we keep wanting something from others that they cannot give us. Perhaps this is an apology or maybe a change of heart. Nevertheless, we can always grow and move on without seeing any change in the other person or getting back what was taken from us. We take back our power in the situation when we begin reversing the negative consequences in our lives and perhaps by finding new purposes and meanings for our lives. http://www.cincinnatichildrens.org/service/s/surviving-teens/stressors/grief-loss/

Grief never ends, but it does change in character and intensity. Grieving is like the constantly shifting tides of the ocean; ranging from calm, low tides to raging high tides that change with the seasons and the years. I know this from my parents and BFF deaths.

We will meet with the Hospice councillor that the boys saw last year – they connected with him. Maybe it is time to start Jared on an anti-depressant….

We love the boys so much. I wish we could wrap them in cotton and protect them from the world. They are so beautiful and have these AMAZING personalities. They are not difficult or rebellious teenagers.

I wish I knew what to do.

The process of preparing for death

A while ago I read the following “When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death. For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death.” Terminal Illness – Preparing for Death – Dealing with Illness

Today a mere 24 days after my child stopped breathing I re-examined this statement.

“When you, a friend, or a loved one is diagnosed with a terminal illness, a process is begun: the process of preparing for death.” This is so true. In one foul sweep everything changes! The way one approach every day; every birthday, Christmas and New Year… One sets small goals. You learn to appreciate the small things in life – having a cup of coffee with a friend, celebrating another Mother’s Day, living long enough to see the newborn of a loved one…

Last will and testament … setting up trusts for the children; sorting out photos; tidying up cupboards; making decisions whether to have a funeral or cremation….Just close your eyes and feel the terror of planning your own memorial service…. Feel the terror of knowing that your organs are shutting down….feel the terror of knowing that you will have to say goodbye to your loved ones – that they will walk out of your room and you will never see them again, feel the touch of their gentle hands, never hold your sons again….. Imagine knowing that your life is running out. Knowing that soon you will breathe your last breath!

This is what my Vic experienced. She kept asking her BFF, Angela, “How do I say goodbye?” Vic would cry and hold onto Angela. “Don’t go! Please stay”.

Imagine being on death row with the execution date set. The process has begun…. The condemned gets to make a will, meet his family for the last time, write his last letters, order his last meal and wonder what death will feel like…

Vic was scared. She feared death. She feared not knowing how death would feel….she feared closing her eyes and not ever seeing her loved ones again.

“For many, this time of preparation can be transformed into a rewarding, comforting ending, giving meaning to life, and dignity to death”…. What a load of hogwash! No matter how much love surrounds the dying person there is no dignity in death. How can death be rewarding?

It is however an amazing experience to witness the transition of the body when the soul leaves!

This time of preparation is a time filled with trepidation and fear. Nobody KNOWS what lies beyond your final breath. What is the Catholics are correct and you head for purgatory? No one is sin free….What if Islam is correct and you are a Christian? Then you are doomed to hell! Hopefully the Christian faith will allow us entry into Heaven…. We will only know when we die!

Comforting time? What comfort can there be in dying? No more pain? Sure! That is certainly comforting but what about the terrible, terrible knowledge that one will be separated from your loved ones? The love that enshrouded you all your life will be plucked from your existence! The love will continue but there is a divide between life and death that cannot be crossed!

Meaning to life? Yes that is true I suppose if you are distant and removed from your family or loved ones or if you had a “purposeless” life. Dying does give an opportunity to live each day, not waste time procrastinating or living in anger.

Dignity in death? There is no dignity in a lingering death. Bit by bit the terminally ill lose their dignity. Every day there is some new loss to mourn. The final days, if they are lucky, they will be sedated. If not they will writhe in pain, choking on their own phlegm and gasping for breath, their hearts racing and delusional from fever.

People around the dying become scared and start praying for their deaths…I know because I did! People stop visiting because they want to remember the dying person as a healthy, happy person….The terminally ill cease to exist to most of the world long before they die.

Stepping Stone Hospice has 26 patients. We have had 12 deaths to date – Vic being the first. Stepping Stone has allowed the dying to die pain-free. Maybe the rewarding ending is for the living?

“Live like you were dying” – Tim McGraw

I read this post today – http://daysnet.wordpress.com/2013/02/03/we-need-to-step-back-and-just-breathe/ I always remember the Tim McGraw song

“LIVE LIKE YOU WERE DYING”

He said “I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin’ ’bout the options
And talkin’ ’bout sweet time”
I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”

He said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying”
He said
“I was finally the husband
That most of the time I wasn’t
And I became a friend a friend would like to have
And all of a sudden going fishin’
Wasn’t such an imposition

And I went three times that year I lost my dad
I finally read the Good Book, and I
Took a good, long, hard look
At what I’d do if I could do it all again

It dawned on me that we have been luckier than most. We have lived as if Vic was dying all our lives. We lived every second. Vic lived every second. Only the last week of her life she went into dying mode. Only once she was sedated did she succumb to dying. The rest of her life she lived; we lived her life. Every single birthday we celebrated Vic’s life.

We have a family tradition, (which the kids hate), of having eulogy speeches on everyone’s birthday. So on our birthdays we would go around the table and everyone gets to say something nice of the birthday boy/girl… We call it our “Living Eulogy”… So often we only speak well of the dead. We treat the living with contempt and disregard; we do not acknowledge their achievements and goodness…We are so focussed on success. Success by our own terms!

I am grateful for our family tradition and I will not allow it to die off… I am grateful Vic knew how much we revered her….

Vic did not have a career or a degree, fame or fortune. Yet she has touched thousands of people’s lives worldwide and will continue to do so through Stepping Stone Hospice. I am grateful that she heard how much we loved and respected her. The most common words were “You are the bravest person I know…”

Vic was an amazing mother. She loved and nurtured her boys. I wonder whether they ever witnessed her tears of pain when she cooked for them or made their lunch for school…. I did.

We will continue to honour Vic’s life through our actions and words.

now and forever

Today at times I felt as if I was suffocating. It felt as if the grief had grabbed me by the throat and was strangling life out of me. My heart physically ached.

In the infamous words of Queen Elizabeth 11 “Grief is the price we pay for love.”

Vic was an only child. I spent the first 16 years of her life dedicated to Vic and only Vic. Vic’s dad and I separated early in our marriage. Even in the years that we were married he studied part-time and only got home from University after 10 at night. Weekends – well that was busy…

When Vic was 16 I married Danie. He became her dad and she embraced the fact that she now had siblings. Danie loved Vic with the same pure unconditional love that she had for her boys. Vic admired, respected and loved Danie for the wonderful dad that he was to her.

Tonight I cannot help but think and remember all the love and nurturing that went into Vic’s life, caring for her, raising her, nursing her when she was sick and taking her to the doctors, teaching her all the things she needed to know to keep her safe in this crazy world, teaching her the art of shopping, watching her get married, fall pregnant – twice, survive 81 abdominal surgeries, fighting for her life every single day. I loved the mother that Vic was. Caring and nurturing.

Tonight I remember Vic’s trademark – getting dressed in clothes every day before the boys came home from school, waking up to see them off to school every morning, arranging a party if she had one ounce of strength left! Vic appreciated seeing the light of day, getting out of bed, seeing the faces of her children. Every day she breathed was a day that mattered to her. Every day she used to make memories with her sons, family and friends.

Every day was one more than she had the day before.

She loved driving her little car. (Vic was a terrible driver!). Vic was the take-out queen. She LOVED take-outs! The last meal she ate was a bit of a Steers hamburger….

Vic was a good, honest, compassionate, caring person who loved loyally and deeply! She was strong-willed and fought for what she wanted. She did not tolerate disloyalty in any form.

Vic toured Egypt in a wheelchair and with a cane! Her biggest wish was to attend Jon-Daniel’s honours evening (4 days before she died) and to travel to Italy.

Vic was brave! She NEVER complained. She accepted that pain was part of her life; that being ill was her life. She seldom questioned the cards she was dealt. She accepted her life stoically.

I KNOW how hard it was for Vic to get out of bed. I know how easy it would have been for her to curl up and die very early in her life. She held on to life until the bitter end because giving up was not an option!

I thought I was well prepared for this period in my life. I prayed so long that God would release her tortured little body from the hell she lived every day. I spent years waiting and wondering how it will be. I have been told that I, of all people, should have been prepared for her death. After all I lived with my child’s terminal diagnosis for 10 years.

The short and the tall of the matter is that there is no way to be prepared. Researching the stages of death, the grieving process and even preparing her memorial service’s PowerPoint Presentation, in anticipation, could not prepare me for the pain that struck the second that my child died..

When I heard Vic’s breathing change I knew she was going. I knew that within minutes my child would be dead… Yet in the end, her death was still a terrible shock to me. How did it happen so quickly?

How do I go on?

Just as there are only some people we can really talk to about our children while they are alive, it seems that there are only a few people we can talk to about them once they have died.

When you lose a child you lose so much more that you may have been prepared to lose. I have lost my identity as a mom. I am no longer a Mommy. I may be a back-up mom to four wonderful young people who love me dearly, unconditionally and deeply but I am no longer a “real Mommy”. Mother’s Day will come and go…The four kids will celebrate the women who gave birth to them. The boys will not have a mom to buy a gift for and I will not have a child to wish me. I do know everyone will try very hard to make it easier for me. But Vic will not be here to wish me a happy Mother’s Day.

I have a hole in my heart. My heart physically aches. I want to die.

Tonight, 21 days after my baby girl’s death I remember a love and bond that was beyond description. I will continue to breathe; I will honour my promises to my child; I will bring up her beautiful boys; I will cherish her memories; I will grieve for my child. She was worthy of my love – she is worthy of my tears.

Sweetie I love you now and forever.

My Mom is a Survivor

This poem may have been written by my precious Vic….

She used to worry so about me surviving her death. Our domestic helper has worked for me for the past 18 years. Bettie is part of the family. Over the years we have shared tears for our children…

Bettie went on her annual leave on the 18th of December 2012. She tells me that Vic asked her to keep an eye on me, after her passing, as she would not see Bettie again…

Vic knew she was dying. I knew she was dying. I prayed for her to die! Why is it so hard now. I want to scream my anger and pain…I want to lash out at someone and just punch them…

Bettie returned just in time for Vic’s memorial service.

My Mom is a Survivor
My mom is a survivor,
or so I’ve heard it said.
But I can hear her crying
when all others are in bed.
I watch her lay awake at night.
and go to hold her hand.
She doesn’t know I’m with her
to help her understand.
But like the sands upon a beach
that never wash away…
I watch over my surviving mom
who thinks of me each day.
She wears a smile for others,
a smile of disguise.
But through Heaven’s open door,
I see tears flowing from her eyes.
My mom tries to cope with my death,
to keep my memory alive.
But anyone who knows her
knows it’s her way to survive.
As I watch over my surviving mom
through Heaven’s open door…
I try to tell her that
Angel protect me forevermore.
I know that doesn’t help her,
or ease the burdens she bears.
So if you get a chance, call to her
And show her that you care.
For no matter what she feels,
my surviving mom has a broken heart
that time won’t ever heal.
~K. D’Ormeaux

Never gone away…

I have received countless beautiful messages of encouragement, love, compassion and caring on my blog. Vic read my blog every day. The last couple of blogs I deleted because even I could read the despair in my words. Vic was in emotional anguish. She kept saying “Mommy, I don’t want to die”” or “Mommy, I am so scared”. She would wake up and cry with fear…

I have not replied to all the messages, but will systematically work my way through it. I did read the messages of encouragement and support to Vic. Right up until the end…. Vic loved the support we received.

It may come as a shock, but I am actually a very private person and allow very few people close to me. Through my blog people have come close to me, reached out and touched my hand and heart and I thank you for it! Vic often said she wanted to write and thank you all for your love and support. Sadly she never got to do it.

Over the past 8 months I have laughed and cried with you as you have laughed and cried with me. Some of you have written Vic beautiful poems and others have dedicated songs.

Thank you so much for your loving concern. For allowing us to enter your lives; for your encouragement and support. I shall continue to blog our survival journey.

Judy Unger http://myjourneysinsight.com/2013/01/28/never-gone-away/ has on a regular basis written me encouraging emails and shared her beautiful songs with us. I would like to share this special lady’s one email with you.

Jan 22, 2013

Hi Tersia,

I am continuing to write to you. You have entered the awful hole. You are now a member of the bereaved mother’s club. No one wants to join this club.

I read your post. The numbness is very bizarre. What purpose is there left to living – where did she go? I remember it all.

I continue to compose and sing. I was stunned when I wrote and recorded my new song “Angel in the Sky” just two weeks ago. Never has such a beautiful song come out of the sky to bless me. It is many years along for me – so I can sing about my angel with sweetness and without pain. I dream of when that time will come for you. For now, close your eyes and think of Angelic Vicky holding you tight.”

This is Judy’s latest song that she dedicated to her son who died 18 years ago. It is crystal clear that 18 years down the line Judy still mourns her son… I know in another 18 years I will still be mourning my baby girl’s passing. Thank you dear Judy for sharing your beautiful song with us.

NEVER GONE AWAY

I know that soon you will leave me

how will I ever say goodbye?

there’s so much you’ve left me

I’ll try hard not to cry

and when you’ve left you’ll still be with me

in all the songs I’ll long to play

every time I see a smile

you’ll have never gone away

It always seems to me, that whenever I was down

your hand was the one holding mine

but your fingers I’ll let go of now; how I long to hold on

you’ll touch so many others when you’re gone

I know that soon you will leave me

how will I ever say goodbye?

there’s so much you’ve left me

I’ll try hard not to cry

when you’ve left you’ll still be with me

in all the songs I’ll long to play

every time I see a smile

you’ll have never gone away

Sometimes I will stop and wonder

you’ll know what I am feeling

I’ll hear your laughter in my mind

I’ll remember all our special moments

They’ll run by with a tear

You’ll leave, but in my heart, you’re still here

And I know that soon you will leave me

how will I ever say goodbye?

there’s so much you’ve left me

I’ll try hard not to cry

when you’ve left you’ll still be with me

in all the songs I’ll long to play

every time I see a smile

you’ll have never gone away

http://myjourneysinsight.com/2013/01/28/never-gone-away/

–

Jan. 23, 2013

Hi Tersia,

Tersia, what can I say? I read your post. It is unbearable. There are no words. I think every bereaved parent suffers the helplessness of being unable to save his or her baby. Vic is your baby. The horror of her ending will eventually fade, but your opera has begun.

The amputation of a soul – there are no words for it. You will emerge from the fog, you will get through this – and you have already been through so much already. You had goodbyes – something that many bereaved parents long for. But with the goodbyes came god-awful suffering and trauma. How can you let go of that?

I think of the lyrics from my “Angel” song – “My lovely light – just not in sight.” Vic will always light your way now. She is not in sight – but that doesn’t mean she isn’t with you.

I know Vic is with me. I still smell her, sense her presence and find notes of love everywhere. Vic will always be the light of my life. I love and miss you Angel Child!!!

St Joseph’s Lilies…

Someone phoned Colin and told him it was okay to bring the boys home…

My friend Judy arrived. I can’t remember for love or money what she said. I do remember the comfort I felt from her presence. The boys arrived and we group hugged. I remember thinking “how calm they are”…

I took them through to Vic’s room, the linen had already been changed and the room tidied. One would never say someone as precious as my beautiful Vic had died in the room a couple of hours earlier… Vic’s room looked the same as it would have looked if she was in hospital. As if she would be home within a couple of days or weeks … as thousands of times before.

We cried a bit. We spoke about her suffering being over. I could sense her gentle spirit.

Vic’s room was not a scary place to be. Esther said that it was a room of love… I was so scared the boys would not want to go into Vic’s room, that they would associate the room with death. My dad too died in that room… I knew I had to sleep in Vic’s bed (again) that night.

The minister and undertaker arrived at the same time. The minister had prayed for Vic so many times in her life…he knew her well. I always called him my “secret weapon”. On umpteen occasions he prayed the dying prayer and Vic would miraculously recover! This time it had not worked. This time he would pray the prayer for the dead…

The boys and Colin sat in on the meeting. We discussed the service and I requested that Vic not be referred to as the “deceased”. Vic had given me the order of the service, the hymns she wanted sung and the names of her pallbearers. The boys decided on Psalm 71 as the Scripture reading – it was Vic’s favourite Psalm and one of their favourites. It was easy. The minister, Bella, prayed and left.

The undertaker hauled out his I pad and within minutes he had scanned Vic’s and my ID documents. He showed us lots of photos of different caskets. We chose a dark coloured rectangular casket.

“Would you like flowers on the coffin?” he asked

“Oh yes” I said. “St Joseph’s lilies – lots and lots of them” I asked.

“How big must the bouquet be?” he asked

“The entire length and width of the coffin” I replied

“That’s a lot of flowers” he said. “The coffin is 2m long…”

“That’s far too big” I said

“Mommy will slide up and down in the coffin” one of the boys said….

“Don’t worry” he said. “We put in wedges so she would slide around”

“We want 2 metres of flowers” I said

“Can we add another type of flower” he asked

“White roses” the boys said simultaneously

“Do you want a viewing or an open casket” the undertaker asked.

“No! No-one is to see Vic the ways she looks now.” I said

The funeral was arranged.

Vic has left home for the last time…

My beautiful Vic sleeping peacefully 10.1.2013.

For a long time after Vic had breathed her last breath I lay next to her. I touched her face and hugged her close to me. Something I could not do in life as I may have fractured a bone or two. Everybody left me alone with Vic. I was so grateful for that precious time with my angel child.

I washed Vic and dressed her in her favourite pyjamas. It was so difficult trying to dress her limp body. Although I knew it did not matter anymore I was scared I would hurt her. Years of conditioning I suppose. I was shocked to see that a large part of her body had already discoloured. Her right hand shoulder, her back and the top of her legs were black and blue. When I washed her little body at 7am that morning, a mere 3.5 hours earlier, only her little toes had started discolouring… Her back was still so warm from the fever that had racked her body. Her hands, feet and face were cold to the touch.

I brushed her beautiful hair.

Then I realised that the boys could not come home until Vic had been “removed”. I phoned Siza to pronounce Vic and the undertakers and requested that they send their people to come and fetch my child. I lay with her for a further 30 minutes. I held her tight and cried for her. I just wanted to die.

Siza, arrived…. She was so matter of fact about Vic’s passing. She put cotton wool in my child’s mouth because Vic’s jaw had relaxed! I wish I never saw that!

Just before 1pm the undertakers arrived. I was torn. I did not want her to go but I could see that her beautiful soul had left her body. It was no longer my beautiful baby girl who lay in that bed. In death Vic looked like a stranger… yet I felt that if Vic left that room she would forever be gone. Strange…..

The undertakers walked into Vic’s room. They were so smartly dressed in dark suits, white shirts and red ties.

They hugged me and said “When you are ready… We can wait”.

I remember thinking “I look so ugly when I cry. These strangers can see me cry!”. I nodded and they wheeled in a gurney type “bed”.

They meticulously folded up the outer cover to reveal a plastic sheet. They lowered the gurney to the same level as Vic’s bed and took her from my arms…

Someone said “Be careful. She breaks bones easily…”

They lay Vic on this horrible plastic sheet and covered her in it. I wanted to die. I still want to die just thinking of it. My beautiful baby girl, who only deserved Egyptian cotton, wrapped in hard plastic!! They quickly replaced the cover and zipped it close. I think my sobs were driving them mad.

Vic looked so tiny on that darn gurney! Tiny and dead!!

Minutes after one my baby girl left home for the last time. Never again would she grace us with her presence. Never again would she shuffle down the passage, never again would we hear her laughter or her cries of pain.

Vic left home – forever.

Rest in Peace My Angle Child 22.1.2013

Where do I start? How do I begin a farewell when I still can’t believe you’re gone? How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love. I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever. Over the years people have complimented me for being a good mother but I truly cannot take credit for that. You were born good, and great and amazing. You were the one who taught me lessons in life. I believe you are an angel God sent to teach me.

You taught me love. You taught me honesty. You taught me to love unconditionally. You taught me how to forgive and how to be strong. You are the strongest person I have ever known. You gave me strength when I was weak. When times were sad and tough you reminded me to be grateful for the small things in life. You taught me how to be myself. Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing. It was so important to you to live. And that you did. You gave birth to not one beautiful baby but two! You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world. You rewrote medical history. You defied death for so many years… You mocked bad news and a poor prognosis…

You made me so proud. You have always been my greatest pride and joy. At school you excelled as a pianist. As a mommy you were an example to all. As a dying person you were brave beyond words.

I’m not sure how I can live this life without you. You worried about me just as much as I worried about you. You told everyone how worried you were that I would not cope without you. You fought so hard to stay alive. You fought until you gave your very last breath. You did not want to leave your boys. You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you. You made an incredible impact on the world. You left two monuments of your love and mothering skills. Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come. It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you started seeing angels. You saw Gramps, Uncle Dries, your father and Auntie Marlene. Then a week before your passing you said “My whole room is full of angels” You fought to stay alive every single day of your life. Eleven months ago you called a family meeting and told us that you had decided enough is enough. No more surgeries. No more hospitals.

Over the past 11 months you made your final wishes known. You planned your memorial service. You spoke to the boys about what was important. I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body. But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life. You were always my first and last thought. I feel numb and as if I am in a bubble. You will be happy to know that we have been surrounded by love and support. But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore. But then I think, how can I be sad when I know you’re in a better place? How can I be sad when you brought me so much happiness? How can I be sad when God is already working miracles through you? How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother? How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes? I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted. We love them so much. No-one in the world can ever take your place. We promise we will keep your memories alive. We will honour our promises to you.

So now we must bid you farewell. It is your time to run, free from pain and suffering. We will always love you. We will never forget you.

Rest in Peace my Angel Child.

I am setting you free my angel child

Tonight I can truly sing this beautiful song to Vic…

SET YOU FREE

You’re hanging on as night turns to dawn

I know you can’t stay and soon you’ll be gone

we both know it’s hard to let go; wherever you are my love won’t be far

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

There is no fear and your leaving is clear

we’ll still have our love it remains with each tear

I cry as you leave but I truly believe; as you leave my sight we’ll both be all right

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

though you have flown to somewhere unknown

we’re never apart ‘cause you’re here in my heart

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

though I long for you to hold me; I need to set you free http://myjourneysinsight.com/

My baby girl is in the final stages of dying. She has developed a bedsore on her heel and her hip appears to be cellulitising… Vic is jaundiced and her heart rate is up to 160 bpm.

I have been lying next to her for the better part of the day listening to her slightly laboured breathing. Vic was catheterised today and the appearance is the urine fills me with dread. It is brown red in colour.

It is amazing that all Vic’s wrinkles have miraculously disappeared. Her skin is unlined. In death she is heartbreakingly beautiful. Her face is serene.

For all intents and purposes Vic’s suffering is over. This part of her journey is peaceful and serene. I am burning candles. The house is quiet but for Vic’s gentle yet shallow breathing.

I decided today that it would be in the boys’ best interest to spend a day or two with a friend. Jared is with Ricardo, BFF, and Jon-Daniel is with Henk, cousin. I cannot bear the thought of them witnessing Vic death and then Vic being removed from the house. They were so relieved when I gave them the option.

There is a steady flow of visitors in and out. Mainly family. My sister from Pretoria and my brother from East-London have arrived.

I am numb from tiredness.

Esther brought Lasagne for dinner.

It is going to be a long night. I honestly believe Vic will not see the end of this week.

“Promise me Mommy…..”

It has been a long day. Vic is in a drug induced sleep. She looks so peaceful. Vic is not anaesthetized – 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 it’s 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….

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.

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.

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…”

I hate my life. I wish I were dead.

dead woman walking

Last night I had a discussion with someone who Vic loves very dearly. This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic. She is actually the only person that has truly travelled this horrific journey with us. Vic has lived through many death sentences and reprieves. Lee has been around for at least the past 7 years of Vic’s journey. Vic has nursed Vic back to health many times and I know she cares deeply for Vic, her friend.

I discussed the various treatment options with her. Do I insist on having a stent fitted or do I request feeding tubes? Or do I go with Vic’s non-intervention wish? But if I comply how do I bring calmness and peace in Vic’s life? Vic is no exception to the rule…As Bella pointed out last night even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation. If I allow sedation, which is against her wishes, I will silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen. Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting. Her breathing is shallow and her heart rate weak but very rapid. Her blood pressure is dropping and her circulation is poor. The liver is very enlarged.

We are past the point of no return. Vicky is dying and only a miracle can save her. There is no operation, no magic medication, and no nothing that can save her.

Today I again witnessed her anguish and phenomenal will to live. I saw Vic, in my mind’s eye, Vic being escorted, in deadly silence down a long dark passage. Her family and friends were escorting her on her final walk into the chamber of death. I clearly saw the fear in her eyes and I could feel her little body trembling with fear. I heard a voice saying “Dead woman walking…”

I saw her walk into an execution room, being strapped down and the needle being inserted into her little arm. I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

It is so cruel. For all of us. Why do people linger? Why don’t we all just go to sleep and never wake up? Or die in a car accident? Why this suffering??? I want to go to sleep and never wake up. Life sucks!

Vic is on a mild sedation. She is more calm and peaceful than she has been for a couple of weeks. She woke up this evening and had dinner…half a hamburger!! My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food. She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!” She wailed

“I have let down my boys. I always cover their books…”

“Oh Jared, look! Oupa Tienie is standing behind you…” It really spooked the boys. Tienie died on the 5^th of November 1999…

I wish Vic was married. I wish her biological father was still alive! I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased. I will silence my child’s sweet voice. I will also silence her tears and fears.

“Dead woman walking…”

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