Death of a child – Vic's Final Journey

Pendulum of grief – 7 years

It has been 2555 days since my beautiful child succumbed to her horrific illness. It has been 6 years, 11 months, 30 days. I have been swinging on a pendulum of grief and recovery for the past 84 months. It has been an ongoing battle to balance the pain and guilt of outliving my child with the desire to honour her final wish.

Dr Colin Murray Parker said “Grief is the price we pay for love”

How true!

My love for my child will never die. I will never forget my child.

As I live in the past I continuously remember (some long-forgotten) things. I remember her baby softness, her toddler cuteness, her primary school years when she developed a sense of humour, her defiant teenage years. I remember Vic falling in love with Colin, getting married and falling pregnant 6 weeks later. I remember the gentle, beautiful mommy she was to her boys. I remember her fierce love for her boys. I remember her descent into ill health. I remember her last days. I remember her last breath.

I feel compelled to say the following to those of you blessed with healthy and living children. As you love your living children I love my child. Unconditionally and every second of the day. I too want to talk about my child… Just as you do. When you talk about your child and his or her achievements I don’t squirm in my chair. When I talking about my child you try and change the subject. I have heard a friend say “I have heard the story before “and walk away from the group. If I repeat a story it’s because I don’t have new memories. I only have old memories to hold on and repeat. Your discomfort doesn’t make my child matter less.

Vic’s life was cut short.

Not my love for her.

I will grieve for a lifetime. I will never “get over it”. My love for Vicky will last for the rest of my life. Every milestone in my grandsons lives remind me of our loss. Milestone birthdays, Jared’s wedding and now Kirsten’s pregnancy. Jon-Daniel graduating at the end of the year… Yet I have experienced joy. I have hugged and wiped tears from the eyes of other bereaved parents. I have been filled with pride for my precious child’s brave and selfless journey through life and death. I look at the boys and am filled with pride for the young men they are. I remember with pride what a wonderful mommy Vicky was. I am filled with sadness that Vic will never have the privilege of holding her first grandson.

Tonight, as the pendulum swings back I once again descend into this intense state of grief. Tomorrow morning at 10:35 it will be 7 years since Vic stopped breathing.

Today I allowed myself silence and unchecked tears. Next week I will continue to honour my child’s life by fulfilling her final wish. Rest in peace my precious, beautiful child. You will forever be in my heart. I will never forget.

Messages from Heaven – 2

When I wrote my last blog, https://tersiaburger.com/2019/10/15/messages-from-heaven-1/ I realised that it would have to be a “series” of Messages from Heaven. So, here goes …Messages from Heaven – 2. Again, this post should, however, have been the first.

Vic and I often spoke about life after death. We often, stoically, discussed ways of communicating after “the event”. We agreed that the bed and bathroom would be off-limits.

We both believed that there would be a way.

Vic often, as a Convent Girl, expressed her fear that her pain would not end with her death. I was responsible for administering huge amounts of drugs to her during the last months of her life. Whilst the medication was prescribed by a Palliative Care doctor, I was not a medical person and feared this part of caring for her. I dreaded sticking needles into my child’s little body. The medication took her pain away but did I kill her???

After Vic died I washed her little body and dressed her in her warmest pj’s. I put her warmest woolly socks on her feet.

I whispered “Vic, you have to give me a sign… You have to let me know that you are okay”

“Vic, you know Mommy is a blond. You have to give me a clear sign. A very clear sign”

After the Memorial Service, we carried Vic’s coffin to the hearse. It was heart-wrenching carrying our brave little warrior knowing that this is it….

The Minister quoted from Ecclesiastes 3:20 “…all are from the dust, and all return to dust.” and in Ecclesiastes 12:7 the Bible said, “Then the dust will return to the earth as it was, And the spirit will return to God who gave it.”

We said our finals goodbyes.

We stood back and the undertaker secured the coffin with “coffin clasps”. He pressed a button and the rear door of the hearse slowly closed…and, opened. Very apologetically he resecured the clasps and again pressed the button to close the rear door. It slowly closed and…opened.

“Vic’s here. She is going nowhere” I said to nervous giggles of family and friends.

A very embarrassed undertaker apologised and again he fiddled with the coffin and the clasps. The third time he pushed the button the door closed.

Vic had sent me a message, loud and clear, she was okay!

To the Living, I am gone,
To the sorrowful, I will never return;

To the angry, I was cheated.
But to the happy, I am at peace.
To the faithful, I have never left.
Talk to me, and I will hear,
your prayers, they comfort me,
your laughter makes me laugh,
but don’t weep for me as I have my reward,
I am with the Father and he will never let me perish,
The Lord comforts me and longs to comfort you.
So be happy my family and don’t despair,
I am in good hands, waiting for the day when
the Lord calls you to come home.

–Anonymous Continue reading Messages from Heaven – 2

Messages from Heaven – 1

On the 24^th of August, Vic’s eldest son married the love of his life. The morning before the wedding, he stood talking on his cell phone when out of the blue a little white feather stuck to the screen of his phone… Vic communicates with us through feathers. This was his message from Heaven

Planning a wedding where the bride is surrounded by loving parents whilst the groom had lost both parents is hard. Keeping the balance between remembering and hoping, missing and embracing is hard. Kirsten was sensitive to Jared’s feelings and I am grateful to her for this.

Jared did not want his parents absence to overwhelm the day but he wanted to honour his them. They decided on photographs in front of the Church

I was filled with sadness knowing how desperately Colin and Vicky would have wanted to be there. I know how desperately Jared wanted his parents at his wedding… Positioned to the left of the bridal couple, there was a table with three photographs. There was a photograph of Colin, Jared’s dad. The second photograph was of Vicky and was placed in the middle. The third photograph was of Kirsten’s grandfather.

During the service, with a loud bang, Vic’s photograph fell over… I smiled and looked at my husband acknowledging Vic’s presence. The photographer picked up the photograph and positioned it properly. Five minutes later a huge bang… Vic’s photograph had fallen over…again. This time the photographer was busy snapping away and Kirsten’s one bridesmaid picked up the photograph and firmly positioned it on the table.

I KNEW Vic was there and making her presence known.

I was mesmerised by the photograph. In my mind, I said, “Vic, if you are here your photograph will fall over again…” The photograph started moving forward and fell over…

Vic was at her boy’s wedding.

The wedding was beautiful and filled with love, hope and tomorrows

Everyone remembered Vic and Colin in their speeches. Some tears fell but it was a day filled with tomorrow. The mother and son dance was heartbreaking. Jared and I cried. Vicky should have been there in her son’s arms dancing to I’ll be Around

https://youtu.be/CsY07KFALa

God speed Jared and Kirsten. We are so happy for you. It was a beautiful wedding and know that your guardian angels were there witnessing your vows and joy

Happy Birthday my Angel Child 31.8.1974 – 18.1.2013

Happy birthday my precious Angel Child.

I wonder whether you were excited about your birthday? Do you still celebrate your birthdays or do you celebrate the day your pain and suffering ended?

I miss you so much, sweetheart. Although I still cry for you almost every day I honor your legacy every single day of my life. What a community changer you were… Through your suffering, almost 1400 people have received love, dignity, and quality of life.

Would I rather have had a healthy child? YES!!!! But this was our destiny and out of our control. Your suffering led us onto a path that we would not have chosen voluntarily.

So my little Angel, tonight we will have a dinner and talk about you the entire evening. We will do your birthday eulogy as we did all the years you lived. We will talk about your stoic bravery. We will laugh about your idiosyncrasies, your inability to remember or tell a joke. We will remember your ability to smile through your pain. We will hear your voice saying “I am fine”.

We will cry for your empty seat at the table and the huge void in our hearts.

Someone asked me whether it ever gets any easier and I could only say “No”.

The pain has not gone away. The pain will never go away. The longing for another “tomorrow with you” will never go away… Every morning is a stark reminder that another “tomorrow has broken”.

But Baby Girl, I looked at old photos of you tonight and the dreadful pain in your eyes was a harsh reminder of your suffering. I am seldom not awake at 2 O Clock in the morning…injection time. I am haunted by your whimpers of pain, your tears when you say “Help me, Mommy. I cannot handle the pain anymore”. My feelings of helplessness.

I was talking to someone yesterday (about you) and she said “I could never see my child in so much pain. I would take him out. I would not be able to handle it…”

Did I ever consider it? You know I did. You begged me to do it. But in the dark of night, there was always a remote possibility that “tomorrow” would be better. Sometimes it was.

But today is not about me and my grief. Today is the reminder of the happiest day of my life – the day I held you in my arms for the first time. Know, that I will always love you. .

You will always be the highlight of my life – my greatest joy. Know that I am at peace that your suffering is over.

But always know that I wish your life was different.

I hope and pray that you have found the peace that eternity is supposed to bring

Happy birthday my angel.

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Vic’s legacy – her story

I have not posted in a long time. I keep thinking up posts but I never seem to have writing time. I do dream of having time to write my book. No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered. The book must portray the immeasurable value of her legacy. It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.

On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice. I was given 20 minutes but I think I took much longer. I wanted people to meet Vicky. The “healthy”, carefree child/woman with a heart full of hope. I wanted people to see how during the last 10 years of her life she was stripped of so much.

And, when she realized that there was no more hope to feed on…

I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain. The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.

It felt almost “clinical”.

How do I begin to share the horror of my child’s journey? My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…

For so many years I did not sleep because I was scared I would not hear her. Physically and mentally I was exhausted. Now…I do sleep but my soul is tired.

I must capture the heartlessness of the medical profession; the lack of counseling; the importance of hope… I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.

But most importantly I must fight to keep Vic’s legacy alive. I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”

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5 years, 3 months and 3 days

Five years, 3 months and three days ago I lay next to you listening to your labored breathing. You lay motionless in your bed. Your hands and feet were ice-cold. Your body was burning up with fever. Daddy and I counting the seconds between your breaths. My hand on your little heart and my head next to yours.

I remember whispering how much I love you; that there was nothing to be scared of…I felt your heart beat getting weaker and weaker; your breathing becoming more shallow by the minute.

When your little heart stopped beating my heart broke into a million pieces. As your soul soared mine plummeted into a hellhole of grief and despair.

I knew that it would be hard but nothing in the world could have prepared me for the pain that followed. My heart aches for you and I would give anything to hold you one more time. To hear that mischievous giggle…

Never again will I hear that sacred word “Mommy” …

We miss you so much. Our family will never be the same again.

“To plant a garden is to believe in tomorrow”

“Who wants to die? Everything struggles to live. Look at that tree growing up there out of that grating. It gets no sun, and water only when it rains. It’s growing out of sour earth. And it’s strong because its hard struggle to live is making it strong. My children will be strong that way.” ― Betty Smith, A Tree Grows in Brooklyn

I spent the weekend packing up Vic’s flat and working in the garden. I bought new herbs for my herb garden. I changed the outlay (or started) of the back garden.

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This year may be easy or it may be a struggle. I know that there will be days of profound sadness but I also know that my sadness will be put to good use. I believe that, by putting my grief to work, I will find a way to get through my sad day.

In the words of Robert Frost – “In three words I can describe everything I’ve learnt about life. It goes on. Despite our fears and worries, life continues”

My “profound sad days” will remind me why there is a Stepping Stone Hospice and why I do, what I do, at Stepping Stone Hospice.

I do believe in tomorrow.

I do believe that this will be a year of healing.

I do believe that it will be a year of recovery – at every level.

Stepping Stone Hospice & Care Services E-Hospice Interview

1423 days

Boys lying with Vic before Chris' arrival

I have survived 1423 days (3 years, 10 months, 23 days) without my beloved child.

It has become easier. I am used to the pain. I am at peace with the fact that my child’s suffering is over. I honor her memory every day of my life. Every day, when I walk through the In-Patient-Unit of Stepping Stone Hospice I thank her for her selfless request that “no-one should suffer the way she did”.

Families talk to me about my brave little warrior and thank me. Thank me? I don’t think so. I would never have had the guts to start a Hospice. I would still be lying in my bed grieving.

Life has been hard without Vic. It was so difficult getting my life back on track after she died. I have missed her wisdom and guidance with the boys, I have resented the fact that I have become a backup mother to my precious grandsons. I wanted to be a mother and a grandmother. I hated being a bereaved mother. I still do.

Our lives have settled. Until May this year.

On the 31st of May, I received a phone call from Jared (eldest grandson) to tell me his father had died. I was filled with terror, heartache, and fear. My go-to person was no longer around to advise me and run interference with the boys.

I was in England at the time of Colin’s death. I flew back the same afternoon. All I can remember of the flight was how my face ached from crying. I was heartbroken leaving my little UK granddaughters behind. They sobbed. I sobbed. We all sobbed. I dreaded arriving in South Africa and facing the boys’ heartache. I was consumed with guilt that I wasn’t with them on that horrible day.

I arrived in South Africa to meet two dazed young men. I had to go and identify Colin at the mortuary and once again arrange the funeral of a child.

On the surface, the boys were brave and yet so devastated. I was heartbroken. At a certain level, Colin’s funeral was more difficult than Vic’s. Colin was young and healthy. He had truly connected with the boys and they loved spending time with him and his new family to be. They loved being part of a family. Vic had been ill for so many years and her suffering inhuman. I was relieved that her suffering was over.

But Colin was so young and alive. He had so much to live for. So much to give. He was at peace with his life and in love with a wonderful woman.

The day Colin’s clothes were brought into Stepping Stone Hospice, as a donation, I had a total meltdown. It was the second time a child of mine’s clothes were donated to Hospice.

Yet, time passed and I am once again getting used to the pain. That horrible empty feeling in your heart when you suffer a great loss…

I read many blogs and I often wondered why people remained stuck in their grief. I wondered why they were unable to move forward…

Vic’s eldest son started displaying signs of PTS (Post-traumatic stress). He suffers from panic attacks and stopped wanting to be home. He was angry with the world and especially me.

There are many reasons for this and it is not for me to write about his reasons.

What I am able to write about is the fact that Jared was trying so hard to protect his little brother and I from the pain and trauma of Vic’s death that he never dealt with it for himself. He spread his angel wings over us and never stopped looking to see whether we are okay or not.

Now this beautiful, “parentified” young man is caught up in a cycle of trying to deal with the layers of grief resulting from his parents’ deaths. He is working so hard to learn how to deal with his complicated/compound grief. He is brave and beautiful. He is in so much pain.

But, I know that in time he will heal. He is no longer avoiding his grief. He is dealing with the cancer in his heart eating away at the very grain of his soul.

I pray that I will have the wisdom to guide him through this difficult time in his life as he guided his brother and me through the first years after Vic’s passing. I pray that he will always remember my love for him. I pray that I will learn to cope with my guilt of not protecting him from something that I was aware of…

I now know why people remain locked into that cycle of grief.

https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/

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…”

so sick

Vic in 2007

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…

Vic and her boys.

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 16^th 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 1^st of January 2013 and Vic died on the 18^th of January. Our first patient. Our first death.

…..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

Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube

This video touched me so deeply at every level.

I was petrified of holding Vic as a baby. I was even more petrified of anyone else holding my baby. I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks. She sucked her little thumb and fractured it… By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful. Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18^th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married. When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean… Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life. She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up. Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless. I could do nothing for my child. I had been relegated from being “the Mother” to being “the mother-in-law”. My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

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Mother found pushing a dead toddler on a park swing…

I read a heartbreaking article that truly hit home

“A mother was discovered pushing her dead son in a swing late last week. The unnamed woman is believed to have spent hours with the toddler’s body at a local park in Maryland—she had possibly been there with the dead child for the entire night, according to neighbors. Police were called after concerned neighbors noticed the mother at Wills Memorial Park in La Plata for “an unusually long time.” “ http://firsttoknow.com/watch-mother-found-pushing-dead-toddler-on-park-swings/?utm_source=ftk_nwsltrF

More disturbing were the comments:

“People who are mentally unfit should never have children. My God this news of the father wanting custody set off this unfit mentally ill mother yet again. It is just to much strain for people who are mentally ill to bring up a child safely. The father is just as much to blame by marrying a mentally ill person in the first place to have children. God help them.”

“why are good baby given to bad mothers like this they dont deserve to have children I hope god punish her.”

Thank goodness that some sanity prevailed in some of the comments:

“I feel bad for the mother. When people grieve they can fall apart mentally, especially when a parent loses their child.”

“How do you know she was a bad mother? She was obviously in shock to be doing what she did. Aren’t you quick to judge?”

This is the world we live in. A world that consists of two sets of people… Those who have lost a child and know the devastation of mourning a child every single day of their lives and those who can pick up a phone and talk to a living child; who can go visit, hug and hold their child(ren).

The first will more than likely comment “why are good baby given to bad mothers like this they dont deserve to have children I hope god punish her.” and a parent who knows the devastation of losing a child will potentially comment “How do you know she was a bad mother? She was obviously in shock to be doing what she did. Aren’t you quick to judge?”

I know that Vic’s death left me reeling from pain, anger and loss. It was so hard letting her go. It was impossibly hard seeing her little body leave home for the last time.

Yet, some Facebook friends will pass snide comments about people posting photographs on their Facebook pages of the dead child and soppy messages… Yes, I am guilty. I post photos of Vic and soppy messages that convey my longing for my beautiful little girl.

Unfriend me if I get up your nose. I will grieve whichever way I chose. Your child(ren) are alive and you have absolutely no idea of what true loss is.

My child is dead. I burn candles for her and sometimes I fall asleep holding a photograph of her. I have sat sobbing just hugging her ashes. Does that make me mentally unfit? No, I am just another grieving mother and you will never understand. And, I hope you never have to understand!

http://www.personal-growth-with-corinne-edwards.com/

https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/

https://tersiaburger.com/2013/01/24/i-heard-someone-wailing-it-was-a-terrible-sound/

https://tersiaburger.com/2013/01/26/st-josephs-lilies/

https://tersiaburger.com/2013/01/31/i-miss-you-angle-child/

Ebb and flow of grief…

How do we deal with life’s losses and move forward? People far wiser than I am, said that we never do get back to normal. That a time of numbness, confusion and uncertainty eventually merges into a new “normal”.

I am often filled with profound sadness over what will never be. Vic will never see her boys graduate. She will never have that mother and son dance at their weddings. She will never know the joy of being a grandparent.

Jared and I were chatting the other evening and he said “Most of the time I bury my sorrow. I try not to think how much I miss Mummy. But sometimes when I lie in bed the tears just start…”

I told him how guilty I feel because at first, in a perverse way, I enjoyed the freedom of snap decisions to go away for a weekend or dinner without having to make elaborate plans for Vic’s care.

The house is too big … too empty … too quiet. How can one tiny little person leave such a humongous void?

Are we moving forward? Yes, I believe we are. We are healing very slowly. We are functioning well in the “other” world. That world that has no understanding of our world. The boys are both excelling in their studies. They have lovely friends. They have good lives. But, they do not have their Mummy. It breaks my heart thinking how deprived they are of maturing under the loving care of their mother.

I read once that healing is a journey, not a destination or a point in time. I know we are scarred. When we light candles for my beautiful baby girl I know that grief will remain a part of our lives forever. But we will go with the ebb and flow of our grief – it is part of our journeys.

Navigating the Ebb and Flow of Grief Posted on June 28, 2013 by Maria Kubitz

Grief is fickle. Unpredictable. And indifferent to whatever mood I’m in. Most days my grief lies dormant under the activities of everyday life. Little triggers will continually remind me its there. A sad news story on the TV. A girl at the park who reminds me of my daughter. But I can go about my regular routines with no interruptions. Other times, the triggers are bigger, and the grief bubbles up and takes over my mood. Tears well up behind my eyes, ready to release at the first opportunity. My patience seems to evaporate and everyday tasks become cumbersome, meaningless, and even difficult. Usually the bursts of grief from larger triggers only last a few hours or at most a few days.

But sometimes it lingers and grows.

What I didn’t expect is that even coming on four years after her death, I still find myself in situations where grief becomes so overwhelming again that it feels like I’ve gone right back to the debilitating early days of grief. Feelings of sadness, pain, lethargy, dis-interest in things I normally enjoy. Going to work becomes a struggle. Even taking care of my kids feels like a burden. I know these periods require extra attention and care, and I navigate through the best I can, asking for support along the way. I just wonder if these episodes will ease over time, or if I should just expect them to become a permanent fixture of my “new normal” life?

If the death of my daughter has taught me anything — and it has taught me A LOT — it has taught me that we have more inner strength than we can ever imagine, and that with time, attention, and support, we can navigate through just about anything life might throw at us.

850 days

It is a mere 850 days since Vic died. 2 years and 4 months seems so short… 850 days seems far more representative of the longing. It seems “longer”….

I woke up this morning with tears pouring down my cheeks. I so longed to hold my child. I know that the boys remembered too. Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!” The first to “like” his post was his brother.

I imagined that the longing would get better. It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill. I always felt guilty at the “reprieves” I had when I was travelling for work. Now I would give anything and everything for just an extra minute with my child.

It was hard standing next to Vic’s bed hearing her cries of pain. It was even harder seeing the despair in the eyes of her precious boys when they stood next to their mom’s bed helpless to ease her pain and fears.

So often over the years I wanted to run away. In the end, when Vic cried from fear of dying, I felt the need to put an end to her suffering well up in me. I put my hands over my ears and screamed in my head.

Vic and her Dad — “Don’t leave me Daddy! I am scared!”

How do you answer your child when she cries “I am so scared”?

We have a patient at Hospice who vocalises her fear the way Vic did. Today I just held her. How do you still the fear of the unknown in a dying person? And NO!!!! It has nothing to do with religion. Everybody is scared.

From that dreaded moment when a patient is told they are terminally ill an avalanche of shock and fear hits them. It is called actually “named” – terminal fear. Vic (and Elizabeth*) fear dying, pain, saying goodbye, loss of control and mostly all-encompassing the fear of the unknown.

Vic’s overwhelming fear was that people would forget her – that she would be replaced…. Vic questioned her life’s worth. She did not work and in her mind that meant it that she had not achieved anything. That she would leave no legacy. No matter how many times we reassured her that she inspired hundreds of people worldwide, the fear never left. I hope that she now knows how powerful her legacy is! That hundreds of patients have benefitted from her death wish and, most importantly, that her sons are her true legacy.

I have witnessed that grieving starts the moment of handing down the sentence. It is a long and hard journey for the dying person, their loved ones and friends.

And, today that Elizabeth’s* fear rests heavy on my heart, I know that we will provide her a safe haven where she can relax into death. We will hold her hand and guide her family through this dreadful trauma of saying goodbye to a wife, mother, grandmother and friend.

I pray for wisdom and strength to handle the déjà vu of Elizabeth’s* final journey.

and with my last dying breath I say I love you….

This morning I came across a beautiful quote and it brought back a flood of memories of how hard Vic fought to live. Vic was born with a passion for living. Vic so desperately wanted to live. She fought for every second of her life. She battled pain, indignity, 81 abdominal surgeries…She lived with her impending death for years.

Please hear what I am writing – Vic LIVED

It is so difficult to read the journal which she kept meticiously. She recorded the cruel remarks that cut through her soul. I feel her pain and I am sure that if I had the pages foresically analysed there would be traces of tears on it. Vic’s tears….And yet, all the world ever saw was that beautiful smile of hers.

An entry from Vic's journal — An entry from Vic’s journal “OUR STORY”

Vic wanted her story told. She wanted people to know what is feels like to be cronically and terminally ill. She wanted the world to know how she experienced the switch from curative to palliative care. She wanted the world to know how helpless a sick person is. How vulnerable they are. She wanted to make a difference.

It is her one wish I have ignored so far. As you know I have stopped blogging for almost a year. I can no longer ignore her wish. As hard as it is I have to do it.

Reading her journal I was reminded of her passion for life. How incredibly brave she was. Now, it is my turn to be brave. I will write her story. I will celebrate her life and journey. I will do my best to articulate Vic’s pain and vulnerability.

I will honour her life and wish.

And the words that will echo in my ears will be her very last words ever… “I scream your name, but it’s too late…I’m on my way up the pearly stairway to heaven. I slowly open my eyes and with my last dying breath I say I love you.”

I hope she hears my whisper “I love you with every fiber of by body, mind and soul my precious Angel Child”

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