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

Vic’s 3rd birthday in Heaven

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

It was difficult….

It was the most difficult birthday to date…..

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

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

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

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

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

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

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

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

The death of a child is life changing.

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

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

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

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”

My soul mourns my child

This post has been sitting in my Drafts since the 23 of November 2014. This morning I was told that my grieving is isolating me from the world… So be it. I lost my child and she deserves to be mourned. If people cannot cope they must simply just stay out of my life. I will not invade theirs… So if I offend someone it is tough. Once you have walked my journey you are welcome to criticise. Remember to hug your children – I never thought Vic would die. Shit happens.

It is 671 days since Vic died.

I have not blogged in a while. I stopped because I felt too exposed. People were reading my blog and “using” my emotions against me. My public grief became a weapon to be used in dealing with me.

I have received a number of emails from some of my blogger friends asking me whether I have started a new blog. I haven’t. I have missed blogging.

Blogging to me provides me access to a network of people who have experienced the loss of a child. If one has not lost a child you will never understand the pain thereof. It is grief that no one can begin to understand. I read other mothers blogs and their words are my words.

We have had a number of milestones.

I have thrown myself into Stepping Stone Hospice. I have grown as a person. My heart has been broken by the deaths of precious patients’ and the pain of their families. I have made new friends only to lose them weeks later. I have stood next to close on a 100 death beds this year.

Jon-Daniel turned 16. Vic left a box of party goods to be used for his 16^th birthday. I opened the box, for the 1^st time after her death, and found the polystyrene “Happy 16^th birthday” lettering; party poppers, balloons. Vic was always very set on being fair. What she did for the one she would do for the other. She set up Jared’s 16^th birthday party. She left the same for her baby.….. A final act of love for her precious son.

There are no further birthday boxes prepared for the boys. She has left 18^th and 21^st birthday gifts; Jon-Daniels confirmation candles and their 21^st keys. But no further party goods.

On the 17^th of October 2014 Jared attended his Matric Farewell (prom). Exactly 22 years after Vic’s Matric Farewell. He wrote on his Facebook that it was hard to be excited about

He was so handsome and his little girlfriend looked beautiful. Vic would have been so proud of her son! I know that she was there but I also know that Jared would have given anything to have her physically presence…. He would have wanted her to straighten his bow tie and flaff with his hair. She would have cried and insisted on 100’s of photos.

I vividly remembered Vic’s farewell and how exquisitely beautiful she looked. I remembered how careful I was when I helped her dress because her skin marked so easily and we did not want red marks spoiling the evening for her. I remembered her and Gia giggling whilst they were getting ready for the Big Event. I remembered my pride looking at my little princess…

I slept very badly that evening because I actually remember that his mommy was very hung-over the morning after her farewell…. He arrived home in the early hours of the morning and he was sober! I could not have been prouder.

Now Jared is writing his school exams. I remember how I fought with Vic to study hard and get her marks up. I remember the frustration of knowing that Vic was not performing to her ability. She only did enough to pass comfortably. I realized then that all she ever wanted to be was a mommy. It was hard to accept. The dreams that I had for her were exactly that – my dreams.

Vic had no ambition to become a doctor or an advocate or even politician. She started thinking up her children’s names when she was 4 or 5 years old. When she was old enough to draw she “designed” her wedding gown. It was hard to accept.

Vic and I were so opposite to one another. I am ambitious and driven. Vic was content to live…

So, here I am on my knees again hoping and praying that Jared’s marks will be good enough for him to gain university entrance. I gave him the letter Vic wrote him…the letter to be given to him just before his final school exams. I was petrified that it would upset him and affect his mental state adversely. He was thrilled and quietly said that it was so nice getting a letter from her and being able to read her words. He said that he missed her little notes… and her hugs.

When I heard his words I felt his pain and loss all over again.

As time passes it is becoming more difficult. Maybe because people are “fed-up” with my grieving. They are impatient with me and want me to forget and accept. They become frustrated because I try and find every excuse to mention Vic’s name. Their empathy has switched to impatience.

And, I don’t care!

My soul is grieving for Vic. The pain has travelled so much further than my heart. It has filled my body and soul to the core. I want my child back. I want to hear her laugh. I want to see her smile. I want to feel her hugs. I want to hear her voice. I want to be a mommy again. I want to be a grandmother again. I want my life back.

Two years today

Our last coffee shop outing... — Our last coffee shop outing…

My precious Angel Child

Two years ago I lay next to you listening to your laboured 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 hell hole 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…

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

Time to say goodbye

Time to say Goodbye is a beautiful song and I especially enjoy the André Bochelli and Sarah Brightman version. It was the boys and my theme song on this holiday. A Time to Say Goodbye and heal….

As we toured Europe we lived Vic’s dream. It was her dream to go to Italy, stand in the Cistern Chapel, drink cuppachino’s on the streets of Rome, wander through the Christmas Mart stalls savouring the smell of Gluhwein and melted cheese….

I am filled with profound sadness every time I think of my child. Even if she lived Vic would never have been able to make the trip. The flight would have been too long, the cobblestone streets impossible for her wheelchair, the bus trips too long…

I cried when I saw the Pietà in the Cistern Chapel. This beautiful piece of art in a convoluted way symbolised Vic and my lives…

Both Mary and I were child brides. She was much younger than I was when she gave birth to Jesus – it is written that Mary was 12 years old at the time of her Son’s birth. Her child filled with wisdom and teaching as was mine… I once again realised, on this trip, how infinitely wise Vic was. She knew that I would have to remove myself from everyday life to heal.

She made me promise to do this trip with the boys.

Looking at the Pietà I saw a mother holding the body of her lifeless child. Tears filled my soul when I remembered holding the body of my lifeless child. For a fleeting moment I felt the heat that radiated from her fever wracked little body. I could hear the thundering silence from her breathing that had stopped…

I saw the lonely sadness of a mother isolated from the world in her grief. I recognised that isolation that I experienced at the second of Vicky’s death.

I stood there and realised that it will never change. I will always be isolated in my grief and longing for the child that I lived for. No one in the world could possibly love her the way I did. She was blood of my blood.

She loved her boys the way I loved her. She loved her boys with every fibre in her body. Her thoughts, fears and sorrow centred on her sons until she breathed her last breath. The blood of her blood. Her future…

Standing in front of the Pietà I realised that the closest bond is the bond between a mother and a child. Not a child and a mother…. Children move on and live for their children

Walking the streets of Europe I was filled with an all-consuming anger. Anger at God, anger at careless doctors; angry at a horrific disease called Osteogenesis Imperfecta. I was angry at the fact that my child was robbed. Robbed of a life with her boys. That I was robbed of a lifetime with my child.

As the old Year is edging towards the New I am filled with trepidation and horrific sadness. Not only for my Vic but for the many who crossed my path this year and who are enfolded in their own grief.

So much pain, longing and sadness as we look to starting another year without our loved ones.

I have survived my birthday, Christmas Eve, Christmas Day and Jared’s birthday. I have cried on my own, in the shower, in shops. I have been filled with rage and despair when I saw all the Christmas cards “For my Daughter”… I will never buy another card for my precious child. I will never be able to open gifts with her under the Christmas tree. Nothing will ever be the same again.

In three weeks’ time it will be Vic’s 2 year anniversary. Two long years without my child, my best friend…

I read that it gets worse as time goes by. It does get worse. The raw sadness has dissolved into a steady all-consuming pain. The longing to hold her one more time overwhelming.

And, although I know that it is Time to Say Goodbye I know I will never move on.

Wave Of Emotions ©Stacy Lynn Stiles

A tidal wave of emotions,
have sent my soul out to sea.
Crashing currents submersing,
what once was you and me.

Drifting afar distantly,
a glimpse of precious time.
While I held you close to me,
singing your favourite rhyme.

Rocking gently back and forth,
arms encircling you whole.
Lips pressed upon sweet innocence,
your cries I did console.

Praying the Lord may keep you;
wash your troubles away.
Hoping a bond forever remains,
the same tomorrow as today.

Splashing scents of adorable purity;
upon your mother’s face.
I draw you closer, your tiny being;
and even tighter I embrace.

Consumed with pure admiration,
at the woman you’ve became.
Beautiful imperfections,
your absence chastised me numb.

Although I know you had to,
spread those vast angelic wings.
I still can hear the laughter,
of a child’s heart that proudly sings.

These crashing, violent riptides;
will soon turn a peaceful wave.
Knowing the life I gave you,
is the life in me which you did save.

This current of my heart, is perfectly;
in synch with every beat.
A perfect bond between us;
without your love, I’m incomplete.

http://www.familyfriendpoems.com/poem/tidal-wave-of-emotions

Heavens Door

486 days…

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

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

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

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

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

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

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

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

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

I saw your teardrops fall

I saw your tear drops fall
I heard you cry my name
Mommy I love you As I released you from your pain

I watched as you lay in your bed
fearful of the end
I heard your whispered words
as you prayed for release from pain

every day for you was painful
each breath, each step you took
but filled with sadness I knew
your life was at an end

I held you with all my love
as I always used to do it was hard to see you in such pain as life slowly ebbed out of you

although our lives journeys
have bid us to be apart
I am with you, you are with me
you are always in my heart Love always

Mommy

One death, one funeral, one dying, one day….

Friday morning, as the first rays of the new day peeped through the clouds, a brave young mother breathed her last breath. She was surrounded by her mother, her two daughters, her ex-husband and a friend… Seconds earlier her mom was whispering words of love to her. Telling her it is okay to go… Friday afternoon I attended the funeral of another brave young mother who had died at Stepping Stone. She died with her mom and Hospice volunteers next to her bed. Earlier we had sung for her, prayed for her… Her family could not bear to see her dying and abandoned her and her mom in her final days. This brave young woman had a beautiful smile on her lips when the undertakers arrived to remove her cancer ravished body. At the funeral pink balloons were sent into the sky

Friday evening I stood in the room of a father and husband who was dying. The youngest son sitting slumped in a chair. His eyes red and swollen. At the foot end of the bed a stepson smelling of alcohol. “Had a couple of beers tonight Pop. At least four for you” he said. “He was a man’s man. He came home drunk every night of his life. He lived his life! He provided well for my mom. He worked and played hard.” he said with admiration in his voice… My thoughts went back to earlier that day when the dying man’s wife tried to hug him. “F…. off… F…. off” he told her. His wife wept for him. She stayed with him. She will mourn for him.

Rest in Peace Angel Child

Yesterday the sun set on our tears and longing. This morning I lay awake watching the sun send it first rays through the silhouette of the oak tree in our garden.

“Rays of hope” I thought.

I lay there, my eyes still heavy with tears and sleep thinking how grateful I am that my child’s suffering is over…

Yesterday was a day filled with selfish sadness. All I could think of was how much I miss Vic; how empty my life is; how much pain we are in… For one day I “forgot” her terrible suffering. Her tears of pain and frustration. This morning I thought back to Vic vomiting pure, bright red blood, crying “Mommy I broke another vertebrae”.

This morning I remembered that Vic had absolutely no quality of life. I remembered my fear that her suffering would never end… I remembered my prayers, pleading with God to end Vic’s suffering.

So, today I will allow peace back into my heart. I will do my best to be a good back-up mommy to the boys. I will try to live with my pain. And when sadness threatens to overwhelm me I will force my mind back to Vic’s words “I can’t do this anymore”. I will remember the indignity that she lived; her tears…

I will remember my baby girl’s laugh; her beautiful eyes; the rich texture of her hair. I will honour her pure heart, compassion and goodness.

I will celebrate the fact that Vic is now free of pain, indignity and loneliness. I will visualize Vic running free in Heaven.

Rest in Peace my Angel Child. You are ALWAYS in my heart.

One year today

My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing. If feels as if it has been a lifetime since I held you in my arms. It feels as if I have cried an ocean of tears.

In the past year I have aged. I have gained weight. I have existed. A year ago my life ended. The boys and I still burn candles for you.

I am still filled with rage. I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity. I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you. I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons. Thank you for remaining my little girl through-out your life. Thank you for fighting for so long. You were such a warrior!

I thank God that you came home to die. I thank God that I had the privilege of caring for you. I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting. As much as I miss your laugh I do not miss your pain filled tears. I am grateful precious baby that your suffering is over.

I miss your company. I miss our late night chats, drinking untold cups of tea/coffee. I miss your text messages, your telephone calls, your shuffling footsteps down the passage… the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter. I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives. Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

Happy Birthday Jared

One year ago Vic was around to celebrate Jared’s birthday. It was a milestone filled with sadness. We all knew that Vic would not celebrate his next birthday.