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.

Stepping Stone Hospice & Care Services E-Hospice Interview


1423 days


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

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

Her last words ever were “I love you Mommy”

Image (172)

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

The Baby Whisperer

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

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

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

A

…..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

 

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!

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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.

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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.

 

 

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…

IMG_5077
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.

Our Hearts Will Always Touch


Our Hearts Will Always Touch by Ranja Kujala (Changed)

When I laid there beside you,
Could you feel me there?
My arms were wrapped around you,
And I was stroking your hair.

I was talking about all the good times,
For me they were every single day.
I wanted you to feel love and comfort,
Be happy in some way.

I watched your every breath,
And prayed that each one wasn’t your last.
The time we got to share together,
Went by too quick…Too fast.

I wanted you to wake up,
Please Vic…Open your eyes.
Tell me this is a nightmare,
And not our goodbyes.

As your last breath grew closer,
We lay there peacefully together.
My heart continually breaking,
Because I wanted you forever.

Then there it was,
Your final breath of air.
I didn’t want to believe it,
It was so cruel and not fair.

I held your beautiful face,
And prayed you’d breath again.
I wasn’t ready for you to go,
I couldn’t admit that this was the end.

But then I realized that you were now in peace,
And not suffering anymore.
You were beginning the life of an Angel,
And your body would no longer be sore.

I held you close and squeezed you tight,
And tried to say goodbye.
I’ve lost my child and my number one best friend,
All my heart could do is cry.

I slowly got up,
I wanted so much to stay.
I leaned over and gave you one more kiss,
It was so hard to walk away.

Vic you were my entire world,
And I miss you so very much.
I wish I could feel your loveable cuddle,
And your soft and gentle touch.

But for now I have to wait,
Until we meet again.
You will always be in my heart and thoughts,
My precious child and best friend.

Always and Forever,
Our hearts will always touch.
Always and Forever,
Baby girl Mommy loves you so much

Source: http://www.familyfriendpoems.com/poem/our-hearts-will-always-touch#ixzz3EphiuOal
Family Friend Poems

In memory of Vicky by Dennis McHale


Tonight I visited the blog of a brilliant blogger Dennis McHale who writes hauntingly beautiful poetry.  I read through a number of his poems, very aware of the man own personal pain, when I came across this tribute to Vic that Dennis posted on the 2nd of May 2013.  Reading it, I was as touched as I was then…  Thank you Dennis.

I hope that one day I will read happiness in your words.

MAY 2, 2013

In Memory of Vicky

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This poem is dedicated to my dear friend “tersiaburger”
In memory of her beloved daughter, Vicky.

——————————————————————-

You and I
are touched by one star.

Wherever you are
we stand together in one light
which no depth or height or distance
can ever dim.

Wherever you are
your light shines;
past time and space
past flesh to thought,
I feel your power.

Wherever you go
the day will dawn
and the star will appear;
for you are a child of this light
and it fosters your heavenly dreams.

In this light, I have found ways
to heal, to bind up,
to tear down the feeble structures
of fear of your absence has
carelessly constructed within me.

You and I
are touched by one star.

In its glowing embrace
we find our true selves;
we find our peace.

Today I may stand alone,

missing you with all my heart
be I stand strong.
Through the corridors of our courage
you have helped me to
discover those eternal lines
of love within myself;
my birthright discovered because

Vicky and I are
touched by one star.

http://dlmchale.com/2013/05/02/in-memory-of-vicky/

 

Unimaginable pain


When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces.  But, the pain is no longer that same raw pain.  Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain.  At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”.  It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding.  And yet, there any many things I can no longer remember.  I read today that it is my body is protecting me… I am grateful for it.  I am glad that I have forgotten some of the horror of Vic’s death.  I am clinging to the good days.

I went away with two friends last weekend.  It was amazing.  We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another.  The empathy stemmed from knowledge.

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On our first night in the mountains I dreamt of maggots.  There were maggots everywhere.  I tried to kill them, but they kept crawling out of everywhere.  I was scared and nauseous.  I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death.  I fear dying in pain and indignity.  I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice.  My loved ones must kiss me goodbye and leave.  I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life.  So much has changed in the past 516 days.  I have lost more than my child.  I have lost being a mother.  I lost my best friend.  We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight.  I have lost others that I love because our pain collided.

Yet I am alive.  My life goes on despite the terrible void that Vic’s death left.  The boys are so amazing.  Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief.  The firsts never end.  Every morning the pain starts all over again.  The grieving never ends.

At a funeral I attended today the minister said “Grieve hard”.

I do.

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16 months of Hospice and two special angels in Heaven


In the early hours of my Dad’s 3rd anniversary I feel compelled to give some feedback on Stepping Stone Hospice.

Sixteen months ago, with unbelievable arrogance we started Stepping Stone Hospice. What a journey it has been. We started working from my home with a registered palliative care sister, a wheelchair and very little else.

Sixteen months later we have not only moved into a lovely building but we have increased our In-Patient-Unit for 4 beds, we employ 2 nurses, a staff nurse and a team of 13 palliative trained caseworkers. We have plans to extend the building so we can increase the In-Patient-Unit to 10 beds. Every piece of furniture and equipment was donated by the community and to date we have not asked anyone for a single cent. There have been months where we had to pay the nursing staff from our own pockets, but we have never turned away a patient.

We have received beautiful letters of gratitude, established a memorial rose garden and a reputation as a great Hospice.

I am in total awe of the phenomenal nursing staff who go beyond the call of duty. They will go and sit with a family and their dying loved one at 3am in the morning… On Saturdays and Sundays they interrupt their lives to care for the destitute dying in our community.

We have an amazing group of volunteer caregivers who sacrifice their time to guide the families through the final stages of their loved ones journeys. We cry with the families, hold their hands and sing for the dying.

I am so grateful for this amazing organisation and everyone who is involved with it. I am grateful that Vic’s legacy has made a difference to other end-stage Alzheimer patients. I remember my precious father who fought with every fibre of his body to hold onto his memories, his mind, his family….

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Time heals as the season changes


New emotions are raw and intense. Think back to when you fell in love for the first time – the butterflies, the beauty in everything….. Colours were more vibrant and life soared through your veins. In a new love we are more forgiving, nicer, gentler… One’s whole life revolves around the other person.

As time marches on, the balance is restored. We settle down to realising that nothing and nobody is perfect and/or everlasting. Sadly life forces the big picture back into our lives, our minds, our vision….

It is the same with grief.

Time heals as the seasons change. Reason does not heal.

When Vic died my entire existence was filled with pain, tears and longing. There was guilt and self-recrimination. It used to echo through my mind “what could I have done different?”  Madness lurked in my mind.

Four hundred and seventy-four days later I still grieve. I still cry. I still feel as if I am losing my mind at times…

The intensity that I experienced immediately after Vic’s death has started diminishing and become softer, gentler… I often sit with a gentle smile on my face remembering Vic as a cute baby, a funny toddler, a difficult teenager and a precious friend, daughter and mother of my grandchildren. I page through old photos and sometimes I laugh out loud at the memories.

Life has started re-emerging. My grief is not less – I have just become used to it. My grief has settled into my heart as snugly as old slippers settle around tired feet. I have grown accustomed to the void in my life.

Heartache has become a part of my life. I feel the sadness in my eyes and smile. Yet I have learnt to laugh again.

Life has gone on… The seasons are changing – again…..

 

 

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Tom Attwater Is Dying. His Daughter Might Die, Too. The Letter He Left For Her Is Unforgettable.


I found this on Len Carver’s Kindness Blog.  This is about a brave young man fighting to keep his daughter alive.  Please repost!  If you can please donate to his worthy cause.  Posted on February 12, 2014 by Kindnessblog Smith

Tom Attwater is dying of a brain tumor, but he isn’t worried about his cancer. Instead, he is trying to save his 5 year-old daughter from her own.

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Tom Attwater with daughter Kelli and wife Joely

He has vowed to raise approximately $820,200.00 for her cancer treatment, even if he wouldn’t be around to see her go through it.

Now Tom is almost half way to his fundraising target he is more adamant than ever to reach it. Tragically his deadline is short as his latest scans show his brain tumour is growing.

He says: “These days people make bucket lists, and the very top of mine – the one that matters most – is raising money to make sure Kelli gets the medical help she might need.

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“Some people have advised me to slow down and concentrate on enjoying the rest of my days. But how can I knowing Kelli’s bright life might be cut short?

“Fundraising is a lot of hard work, especially on days when I feel too poorly to get out of bed. But I honestly feel I can’t relax until I know Kelli can have the best chance of a long and full life. I’ve run out of chances, luck and time but have had a wonderful life. So if I drop dead tomorrow, I know I will have done my best for Kelli.”

Tom and Kelli Attwater

Kelli is only 5 years-old, but she has already beat the disease twice. She is likely to relapse and need treatment in the United States, so Tom is dedicated to leaving a legacy behind for her, as well as this touching letter. Read it below:

Darling Kelli,

I’m so sorry I will not get to see you grow up as I so want to. Please don’t blame people or the world for this. A lot of life is simply luck and mine is running out.

I wish I had the words to make you feel better. I wish I didn’t have cancer and you didn’t have to see me in pain as you often do now. I wish so many things were different but they are not.

Most dads and daughters have decades to chat around the kitchen table, their hands warmed by mugs of coffee, as the dad dishes out advice and their girls no doubt roll their eyes. We don’t have that time. I won’t be able to drop you off on your first day at big school, pick you up after your first date, hold you when your heart hurts or cheer when you graduate.

But while your old dad is still around I thought I’d try to give you some life advice in one go. I hope it gives you some comfort. I hope cancer never returns so that your life is long, fulfilled and happy.

School Everyone will say it’s vital to work hard at school. Hopefully you’ll always do your best. I did well at school but did it do me much good in life? Not really. School work IS important, but make sure you have fun too.

Boys At the moment you don’t make much distinction between girls and boys and see all children as friends. That’s typical of your sweet nature. But Kel, that will change as you get older. You might see them as stinky, pesky classmates in a few years’ time. But, probably at secondary school, you’ll realise they can be quite nice.

You’ll have boyfriends when you’re older – MUCH older hopefully! – and I won’t be here to grill them about their intentions. So here’s some advice from your old man. It’s very hard to describe how it feels to really be in love. You might remember seeing me and your mum laughing together and cuddling on the sofa, and once the love hearts and flowers fade that’s what real love looks like. Have fun finding it.

Always choose boys with gen­tlemanly values, manners and respect. Imag­ine them having tea and a chat with our family around our table and if you think they’ll fit in, you have found a decent young man.

Sadly, you will have your heart broken one day. It hurts like hell and will feel like the end of the world. But you will get over it. And even if a romance doesn’t work out, try to be kind. Boys have feelings too. Lastly, if you have a special boy pal who is always there for you when boyfriends come and go, don’t take him for granted. Don’t overlook him. He might really care for you.

Marriage I often dreamt about your wedding day and imagined filling up with tears as I walked you down the aisle before giving you away. I won’t be able to do that Kelli. Sorry sweetheart. But I will be looking over your shoulder on that day, proud and happy you have found a special someone to love you and care for you.

I wonder if you will play what you call “the family song” (which is really I’ll Be There by The Jackson 5). It meant so much to me and my brother and sister growing up, and I know it does to you too. I’ll be there on your wedding day in spirit.

Mummy You and your mum will argue at times, especially when you’re a teenager. Please remember she adores you and wants the best for you. Give Mummy a hug when she is feeling sad and help each other get through any horrible times when I am gone. When you’re a teenager you might think your friends are right and your mum is wrong. But she has to make hard decisions for you and, more than any friend you’ll ever have, has your interests at heart. Treat her well.

Family Nothing is more important than family and the values they give us. Nothing.

Friends Treat people as they treat you. Be nice to anyone who helps you, always. Bullying is horrible – never become one.

Christmas & birthdays On your first Christmas without me, I’d love if you and Mummy would light a candle and remember me for a few minutes. It would be great if you two did the monkey dance together. Jumping around shaking our bottoms always made us laugh. That’s something to make me smile from up above. I’d also love if you visit my parents on Boxing Day. They will be hurting too.

I’ve given Nanny Sue presents for all your birthdays. I wish I could be there to see you open them. Hopefully you will like everything as it’s hard to imagine you at 10, 15, 20. I wonder if you’ll still like One Direction. I wonder if they’ll still make you dance around the living room.

Career You were two when you told me you wanted to be a “princess astronaut” so you could wear nice dresses and find new planets. You might now realise that’s not possible. But so many things ARE possible for you, darling. Do what makes you happy and that you enjoy. If you do so, life suddenly becomes much, much easier.

You may need to start a few different careers to find the one you enjoy, but so be it. One life, one chance.

Manners Always remember your please and thank-yous. The reason Mummy and I drum manners into you is because they will help you throughout your life. Always be courteous, especially to elders. Never put a knife in your mouth. Remember to write thank-you letters for gifts of kindness as it is always nice to act with grace and gratitude. (And please note that poo jokes are only funny when you are five, you cheeky girl!)

Learn to drive Most dads teach their daughters to drive and usually fall out in the process. Make sure you learn how to drive as soon you can – it opens up the world for you. Also, make sure Mummy doesn’t teach you (just joking, Joely).

Travel abroad It’s a cliche to say travel broadens the mind, but it’s true. See as much of the world as you can. But never on a motorbike (too dangerous).

Be happy You never laugh at 50%: you always laugh at 100%. Your laugh takes over your whole body and is highly infectious. I hope you never lose that. There is no point in asking you not to be sad when I go. I know you will be, princess. And I wish I could be there to wrap my arms around you and snuggle you until you smile again. Remember the Eeyore teddy I bought you from a charity shop? You said you’d keep him safe and cuddle him when you miss me. That’s a great idea. You can feel sad and use it as a driving force throughout your life. Or you can just be sad. You know which one I hope you choose.

Be charitable Please give to charities. Charities have been good to you and I. You’ll probably always remember our trip to Disneyland. But I’ll never forget the sacrifices people made to pay for your healthcare if ever cancer returns. Elderly people sent prayer cards and £10 notes they couldn’t afford. Heads were shaved, miles were run, thousands were raised. All for you. It’s important to pay back. Doing good deeds uplifts the soul. Never forget there are people worse off than you who you can help.

Remember your life motto Always keep trying. You might remember that I taught you to say “giving up is for losers”. I failed a number of times in my life but never gave up. Kelli, never give up.

Believe in yourself In life, many people will say you cannot do things. You make up your mind. Can you? Do you want to? Big challenges involve risks so make smart choices. Those who told me I couldn’t do certain things didn’t want me to do them. If you want something, it is nearly always possible, so do your best. I’m sure there’s a hell of a lot you can achieve!

I know you will make me proud and do something great in my memory. I know you can do it – so let’s start now.

And finally… Thank you for being you, Kelli. Thank you for paying me the biggest compliment of all time by calling me Daddy. Having you as my daughter is the greatest honour of my life. Thank you for teaching me more about love and happiness than any other person.

Enjoy your life. Don’t rush through it. I will be waiting.

All my love, always, to you princess and to Mummy,

Daddy xxxxxxxxxxTom and Kelli AttwaterIf you would like to donate to help save Kelli’s young life, visit her Just Giving page. It’s not fair that Kelli and her mom will be losing Tom so soon… but it’s even worse to know that young Kelli has her own big battles to fight.

Source: Just Giving / Help Kelli

Tom and Kelli Attwater

Please share Tom’s letter with others. Help us spread the word and save Kelli.

Sources: Daily Mirror & ViralFury