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.

“Don’t leave me Daddy”

 

“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 SmithA 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.

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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.

 

Stuff


Today I started packing up Vic’s “things” …Tupperware, crockery, cutlery, whatnots… the stuff

I drank coffee from her favorite mug. I tried to crate the “stuff” into equal portions. I came across the boys’ plates, their little mugs, their christening gifts.  Vic did not have a lot of material things.  Eight dinner plates, eight side plates, and 8 dessert plates… unmatched glasses and hundreds of tokens of love.  She was so rich in love, memories, and stuff.  A suitcase full of notes from friends, literally hundreds of cards and thousands of photographs.

I sometimes think Vic thought she could take her stuff with her to heaven.

I pulled out a plastic container from the bottom of the pantry cupboard. I opened it. Someone had taken all the “stuff” off her bedside tables and the headboard the day she died and put it into a plastic crate.

“Someone” – Thank you!!! I cannot imagine that I would have had the strength to do it at the time.

The stuff in the plastic container that I found today brought me much comfort. Five years ago it may have unleashed more anger and bitterness in my heart.

Vic was at peace with her God. She sought guidance, strength, and comfort from Him. She did not ask for a cure anymore. She asked for strength…Not forgiveness but strength and guidance. Why not forgiveness – Vic had made peace with her God a long time before she died. She asked once and then it was in the past – forgiven.

She was childlike in her faith. She did not continuously ask for the same thing. She asked once and then believed that if God wanted her to have it, He would give it to her without her nagging. I remember once thinking that she is so accepting of her lousy life. She lived a life of “attitude of gratitude”.

What an example you were to the world and especially me. I strive for your serenity.  I am your biggest fan.

Love you Baby Girl

 

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