Butterflies
MICHELLE'S STORY


Michelle's Story told in Rhyme
The Forgotten Dream
Both Ways

 

Michelle's Story told mainly in Pictures
Photos of her life and a summary from birth to death
(WARNING - there are two photos of Michelle on this page. taken after she died.  If you are unable to accept that, please do not go to that page)

Michelle's Story told mainly in Text
The Story of Michelle's Life
written for a presentation to the Royal Commission on Genetic Modification
(WARNING - there are two photos of Michelle on this page. taken after she died.  If you are unable to accept that, please do not go to that page)

Michelle loved me playing Fur Elise to her on the piano.  I played it at her funeral.  That is why I have chosen that tune, which is played by eleven year old Yuko Ohigashi, follow the link here or at the bottom of this page..

The Forgotten Dream

Once long ago, I had a dream
A child, a sibling for the other
Hoped that it would be a girl
Didn't really want a brother
The baby came and was a girl
But not the girl I had imagined
Caused me shock and grief and pain
All my ecstasy was dimmed
This little child had Down Syndrome
A major heart defect as well
And other hidden problems too
That time alone was going to tell
I hurt inside but pressed right on
Nursing her was very hard
I did it though, surprised myself
But saddened that life dealt this card
Kept her healthy as could be
Gave her all my time and love
Then she had heart surgery
Things seemed settled from above
One year later things did change
Epilepsy shook us up
Not so often, not much trouble
Lived with it, no threat to us
So then again I was with child
We lost both fathers in a year
The fits, they started getting worse
We found it very hard to bear
She started drugs that didn't work
They made fits worse and worse and worse
I wondered how I'd cope at all
I thought epilepsy was a curse
The baby came and I could not
Believe she was a "normal" child
I went through anguish yet again
These feelings hurt and drove me wild
Gradually, I came to think
She was OK and those were fears
That made me feel that things were wrong
And caused me all those painful tears
But epileptic fits had changed
And now this child, she couldn't walk
And I began to think that now
This little child would never talk
So then we saw a specialist
Who wanted to put us at ease
And so did we....and never thinking
She could have Batten Disease
So off we went to have the tests
A shock in store to shake the flow
Our child would die and who knows when
The ultimate in hell, you know
I felt I couldn't deal with this
Without some care of listening kind
I rang for help and then it came
Accepting help, I didn't mind
And in the back of my active mind
I knew my baby also might
Have this rare genetic ill
A one in four chance caused my plight
I tell myself that three in four
Is more likely to be the way
But still the thought comes creeping in
Occasionally throughout each day
A healing child, my little one
She brings me joy to ease the pain
Of watching 'chelly slip away
The message here is very plain
I'm learning to enjoy each day
As best I can to get me through
What seems to be a treacherous path
Now what could anybody do?
I've learnt a lot from all of this
There are two sides to everything
Challenges I've overcome
Sure have brought some strengthening
I've found resources deep inside
I didn't know were hiding there
And still I will be finding more
To get me through the pathway here
And get through this, I know I will
I will survive what is to face
But not alone, I want to say -
With strong support I've set in place
So even though that long lost dream
Became a nightmare I endured
What I've found, inside myself
Will match a dream, please be assured
.
© Copyright Sharon K 1996

The next poem was written 4 days before Michelle died:

BOTH WAYS

She told me in a dream
She's worried for her Dad
He's having trouble letting go
'Cause of the times we've had
And Nana feels such pity
But doesn't know the score
I'm really very happy
I've never wanted more
And Andrea, my lovely sis'
She might feel very mad
Because of nasty feelings
She's feeling very sad
She is a lovely sister
She's done a lot for me
I can't begin to thank her....
So let's just let it be
And little Rachael will go far
Her mischief and her care
I'm really glad she came to us
I love having her here
My Nanny came to visit us
And then she went away
But Mum told me the reason why -
We'll meet again some day
Now, Karle gives her all to me
Her love, it feels so strong
I thank her for her times with me
I'm glad it's been so long
I'm glad she's found a friend in Rob
He'll help her deal with this
He's really very caring
I think they'll find some bliss
And now at last my lovely Mum
She's done so much for me
And done a lot for others, too
It's very plain to see
They all think I have taught them much
They think I've done it all
But what they do not realise is
What they gave ME this call!

© Copyright Sharon K 1996


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