Introducing Michelle
Born at home, 29th March 1991
Down Syndrome & AV Canal defect
Transferred to hospital because of feeding difficulty
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MICHELLE I
What joy you bring into my world
Tiny baby of the light
I wish that I could be with you
All the day and all the night
All the ups and all the downs
Confuse my mind, exhaust my being
But when I hold you in my arms
All the life comes back to me
What lies in store for us to face
I cannot know or hope to guess
I only know that I love you
And what will be, time will assess
Please stay with me, is what I cry
Don't leave me now that we have met
Already you have brought me much
Oh dear Michelle, please don't go yet.
Copyright Sharon K. 1991
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Michelle in hospital with me for 3 weeks, the goal to establish breastfeeding
without tubes and bottles (took 7 weeks in total, the hardest thing
I'd ever done)
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Michelle's first birthday, 29th March 1992 |
| Heart surgery, July 1993, at age 2 years, 4 months, after waiting
19 months on the waiting list, watching her health decline |
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By age 3, Michelle was using about 30 signs in sign language, saying
a few words, climbing and walking. |
| In August 1994, Michelle had 3 seizures of different kinds in a space
of 6 weeks. Assumed because of heart surgery and we could deal with
it. Conceived 3rd child. During the pregnancy the fits increased
dramatically peaking at 36 fits in one day when I was 33 weeks pregnant.
Drugs caused fits to worsen or gave her adverse drug reactions.
It seemed like we were experimenting on her. |
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Baby was born June 13th 1995 at home. Her big sister
adored her. Michelle didn't appear to know she was there. |
Michelle was having myoclonic jerks, drop attacks, absences and tonic
clonic seizures
Falling back suddenly from sitting. Could no longer walk or crawl,
but could bottom shuffle
Needed a helmet to protect her head. Following a CT scan, EEG
and ECG saw a neurologist
Ordered an ERG (electroretinography) to be possibly followed by a rectal
biopsy to out rule Batten Disease
Turned 5, couldn't go to the local school with her sister
Accepted into the Carlson School for Cerebral Palsy - to help her regain
the skills she had lost.
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DEVASTATING NEWS
May 1996 - found out the devastating news that Michelle had
Late Infantile Batten Disease and that nothing could be done about
it. Also found out that her little sister, then 11 months old,
had a one in four chance of having been born with it too and that
the age of onset was 2 - 4. The next day, I phoned the Crisis
Centre for help and couldn’t speak enough to give my phone number.
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August 1996 - got someone to put wheels on the baby backpack so Michelle
could still use her legs to be mobile. She loved it! She could only
go sideways or backwards. Who cared? She was having fun! She
loved zooming around to Michael Jackson's History album. Physiotherapist
had not been able to find anything suitable. NZ Woman's Weekly
did an article on us. |
| October 1996. Had waited 3 months for a bathing aid. Unsuitable
when it came as her needs had changed. She hated being strapped,
lying backwards and sitting up she would fall about bashing her head on
the bars on the sides. Made our own "bath" for her with foam blocks
for support, rubber mat and strap. She loved it! |
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CONTRAST
This photo is out of date sequence but is to show the contrast
of how Michelle was a year before she died
November 1995 - at the zoo .....
a year later.......
November 1996, Michelle got a fever. I knew she was going
to die
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10 days later.......
Michelle couldn't swallow, was Cheyne-stoking, I'm sure she could
still see us
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25th November 1996 - Last photo taken of Michelle alive, with her
Nana |
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Warning:
at the foot of this page are two photos of Michelle after
she died. Do not scroll down past here if you may find that
difficult to handle.
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Michelle has just died in my arms
26th November 1996 - 3.20am |
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If I had loved her any less, the pain would not be so great.
The pain is meant to be there - it is a measure of my love for
Michelle
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A Shattered Dream
A child is born
A shattered dream
A mother's hopes
A baby's beam
A mother's hopes
A shattered life
A fading child
Relentless strife
A mother's hope
To find a cure
How much of this
Can she endure?
The fading hopes
The child has died
A mother's dreams
And hopes have lied.
Copyright © Sharon K. 2000
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