Michelle and her sister
at the same level!
I would like to share this "invention" we used three months before our
darling little girl, Michelle, died of Late Infantile Batten Disease. She
had lost her ability to sit unaided but I could see that she still had
strength in her legs. I
We got the baby backpack and took straps off it and got a wheel specialist to make a frame with six wheels on it to mount it on. Michelle was away laughing, literally. The man who made it was so touched that he had tears in his eyes and wouldn't charge us. She had Down Syndrome and was only 5 years 5 months at this time. She could only move backwards and sideways in it but it gave her a little independence and brought her down to the level of her two sisters, then aged 9 years, and 14 months. She only used it for a few months but what a difference it made to her quality of life!
Her little sister used to hold hands with her in it and rush off to get it for her when she could see we were going to use it. Very precious memories! The physiotherapist was very impressed and said "You were right" as if she'd thought it was a big waste of time. It definitely wasn't and the local newspaper and the New Zealand Woman's Weekly did an article on it.
Copyright © Sharon K 1998
I'd like to share what we did with Michelle to bath her. Our backs were damaged from the constant lifting and our bath was low. No "experts" who came had any bright ideas.
We waited 3 months for a "Bathing Aid" - a manual hoist and hammock system where Michelle had to lie back strapped in while she was lowered down. When we ordered it she could still sit up just, but by the time it got here she couldn't and she'd wobble around bashing her head on the sides. Besides that, she HATED being strapped in lying down. We were told to compromise" her quality of life because "our backs were going to last" -in other words, she wasn't! I was horrified by that attitude, so with my determination to do the best for our child and a bit of lateral thinking thrown in, and a lot of searching, it finally dawned on me that if we couldn't get her to the bath, the bath must come to her!
So I measured her and took my tape to the local plastics centre, and measured everything in sight and found a fishing crate to be the right size. Then the man who put the wheels on the baby backpack to make a "Wheelie" for her, made a frame for the fishing crate to sit in. I put a rubber bathmat in it, put the redundant waist strap from the baby backpack under her arms and around the back of the "bath", and blocks of dense packing foam between her hips and the sides of the crate. Hey Presto! She was happy and so were our backs.
Sadly, we only used it for a short time before she died. It had a spare
fishing crate underneath for storage of bath toys, so we used it at the
funeral for all the flowers. A double-decker flower trolley.
Copyright © Sharon K 1998
Michelle in the Wheelie Bath
We watch our little child decline
She's lost her way to move about
I knew that she still wanted to
She'd reach for something, then she'd pout
How it hurt me, when one day
She cried some tears that filled the room
I have to find a way, I thought
So great the impact of that boom
I wracked my brains until they hurt
Enlisted help from all with me
Then an idea came to us
A backpack, THAT could set her free
Mum heard on the radio
"We put wheels on anything"
I rang up Swinnocks, full of hope
And off I raced, and I did bring
Our baby backpack, "Here you are"
I told my story to the man
He turned in tears, he hid from me
I'd touched his heart, this man named Stan
He said he'd make a frame for it
I asked how long, he said "Today"
I asked how much, he said "Don't know"
But I'll look after you, my way
So after three, we ventured there
Michelle in tow to try it out
It took a moment, off she went
So happy she could move about
Then it tipped, so back it went
Into the workshop for more wheels
Once again, Michelle was off
Pushing with her little heels
And then the cost Stan wouldn't charge
He said this sight's reward enough
The caring that he showed to us
So kind inside and outside tough
He'll never know how much that act
Has made a difference to our lives
Our aim to help our dear Michelle
We'll treasure this, in our archives.
Copyright © Sharon K 1996
THE WHEELIE BATH
We waited for the bathing aid
In three months Michelle's needs had changed
No longer could she sit unaided
Now our plans were rearranged
Strapped in lying back, she hated
Jerked and tried to sit upright
Looking scared and powerless
Like she'd had an awful fright
So off I went to Royal Oak
To Payless Plastics, saw Kerry
Then off to Stan the "Wheelie Man"
A laundry basket, took with me
Thought if we cut that in half
And put a camping mattress in
And threaded straps right through the slots
Would give support and we might win
Alas the basket fell apart
So back to square one I then went
I put my thinking cap back on
What could support and still be bent?
In all the brochures that I saw
Equipment didn't fit the need
Most threw up their hands in horror
I'd already sewn a seed
My Mum-in-law by phone from Perth
Said "Can't you put the baby bath
Into the shower placed on a stand?"
"Too small" I said, but on that path -
I sauntered back to Royal Oak
A fishing crate became the hit
I rang up Stan the "Wheelie Man"
And asked "Could you put wheels on it?
So back to Swinnocks I did go
I took the crate and off I sped
"If we can't take her to the bath
The bath must come to her!" I said
So Stan the Man came forth again
He took the height that suited us
"A trolley we can make to fit
That can be done without a fuss"
So all was left, to find a way
To hold her up and stop her slipping
Packing foam, a rubber mat
We squashed them in and came out dripping
Still a need to stop her flopping
Another great idea I had
"We have a waist strap from the backpack
Using that won't be so bad
Because the backpack's now a "wheelie"
Helps our child to move around
This part's redundant, come, let's try it
In this bath, way off the ground!"
And Dear Michelle just loved her new bath
Sitting up and safe to play
Splashed and looked like she was happy
What a way to end our day!
Copyright © Sharon K 1996
When we first brought The Wheelie home, Michelle was laughing and so happy pushing herself backwards in it and we had the Michael Jackson CD History, playing. Michelle seemed to be moving in time to the music. We played "Heal the World" from that CD at her funeral as the lid was being put on the casket and as it was being carried out.
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