I Can Only See What I Can't Affect

Kerry Lambert

Description

Everyone has a story. There's not a person on Earth who hasn't been modified in their perception of everyone and everything around them by tragedy tainting the light of their soul. Our life plan as we see it is usually directed by things we can control - or think we can. The universe or gods might have other plans for us. This book is about a journey towards positivity from the depths of loss and despair. It's certainly not a life of beer and skittles bringing up a child with a disability, but it's not all tragedy either. It just takes a while to learn that.

Sujets

• Popular psychology

Informations

• Publié par: Austin Macauley Publishers
• Date de parution: 31 mai 2019
• Nombre de lectures: 0
• EAN13: 9781528955751
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

I Can Only See What I Can’t Affect
Kerry Lambert
Austin Macauley Publishers
2019-05-31
I Can Only See What I Can’t Affect About the Author About the Book Dedication Copyright Information The Cruelty of All You Watching Someone Else’s Path to Sorrow There Is Something Wrong with Our Baby The First Acknowledgement The Permanent Label Our Child of No Gain The Reaction of Others The Lights May Not Be On, but Somebody Is Home The Lights Come On When Nobody Is Watching Therapy Does Not Equate to Therapeutic Borderline Crossed In the Cavern of Self-Preservation The Eye of Discrimination Bath Time Bedlam Backpack of Agony Acid, Ulcers and Eczema in the Oesophagus Glaring Inadequacies The Cake of Hope Fell The Girl Has Humour Sexual Maturation at Five Kindergarten at Big School The Benefits of Medicinal Horror Keeping Abreast of Breakdown The School for Broken People When You Can’t Share Joy And Then She Walked The Lightning Strike of Inability The Bike Accident Policy – A Straightjacket for Progress The Trolley Ram The Taxi Tussle The Shit of It All The Steps to Frustration The Parking Police Stunted Expectations Battle of the Banana The Slap Does She Smoke? Does She Have Any Sexually Transmitted Diseases? What Party Drugs Does She Take? The Circus of This Existence Status of Exile Confirmed What’s It Like to Have a Disabled Child? Funding for Freedom Am I Funding Worthy as a Parent? Dressmaking for an Angel The Graduation Dinner The Invisible Pyramid of Silence The Mother of All Tantrums Have You, or Someone You Know Been Torturing Your Child? Funding as a Prison of Paperwork and People In Search of the Social Scene Endeavouring to Enjoy The Housing Application 2 % Versus 6 % – Who’s Being Ripped Off? Priorities Honey? The Well of Entrapment Bathed in Brown Get Her Away from Me or I Will Kill Her Respite Is Not Time off from Duty Are You Going Back to Work Tomorrow? A Professional Dismissal It’s Not like You’re Working or Anything A Different Future Housing Resentment Revisited Your Staff Aren’t Complying with Our Policies The Side Effects of Medicinal Policy An Unsuitable Housemate The New World of Training for Working with Disability Dressed to Impress – Who’s the Crush?
About the Author
As someone who’d only held a baby once before in her life before giving birth to a profoundly disabled child at 31 and had agreed with her father as a teenager that babies born with defects should be left to die – the universe decided to answer the request Kerry had uttered during her 20s: to be blessed with better patience.
The gods must’ve slapped their knees at their own joke when Kerry was given Shianna. An angel with crooked wings, she was born with Cornelia de Lange Syndrome – highly autistic, non-verbal with a convergent squint, severe digestive system problems and cerebral palsy levels of spasticity. Kerry had to relearn a whole swathe of new attitude to cope. Has this given her the patience she was seeking?
About the Book
Everyone has a story. There’s not a person on Earth who hasn’t been modified in their perception of everyone and everything around them by tragedy tainting the light of their soul. Our life plan as we see it is usually directed by things we can control – or think we can. The universe or gods might have other plans for us.
This book is about a journey towards positivity from the depths of loss and despair. It’s certainly not a life of beer and skittles bringing up a child with a disability, but it’s not all tragedy either. It just takes a while to learn that. 
Dedication
To all the young women who have worked with Shianna in Mackay – you taught me not to give up on the goal of improving Shianna’s self-sufficiency and acceptance within the community when I had given up years ago. Yannie and Cassy, in particular, you two changed not only the life of my daughter, you changed mine as well to one of hope and laughter and sharing of joy and frustration when teaching Shianna to communicate and be more self-sufficient.
Thank you so much.
Copyright Information
Copyright © Kerry Lambert (2019)
The right of Kerry Lambert to be identified as author of this work has been asserted by her in accordance with section 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the publishers.
Any person who commits any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages.
A CIP catalogue record for this title is available from the British Library.
ISBN 9781788786195 (Paperback)
ISBN 9781528955751 (ePub e-book)
www.austinmacauley.com
First Published (2019)
Austin Macauley Publishers Ltd
25 Canada Square
Canary Wharf
London
E14 5LQ
The Cruelty of All You
Such undecided joy
at the birth of this baby
Such trepidation
for this strange little lady
So thin and so frail,
strange nose and chin
She might be a baby
but her looks don’t fit in
Besides all of that
her birth was unplanned
Life has a way of
setting other demand.
I was going to do lots
my career on the rise
Who the hell was this thing
Keeping me awake ’til sunrise?
And yet there she was
She was not even perfect
Of course, in our eyes
there was never any defect
Daddy will always love her
Mummy will too
How can we defend her
from the cruelty of all you?
Watching Someone Else’s Path to Sorrow
Watching a stunning lady wander amongst the apple aisles of the supermarket, I wondered when the last time that she’d eaten a decent feed was. Her green and white striped dress was of t-shirt fabric and it stretched tightly over her thin frame. There was something about her demeanour that reminded me of me when I was younger. A wistfulness. A sadness that was too deep to merely be a bad day. A depth of thoughtfulness that indicated a mind racing fervently as the body methodically went through the motions of the daily grind.
She stopped to contemplate which variety to buy, her beautiful black hair swishing around her bony shoulders as she examined the array before her. She turned to smile at an equally good-looking young man. He seemed jovial, practically tap-dancing behind the stroller he pushed towards her. Her partner turned the stroller around in my direction and I suddenly knew why her meditativeness resonated. Their baby’s face was completely disfigured. Absolutely nothing on her face – at least I assumed it was a ‘her’ because of the clothing she wore – nothing was where it should have been and even then it was the wrong shape. She had a nose but it consumed most of her facial area. She had eyes but only one seemed to be operational and it was angled diagonally instead of horizontal at the lashes. She seemed to be about 12 months old. Internally, I recoiled. Externally, I hoped I did not flicker.
As I watched that tight little family unit wander past, I found myself in a total dilemma. I desperately wanted to run up to them and introduce myself – particularly to the young mother. At the same time, I knew she was probably in the same state of mind that I had been around 15 years ago with my own baby daughter. The embarrassment had been acute. The horror and pity and protectiveness I’d felt towards Shianna had been intense. The gritty determination that I would ‘get through it’ had become a constant, nagging companion. The eternity of the task ahead of me seemed insurmountable. The refusal in my mind to contemplate what I might have done wrong during my pregnancy to cause such enormous damage was a minute-by-minute battle. To have meandered on that mental path would have been a descent straight down to a guilt-laden hell with no ticket of return.
At the same age, my eldest daughter’s disabilities were really beginning to become evident. The sympathy of strangers had made me want to slap them across the face as hard as I could when their delight mutated to visible shock if I turned the double pram around for them to see ‘my twins’. Their reactions made me want to grab them by the scruff of the neck and make them look again as I forcefully introduced each of my girls by name. I had hated shopping with a passion, simply because of the reaction of strangers.
For the whole of the shopping trip, I hoped to see that couple again. I wanted to tell the mother I knew exactly how she felt. I wanted her to know that it’s not all bad. I wanted to hug her tightly and cry with her at her future. I didn’t see them again. I felt shame at my inaction.
There Is Something Wrong with Our Baby
It was 6.30am and Steve had yet to return from the party of people that had evacuated our home at around 7.30 the night before. Shianna was propped up in her highchair surrounded by pillows and in the usual fashion of letting me know she was hungry, she slowly and methodically rubbed the palms of her hands together with her fingers splayed out as far back as she could keep them so they didn’t touch. There were a lot of things she didn’t like to touch, including parts of herself. Whilst going about these repetitive movements she stared straight ahead – cheeks puffed out to make chewing motions with her jaw, little lips pursed busily chomping on nothing in particular.
Occasionally she’d glance my way but it was only ever a flicker. She would immediately resume her routine and stare straight ahead. Well, in two directions of ‘straight ahead’ really. Each eye looked somewhere different than the other. I spooned another mound of Weetbix into her waiting mouth.
I was feeling rather contemplative after events of yesterday. Nadia – my favourite girlfriend of all time – had visited with her baby boy. We’d sat in the sunshine under the mango tree, on blankets spread out across the grass. It had been a beautiful day but my enjoyment had dimmed slowly as I watched her boy sit perfe