Snapshots Personal Stories from The Wilson Home Trust
Piglet sidled up to Pooh from behind. “Pooh?” he whispered. “ Yes, Piglet?” “Nothing,” said Piglet, taking Pooh’s hand. “I just wanted to be sure of you.” A.A. Milne, Winnie-the-Pooh
Published by The Wilson Home Trust 1 St Leonard’s Road Private Bag 93517 Takapuna Auckland 0740 www.wilsonhometrust.org.nz This book is copyright. Except for the purposes of fair reviewing, no part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system, without permission in writing from the publisher. Infringers of copyright render themselves liable to prosecution. © The Wilson Home Trust ISBN 978-0-473-21172-1 First published 2012 Second edition 2014 (online version) Designed by The Design Co-op Printed by Benefitz
“Until the great mass of the people shall be filled with the sense of responsibility for each other’s welfare, social justice can never be attained.� Helen Keller
About The Wilson Home Trust The Wilson Home Trust welcomed children to the magnificent, cliff top site in August 1937.
The first children to arrive were those who had contracted polio and were sent for rehabilitation, to make as full a recovery as possible.
The reasons that children require care, therapy and respite have changed significantly over the past 75 years. The need has not.
The foresight and generosity of Mr and Mrs Wilson who gifted their home, property and along with many others, an endowment fund has ensured that many thousands of children have benefitted.
Waitemata District Health Board, in addition to being the Trustee for The Wilson Home Trust provides the essential health care services on site.
The role of The Trust today is to ensure support and services for children with disabilities, to protect and enhance the historic nature of the Wilson Home and to facilitate family and community involvement.
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“Some people come into our lives, leave footprints on our hearts, and we are never the same.” Franz Schubert
Acknowledgements Thank you to everyone who responded to our request to share your stories. Some of you have told me how emotional it was to write about your families. I trust the readers will be as moved as I have been by your heartfelt contributions.
Thank you to the volunteer gardeners who ensure the grounds are as well nurtured and beautiful as the children.
Thank you to the people who work on the Wilson Home site. One staff person spoke for many when she said, “I just love the kids.”
Because we are often motivated by personal experience I want to pay tribute to our son Ben
(1975–2005). Without Ben, I would never have found my way into the Wilson Home community.
Ben taught me a million things; to not be afraid of difference or saddened by disability. He taught me that
to be noble is to be patient, kind and gracious. He taught me that to live well we all need respect and dignity. He taught me to strive for a just and fair world and above all to cherish those we have around us. Sally King
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Introduction A story, when told, shares experiences, feelings and insights. The stories that follow are gifts that have been given so
generously by those associated with the Wilson Home over recent years. The story of the Wilsons and their outstanding act of generosity extends over 75 years. The Wilson family had a vision of providing care for the most vulnerable and disadvantaged members of the community in a setting most resembling a family home.
Many share the unique and stunning property on the cliff in Takapuna and contribute in a variety of ways. The Waitemata District Health Board provides a range of services for children with disabilities and their families including clinics, respite and a national rehabilitation service. Two schools operate on site. They are the Wilson School and the Northern Health School. The Trust itself facilitates a number of activities and events for children and families along with specific support in the form of grants, guidance, information and personal support.
The Trust’s aim is to augment these services and support by encouraging recreational and creative activities on site.
Takapuna Grammar School is our close neighbour and an integral part of the extended community and senior students regularly volunteer with activities with the children and young people.
The concept of a village community within the wider community forms part of the Trust’s aspiration. This will see continual improvements
to facilities, reduced building footprint, more green and recreational spaces, protection and enhancement of the historical and aesthetic aspects and even more integration with the wider community.
My own appreciation of the Wilson legacy has grown over my time
with the Trust. Initially my love of children, the physical setting and the potential I saw in the Trust was what I found most inspirational.
This appreciation has now extended to deep respect for the people
I work with and meet every day. They are teaching me about humility, courage, authenticity and resilience. Russell Ness 5
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Stories Children & Families
Volunteer Gardeners
Alhena 53 Sinead 6 Volunteer Gardeners 36 Matthew 54 Sinead’s Family 8 Colleen 38 Matthew’s Mum 55 Holly 10 Eve 39 Isa 56 Sam 12 Peter 42 Nathan 60 Sam’s Mum 14 Jim 44 Natalie 62 Raea 16 Words That Change A Life Forever Finlay 20 Daisy 64 Finlay’s Mum 22 Rasheed 66 Honour 24 Debbie Wilson Centre 18 Tony 68 Blake 26 Adrienne Wilson Centre 58 Hayden 70 Blake’s Family 28 Wendy Wilson Centre 59 Anthony 72 Amelia 30 Lynne Northern Health School 77 Raymond 73 Amelia’s Mum and Dad 31 Linda Wilson School 78 Caroline 74 Shakti 32 Joanne Wilson Centre 79 Majur 75 Ocean 34 Roxy 76 Andrew 46 Saffron 80 Andrew’s Family 48 Saffron’s Family 82 Keegan 50 Issak & Kayne 84 Keegan’s Family 52 Sam 86
Staff
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SINEAD
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My name is Sinead Tuhaka and I am 15 years old. One word to describe me is beautiful!
In my family are Kim (my Mum), Wayne (my Dad), Cory, Grant and Daniel (my brothers). I love spending
time with family and friends (I am a social butterfly), receiving massages, soaking in the bath, swimming, and watching video clips of my favourite singers. I like to eat mashed potato & gravy from KFC and chocolate. The things I don’t like are loud noises, unfamiliar places and faces and getting my hair brushed. My perfect day would be to spend time with my Granny if she were still alive. Otherwise I love going shopping and having lots of money spent on me.
My heroes are all my friends from school because they have to put up with me bossing them around. My friends like me because I like to laugh and I worry about them if there is something wrong.
If I could have one wish granted, it would be too hard because I have lots of wishes. I would want my Granny
back, I’d love to meet Suzie Cato, I’d like to be able to talk first and walk second and I would definitely love to be able to eat all the yummy things I watch my family eat.
If I could be an animal I would be a dog that lives in our house because our dog is spoilt. If I could tell my parents what to do I would tell Mum to change my nail polish more often and I’d tell Dad to stop watching the rugby channel so much.
The happiest moment of my life is hard to pick because my life is full of happy moments.
I’ll always remember how much I loved spending time with my Granny. She was the best! Respite at the Wilson Home: I love it when my favourite nurses are on roster and I have friends in my villa
that I know. I also love doing lots of activities and joining the ladies in gossip sessions. However, I don’t much
like it at Wilson Home when I don’t know anyone in my villa or no-one talks to me. It’s all about me and I get sad when I’m not the centre of attention.
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Sinead’s family
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She lights up our lives! It would take a million years to tell you all the ways that Sinead lights up our life. Some of the things are her smile, her laugh, her hugs, the smell of her hair, her strength and compassion. We just love her being a part of our whanau.
The best thing we do for her is to love her for who she is. My favourite story about Sinead was when she
finally mastered the MyTobii communicator. The first thing she asked for was for her nail polish to be replaced and for new hair ties. And here were we thinking that she was going to come out with something deep and meaningful!
Our most cherished family tradition is celebrating Christmas and birthdays together because there is nothing more important than whanau!!! Our happiest times are when we are all together with our extended whanau.
We get our best support from friends and family, good medical care and support practitioners. Carlson School is fantastic and it helps to have time out when Sinead is at Wilson Centre (although we have to admit home is not the same when she is away).
Sinead regularly spends time at the Wilson Centre for respite. This gives us a mixed bag of feelings really.
We dread losing our daughter for a few days but we do enjoy having the time to catch up on jobs around the
house or participate in activities that are not suitable when Sinead is with us. Wilson Centre provides us with the opportunity to do these things. We know our daughter is safe and that qualified nurses are there to make
sure all of her needs are met. But on the other hand we worry that she’s not happy, or that she’s missing us or
getting bored. We love the fact that we can ring any time to see how she’s doing and the staff have never made us feel as though we’re being paranoid. The most important factor for us is that Wilson Centre is a highly professional service.
Having a child with a disability has made us far more tolerant of every day ups and downs. There is not
much that fazes us anymore. Previously we ignored people with special needs in the community, we no longer do this. Everyone in our family has learnt so much from having Sinead in our lives.
If I was Prime Minister for a day I would introduce more funding to support our special kids and their
families. I would introduce a public holiday with celebrations throughout the country to improve awareness of our kids.
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HOLLY
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We all make a Difference - My name is Holly Ross and I make a difference by showing others I am just like them.
I drive a wheelchair and sometimes I use a Dynavox to help me to communicate. But, I am still a teenager. I love buying new clothes and shopping at the Albany Mall with my sister Emma. The mall always has such yummy things to eat and I love food. Some of my favourites are Butter Chicken, Sushi, Ice creams, nd frozen Coke from McDonalds. I love music and going to the movies. My favourite movie is Happy Feet 2. My friends like me because I smile a lot. The people in my family are Mum, Dad, Emma and Logan. I like to stay up with my mum Leesa. But sometimes I don’t like my brother Logan because he changes the television station when I am watching and interrupts me when I am talking to mum and my dad, Lance.
I think that school is okay, well, I guess. At least I get to hang out with my cool friends and my classmates
are really nice, especially Louis. The happiest moment of my life has been going to college. I don’t like maths or my standing frame but I do like drawing, colouring in and using my ipad.
I can’t wait for the next school holidays so that I can go to the hot pools again and I bet there will be a new movie I can go and see.
If I could be an animal I would be a guinea pig. I think I make a difference because I have taught other students and teachers to treat me just like everyone
else at school. I get sad and I get mad too because I have feelings. I am a teenager so look out world, here I am!
LEFT Bag handmade by Holly
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SAM
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My son’s name is Samuel. He is a gorgeous little boy who has led me to the place in life where I “get” so much more, where people’s appearances do not faze me because I know that underneath the clothes, make up, tattoos and labels we are all the same. We love and we want it back.
My son is Sam; Sam I am. The old Hebrew meaning of “I am” is God. I’m still not into organised religion but something touched my son’s chromosomes and stole a little piece which makes him different.
He is not the horrid literature. He is warm and loving and he will greet the gruffest person with one of his hugs which brings light to their eyes. He is courageous and still smiles when he is ill, like he is trying to tell me that it is all okay. He is friendly and loves to play chasey with his `normal’ mates at playschool.
He is brave and he stares directly into my eyes with such trust as the anaesthetist places the tiny mask over his face for each of his already eight surgeries. He communicates through sign language and his precious few words and he is so funny. I often laugh until my eyes are filled with tears as he shows me the world through his eyes.
When I am sad and just over the world, he will gently touch my arm and say “nummy” and I see a reflection of unconditional love.
Disability does not need to be filled with shame or uncomfortable looks. Disability can teach you so much and show you how to rejoice in simple things that are often taken for granted. Let Sam be your mirror... what do you see?
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SAM’s mum I named Samuel (Sam) a few days after his father left me when I was 5 months pregnant. I was devastated but I wanted Sam to know that he was special and that is why I chose his name which means “touched by
the hand of God”. I’m not someone involved in organised religion but the meaning of my unborn son’s name felt right. Little did I know at that time that if there is a God that he did touch my son – he took a little
piece away (chromosome 17.11.p.2 – is there an equivalent scripture?) and allowed a gap to exist in all of the hundred trillion cells of his little body.
The gap was so tiny that no pre-natal scan saw it. Despite foetal distress and an emergency c-section no
doctor saw it. But the moment I held Sam I felt it. The first years in and out of Starship, tests, tubes, surgeries, my mothering skills questioned by social workers and psychologists and the doom of waiting for the results of the regular tests which were being sent to the international testing centre. Was he going to live for a few months, years or longer?
But then one day I Googled yet another syndrome that the doctors were testing Sam for and I could not understand how they had got a photo of my son on a special needs website? It took a moment but then
I realised that I was looking at the answer in another child’s face. I was summoned to the hospital. I held my
baby in my arms and I held him tight because I knew it was the last time that I would hold him as a `normal’ child. The tears welled up. The doctor explained that it was not my fault; the nurse took him in her arms and went for a walk down the hallway. My son had Smith Magenis Syndrome.
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The other night my 4 ½ year old thought he was sneaking into my bed in the early hours. I heard the sound of his tiny feet and I pretended that I was asleep. I felt him tug at the sheets as he pulled himself up onto my bed and still I lay silent. Then I felt his precious lips kiss my cheek before he snuggled in next to me.
The literature was horrid. Friends and family were shocked and made well meaning but stupid remarks. My lounge was filled with flowers like it was funeral. The shame felt immense.
Sam snuck out of his bed the other night. I pretended that I did not hear him but I was so happy to hear his pitter patter;
I was told that he might not ever walk when he was an infant. My son tugged at the sheets and pulled himself up onto my bed; so strong for a child that was unable to sit unaided until he was 16 months old. I lay still as he kissed my cheek;
so grateful that he can purse his lips and now eat. He was primarily tube fed for the first 2 years of life and his calorie
intake and weight closely monitored due to his severe reflux. He is now down to 3 bolus feeds a day and I visualise the day when I can pull his mickey button out and not force a new one into the hole in his stomach.
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RAEA
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My name is Raea Tamaaro Kornelio Pareanga. I am 7 years old. I am the first born of my Dad.
My favourite things to do are: to look around and laugh with the noisy thing. I don’t like: Salt. My perfect day is to be with my friends and family. The Wilson Home is my home while I am here.
FROM Raea’s Grandma The happiest times for our family are when all the family get together; we eat, tell jokes, sing or go to the beach. My experience of having a grandchild with special needs hasn’t changed my attitudes. I love my grandson! He makes me feel much better when he is around. What best supports me: for Raea to walk, talk and eat. If I was Prime Minister for a day I would look upon my people, my families and those who are in need. My favourite times are with my grand children: Flying kites. Kids will each have a kite. Telling stories while you make your kite, fly the kite and sing and dance with your kite. My most cherished family tradition: Is to love one another as you love yourself.
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DebbiE
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I have worked at Wilson Home for 35 years (with a short interlude). I saw the job advertised and I had been doing work training while I was at High School and when the position became available the Disability Foundation helped me to apply for a job here.
I am now the longest serving staff member on the site. I am a cleaner. My first impression of this site was that everyone was loving, kind and very caring. The staff looked after me. I feel valued because everyone likes the way I clean. I get lots of compliments. I clean in the old style, ‘the Matron’s method’. The supervisor used to put gloves on and run her finger along the edges to check for dust. We used to use toothbrushes for cleaning the grooves. I like working here because I feel safe. I love talking to the families. I am a very good communicator with the families and I get on well them. I love to see the children looking so much better when they leave here after they have been here for rehab. It is amazing! I have made some very close friends with work mates over the years and I still keep in touch with them even though they are retired. They were like mothers to me. I remember when the cleaners all dressed up as clowns. The cleaners were always clowns on bikes in those days at the Christmas Party. We used to have wonderful parties in the grounds (There are now buildings). I like the parties we have for the children now too. I remember when the kids used to live here and some of the staff used to take the kids home for weekends and outings. One of the cleaners fostered one of the boys. I used to live in the nurse’s home on site before I was married. That same building is now a beautiful cottage where the Wilson Home Trust has its offices. It is lovely and we sometimes have garden parties there. We had two children staying here a brother and sister and they both died while they were here and we all felt very sad about that. The kids that I see here are sometimes so fragile. The best thing I have ever done is staying and working here. I plan on staying here until after retirement. Times have changed now. The Wilson Centre has grown bigger and busier. There are now a lot of children who come from all over the place; overseas and all over New Zealand. They come for therapy treatment. 21
FINLAY
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Hi, my name is Finlay and I’m now 7 years old. I have a Mum (Kimberly) and a Dad (Campbell), my 4 year old sister, Rosie and a 1 year old brother, Lockie. I’m also lucky to have a beautiful dog called Barley.
My favourite things to do are trips out in my wheelchair, playing with my brother and sister, swimming
and going for a drive with the family. I just love to eat! I enjoy most things my Mum “stuffs” in my mouth. I particularly like ice-cream. Ice-cream took a bit of getting used to at first. My Mum is persistent though
(thankfully). My perfect day would be surrounded by all those that love me, particularly my Pop (he’s the best Pop ever).
My hero would have to be my Dad. This is because he loves me no matter what. If I could have one wish granted it would be to walk. I could then run after my Dad when he jumps in his
truck. I could race around with my brother and sister. I could take part in ALL family activities. One word
that describes me is SOCIAL. I love people and being talked to. I enjoy being part of things. My friends like me because I’m me. I seem to bring a smile to their faces.
The happiest moment in my life would be when my Dad lifted me up and took me for a swim in the sea.
I was so hot in my wheelchair and to have two of my best things happen together. Time with my Dad in the water with no competition from my siblings!
If I could tell my parents what to do I’d tell them to stop stuffing too much food into my mouth. Also to give me more time to do things! They are always rushing me.
Well if I could be an animal it would’ve been a hairy dog that loves to run and swim. I could chew bones and toys all day and it would be deemed appropriate behaviour.
I love coming to the Wilson Centre because I love seeing the friendly nurses. It also makes my family appreciate me more when I come home. I get heaps and heaps of hugs and kisses.
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From Finlay’s Mum The happiest times for me are when ALL the family is happy. I love seeing Finlay interacting with his little sister and brother and vice versa. It was a hard decision to have two more children knowing the amount of work needed to keep Finlay healthy and moving forward. It is a day to day challenge but well worth it when you see the love and bonding between the siblings. I know once I’m gone his little sister and brother will be looking out for him. Cam and I have grown stronger since having Finlay. We’ve discovered friends that we’d never have met without him.
We’ve also lost people who we thought were friends. He makes us question ourselves and gives us challenges to overcome. There is a saying: “if you haven’t been challenged in life then you haven’t really lived”.
Our most cherished family tradition is visiting our family down in Central Otago and sharing memories once a year. We have planted three little trees there for each child and a time capsule built into the stone wall! We all feel a sense
of belonging and growth whenever we make the journey. Finlay lights up our lives with his smile and his pure Finlayness! I think the best thing that I do for Finlay is that I don’t like to give up. Advocacy is a big thing for a child that cannot speak up for himself. But, it’s important to also find time to enjoy life and relax for ourselves.
If I was Prime Minister for the day? Hhmmmm. I would give our local school one million dollars to build a fantastic swimming pool with changing facilities for the kids!
The Wilson Centre is a place we know our child will be well cared for while we embark on ‘non-accessible’ activities. Sometimes I think people forget that having a child in a wheelchair means that families can feel ‘disabled’ too.
It means we can’t venture into that cave, jump into that random car, head over that dune, walk down a beach or swim in the sea. Dropping your child at the Wilson Centre can leave you with mixed feelings emotionally. I often feel grief but a sense of freedom at the same time. The grief is from wishing your child could come with you and the freedom is the knowledge that it’s necessary for your wellbeing.
I’m a better mother when I take a break from time to time.
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HONOUR
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I like watching TV, visiting my family, having holidays up north at the beach and going to Homai School. My perfect day is spending time with my family and having cuddles with my Dad. My heroes are Sponge Bob, Ben Ten and my Uncle and Dad.
If I could be an animal I would be Simba in Lion King! If I could have one wish granted it would be for a mobility van. Words to describe me are tall and handsome! Gorgeous! Knock Out! My friends like me because I’m Cool As! If I could tell my parents something, I would say; I love you Mum and Dad. I Love you Aunty and Uncle. The happiest times of my life are when I’m with my Whanau. I like coming to the Wilson Centre to see my friends, play time and all the cool toys. I also like the long ride on the van, over the harbour bridge, seeing the Sky Tower and all the boats, buses, trucks and cars. WOW!
From Honour’s Mum and Dad Our happiest times are loving each other daily! Togetherness! And having a huge hug! We marvel at the beauty of Honour! Honour is a legend! The best thing we can do for Honour is to love him unconditionally. Our most cherished family tradition is Prayer. Teaching our children the old meaning of Christmas. We give thanks for the Wilson Centre. It provides a break and we know that while Honour is there he is: safe. He is in good hands. We can relax and have no concerns while he is at Wilson Centre. We are grateful!
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BLAKE
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My name is Blake and I am 14 years old. My friends like me because I am cute and lovable. I have a mum, dad, brother and sister.
I really like to sleep in, go for walks and shopping in my special pram. I also like cuddles, books and playing
with my bangles. I like to eat almost anything. My heroes are my family because they love me unconditionally. I don’t like getting up in the mornings so my perfect day would be to sleep in, relax eat and get lots of attention. If I could be an animal I would choose to be a cat because they sleep, eat and play all day. If I could have one wish granted, it would be to be able to communicate. The happiest moment of my life has been pulling through surgery at 12 days old after my parents had been told that my chances were slim as I was so small.
I like coming to the Wilson Centre because I love getting attention and cuddles. However, I don’t like getting up and being showered.
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From Blake’s Mum and Dad Blake lights up our life every time he smiles. He makes us laugh every day. The best thing we do for Blake is to take good care of him. The best thing anybody can do for a child is to spend
quality time with them. Blake loves being talked to. Our most cherished family tradition is making birthdays special as the memories stay with you forever.
Having a child who has special needs has definitely made us more compassionate people. We appreciate what is really important in life and now we can see beyond the disabilities that people have. It is funny the things that happen.
It is amazing to see the look on people’s faces when I tell them how old Blake is. People stare at Blake all the time
and sometimes they even point. I used to get angry but I realise it is human nature and that I too used to be like them. If I was Prime Minister for a day I would give parents a wage for caring for their special needs child. The Wilson Centre is Blake’s second home as he spends a lot of time there. I know Blake is in good care, so I don’t need to worry. Knowing other people can take good care of Blake other than his family. I found this hard to deal with when he first started at the Wilson Centre about seven years ago. Our best support comes from The Wilson Centre, the Cornelia de Lange Syndrome support group and family!
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AMELIA
My name is Amelia Ashby and I am 8 years old and one word that best describes me is beautiful! In my family are my Mum Rose and my Dad Steve plus two cats Ziggy (a Silver Ragdoll/ Tiffany and Pippin (a black moggy).
My perfect day would be to go camping with my family at the beach on my Dad’s family farm, waking up without an alarm clock, spending the day with my cousins swimming, playing in the sand, playing board
games, going for walks, having lots of fun and doing the same the next day. The happiest moments of my life so far have been getting Ziggy and my new big bike. I especially like to eat Sushi however, I also like Indian, Chinese and anything my Mum makes.
My friends like me because I’m kind, friendly and care for them. If I could be any animal, I would choose a cat because people care for them, they sleep all day and they are beautiful.
My favourite things to do are netball because I get to be with my school friends and have a good run around.
I swim once a week to help with my co-ordination and strengthen my muscles, helping my cerebral palsy.
I am learning to ride my new bike, in the hope that it won’t be long before the training wheels are removed.
I belong to the National Youth Theatre which I love because I’m on stage, I sing, I dance and act. If I could have a wish granted it would be to go to Disneyland and ride my bike without training wheels.
My hero is my Dad, because he works very hard for me to have the best and he needs a car as his is falling apart but he can’t afford it because I do so many neat and exciting things after school all of which help me
with my cerebral palsy. I think my Mum and Dad are doing a great job and I know and appreciate that they work so hard for me.
The best thing I like about coming to the Wilson Centre is seeing the other children with Cerebral Palsy and knowing there is a special place for all the children like me. 32
From Amelia’s Mum and Dad Amelia lights up our life when along with other girls who have no disability she sits her RAD exam in front of
someone who has never met her and she passes with a “Merit”. Or when she is on stage full of expression, using her
hands and speaking lines – nothing more can stop the tears rolling down my face at being so proud of what she can do. Our most cherished family tradition is our regular camping holiday on the beach; no TV, no radio, no cell-phones. We have just games, books, food and family. After three weeks we are eager to get home to our beds but come June we are booked for another summer. We love it when there is lots of chatter, playing, eating and having a relaxed, happy time. Our experience of having a child with special needs has changed our attitudes. We have a true understanding of what parents have to deal with and what an expensive, exhausting and time consuming task it all is. Thankfully, we put a huge amount of time into Amelia when young so she is now up and running which causes further problems because people think there is nothing wrong!! They don’t understand the education milestones that are a daily battle – but we wouldn’t change a thing. Amelia is a wonderful girl who has come along in leaps and bounds. We like to create strict routines as this ensures Amelia stays calm and learns the repetitive routine of life in a not too complicated way. When Amelia was four she was in a Nativity Play. “Mum, I’m an Angel in the play”. “Oh, that’s lovely darling, what do you have to do?” “I’m playing a simple angel”, “Oh really, what does that mean?” When I looked in the rear-vision mirror Amelia is banging her hands together – symbolising symbols!! I said “Oh darling, It’s not a simple angel. It is an angel playing symbols”. “That’s it.” She said. If I were Prime Minister for a day, I would implement more support to the carers of children who have special needs and ensure they get through the education system without being penalised for looking normal and/or having parents who have worked so hard – meaning their disability is not evident. The thing that supports me best is working part-time so I am always home for Amelia and having two very understanding bosses who never question or complain.
The Wilson Home is a special place that supports children with a wide range of disabilities. We always feel welcome and accepted by everyone. There is no need to explain where we have come from. We recently donated a bag of books for the upcoming Gala. Walking to the car Amelia announced “Mum, I think I could go through some of my toys for the cerebral palsy children”. That shows how important Wilson Home is to our family.
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SHAKTI
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My name is Shakti Krishnan, I’m 13 and I was born with Spina-Bifida. I am currently in year 10 at Hillcrest High in Hamilton and I am involved in many different activities. I play Table Tennis, Skiing and Wheelchair Racing. I also play the Violin, Piano and Guitar.
2011 was a great year for me, with many achievements. Firstly, I went on a tour around Asia with my school choir.
We went to Malaysia and Thailand and I was the first disabled student to go on such a trip. Academically I was awarded four merits at school. I also achieved a grade 5 in Violin with Merit.
I am also in the New Zealand Development Team for both Table Tennis and Skiing. I was very pleased this year with the
outcomes of my competitions in my various sports. I came third in the Para-Snowboard World Cup Championships 2011 in Wanaka, which was an open event where I was the youngest athlete to compete. I also received two gold medals for Table Tennis in the Paralympic National Championships 2011 for the Singles and Doubles. In the same event I received three silvers for Wheelchair racing in the 100m, 200m
and 400m and I also received the trophy for “The Most Promising Table Tennis Player.” When I was younger the Wilson Home played a major part in my life. One thing I do remember and always looked
forward to was the Christmas Party. It was also the place where I went for physiotherapy and specialist appointments. I remembered how I loved playing with the little toys while I was waiting for the doctor.
As a child I thought the playground was amazing with lots of interesting bits and bobs. The staff members were always happy and welcoming which definitely made it easier for me when I had an appointment with a doctor.
I believe that anything is possible. My family and I are very grateful for all the support Wilson Home has given us and we are proud to be part of The Wilson Home family.
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OCEAN
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My name is Ocean Anna West. I am 4.5 years old and my favourite things to do are music, drawing, dancing and my Love to Sing DVD. Lisa, Steve and my brothers Dryw, Jaig and my sister Morgan are my family.
I love going to the Wilson Home Christmas Party to watch Love to Sing. In fact my perfect day would be to have lots of music, listening to Love to Sing and going to the Zoo and Rainbow’s End. Even better would be to eat yogurt, bananas, rice bubbles and blueberries. I don’t like loud noises, hairy faces or going to bed.
My heroes are mum and dad because they look after all our needs, my brothers and sisters too. They stay up with me when I am sick. If I could tell my parents would to do I would say I love you and get me a bottle.
If I could have one wish it would be to have Love to Sing at my house and if I could be an animal I would be a Tiger. One word to describe me: Complex.
What I like about the Wilson Home is playing in the garden, going for walks around the paths. I don’t like it when mum and dad drop me off at first I get scared. My friend likes me because I hold her hand.
From Ocean’s Family The happiest time for our family was when Ocean passed her 2nd birthday. And now our cherished role for her is that
Ocean provides everyone in our family with their birthday cake. I am most proud of my kids Jaig and Steve for changing Ocean’s mickey button when she was 18 months old. Very SCARY.
Having a child who has special needs hasn’t really changed our attitudes. Dad was brought up with children who had special needs and Mum has more power because of Ocean.
“Ocean has helped make me strong. My life has changed.” The best thing that we do for Ocean is to fight for her rights to have as normal a life as possible Our best supports are each other and when it is all too much for us we can have help from Wilson Centre. You can’t always rely on family.
If I was Prime Minister for a day I would make sure that everyone had to spend a week with people or children who have special needs and that caregivers would get paid to look after their child.
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Volunteer “I have been a volunteer gardener for 4 years. I love gardening so I decided to join up. Volunteering at the Wilson Home is my main work and social occasion of the week. The renowned gardener’s morning tea is a good occasion to meet the others. The last get-together/barbeque of the year is always enjoyable. The only thing I don’t enjoy is when it’s too hot.
On two occasions my grandsons have had check-ups at the Neurological department. They stayed overnight last time
and they had to travel from Tauranga. I bought them their favourite drinks and lunches that they appreciated after hours of examinations. We spent time looking around the grounds with the boys zooming around in their wheelchairs.”
“Visitors often say The Wilson Home is a peaceful and beautiful place.”
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gardeners
“I have been a volunteer gardener for about 4 years. I decided to become a Wilson Home Turst gardener because I enjoy
gardening and have some spare time. I am responsible for everywhere where leaves need raking up. I thoroughly enjoy the company of the other gardeners. Volunteering for the Wilson Home means satisfaction to me and we love to hear all the compliments from visitors to the Wilson Home.”
“The renowned gardener’s morning tea is just great!” 39
I have been a volunteer gardener for 13 years. I decided to do this because of my love of gardening and I knew three of the other gardeners. Volunteering for the Wilson Home means the opportunity to contribute to this wonderful amenity and to meet skilled and wonderful people.
ColleEn I thoroughly enjoy the beauty of the property, the friendship of the gardeners and staff and watching the progress of some of the children.
Until Jan 31st 2012, along with Eve, the sunken garden area where many of the weddings take place has been the area that I am responsible for. I have gained a great deal of
pleasure keeping this area planted with flowers knowing how many people enjoy it on their wedding day.
I don’t like it when it RAINS on our gardening day. The renowned gardener’s morning tea is a lovely interlude to catch up with the other volunteer gardeners and to be offered produce from Jim and Meredith’s wonderful vegetable garden.
The best thing we ever did was in 2001 when the fountain was installed after the Wilson Home Garden Fete which had raised almost all of the cost of it. Another enjoyable job was when Peter and I painted the interior of the summerhouse.
Visitors to the gardens are often in total surprise of discovering Devonport’s secret garden – the beauty of the area and the amenities offered to children and parents.
I remember when as a small child in 1939, my father and I paid frequent visits to the
Wilson Home where the 7 year old daughter of friends of my parents was in an iron lung. Her home was in the far north so it was difficult for her own family to come frequently.
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Eve As a novice, I was allocated the banks behind the summer house and I was
intimidated at first by the passion and talent amongst the gardeners. I knew about gardening in the US but was wobbly on what was a weed in Auckland, oxalis was a prize there! I looked at the mess and knew the location had to be re-jigged.
We installed sleepers along the edge followed by yards of compost. Then roses (although we were told they wouldn’t grow) and everything began to flourish. At the end of 1998 the Wilson Home Gardens were chosen to be part of the
prestigious Trinity Cathedral Garden Tours of Auckland. It was a ’wow’ moment! Eventually I moved to the sunken garden where weddings happen constantly. It was looking very tired and had a rather creepy water feature of ancient
painted concrete gnomes. It turned into more of a challenge than I could handle and I needed another pair of hands. That other pair of hands has
become a dedicated friend. At times we have felt like mothers to a thousand
brides – wondering if it would rain on the nuptials or be windy and there was always a constant need to dead-head the roses and keep the gardens looking
pristine – so we’ve handed it on after 12 years. We will always love its charm
with a bronze fountain now, buxus topiaries, beautiful benches and the original statue from the Wilson family of a young girl at the end of the arbour.
I’m short of wind these days and I have opted to freelance, trowel in hand, wherever help is needed. The renowned morning teas have added to my
waistline, worth every bite. We’ve had some hilarious Christmas parties in years gone by that have brought us closer together and today, although we don’t always agree, Steve with his wacky sense of humour and his genuine warmth towards us all can turn a morning tea into a laugh a minute.
I vividly remembered the long, grey, dreary days at Babies Hospital in New York, where our little daughter was, and my sitting in the concrete garden and finding it did nothing to relieve my fear and sadness. I sensed the peace and genuine caring at the Home and it was inspiring. It still is. 41
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Peter
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I have been a volunteer since 1996. In fact I’m an original member of the volunteer group. I decided to become a Wilson Home Volunteer Gardener because on the very day I started my early retirement at age 56 I saw an article in the North Shore Times saying they were looking for volunteers and inviting all interested parties to a meeting with Karen Forrester. I don’t drive and as I lived not far away this seemed a perfect way to spend some of my plentiful free time. I went to the
meeting, fell in love with the concept and the surroundings. The rest as they say is history. I know very little about plants, in fact I like to call myself a “herborial dyslexic”, I do, however, love designing and making things so, over the years have left my mark. Some of these projects include the maze, courtyard, chapel and memorial gardens. The aviary, compost bins, garden seats, and many paths and steps.
The vegetable garden was inspired by an article called “Dig for Victory” about war time gardening, where people were
encouraged to grow their own vegetables. This area is beautifully cared for by volunteers Jim and Meredith. The bountiful crops are used as wages for the volunteers, shared out every Thursday.
The Summer House was allocated to the Volunteer Gardeners as a place to have their morning tea and discussion groups. It was very run down but a group of volunteers repainted the outside and Colleen and I repaired and redecorated the
inside. The underlying structure however, was in danger of being condemned and demolished. I’m delighted to say that funding has been found to carry out a complete restoration in the near future.
Now that I’m in my 70s my big project days are over. I still love coming every week to do do odd jobs and weed for the
other volunteers. It is great fun wandering around the place, having a laugh with the other wonderful volunteers and staff and being made to feel useful by helping them out with manual work.
We love our Christmas get together which is kindly organised by The Wilson Home Trust. There is always great food, lots of laughs and conversation. The renowned gardener’s morning tea is not recommended for people afraid of going deaf ! However the great food provided and a nice cup of coffee make it more than bearable. In fact the sense of friendship
and shared history make it a time to really enjoy. The crowning moment is of course fighting for the “vegetable wages”. Volunteering for the Wilson Home gives me a great sense of purpose and the feeling I am earning to some degree my
National Superannuation which is paid out of working people’s taxes. It also gives me great pleasure each week to catch up with other volunteers and members of staff and share a few laughs. I don’t like it when it rains on Thursday morning and I have to cancel my weekly visit.
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Jim
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“Many years back Peter asked me if I could help on an aviary. This was the start of many jobs, including making urns, repairing walls and growing vegetables. �
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ANDREW
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My name is Andrew. Some people call me Andy Pandy, but I’m nearly 16 years old now, so it’s not really cool. I have Angelman Syndrome which is a pretty rare disorder. I have a Mum, Dad and two awesome brothers, one older brother and one younger. We also have two small dogs, and they just had 3 new puppies!!
My friends like my smile and relaxed personality. I love socialising with friends, my brothers, and their friends. They all often hang out at my place – they play guitar hero and other cool games which I like to watch, too. I love my iPad and playing with my favourite apps. I love going out to
the mall, to swimming lessons, Waiwera hot pools, bowling and I also used to go horse riding. The exercise is good for me and keeps me fit and healthy. I just love Christmas, every year it gets better and better.
I don’t like having to walk too far, and I don’t like sitting in my wheelchair for too long, when it’s not moving, I also get bored if I have nothing in my hands to play with. A perfect day would be a day filled with car rides, fun activities, and
outings with friends. I like to be kept busy, and be out and about. If I could have one present this year it would be a spa pool!! I LOVE water and need to soak in warm water to relax my muscles.
My favourite foods are healthy. Mostly fresh fruits in season, cooked veggies, pasta, pickled beetroot and gherkins, stuffed olives, mushrooms and cheese. I don’t really like meat – only sausages, sometimes.
I like Philip Patston because he is smart and funny, and I like Cam Calkoen because he is fit and strong. My wish is that the scientists in America at the Foundation for Angelman Syndrome Therapeutics,
will soon find the cure for Angelman Syndrome and I will be able to talk and run like everyone else. My advice to my parents is to relax more. Only life-threatening situations are serious. If I could be an animal I would choose to be a dolphin – because I love to swim and be free At the Wilson Centre I love to see the smiling, caring faces of the nurses, and also all the familiar faces of my friends.
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Andrew’s
Andrew is such a gentle, loving soul. He makes us all smile with his happy demeanour. He is also the most popular family member because he doesn’t answer back or argue! Our most cherished traditions are Christmas and birthdays. We have a traditional European Christmas Eve celebration when we enjoy Christmas lights and open presents; and we always have a birthday party with lots of friends, fun, balloons, and cake. All our children have a similar party.
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Family The best thing that we do for Andrew is to help keep him involved in a social life, doing what other kids of his age do.
We like to surround him with other kids and take him out and about in the community, doing fun things. We loved our first camping trip, two nights in Rotorua. That was great fun. Andrew enjoyed the car trips, tenting, cooking and eating outdoors. He was really sad to get back home again.
Having a child who has special needs has made us less judgmental, given us more empathy for others, made us think
creatively, problem solve, be flexible and able to adapt to all sorts of situations. One thing that really helps is the mother’s weekend retreat. It is always invaluable to recharge batteries.
The Wilson Home respite was a life saver for me as a mum, to help give me some rest when I needed to get over many
years of radical sleep deprivation. It has been wonderful for Andrew to attend a place of such good quality. Respite meant I could rest, spend time with siblings, attend other events, such as conferences or even a short holiday overseas, such
activities are considered ‘normal’ for other parents. It has been a wonderful place for rehab after Andrew’s operations,
because the nurses know him, and are most helpful with advice and suggestions for his care. It has also become a home away from home for Andrew whose face always lights up when we turn into the gate.
Andrew has also attended all the Christmas parties, the ArtOut and drumming holiday workshops, and the farewell parties when his friends move on.
If I were Prime Minister for a day, I would fund four retreat weekends for mums with special needs children each year. I would provide a fully inclusive education system. One that fully supports disabled kids and their families, with staff members who understand the extra pressures that parents, the child and siblings are under on a day-to-day basis.
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KEEGAN
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My name is Keegan Lewis and I am 15 years old. My family and friends sometimes call me Keegs. I live at home with my parents. I also have 2 sisters who are older and live out of Auckland. Amanda is a physiotherapist and Brooke is studying to be a doctor.
My hobbies are music and acting. I love singing in front of an audience and I am very knowledgeable in the history of music. I love being at home and my perfect day would be a day ‘chillaxing’ at home, starting with breakfast in bed and then singing with my microphone and amplifier.
My heroes of the moment are Lauren Alaina from the American Idol for her pretty face and Andrew Crammer because he always looks happy.
My dream is to go to live in America and get a recording contract to do duets with my wife. If I could have one gift this year, it would it be a spa pool. I love being in the water, whether at the pool or in the spa at home. Since our spa pool has broken down, I would love to have a new one. I am very funny and entertaining. My friends love my sense of humour. My advice for my parents - be happy. I always struggled having respite at the villas at the Wilson Centre because I could not do the stuff I usually do at home so leaving respite made me very happy. Since I left last April when I turned 15, I have been able to release the stress that it had on me and it is now easier for me to go with the flow. I did like some parts of my weekends though and would like to visit to say hello to everyone.
LEFT This picture shows that Keegan would like to get married and have three disabled children.
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KEEGAN’s Family We love to see Keegan happy and fully supported in his everyday and future goals. Keegan’s unique abilities are very inspiring as he always comes from challenging perspectives, which open the heart of all those around him. His presence in our life is an incommensurable gift, forever reaching to the deepest parts of ourselves where the Light resides. I am not sure that having a child with special needs has changed our attitudes but it has certainly changed
our lives! We are less patient with the misunderstanding attitudes of others towards our needs. We are driven to challenge the uncaring parts of the system. Nevertheless we are more accepting of life as we discover the richness of our inner lives.
The very best thing that we do for Keegan is to be present alongside him, holding his hand and lending a compassionate ear. We encourage him and reinforce who he is, we highlight his gifts and value him as an
important member of our society. Most of all we give him tools to survive in a society that is not made for him. Having to systematically fight for all our needs can become self-destructive. To balance these negative energies, I have found refuge in my spirituality. My favourite quote is from “A Course in Miracles”: “Nothing real can be threatened, nothing unreal exists. Herein lies the peace of God”.
If I were Prime Minister for a day, I would implement compulsory disability experience for all staff at the Ministry of Health and establish caring guidelines supporting all disabled people and their entourage.
A cherished family tradition is that we always get together at night for a chat just before going to sleep when at home or ringing each other if one of us is away.
Although going to the villas for respite has always been stressful for Keegan, we have enjoyed having our monthly breaks. We are grateful that we were able to rely on Wilson Centre to be there when needed. We always knew Keegan was safe while in respite. 54
from ALHENA’S MUM Alhena brings so much joy and happiness to our lives with her beautiful smile and loving nature. She is such a
strong little girl. She amazes me. The best thing I do for her is to be the advocate that she needs in her life. I can
speak out and get her the best that I can get. I always try to increase my knowledge with special needs so I can give her the best and make it as easy as I can for her. I get most support from my child’s school and the Principal that leads it. I am very fortunate to be part of such a great school that is so fantastic with our special children.
The happiest times for our family are holidaying in Fiji and spending our days in the sun on the beach. Having a child with special needs has changed my outlook on life. Always appreciate what you have as there is always someone out there worse off than you. I am more patient but now I am also a fighter.
If I were Prime Minister for a day - One day would be too short for me to implement what I would love to do. I would like to fully support all special need’s children in the mainstream. I would like the Ministry of
Education to provide support and training for teachers in mainstream settings. I would like Special Education
to be a compulsory part of Teacher’s Training. I would like schools to be responsible for special need’s children and not exclude them or make them feel unwelcome when it gets too hard. And my list goes on and on... The Wilson Home is a place of inclusion, helping hands, creating awareness, keeping us informed and providing us with support when it is needed.
In my family are me and my two fishes (Milly and Molly) and Mum and Dad. They are my heroes and I love them.
My favourite things to do are reading books, going to the beach and dancing. However, I don’t like writing. I like to eat ice cream, pasta and chocolates. My perfect day would be going to the beach, playing with sand and
swimming. But if I could have one wish granted, it would be to go to India and see my favourite Bolliwood stars. If I could have just one present this year, it would be a dog – just like Beethoven.
ALHENA
My name is Alhena and I am 7 years old. My friends like me because of my friendly and loving nature. 55
MATTHEW My name is Matthew Penhall, I am 7 years old and I am ticklish. In my family are my step-dad, mama, step-brothers, James and Alex. There is also my por-por (grandma) and my favourite cousin, Joshua and lots of uncles and aunties. My friends like me because I make them laugh. I like riding my bike, going to the playground, bush walking, reading and music. I love to be active. I love books and I definitely love singing. I also luvvvv rice, chicken with rice, fish and chips, fried noodles, chocolate ice-cream, yoghurts, all fruits and some vegetables. Oh, also cakes and apple pie. I don’t like going to crowded and noisy places and I don’t like shopping! My perfect day is being with my family and extended family. I like having lots of fun in the playground with my friends and then, a picnic. I like riding my bike, doing Reading Eggs on the computer, watching my favourite DVD’s and I sing along with the songs they have. I also like visiting friends’ homes to play and them coming to my home to play. The happiest moment of my life was when I got my guitar (ukelele) for my 7th birthday – Cooool. My heroes are The Wiggles. I love their music and songs. I also like Fireman Sam, Postman Pat and Thomas. My one wish would be to meet the Wiggles and sing and dance with them. If I could be any animal, I would be Kipper the dog! He is so very cute, helps his friends and together they have so much fun!
Advice for my parents: Be patient and watch me - I can! I love the Wilson Home because they have lots of things/activities to do. I especially like the Christmas parties and I have many photographs of them to re-look at. I get to see friends and get a present from Santa. I went on a horse for the first time at the Wilson Home. Thank you. 56
From Matthew’s Mama I love watching Matthew grow up and doing all the cooool stuff. He manages to light up my life when he smiles, whenever he endeavours to do something and wins, he is so pleased with himself and that is very catching! My experience of having a child with special needs has definitely changed my attitudes. I had no knowledge of what special needs meant until I had Matthew. Just being a full time mum was a huge learning curve for me as I have always worked. So, double curves! It is only in extreme conditions that one knows the victories and the deep joys of motherhood with a special need’s child. It has broadened my life, deepened my understanding and I have more compassion towards people. The challenges are there. At times it is a lonely place. But what great joy and fulfilment! I have read extensively about Down Syndrome however, Matthew has always managed to surprise us with what he achieves. He has exceeded all expectations. I think it helps that Matthew will be the one who decides what he cannot do. Otherwise, he can do all things. I also knew that I had to interact with Matthew from a very young age, lots of talking, singing and reading. He has grown up with lots of music and books and he now has a deep interest in these things. As a Christian I depend on my God for everything I need to be the mother Matthew deserves. I say a lot of prayers. I value the unconditional love and support from family and friends. Our most cherished traditions are birthdays and Christmas. Every day dinner is an important meal for us, we have this together. We pray together too as there is much to thank God for. If I were Prime Minister for a day, I would spend a whole day at the Wilson Home and
gain a deeper understanding and first-hand knowledge of the needs of disabled people and their world. I would then turn the existing support framework for disability upside down and inside out to give more support, more money, more love, more and more and more to steer the whole framework into the 21st century. I would do this using my heart. Not my cold ignorance because it is not a matter of business doing well, but it is a matter of the heart and doing things well for everyone.
The Wilson Home. We have known you since Matthew was six months old, so you are rather like an old and good friend. We came to coffee mornings in Matthew’s early years and you offered encouragement and support when I didn’t know what it was all about and felt quite alone. When it was not fun you gave lots of fun and laughter. You are lovely company, the great events that you do, the support and friendship you have extended to us will always be treasured. The activities and events you organize are so enjoyable, professional and thought provoking.
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Isa
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My name is Isa and I am 13 years old and I have a weird sense of humour. Meet my family. They are my mum Sonia, my dad Jess and my younger brother Carter.
My favourite things are to listen to music, have stories read to me and go to Raukatauri Music Therapy. I am happiest when I am at music therapy just by myself.
I don’t like going outside as it is sometimes too sunny and windy.
From Isa’s mum Isa lights up my life when he laughs and smiles. He doesn’t do this too often, but they are worth waiting for! The Wilson Centre provides a high level of nursing and medical care that gives me a chance to relax while knowing that they can deal with the complex issues that can sometimes occur.
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Who wouldn’t want my job? I drive from busy traffic filled roads into a unique environment every working day, and each and every time I do I feel the magic. Extensive grounds that are full of towering native trees, bushes and flowers and often many beautiful brides – a gracious old homestead at the centre – amazing views over the gulf, fishing boats, ocean liners, yacht races and on a clear day I can see the Great Barrier .
ADRIENNE I work alongside people who are passionate about the job that they do – paid workers and volunteers with
many and varied skills but all with a single purpose – to do the very best they can for the families and children who use the many services on site.
I get to meet many families who are willing, after great thought and preparation and many tears, to share some of the care of their very precious children with me and in that process teach me so much.
The path for families who have children with disabilities has more than its fair share of pain – it is often said by
wise men that painful experiences make us stronger – but in reality painful experiences can also cripple and hurt. I continue to be amazed and humbled by the resilience of families throughout their journey. They know what they and their children need and the things that will support them the most.
Families want their child to have a life that is rich with good experiences. They want them to be healthy
and happy and protected as far as possible from hurt and pain. They want their child to be treated with respect and great care and recognized for the unique person that they are. They want them to have fun and be loved. Last but not least I get to provide hands on care and have fun with some truly amazing children and young people. I watch eyes light up as children come in and find their favourite people working that day, or the
fairy and clown visiting. I see teenagers from the local school just hanging out and sharing jokes with another teenager who is completely immobilized following extensive orthopaedic surgery. I watch children expressing themselves by using tiny facial expressions or body movements and being understood by those caring for them. I take children to Christmas parties, Teddy Bear’s picnics, discos and for walks along the beach.
I watch staff carry out very technical clinical procedures and next minute be ready for a spot of wheelchair
dancing with huge amounts of laughter. Wilson Centre is a very special place. I see magic every day – who wouldn’t want my job. 60
Wendy I remember when I showed a family their Parent Accommodation. They had been in Starship for a long time. Their faces said it all when they saw the rooms and the view. They were so relieved and delighted to be able to settle in with their child.
A special moment: A teenage boy had suffered a brain injury and hadn’t spoken since. Every morning I always said ‘Good morning’ to him. One morning I began getting him ready… and he said “Good morning!”
I quickly got the telephone and rang his parents and then he said “Good morning.” to his Mum and Dad. Kids can be so kind and cruel at times but they place themselves in your hands. It must be very hard for children that have huge surgeries.
A time at the Wilson Centre that made a real impression on me has been over the past few years when we have had staff members pass away. I remember the kindness given to everyone in those times. If I could change the world, I would wish for peace and no hunger.
If I had to describe the Wilson Home to someone who has never heard of us, I would say that it is; A standout place, there is nothing like it anywhere. It is Heaven behind the hedge.
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NATHAN
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My name is Nathan Pearson and I am seven. I am strong because I can lift things. My friends like me because they like to help me and care for me and because I make them laugh and smile. I like Mya when she laughs.
In my family are Mum, Dad, Georgia (sister), Nana and Poppa. I like looking after my dog Roxy and sleeping in Mum and Dad’s bed with them as a treat. I like to eat butter chicken. BUT I don’t like doing my maths at school. If I could be an animal I would choose a tiger because I love them and then I can eat meat all the time. My hero is Brooke Fraser she has an amazing voice and I love her. And she smells nice. My perfect day would be going to see her. If I could have just one present this year it would be a Nintendo DS. If I could have one wish granted, it would be to go on a family holiday to meet my grand dad in Australia. I would like to tell my Mum and Dad I am doing good at swimming! I like coming to the Wilson Home to see Sally and Anne in the Trust and getting my splints cast by Moss.
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Natalie Words That Change A Life Forever. The day my son was diagnosed was the day my world stopped. Please don’t get me wrong. Having a disability is not the end of the world but for a split second on that day it felt like my world had ended. I wondered what I did wrong, was it something I did that made him be born too early at 33 weeks? I WILL NEVER KNOW. But not knowing does not help either. My son was 2 years old the day we found out something was not right. Since birth he was always a happy contented boy but he was slower to reach his milestones. I put it down to premature birth as did the paediatrician. Nathan first sat when he was one. His cognitive side was fine he was saying words at 7 months so it never entered my mind that his brain was injured. When Nathan was two my daughter came along, she was a screaming bundle of fury! It was also the time that Nathan was diagnosed with Cerebral Palsy. I will never forget that day. It was a routine check up at the hospital when the doctor told me he thought that there might be problems with Nathan. Never did I think he would say what he did, I sat in stunned silence thinking “No, he has the wrong person�. I almost turned to look around and see if anyone else was in the room. I left the hospital and rang my husband in tears, drove to his work and just cried a waterfall. Sobbing, I told him that our precious baby boy had Cerebral Palsy, all the while not actually believing it. To this day I feel so bad for breaking the news that way to my husband but I was not thinking, feeling or capable of doing anything. I still wonder how I drove to his work. Since that day I have been through grief, anger, blame and now I am in action mode. I am still grieving but also doing all I can to find out what can help my son and also what can help my husband and I deal with this. I have never felt so alone in my life, I have a wealth of friends, but none of them really knew what to say. We kept quiet about it for a long time as deep in our hearts I think we thought if we ignored it then it would not be true!
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Cerebral Palsy comes in many different variations and I am lucky that Nathan can talk to me and he has the most amazing personality and is very strong willed! I am learning that it is not the end of the world to have CP. If he wants to Nathan can and most probably will do what he chooses in life, so long as I as his mother don’t hold him back. Since Nathan’s diagnosis I have met some wonderful people who are worse off than my family but I still believe we all go through the same healing process in some shape or form. My son has since started going to a Barnardos caregiver. What a difference it has made for him going to someone who does not say, “NO it’s not safe you might get hurt.” She lets him find out for himself what he can do. I have learnt a lot from that and now our life is much more fun because instead of saying “No.” I say “OKAY let’s give it a go”. I have realised Nathan’s only disability is his mother’s lack of knowledge about Cerebral Palsy, but I am changing that. I believe you can never get over a thing like this but you learn to deal with it in a way that does not affect your life as much. No one signs on for anything like this when they think about having babies. However, to think of never having him would be a fate worse than death. I would never want to change the past because then maybe my son would have a different personality and I love him just the way he is, because he is mine.
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DAISY
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I like acting, running and lollies. I wish: I was invisible. If I could be an animal I would choose a pig because they are AWESOME.
Daisy sings and dances through life and makes us all laugh with her humour
From DAISY’S MUM The happiest times for our family are: birthdays, Christmas, family times – just us and extended family. We enjoy getting together with other families, watching our child achieve physical goals despite her disability, watching her determination to succeed and seeing her get the most out of life. Our attitudes have changed. We are now a little bit more patient, more accepting of how things are. If I was Prime Minister for a day I would give more funding! This is needed so that every child who needs it receives
funding for therapy and equipment, etc. Whatever is needed for them to have fulfilling lives and reach their potential. I would also like to see families get adequate support. The very best thing that we do for our child is give her love, support and encouragement.
The Wilson Home is a safe haven, a refuge, a point of contact,
a knowledge centre but above all
a place that supports and cares for the children and their families.
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RASHEED
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My name is Rasheed and I am 8 years old. In my family are Nisa, Mummy, Haffeez, Daddy, Raeesa. My favourite things to do are to play Mario Kart Wii game. I don’t like it when Haffee, my brother is touching my toys. I like to eat toast and tea. My perfect day would be to go outside and play with water. The happiest moment of my life has been going swimming with family. My hero is Ben 10 because he saves people. If I could have one wish granted, it would be to be Ben 10. My friends like me because we like to play with each other. One word to describe me is happy. If I could be an animal, I would be a Lion. If I could tell my parents what to do I would say...”Take me fishing.” I liked coming to the Wilson Centre because I liked playing at the park. I didn’t like staying in the bed all day.
From Rajeed’s Family Our happiest times are spent with family and friends. Rajeed lights up my life when I see him with a smile on his face. The very best thing that I do for him is to help him to walk.
Caring for Rajeed is the same as looking after my other children and I treat them all equally. I make sure my special child gets the most normal life he possibly can. I like to hear how their day at school went, what they did and learnt about.
Our most cherished family traditions are Ramadaan and Eid. This is important because my kids will learn how to practice our family tradition for when they grow older. This also brings our family closer together. The Wilson Home is very supportive and helpful to me and my son.
If I was Prime Minister for a day I would help disabled children a lot more, to see more smiles on their faces. My best support is my family.
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Tony
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Our happiest family times were when our children were younger and we would go to the beach, splash in the waves and eat sandy snacks. Although there were still plenty of challenges when Tony was young, somehow life seemed a bit easier when he was small and I was younger.
Tony has taught me many lessons of what is important in life. He has made me look at another world that I had no experience of before. I have met many amazing families coping with very difficult lives with great strength, humour and courage. I am his strongest supporter and advocate.
When Tony reaches out and draws me in for one of his very special hugs, I melt. For the past 14 years Tony has attended respite and school at the Wilson Home Site. Without the support, both physically and emotionally I am really unsure if we would have made it through the journey so far.
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Hayden
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My name is Hayden Thornton-Butler and I am 9 years old. In my family are: Mum, Dad, McKenzie and Andre. My hero is my Dad because he flies planes.
My favourite things to do are outside activities, like riding my bike and swimming. In fact my perfect day would be to go swimming all day. I don’t like being stuck inside. I like to eat anything that is easy to snack on at dinner time. If I could be an animal I would choose to be a cow, just like our one at home. I like being at the Wilson Centre because I love going for walks and doing painting. One word to describe me: busy. My friends like me because I give good hugs.
from Hayden’s Family We get our best support from people who understand us. I am a memory maker and keeper. There are always many stories to be told. If I was Prime Minister for a day, I would give appropriate support for families caring for people with disabilities.
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Anthony My name is Anthony. I am 11 years old and I am nice but I don’t know what my friends like about me.
My favourite thing to do is playing games and I like to eat Kentucky Fried Chicken and a boil up. What I don’t like is watching rugby. My hero is Dave, because he is funny. If I could be any animal I would be a tiger because they are cool.
If I could have one wish granted, it would be to be rich! I like coming to the Wilson Centre because I like being
with all my new friends, but I don’t really like being away from home.
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K
KEARN My name is Raymond Tautari and I am 12 years old. I am ‘DA BEST!’ My friends like me because I will back them when it comes to a dispute. If I could be any animal, I would be a wolf because they are in a pack. I love playing League and my favourite food is hangi. The thing I don’t like doing is cleaning. My brothers are my heroes. The thing I like the most about coming to the Wilson Centre is swimming in the pool.
Raymond 75
Caroline
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Caroline and Majur are at Wilson Centre for
therapies and they attend the Northern Health School class. “There’s a bit of schoolwork, a
swimming pool and a lot of fun and games.” Caroline is recovering from a head injury, learning to do many things again.
When you talk to Caroline about what she
likes, she briefly mentions the physio and the
schoolwork before telling you about all the new friends she’s made. “The nurses, they are cool. Most of the nurses are my friends.”
“I take my hat off to these wonderful, beautiful families who go through so much.” “It’s the kids who are so brave and strong, they have to do all the work to get better.” 76
- Annette (Teacher, Northern Health School)
Majur My name is Caroline and I am 13 years of age. One word to describe me is careful. My friends tell me that I am careful and kind. My heroes are my family because they look after me and if I could have one wish granted it would be to be with them all the time.
I don’t like sitting around. I don’t like resting! My favourite thing to do is travel and going to church. I like to eat any kind of food. If I could be any animal, I would be a turtle because it represents my village. I like coming to the Wilson Centre because I like my Occupation Therapist, Physiotherapist, nurses, teachers and friends.
I like my room and I like going to school.
My name is Majur and I am 16 years old. My friends say I am a funny guy and that I’m smart. I like hanging around with my friends, playing soccer and running. If I could be any animal, I would be a cheetah
because they are the fastest animals in the world. My hero, apart from my family, is Usain Bolt, the fastest man in the world. If I could have one wish granted I would be the fastest man in the world. I like to eat pies and my favourite is mince and cheese. I don’t like shopping. I like coming to the Wilson Centre because everyone takes care of you, but I don’t like being away from my family.
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Roxy
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I am a teacher for Northern Health School. We have a classroom on site for the children who are at Wilson Centre for rehabilitation. Rehabilitation is for children who are either inpatients or outpatients and are here for rehabilitation, as a result of illness or injury. Children also come for respite and for school.
I have been working here for 6 years. The highlight of my job is getting to work with a great bunch of kids every day.
Working at the Wilson Home site I am in awe of the wonderful people who work here. Everyone is here for the children.
I am blown away by the annual Christmas Party – a very special time for our kids and their families. Kids can be so spontaneous!
For me the most special moments are seeing a child standing/walking for the first time after their accident or illness.
Lynne 79
I recall my first job at the Wilson Home in 1969–1970. I was sixteen. The options in that time were to do nursing, teaching or office work. I chose the latter. I was employed as Office Junior, in the Wilson Home office. My main job was to answer the phone; “Good morning, Wilson Home for Crippled Children, How can I help you?” I also had to type up duty sheets and file and check goods and service orders.
Linda The Home was split into wards and the Matron, would walk around the ‘hospital’ in her starched uniform and cloak, with her little poodle following behind. Sisters wore their red cloaks and stripes and some lived in the nurses’ home (where the new school is now sited). Household staff who wore a light brown uniform included cooks, kitchen hands, dishwashers, cleaners, groundsmen and a laundress. The present Conference room used to be the dining room where all the children would be taken at lunch time and served a home-cooked meal, assisted by nurses and domestic staff. Every fortnight all staff would line up outside the office at lunch time to collect our pay packets (little brown envelopes containing notes and coins). The line would extend outside the main doors as the Pay Clerk from the Head Office would check everyone’s name off in his official register. The young patients were cared for in hospital beds or ‘pram beds’, some in traction or wheelchairs. Some of the children who had Spina Bifida would whizz around the hallways down to therapy and school on their trolleys. The corridors were filled with the laughter and chattering voices of children. There were times when I was asked to ‘entertain’ some of the children, on the tennis court, now a Petanque court, or with a book in the corridor. I feel very fortunate to have begun my working life at the Wilson Home, working with wonderful and inspiring children, young people and adults, in such a beautiful setting. I have many happy memories of my early days at Wilson Home, which prepared me well for working. I now work at Wilson School. It is still a beautiful and inspiring place to be.
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Joanne There are so many highlights working at the Wilson Centre. From 1979–1982 we had fantastic Christmas
parties. There was a Christmas parade when the boys dressed up as bikers and when Prince Charles and Lady Diana were getting married.
I loved taking the boys on holiday and having weekend outings. They got up to real mischief. Raiding the biscuit tins and having late night feasts in the dark with the boys was fun. We used to have kitchens on site and Marge the cook baked cakes and biscuits once a week. I met my husband who worked at the Wilson Home as a driver. That has to be a highlight. He left to go overseas on the day I started working at the Wilson Home. He then came back to work as a driver again in 1981 and the rest is history. We are still married 30 years later! Ours hasn’t been the only romance to blossom at the Wilson Home. There was always lots of fun, love and laughter. I think it was a happy home for the children. Now my role has changed as have the services we provide. Supporting families through their journey within the Child Rehabilitation Services has many highlights. Each and every family brings their own special moments. Back in the 80’s magic moments were caring for the boys with Muscular Dystrophy and seeing the world through their eyes. Some had such Mana. Today, working for the Child Rehabilitation Service we all celebrate when a child has their ‘first time’ moment. This might be when they start eating, talking or walking for the first time since they arrived here for rehabilitation. I am always overwhelmed seeing how families are able to turn their lives around following a tragic event.
I first started working at the Wilson Home in 1979 to 1982. I then came back in 1987 and worked part time in the villas. I started fulltime in 1996 and I’m still here! When I started the Villas had not been built. I worked in what was called the Boy’s end. I now work for the Child Rehabilitation Service. 81
Saffron
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My name is Saffron Pakinga-Lawson and I am 15 years old. My friends like me because I’m just like them, special. In my family are my mum Louise, my dad Tere, my big sister Mikayla and my little brother Jesse. I also have my Nana Merania and lots and lots of cousins and aunties and uncles.
I love to be with my family outside in the fresh air or go to the beach and play in the sand and to get in the water.
I like to squash Jesse and Mikayla by sitting on them on the couch. They are my heroes because they will keep me safe and happy. They are so patient and understand I need lots of help and more attention at times from mum and dad. If I could have one wish granted, it would be to talk and joke with my brother, my sister and my mum and dad. My perfect day would be to be on holiday, camping at the beach with my whole family.
I like my forehead being rubbed. I like listening to loud music. I like watching the lawn being mown because I like
the noise of the lawnmower. I like to eat hot chippies, Butter Chicken and other spicy food. I don’t like my teeth being brushed.
One word to describe me: Loved. If I could be an animal, I would be: a horse, because they are strong and fast and tall. And they have big beautiful lips... like me!
If I could tell my parents what to do I would say... “Take a Chill Pill, life is what you make it and I’m doing OK because
I have you two and Mikayla and Jesse!”
The happiest moments of my life are whenever I have my family around. We don’t have to be doing anything special,
just so long as we’re together.
At the Wilson Centre I do lots of fun things like meeting the All Blacks and going for walks in the garden and staying up late! I like that it gives my brother and sister time with mum and dad to do the things they like to do and also mum and dad can have a sleep in!
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Saffron’s Everyday Saffron lights up my life with her infections giggles and I love it when she looks directly in my eyes for longer than a second.
Our happiest times are when we’re all together just chilling or chatting or sharing a great meal. When we can do things that include Saffron, such as travelling overseas, it might take us a bit of time to get Saffron settled
but it’s great to include her in very normal things and to show her the world too We like to celebrate birthdays by having a great meal, one that has been chosen by the birthday person, and we have a huge cake usually baked by mum or bought (depending on the kind of cake the birthday person wants!). Birthdays are very
special because it’s when we can celebrate YOU… the birthday person. Other celebrations like Christmas and Easter are for celebrating Jesus and everyone gets a treat, but on YOUR birthday it’s all about YOU.
If I were Prime Minister for a day I would provide more funding, better access to funding with less restrictions, after-school care for children who have special needs, recognition of siblings and I would give the special child, their parents, their siblings and caregivers a special trip to Disneyland!
Children who have special needs or disabilities were not something we knew much about prior to having
Saffron. When I was pregnant with Saffy (unbeknown to me that she was going to be disabled), we lived in
a small rural community and I was working in a school which had a unit for special need’s children. Sometimes I would spend time in the unit talking to the teachers and carers. I never offered to help feed the children or take them for a spin around the playground in their wheelchairs or anything like that. It wasn’t that I didn’t
want to it just never dawned on me to do those things. I thought the teachers and carers were ‘angels’ and often wondered how on earth could they change the nappies of a 14 year old or how can they stand feeding the child who is spitting the food out left, right and centre and dribbling enough saliva to sink a ship? It finally dawned on me when Saffron was a little older and we were faced with doing those ‘yucky’ jobs that those people had
real genuine compassion, it wasn’t just their job, they felt love for those children and joy to be involved in their care and lives.
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Family I guess having Saffy has made me feel real compassion for people, in many different situations not just for children with
special needs but for children and adults faced with many different challenges be it physical, psychological or whatever, my attitude is to try and put myself in their shoes, how would I feel? I take more interest in the stories and lives of disabled children now and I understand the concerns, the hopes, the fears and the courage of their parents and families.
Saffy is our gift and if she wasn’t born the way she was I don’t think my heart would feel ‘real’ compassion for people. I would just feel sorry for them and that is not what people should feel.
Saffron has taught me that life can sometimes suck, yes, but she’s also taught me that what you give is what you get
back in return. The best things that we do for her is, love her. Protect her. Maintain her dignity. Respect her and include her. The most helpful thing is our Mum/Dad communication, time-out, help from Wilson Respite, Carers, and some government agencies. To us respite for Saffy at The Wilson Home means; whanau, safety, respect, care, fun.
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Isaak & Kayne
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Isaak taught us many things: appreciation for the simple things, breathing and simply being alive. To look and listen for small details, changes in breathing, eye movements and toe twitches. To LOVE unconditionally no matter what tomorrow brings, no matter who you are.
Isaak and Kayne are both believed to have MPEI (Malignant Migrating Partial Epilepsy in Infancy) an extremely rare epileptic disorder whereby the brain has constant seizure type activity in all regions despite medications. This seizure activity prevents the brain from being able to develop or maintain any skills. Our boys’ bodies continue to grow physically; however, they remain in a developmentally “baby like” state dependent on us to meet all their needs. We first started using the respite at the Wilson Centre when Isaak turned five in 2006. Subsequently Kayne also started. When the boys went to Wilson Centre for respite we would say they are going to their “holiday home” and it was nice to be able to have both boys go at the same time and stay together in the same villa. To us it was like our two boys/brothers having a weekend away together (and having their needs met at the same time). It meant that we could have a break from the demands of caring for two boys with such high needs and it gave us the opportunity to do activities with our daughter that are difficult or not possible with wheelchairs. One of our more meaningful family traditions harks back to our wedding. Aaron and I were given a set of handmade knives from his parents for our wedding gift. We used one of these knives to cut our wedding cake. We now ensure every birthday cake is cut with that very same knife, be it as simple as a “Torie” decorated pavlova, cheese cake or proper birthday cake, they are all cut with our wedding knife. As a family we have attended several of the Southern Stars Trust stage shows with the tickets being provided to us by the Wilson Home Trust. They are a great experience for all our children with the boys always getting front row seats, seeing the lights and colours, hearing the noises and music. Torie likes to sit and watch and is captivated by the story and characters. Sadly our brave space captain Isaak flew his final journey into outer space on 25 August 2011. He graced us with his presence and love for 10 years 3 days and 2 hours. For us, the meaning of being parents is to love, care and provide for your child. Despite the odds you can do it.
“There are two ways you can live your life... one is as though nothing is a miracle and the other is as though everything is a miracle.” 87
Sam
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Sam’s face always lights up when we pull in to the sweeping tree lined driveway at the Wilson Home. The contrast of sky against foliage captivates him.
He’s been visiting the site for about 12 years and has accessed nearly all of the services available. Play groups, child
development, clinics, therapies, swimming, out of home respite, school, holiday activities, rehabilitation and art classes. I love it when someone who’s been working with Sam tells me something about him that I didn’t know. That he enjoys listening to Elvis and Michael Jackson. We had not played their music at home before. We do now.
One day I went to pick Sam up from the villas at Wilson Home and instead of being ready and waiting in his
wheel chair he was laying on the floor with Holly. The two of them were having such a nice time together that the staff didn’t like to separate them. Sam had received cuddles and his ‘first kiss’. In return Holly had her hair chewed by Sam. I have to say that Holly has good taste. Sam is a handsome young man.
I feel privileged to be part of the Wilson Home community. The grounds and gardens are a beautiful and
tranquil haven. The people working there are caring and committed to the children’s wellbeing. The heritage buildings and gardens provide a link to the past and all those who have been before. The new buildings give me hope for the future and those who are yet to come.
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Snapshots Personal Stories from The Wilson Home Trust captures a moment in time of children, families, volunteers and staff in 2012. These are the stories of today; of the volunteers who give so much more than their time, of the staff who love what they do and get back at least as much as they contribute and of the children and
their families. They talk about what they value, what is good and what is hard. They offer a glimpse into their everyday lives, both ordinary and extraordinary.