Stories
This page will feature stories from those affected by Leukodystrophy.
Hannah's Story
Amy's Story
Damon's Story
Ben & Jack's Story
Josh's Story
Josh Q's Story
Sarah's Story
HANNAH'S STORY
Hannah may not have known the health and freedom we often take for granted, but she did have the love and care that
many never experience in a life time.
This message is from one of the many cards we have received within the last week. And I want to add that, although I was chuffed, that the person who wrote this would say such lovely things about the care that Jeff and I gave Hannah. I quickly and humbly realised, that the love and care that Hannah got, she got not only from her immediate family, but from her extended family as well. From friends, from the teachers and staff and families at school, from those at Kindergarten, from the people from church, the hospital, from those up at the Doctors, our workmates who knew Hannah, friends of friends, family of friends, pretty much anyone who, by Gods will, knew her. EVERYONE LOVED HANNAH, and everyone who knew her, helped make her so loved and cherished.
She knew how to win hearts, and she never let them go. She has joined the communities around her; inspiring love, forgiveness, and appreciation of each day we are given.
Something she loved was to tell stories. And when she could not communicate easily, as awkward as it sometimes felt, she would make me tell her stories for her. Like having to tell people, that the reason we are late for something, was not because of the traffic, but because I had lost the keys again. And she felt it most important that she inform people of such things as that I had tried on every item of clothing that I owned before leaving the house that day. These were the stories Hannah loved to share.
Hannah could remember. She knew where the scissors were, that we needed eggs from the supermarket, that I need to ring someone about confirming something, or that the library books were due back. I’ll struggle without her.
And Hannah could read a cover up a mile off. She picked up on the slightest change of routine, and queried it until she had discovered the consequences of it.
Because of the bond Hannah developed with loads of people at Starship Children’s Hospital (Auckland), she actually loved visiting the hospital, provided she still had time to go to school afterward. In hind sight, not to say she didn’t love school – she lived for it. But I believe she thought that if she could extract a promise that she could go to school after visiting the hospital on any day, that she was assuring that she would not be made to stay overnight, and therefore, not be made to have things such as blood tests, or monitoring during her visit.
Oh my Hannah, I am so proud of you. You coped with so much. You so wanted to do fun things, things you saw other children do. You were a great gymnast, a wonderful musician, and a beautiful dancer. These are all things we had little glimpses of in you; as you took these precious moments and enjoyed them to the fullest. It must have been so hard to only have the strength to have mere nibbles of what life had to offer. I wanted so much to be able to make you better.
So often I lay beside you, begging God to make you well; or for him to show me where to go, or who to see, to find a cure for you. But no, surely after too long, The Lord revealed that that was not to be. Oh Hannah, God had a different plan, your life was to be short. You were sent to us to show us how to be ceaselessly caring, emotionally strong to support one another, humble enough to graciously accept help, to appreciate to the fullest friends and family, and all and any good fortune we have been given. For these are all things we had to do, to survive each day in caring for you. But Hannah, I want you to know, that this was all worth it, for even one of your cuddles; for one of your tender touches, for one of your secret smiles. You were the most precious gift to have, and we have been so blessed to have had you in our lives. I know that you are happy now in heaven; surely God has abundantly rewarded you for the love you have placed in so many hearts.
Tricia Stevenson
A Tribute from Hannah's dad, Jeff
Hannah, you touched so many people with your cheeky sense of humour, your boldness, your wit, and your kind nature. I mourn the loss of being able to torment any young man that you chose to bring home. Hannah I love you, and you will always be in my heart.
My soul is so much happier and stronger for having known you. Thank you.
AMY'S STORY
Amy Caitlin Horne – a life worth living
A small memento of a beautiful life and how lucky we are, to have been part of it.
There is a sinking feeling in all parents’ hearts when you look at your child and think, something is not quite right. Not wanting to leave it, but yet also not wanting to acknowledge it, in case you’re right. Amy had an inturned foot and an unusual gait. It was 1999 and Amy was 2 years old. We tried physio, development therapy and conductive education in the hope that Amy had simply missed a development stage and that her “clumsiness” could be fixed. When she suffered a bad fall down the stairs as a result of over-balancing and took a long time to regain her walking again, we returned to the neurologist and requested further investigation, most notably an MRI scan. Amy was now 3 1/4. The report was devastating – extensive white matter loss, most likely to be Metachromatic Leukodystrophy. The day in October 2000 that the word ‘Leukodystrophy” entered our lives is forever etched in my heart. After numerous blood tests being sent to Australia on 3-4 occasions over a period of four months, Amy was finally classified as an “undiagnosed leukodystrophy”. The doctors had run out of testing, with none of the Leukodystrophy tests positive, yet her MRI and symptoms clearly showed otherwise. It had been a long and stressful year of waiting for results and we were still no closer to knowing what was happening to our little girl. In the end, we requested Amy’s notes and MRI scan and sent this off to the Kennedy Krieger Institute in Baltimore to be reviewed by their experts in “undiagnosed leukodystrophies”. In April 2001, I opened my e-mail one morning to learn that Amy had Vanishing White Matter Leukodystrophy” as diagnosed off her MRI. A name, but not much to read about, no DNA testing and very little documented cases. A piece of prose which I received at the ALDS inaugural conference entitled “Welcome to Holland” by Emily Pearl Kingsley, gave us special comfort and became very meaningful to us as time went on.
Finally we knew a bit more about Amy’s illness and were able to be a little proactive in keeping her well. Now to get on with life! By this time, Amy was nearly 4, at kindy, using a walker and had a teacher-aide who was there to keep her safe. Amy was fiercely independent and wanted to do everything that the other kids were doing. Jo, Amy’s teacher aide was to become an integral part of our lives and Amy’s best friend.
In the year of Amy’s diagnosis, the genes for Vanishing White Matter were located. We were able to send our family’s bloods to Amsterdam for testing and 3 days before Christmas received news that our son was clear and that my husband and I were both carriers of this recessive gene. I was later able to meet Dr Marjo van der Knapp, the VWM guru and talk to her about Amy’s prospects. Being told that a cure would happen but would probably not happen in time for Amy, was devastating news.
Amy (and Jo) had now started at our local school, where Amy’s brother Ben also attended. It was a proud and happy day in 2002 when Amy now 5, answered her first roll-call at Remuera Primary School. Amy was a happy and friendly pupil who loved school life, was included in all aspects in the classroom and playground, had a nice group of friends who invited her to parties and sleepovers, had fantastic teachers who actively sought for ways for Amy to achieve and Amy was well known through the school community for her smiley face and pink wheelchair with snake wheels. One of Amy’s friends’s described her as “having sparkles in her eyes”. Amy went to school discos and school fairs, where Amy’s highlight was always the big slide accompanied by either Phil or I! Most importantly for Amy, was her special friendship with Jo, who as time progressed was required to take a much more active role in Amy’s day to day work adaptation and care. School was a major part of Amy’s life and she had five very happy years there as a full time and valued pupil.
At home, life was very normal. We did what normal families did (with a bit more preparation and planning) and ensured that Amy was able to enjoy and experience all that she could. Amy loved big family occasions and to eat out. She loved the planning, the dressing up and the social event. She attracted people and we never went anywhere without Amy making a new friend or scoring extra mints from a café owner. She especially loved her sleepovers with Nan & Pops or Grandad & Grandma, and had always packed her bags at least three days in advance of these special treats. Amy was also a home body. She got tired from full days at school and liked to come home and do puzzles, play with her collections of beanie bears, gemstones, shells, money and lollies or just write notes and do stickers. She loved walks, picking flowers and in the last year we gave her a Westie puppy, Snowy, who she absolutely adored and who kept her company and amused for many hours.
We were lucky to have enjoyed some fantastic holidays and our time at the beach each summer was always a great family time to spend with each other. Another highlight was Amy’s “Make a Wish Trip” in October 2006 to be part of a HI-5 studio audience and meet HI-5. We had four very special days together in Sydney which will be a lasting family memory.
Amy’s hero was her big brother Ben, who was the only one who could persuade Amy out of one of her more independent moments and who she loved spending time with.
She loved her family and we were lucky to receive “I Love You’s” from Amy every day. Amy didn’t need fancy gifts, she valued time spent with those she loved and we will now cherish our many, many hours of chatter,laughs,games,cuddles and outings of which Amy was always at the centre.
Amy’s VWM had long periods of little change and then times of rapid deterioration, usually following an illness. Over the last 2 years she developed seizures which became more and more frequent and harder to control. She had a number of spells off school and in hospital but always seemed to bounce back although never quite to the same level as before. This year she had been particularly well except for a 111 to the hospital following concurrent seizures.
Sunday June 12, 2007, Amy had had a great weekend and was looking forward to school the next day because her class was doing a school production. Amy was in the props team and having a ball with paint and glitter. We were sitting down for family roast on Sunday night, after Amy had set the table and told everyone where they were to sit. She would not sit in her wheelchair, insisting on a chair like everyone else. As I turned to get her a cushion, Amy fell off her dining chair taking the full fall, onto wooden floors, on her head. After a few minutes of crying, she slipped into a daze and became non-responsive. At the hospital we were admitted to intensive care and stayed there all night waiting for Amy to wake-up. Amy never woke up. She spent 27 days in a coma in the Neuro ward, developing pneumonia in the last week. They were able to treat the pneumonia, but the disorder had been fully activated by Amy’s fall and her breathing became affected until it finally gave out. On 7th July, our beautiful daughter passed away, 1 day short of her 10th birthday.
Amy taught us so much in her short life. She gave us so much joy and unconditional love and showed us how to make the most of every moment. She had a fierce determination but also a very caring nature that always put others ahead of herself. We miss our bubbly girl every day. She has left a hole that can never be filled but we do take some comfort in knowing that Amy lived her life to the fullest and was still enjoying all the things that were important to her right up until her fall.
We have special children. They are called this, not for what others see on the outside, but, for what those who take the time to care, are privileged to see on the inside.
We love you right up to the moon, and back.
Phil, Lynne and Ben Horne Auckland, New Zealand
DAMON'S STORY
Our story begins in February 1998 when our much longed for baby boy was born. Damon Geoffrey O'Keefe arrived with a healthy roar and a healthy appetite with great joy and expectation. What relief! What happiness that all was well! Dreams of the future, affectionate jokes that he will follow in his dad's or mum's footsteps. Who did he look like with those beautiful copper curls and almond eyes? An angel no less. He was diagnosed with Canavan Leukodystrophy at six and a half monts of age. D-Day we call it, the day we knew he really was an angel, fated to share his time with us only fleetingly.
The intensity, the agony of knowledge braced against an overwhelming love of a child soon to be lost. Every day, every movement, every emotion, every word made the more meaningful, Damon's special journey is our special journey, soaring to heights unimaginable, to depths beyond description. We are filled with admiration of his courage and humbled by his passion. We would whisper and then shout to the sky in desperate pleas and then laugh joyously in remembrance of what we have now.
Damon fought many battles and won to return all the more ready to take on the music of life. His last battle was lost in September 2000. Till the last he gave everything his best. He succumbed to yet another respiratory infection, but only hours before intensive care he was laughing and wrestling with his dad and loving his brothers' cuddles.
Damon died after a huge fight with the inevitable. He died in the loving arms of his dad as he was born into the loving arms of his mum. He was surrounded by the love of his family, his carers and his friends. We were all there to share in the life of a truly special boy, a traveller who taught us much and his legacy as a teacher goes on.
We love you and miss you little one and hope that heaven's hugs are as great as ours.
Love from your Mum, Dad, Adrian and Connor
From his big brother Adrian
Damian's story is much bigger than words, but I can try to say something.
Damon loved going to the beach with the wind in his hair. He loved his music and laughed with gusto, especially when we danced. He loved waterfalls and visiting local cafes to have coffee. He went to the Windsor and ate chocolate. He rode numerous rides at the Melbourne Show and went everywhere possible in his green buggy. He visited lighthouses, bush dances and loved the bustle at the Queen Victoria Market. Damon loved his life and we loved every bit of the time we spent with our special little boy.
BEN & JACK'S STORY
I never felt much different to those around me. Faye and I were in our twenties and like many couples and friends of our
age were facing the prospect of being parents for the first time. We quickly got used to the idea, doing all of the responsible things. No alcohol and only healthy, organic food. I did my best to accommodate Faye’s back aches - giving back massages each night and of course we began picking names - Jack or Tom for a boy and Mia for a girl.
June 23rd 2000 was a very long day, a day that really started 22nd June with a trip to the hospital and the start of a very long labour. Faye’s labour was difficult, however I am sure if Faye was describing it she would use words more colourful and descriptive than “difficult”. Ironically Faye had initially requested an elective caesarean but was told she would have to experience the joy of childbirth the natural way! Thirty six hours later the hospital saw the error of its ways and granted Faye her wish of a caesarean. The labour was labelled as a “failure to progress” and consequently an emergency caesarean was required.
At 1925 on the 23rd June 2000 Faye’s hard work paid off. We had a beautiful and very big (10Ib9oz) son. He was promptly named organic Jack, given his mums strict organic diet. Jack was a beautiful boy who appeared a little irritable displaying some unusual posturing but what did we know we had never done this before; it was all very new to us. We were reassured everything was OK.
On returning to the hospital the next day I took a wrong turn and ended up at the reception for the special care unit. I was lost and puzzled. But as it turned out Jack had been transferred there overnight as a precaution, taken by the nurses due to Jacks irritability, posturing and general behaviour. It was quite an amazing site to see Jack in the special care unit at 10lb 9ozs compared to the premature babies. Especially given that Jack was a day old and the other babies’ weeks old.
Sadly the reassurances I had received from medical staff the night of Jacks arrival evaporated in the air as it became apparent Jack was a baby in distress. Jack had difficulty with feeding; he was unable to move his arms and appeared to be in pain and distress. The only time Jack was settled was when he slept and to do that he had to be heavily medicated. During Jacks time at the hospital Faye and I stayed at Ronald McDonald House so we could be close to Jack. One night after returning from the ward I took the time to read articles on a notice board about other families who had used the facility before us. It was a humbling experience to learn other people’s stories. Some of those families - as in our eventual case had been fortunate enough to leave the hospital with their child alive. However, sadly as with most of the stories many children’s lives ended where they had begun. It was with this that my perspective changed and I decided to focus on what I had, not on what I didn’t. Before that moment I had often looked at other mothers and fathers contently feeding their child and enviously wondered why Jack couldn’t feed like that. I realised from then onwards that my focus would not be on what Jack couldn’t do but what he could do and how extra special that was to me. Jack would beat his own drum and he would dictate to us if and when he was ready to do something. Each day would be dealt with as it arrived. Jack was discharged from hospital at six weeks old after being fitted with a peg (gastrostomy tube).
Jack is today still working hard, he is a very determined little boy who has learnt to move his arms, lift his head and roll over and most importantly smile and laugh. He loves life and enjoys it to the full. He loves going to school and loves books, he also likes to watch cartoons such as “The Simpson’s” and “Sponge Bob Squarepants”. His favourite thing above all is going out for the day. He still has a lot of hard work ahead if he is going to be able to one day drink, sit up, walk and talk. But who knows one day he may get there. Jack is a happy and inquisitive (some might say nosey) boy who is curious about everything going on around him, his big brown eyes take everything in. He was nicknamed “Hawk-eye” by the Nurses in the Intensive Care Unit at the Hospital once when he would pop his head over the side of the bed to watch intensely what they were doing to other patients!
When Faye fell pregnant again we were pretty sure that the baby would be fine. Ben was born by elective caesarean on 12th September 2002 and despite having a completely different personality and more skills compared to Jack, it was apparent that they shared the same undiagnosed condition. As parents it was a difficult time, a time of mixed emotions. On one hand we were excited and genuinely happy with having another beautiful boy and on the other we knew the battle that lay ahead for Ben in achieving the things most of us take for granted. Sadly the medical profession at the NICU didn’t always share our optimism. “We appeared too happy” we were told and often because we disagreed with some of their opinions consequently we weren’t treated well.
It was amazing that even though the medical profession was unable to give answers to most of the questions we asked, they claimed to be able to look at four week old Ben and dictate how he would live his life and what his limitations would be. We were told he would NEVER feed normally and would need a gastrostomy. Their bench mark was Jack; our bench mark quite appropriately, was Ben himself - the individual. Ben, as with Jack before him would beat his own drum. It was also very apparent to us that he was very different to Jack, though they shared some similarities.
Ben today is a very hard working boy, he eats very well and has even learnt to feed himself certain food. He has learnt to drink using a bottle which he is starting to hold himself. Ben is learning to use sign language to communicate and gets around by rolling (there’s no stopping him when he wants to get somewhere!) He has also just started to use an electric wheelchair. Ben is a loving, affectionate boy who enjoys lots of cuddles. Ben is probably the happiest child I have ever seen, he finds joy in everything and spends most of the day laughing. He is an absolute joy. Like Jack he has some hard work ahead if his going to be able to sit up, walk and talk. But who knows - with his adventurous spirit what he’s capable of. He’s certainly determined to be as independent as he can be.
Jack is now seven and Ben has just turned five. Despite much investigation they remain undiagnosed. Both boys have had many hurdles to overcome and they make slow, steady progress. Unfortunately Disability Services in NSW such as The Department of Ageing, Disability and Homecare have down-graded and regressed over the past few years to a stage where now we have to fight continually for the services that Jack and Ben require, this is exhausting and really takes a toll on our health. I have said for some time now that the most difficult aspect of caring for Jack and Ben is having to fight for the very services that should be a basic human right. I have just read the book “Disability in Australia – exposing a social apartheid” and this pretty much articulates what barriers are put in the way of people like Jack and Ben reaching their full potential.
Through Jack and Ben we have had the opportunity to meet and get to know many very special and wonderful people. We have also been very lucky to find a wonderfully supportive and caring Paediatrician. Jack and Ben have benefited greatly from services such as the RDA Nepean (Riding for the Disabled) and Velma’s Pets as Therapy, these organisations are run and staffed solely by volunteers who give up their time to give children like Jack and Ben a better quality of life, they are simply wonderful.
As parents we are immensely proud of Jack and Ben, they show great strength of character and determination. They always find happiness and joy in the simplest of things and have taught us both a thing or two about what is truly important in life. Despite Jack and Ben’s profound difficulties they have a very good quality of life and are very happy little boys. We couldn’t wish for more than that.
JOSH'S STORY
Josh won a prize in the WA section of the 2006 Heywire Competition which is run by the ABC. Josh used his prize winning story in our 4th Edition of Book of Stories 'Remembering - Those Touched By Leukodystrophy'.
Josh's favourite things are cycling for fitness and competition, keeping fit, going to the beach, cafes, his best friend Gypsy (his dog), the West Coast Eagles, photography, being with family and friends, listening to music, comedy and humour.
Josh Yates – ‘The Biggest Decision of My Life’
"Where am I? What's happening? Leave me alone!"
I wake up, violently trying to rip out whatever it is that's trying to choke me. "What's happening?" I ask, but no noise escapes. People are trying to restrain me. Finally I calm down and hear that I've had a seizure, been in two ambulances, Royal Flying Doctor, and now I'm in ICU at Princess Margaret Hospital. A bit more than the average day… what haven't I done?
Why? The answer comes from my neurologist. We have a bedside meeting about my disease; the same disease that took the lives of two of my uncles. It's a metabolic disorder, Adrenoleukodystrophy. The only chance of surviving the disease is a bone marrow transplant.
Weeks later we meet with the Haematologist. I am given a huge medical document outlining all of the risks of the transplant. The scariest ones say, "Chronic Graft Versus Host Disease is the major cause of deaths after a haemopoietic stem cell transplant. And veno-ccclusive disease is a serious and life threatening complication." Thanks for telling me!
Lucky I read the book then, because a few months later I'm vision impaired. No one in my family is a suitable donor. But some great news comes; an excellent match has been found in the Australian Bone Marrow Donor Registry. Another meeting, another doctor. What are my chances? Ninety-five per cent. Odds look OK. Decision made, here we go.
Approaching the transplant I am scared and uncertain. I don t know if I am to survive. Broome, for two weeks with my family lets me prepare. Already I am on a drug to stop a bacterial lung disease and I have to visit the hospital for another blood test. Great!
At home again in Busselton we cover the walls of my house with photos and have a party. It's a combination farewell and exhibition. This is goodbye for a very long time; only my family and medical team will be allowed into my isolation room. All other contact by phone, if I'm up to it.
I feel so flat when everyone leaves that night. The next morning we drive 250 kilometres to Perth. Will I ever return to Busso? I move into hospital. Mum and Dad are across the road at the House of Life. The next morning, I have an operation to insert a line into my chest and one into my arm saving me hundreds of injections. In the afternoon, two weeks of intensive chemotherapy start. I get very sick; you wouldn't want to hear the messy details.
Two years later, I may be blind, but the positive thing is that I'm still here living in my home town of Busselton
JOSHUA QUINSEY'S STORY
This is now my third and continuing story of Joshua Quinsey, son and brother. He is now a teenager and we are very proud of him. The last story I wrote was when he was seven, so we are still on the rollercoaster ride of some low points and some very high points. Josh has Undiagnosed Leukodystrophy, he is unable to sit up unsupported, has no motor skills and no speech but does try very hard. Josh still understands everything and communicates really well with nodding, shaking of the head or his facial expressions. You can definitely tell what he likes and doesn’t like. Sometimes we actually have to spell out words to each other because if he hears something he won’t stop nagging until we do it. He wants to do everything everyone else is doing, so always keeping us on our toes.
At the beginning of 2002 Josh, the girls and I moved to my home town of Hamilton, Western Victoria. This was not an easy decision because I was moving Josh to a rural area where the services are not readily available for someone, especially a child with high needs. But I also care for the girls and when Josh was sick the girls were limited in what they could do. In Hamilton they had grandparents who could run them to sport or outings or if Josh was in hospital their schooling would not be interrupted. We all settled in quite quickly. I also met my partner, Dennis, in Hamilton. Josh loves his guitar playing and jokes. Dennis is a great support to me.
Josh attends the Hamilton Special Development school, he loves school and never, and I mean never, wants to stay home; but he does have lots of girlfriends so this could be the reason. The school has tried very hard to accommodate Josh with his needs, especially sourcing therapists. It was one of his therapists who suggested that we look at bo-tox for Josh as his arms and hamstrings were becoming quite tight. She referred us to the Monash Medical clinic. The bo-tox relaxes the muscles or tendons and Josh receives this treatment in his hamstrings, groin, hands and fingers. This has been a success.
Scoliosis has become a major problem for Josh, dealing with a lot of other issues this sought of crept up on us. The surgeons feel that having such a major operation to correct the spine is too dangerous given his previous history with anaesthetics and his lungs. He has had his adductors and hamstrings released. This procedure as well as bo-tox has helped keep his hips aligned. The curvature of the spine is quite severe.
During these visits to Monash we were referred to their Physio and O.T. departments; hand splints – night and day were made, which Josh wears without a complaint. We were also guided to a new wheelchair, the back is a foam pour to his body, he is able to sit much more comfortably, and he has a head support which is just fantastic, a band across his head to hold it up, I don’t know were we would be without this. He uses a standing frame three times a week at school and swims in a hydro therapy pool twice a week.
We are part of the Very Special Kids organization, which is great. They offer respite at the house, counselling, family support and sometimes tickets to special events and outings. Josh is always made welcome at the house. We stay in the parent accommodation when Josh has medical appointments in Melbourne which can be fortnightly.
Last year Josh had a wish granted by Make A Wish, we went to Port Douglas, he had a wonderful time. Flew on a plane, rode in a train, glided through the air in sky rail, and sailed in a boat to the Barrier reef, the weather was wonderful so he could swim in the pool and spa every day. We have a great family video of this to always remember. Make A Wish organised everything to perfection, all hassle free, and made us feel so special.
Samantha left for university this year, we talked to Josh throughout last year so it wouldn’t be such a shock, he loves talking to his sister on the phone and he is very excited when she comes home. Ashley is in year 12 this year so we are preparing Josh again for another major change in the household but I’m sure he will cope (unlike his mother!). Josh and I will miss them terribly but just another challenge for us all.
People sometimes say how terrible it is and don’t know how we do it, but Josh was diagnosed at sixteen months old, we really do not know any different, it is very stressful and frustrating at times but also very rewarding. This is our family and this is our life.
Deirdre Quinsey
SARAH'S STORY
A Eulogy, in the form of a letter written to Sarah, from her mother Jan.
Dearest Sarah
It is Sunday night as I’m writing this – with the beautiful big gold candle that Tony lit for you on Friday night still burning just in front of me.
You looked so peaceful Friday evening, sitting in your chair in Dr Adsett’s room, your beautiful thick blonde hair tied up in a big blue scrunchie, and wearing that soft blue sloppy joe with the word “Angel” emblazoned across it, your eyes partly open. I don’t think I’ve ever seen you looking so comfortable sitting in your wheelchair! I put my face close to yours and could smell your hair, and I held your hand – your fingers soft and curved, relaxed at last. The time that your dad and Ali and I had with you that evening was very precious.
Thankyou for coming into my life – you’ve taught me so much- most of all the real meaning of love. I experienced the joy of real giving, and I learnt the importance of the preciousness of life itself. Every day with you was a blessing.
I know you loved being in the midst of everything that was happening. Whether it was being with us as we played cards on the lounge room floor, or sitting on my lap around the BBQ in the back yard. We had some really good times –
I know you loved floating on your back as I towed you around the pool. I’d swim sidestroke and hold you under your chin. Afterwards we’d relax in the bubbles of the warm water in the kid’s pool. Do you remember King’s Beach and sitting with me in the sand in the surf as we got tossed around by the waves? You put a trust in me that no one else dared to have and we never once went under!
I know you loved going camping at Cressbrook Dam, sleeping in the caravan, being out in the boat, and sitting on my lap around the campfire.
How about all those country music weekends – You’d stay awake for hours taking everything in. I will always remember taking you into the hall at Allora last year – a room filled with people and a band playing on stage and your eyes immediately lit up in recognition - your big blue eyes wide open.
How about watching the fire works at Queen’s park each Christmas. We never missed a year – and the noise of those crackers going off didn’t seem to scare you at all…..
And all those nights you put up with my singing and playing guitar into the early hours of the morning – you never once complained that I was off key or too loud…unless, of course, me being off key was the reason you weren’t asleep!
I know too, Sarah, that you enjoyed going to school. You always loved the sound of the other kids’ voices – you loved listening as they sat on the floor next to you and read you stories, held your hand and played with your hair. I know you especially loved the music lessons – Your teacher Mrs Lynch told me that she was sure you were singing on many occasions. Your aide, Kathryn used to tell me this as well – they noticed how your chin moved up and down when the other children were singing. And weren’t those wheelchair races really something at the sports’ day last year. I don’t know where Mrs Wilson got all those chairs from but it was a lovely idea. I don’t think you’ve ever been pushed so fast in your life but the little boy pushing you was pretty determined that you were going to win that race!
I remember Sarah, when you were about 2 years old – you used to crawl in and out of the saucepan cupboards - taking everything out in the process and then finding they made a terrific noise when saucepans and lids were banged together. I remember you crawling in and out of pantry – often bringing cans of food with you and stacking them on top of each other to build a tower - you would sometimes get up to four or five piled high before they would come crashing down. Luckily you never hurt yourself. And I would wonder why you didn’t take the same delight in putting them back in the pantry as you did taking them out!
You were also very studious Sarah – always doing jigsaw puzzles or reading books – your favourites were the Bananas in Pyjamas series. I remember making you an activity book – you especially loved the pages with the matching colours and shapes - you knew exactly what went where and you were forever pulling out all those lady bird beetles.
You also knew a few signs then Sarah - You especially loved the swing and would sign “more” to me when it was time to get off. And it didn’t take you long to realise that when you used the “Toilet” sign and made the “a a a” noise, you had our immediate and undivided attention – Many’s the time your dad and I stopped what we were doing, took you to the toilet and you just wanted to play with the toilet roll or muck around. It was interesting that when Ali was born you suddenly needed to go to the toilet more often – well, we both knew what that was really all about!
Do you remember when you were about four and getting your walker – how proud you were walking into the shops at Clifford Gardens – and when you got tired, I’d put you in your pram.
You had the most infectious laugh, Sarah, - do you remember when daddy used to blow raspberries on your belly and his beard tickled your tummy? And you used to give the biggest, sloppiest kisses and we couldn’t get enough of them!
You also used to love to dance – I think Grandma started that one. When you were about 7 months old she used to stand you on your change table, holding your hands and sing this song about a baby duck wibbling and wobbling. You would bend your knees and shake your head and bounce up and down laughing. You also used to dance like this when I sang Rock Around the Clock to you. If I have one regret Sarah, it’s that I didn’t dance often enough with you when you were able.
Well, Sarah, as you got older your muscles didn’t work as well and you were unable to do all those things - what you treasured most was being around people – and we all treasured you, too, sweetheart. And by the way, did you know that your name means “Little Princess”? You will always be our little princess…….
Thankyou for giving us 13 years of your life - I’m glad you were able to slip away peacefully – in daddy’s car with Ali sitting next to you and holding your hand. We didn’t know you had gone sweetheart although perhaps Ali did as she told Daddy that you weren’t blinking. I’m glad you didn’t suffer…….We all love you Sarah…..
Rest peacefully in your Angel jumper….Your candle still burns brightly….and will forever burn brightly in my heart……..Mum 21st August 2005.