Stephen Quayle
Stephen's Smartie, Great wall of China Challange
Fundraising for Claire House Children's Hospice
Story
Steve Quayle’s Great wall of China Challenge 6 October 2017
Its 3am in the morning and your sick daughter has had the whole hose hold awake for the last 4 nights and you still have to go to work or carry on with normal life. Life doesn’t stop just because you have a terminally ill child, in fact it becomes more hectic, and sometimes you just go on auto pilot. This is where Claire house helped OUR family. We stayed at the hospice in a flat as a family, Bethany was looked after. We were fed and cared for and her sibling taken out for the day and if Bethany was well enough she joined them with her carers from Claire house, we were there if needed. Bethany mixed with children who were in the same condition as her.
Mum and Dad had mum and Dad time in reality we slept we were too knackered to do anything else.
Claire house provide more than just medical care, they provide mental help as well or pointed you in the right direction, were to go and apply for house improvement ect.
Sadly Bethany Died in my arms at the Countess of Chester peacefully, we were only saying half an hour before she died that if the Doctors said everything was okay she could go to Claire house for the weekend on her own, She loved that place and called it her special hotel.
So be a Smartie take a tube of Smarties from me and fill the empty tube with 20p’s which should hold £15, or if you see me at one of the local store on my treadmill training for the Great Wall of China donate something in the bucket.
“Our lives begin to end the day we become silent about things that matter”.
“The time is always right to do what is right”. Martin Luther King, Jr.
Its 3am in the morning and your sick daughter has had the whole hose hold awake for the last 4 nights and you still have to go to work or carry on with normal life. Life doesn’t stop just because you have a terminally ill child, in fact it becomes more hectic, and sometimes you just go on auto pilot. This is where Claire house helped OUR family. We stayed at the hospice in a flat as a family, Bethany was looked after. We were fed and cared for and her sibling taken out for the day and if Bethany was well enough she joined them with her carers from Claire house, we were there if needed. Bethany mixed with children who were in the same condition as her.
Mum and Dad had mum and Dad time in reality we slept we were too knackered to do anything else.
Claire house provide more than just medical care, they provide mental help as well or pointed you in the right direction, were to go and apply for house improvement ect.
Sadly Bethany Died in my arms at the Countess of Chester peacefully, we were only saying half an hour before she died that if the Doctors said everything was okay she could go to Claire house for the weekend on her own, She loved that place and called it her special hotel.
So be a Smartie take a tube of Smarties from me and fill the empty tube with 20p’s which should hold £15, or if you see me at one of the local store on my treadmill training for the Great Wall of China donate something in the bucket.
“Our lives begin to end the day we become silent about things that matter”.
“The time is always right to do what is right”. Martin Luther King, Jr.
Never stop looking out of the window
My name is Bethany and it’s March, and I’m sitting here looking out the window, It’s my nineteen birthday, but I can’t shout, I can’t even move very well. As I have a rare and incurable terminal illness, which is slowly robbing me of everything. I use to be able to run and shout when I was younger, but now I can only sit here and look out of the window.
Look there’s Linda the post woman, I wonder if she has something for me today; I raised my arm and gave a crooked wave with my twisted hand, and gave a big smile. Linda smiled and waved back. Dad raised a lot of money to buy my talking machine; I set it to repeat “Dad the post, Dad the post.”
My name is Bethany and it’s March, and I’m sitting here looking out the window, It’s my nineteen birthday, but I can’t shout, I can’t even move very well. As I have a rare and incurable terminal illness, which is slowly robbing me of everything. I use to be able to run and shout when I was younger, but now I can only sit here and look out of the window.
Look there’s Linda the post woman, I wonder if she has something for me today; I raised my arm and gave a crooked wave with my twisted hand, and gave a big smile. Linda smiled and waved back. Dad raised a lot of money to buy my talking machine; I set it to repeat “Dad the post, Dad the post.”
“Will you shut up, you’re worse than you’re mother nagging me”, he said smiling and leaving to pick the post. He had to move fast before our dog gets it first.
“I grinned to myself at the thought of him in a race with the dog!”
“Do you want the gas bill, or the electric bill, or Council Tax, that gone up this year, and gosh the phone bill you’ll have to un-plug that machine, and stop talking on the telephone with it, it’s costing me and arm and a leg” He was taunting me, he knew full well that all I wanted was the cards he had for me and I didn’t even have to say anything; I’d perfected the art of raising my eyebrows until I could say ‘who me’ or screw up my eyes, to indicate, ‘will you hurry up’. I could even roll my eyes and combined with a movement of my head, signify a gesture of disgust?
Dad would often open my mail, as my hands were disfigured, due to my illness; they resembled those of an eighty year old woman. Giving me the cards to read, a £20 note fell out, and Dad picked it up, and said
“Do you want the gas bill, or the electric bill, or Council Tax, that gone up this year, and gosh the phone bill you’ll have to un-plug that machine, and stop talking on the telephone with it, it’s costing me and arm and a leg” He was taunting me, he knew full well that all I wanted was the cards he had for me and I didn’t even have to say anything; I’d perfected the art of raising my eyebrows until I could say ‘who me’ or screw up my eyes, to indicate, ‘will you hurry up’. I could even roll my eyes and combined with a movement of my head, signify a gesture of disgust?
Dad would often open my mail, as my hands were disfigured, due to my illness; they resembled those of an eighty year old woman. Giving me the cards to read, a £20 note fell out, and Dad picked it up, and said
“That will do for the phone bill” I gave him one of my dagger looks, to which he responded “Okay, okay, I was only joking”
It was time to get ready for my bus journey to the collage which picked me up from outside my house. I have to wear a bib, because my mouth can’t hold my saliva, even with the medical patches behind my ears, which resemble small stick plasters, which in theory the doctors said should stop the constant dribbling of saliva. It helped a little. So I needed the bib to keep my attire dry.
It was time to get ready for my bus journey to the collage which picked me up from outside my house. I have to wear a bib, because my mouth can’t hold my saliva, even with the medical patches behind my ears, which resemble small stick plasters, which in theory the doctors said should stop the constant dribbling of saliva. It helped a little. So I needed the bib to keep my attire dry.
The collage I attend is for young people like me with disabilities. For some reason the school was constantly full of pupils with head lice and they would fall onto my bib, and their natural instinct was to crawl upwards to my head, and that’s how head lice spread. It is a misconception that they jump from one person to another. When they got in to my head they would breed quickly which was an irritation I could not deal with, as I could not scratch because of the condition of my hands. No matter how many chemicals, dad tried I would still get them, and dad would make me smile as he tried to give me some relief from them by combing them out, hoping that the treatment bought from the chemist, would work this time?
While combing he would say things to make me feel better, “You have your own personal zoo here”, or “That I was a secret Green Peace activist saving the head lice from extinction” and that “They are only attracted to the good people not to bad!” He’d drop them on to a white piece of paper that was on a laptop tray which was sitting on my knees, and would make me giggle as he killed each one. He was always good in keeping my spirits up, as he knew that I always felt low about the head lice problem.
Next day I’m off to school and before you know it, the day is gone. I’m returned home by bus to a waiting dad or mum, and the laughter of my brothers and sisters, having fun, so why not me? Why can’t I run and have fun with them like I use to. It’s time for bed and my nightly feeds. I’ve had a tube placed in my stomach, because, due to my illness swallowing food was no more. I could eat at one time, but my illness is now getting the better of me, so each night was the same routine, feeding me a liquid that gave me all the vitamins and supplements I needed, to keep my body going. At least I didn’t have to eat my greens, as dad kept nagging my brothers and sisters to do. Dad would have to prime the tube by sucking the liquid through the tube, most time he would misjudge it and some would go into his mouth; he’d pull faces and with a twist of his nose make a funny noise which sounded like “Yuk!” I would giggle when he said “It’s a good job you don’t have to drink this it horrible”. Then he would kiss me goodnight.
A new day and I’m looking out of the window at my next door neighbour washing his car. He washes it every day; he’ll wash it away one day. There goes their cat, chasing a bird and I scream “shoo little bird” but the scream is only in my head, but thankfully the bird gets away. As the cat runs across the garden my attention is drawn to the flowers, that dad planted last year. I remember he pulled funny faces at me and me at him, as he planted the bulbs. But now spring has come, and the flowers have bloomed; He has spelt my name BETHANY, with flowers and the words, I LOVE YOU, in flowers too which made my heart glow.
Looking out of the window I’m in a world of my own. I seem to spend a lot of time looking out of windows, of various kinds of one or another. The family cat jumps upon my knee, giving me a fright. She settled down and purred and together we watched the neighbours getting ready to go to work, and one by one they would leave the cul de sac. Today I don’t feel so well, all I want to do is sleep.
Next day I am still not so well, and I have and appointment to see my consultant. To make it easy for us he would often use the nurse’s room at the college. On this day dad drove me himself to collage because I was still feeling unwell. On the way I’m looking out of the car window at the houses going by. People are busy doing what they have to do. Oh I feel so weak; I really don’t want to go.
Looking out of the window in the nurse room, I’m too weak to tell them where it hurts; all I want to do is sleep. I hear the panic in the doctor’s voice, he wants dad to take me down the road, to the hospital nearby and phones ahead to say were on our way. Dads still trying to make me laugh as he carries me to the ward, he is trying to keep me calm. Looking through the window of the hospital I can see the birds in the sky, flying free. It’s time for me to be free, but I am weak and have had enough. I hear the doctor voice saying to dad “You have been expecting this for some time? Do you wish us to bring her back or leave her as she is?” Dad did not reply, he did not want the doctor to bring me round. I breathe my last breath; my body is now at peace. I feel no more pain. The doctors say your brain is the last thing to die, your heart may have stopped, your body may be still, yet for a few moments your brain is still active, so before I go I just need to say,
Do not stand there and weep
I am, in but a deep sleep
I am a thousand winds that blow
I am that diamond sparkling white snow
I am that sunlight on ripened gain
I am that gentle autumn rain
I am the soft stars, which shine at night
I am now like a bird in free in flight
I beg you to hush
For there is no longer a rush
Please do not stand there and cry
For I’m not there, I did not die
I will always be in your in your heart
We’ll never be, no not even for a day, be apart
So remember when you look out of that window
Seeing the flowers in their beautiful colours that glow
Never ever, not for a day, stop looking out of that window.
Because every day I’ll be looking too,
And as the flowers say I WILL AWAYS LOVE YOU!
While combing he would say things to make me feel better, “You have your own personal zoo here”, or “That I was a secret Green Peace activist saving the head lice from extinction” and that “They are only attracted to the good people not to bad!” He’d drop them on to a white piece of paper that was on a laptop tray which was sitting on my knees, and would make me giggle as he killed each one. He was always good in keeping my spirits up, as he knew that I always felt low about the head lice problem.
Next day I’m off to school and before you know it, the day is gone. I’m returned home by bus to a waiting dad or mum, and the laughter of my brothers and sisters, having fun, so why not me? Why can’t I run and have fun with them like I use to. It’s time for bed and my nightly feeds. I’ve had a tube placed in my stomach, because, due to my illness swallowing food was no more. I could eat at one time, but my illness is now getting the better of me, so each night was the same routine, feeding me a liquid that gave me all the vitamins and supplements I needed, to keep my body going. At least I didn’t have to eat my greens, as dad kept nagging my brothers and sisters to do. Dad would have to prime the tube by sucking the liquid through the tube, most time he would misjudge it and some would go into his mouth; he’d pull faces and with a twist of his nose make a funny noise which sounded like “Yuk!” I would giggle when he said “It’s a good job you don’t have to drink this it horrible”. Then he would kiss me goodnight.
A new day and I’m looking out of the window at my next door neighbour washing his car. He washes it every day; he’ll wash it away one day. There goes their cat, chasing a bird and I scream “shoo little bird” but the scream is only in my head, but thankfully the bird gets away. As the cat runs across the garden my attention is drawn to the flowers, that dad planted last year. I remember he pulled funny faces at me and me at him, as he planted the bulbs. But now spring has come, and the flowers have bloomed; He has spelt my name BETHANY, with flowers and the words, I LOVE YOU, in flowers too which made my heart glow.
Looking out of the window I’m in a world of my own. I seem to spend a lot of time looking out of windows, of various kinds of one or another. The family cat jumps upon my knee, giving me a fright. She settled down and purred and together we watched the neighbours getting ready to go to work, and one by one they would leave the cul de sac. Today I don’t feel so well, all I want to do is sleep.
Next day I am still not so well, and I have and appointment to see my consultant. To make it easy for us he would often use the nurse’s room at the college. On this day dad drove me himself to collage because I was still feeling unwell. On the way I’m looking out of the car window at the houses going by. People are busy doing what they have to do. Oh I feel so weak; I really don’t want to go.
Looking out of the window in the nurse room, I’m too weak to tell them where it hurts; all I want to do is sleep. I hear the panic in the doctor’s voice, he wants dad to take me down the road, to the hospital nearby and phones ahead to say were on our way. Dads still trying to make me laugh as he carries me to the ward, he is trying to keep me calm. Looking through the window of the hospital I can see the birds in the sky, flying free. It’s time for me to be free, but I am weak and have had enough. I hear the doctor voice saying to dad “You have been expecting this for some time? Do you wish us to bring her back or leave her as she is?” Dad did not reply, he did not want the doctor to bring me round. I breathe my last breath; my body is now at peace. I feel no more pain. The doctors say your brain is the last thing to die, your heart may have stopped, your body may be still, yet for a few moments your brain is still active, so before I go I just need to say,
Do not stand there and weep
I am, in but a deep sleep
I am a thousand winds that blow
I am that diamond sparkling white snow
I am that sunlight on ripened gain
I am that gentle autumn rain
I am the soft stars, which shine at night
I am now like a bird in free in flight
I beg you to hush
For there is no longer a rush
Please do not stand there and cry
For I’m not there, I did not die
I will always be in your in your heart
We’ll never be, no not even for a day, be apart
So remember when you look out of that window
Seeing the flowers in their beautiful colours that glow
Never ever, not for a day, stop looking out of that window.
Because every day I’ll be looking too,
And as the flowers say I WILL AWAYS LOVE YOU!
Hi Bethany’s Dad here I wrote this story as if Bethany was the narrator, as if she was alive today, I think this is what she would of said the above are all based on true facts, sadly she’d died not of her condition but of a twisted colon. Bethany would stay at Claire house, which is a hospice for terminally ill children and teenagers. We spent many happy days there, they gave us help and support when needed, they would accommodate the whole family, while we rested in rooms upstairs. They looked after Bethany 24 -7, if you been brought tears by this story Do read Claire house and If you can find it in your heart to just donate a small amount , no matter be it a dollar or a dine or an euro or any kind.