Claire House

 My name is Bethany. And I was waiting to see the Doctor, I keep falling over, and my Mum and dad don’t know why. Although Dad was very busy he would always make some time for us. Some times when he read us a bedtime story, he would fall a sleep himself. He was always funny.

One day Mum took us for a walk to meet Dad and have a cola, I fell and stumbled, but this was happing more and more, so I dad took a week’s holiday from the pub and set about getting some answers

“Look your being over protective”, the doctor said with a sigh in his voice.

We’d sat in a hot sweaty waiting room for over an hour to have him brush dad off. I don’t think so. Dad launched towards him and grabbed his tie, choking him with it, as I giggled and he said.

“You say that to me one more time and I will not stop choking you, NOW! I have grown up with is little girl, and I am telling you there is something wrong”

“I take it you would like to have a second doctor to have a look then” as he loosened his tie, and I turned to me and smiled.

It wasn’t long, before we were being called in to another consultant room, and he introduced himself and took a look at me. He was twisting and pulling my arms and legs, and running a his finger down my back.

“Mmm.. your right there is something wrong, first she has Spondylosis which is a term referring to degenerative the spine see here her spine has a slight twist in it, her legs and arms react , if it is multiple sclerosis. MS for short, but it’s not and I know as I am the leading surgeon, in MS, but we’ll do some test.

Dad was grateful to him because although it wasn’t good news, he could see that the Doctor could see that Dad was right and I was a little girl getting worse, by the day. In the mean time thing went on as normal. Well I say normal, Kevin had been taken into care, I had loads of people asking me questions, but all I knew was Kevin wasn’t with us any more. I never liked his mum any way, and I knew Dad and her didn’t get on.


“Come quickly” Dad shouted to me he was more excited than me, he had written loads of letters to charities to get me a tricycle, to keep my legs on the go. Now here he was Ridding around the green, doing daft things like holding his arm out to do a turn, he always made me giggle.

Dad was good at getting me things I needed, he may not have had much money himself, but he worked hard at fund raising for me. Often he would come home from work and spend hours on the computer writing letters. He was great at that, as now my mobility was getting worse, talking was an effort, and saliva just wouldn’t stay in my mouth.

Another day, and another surprise, from Dad we were off to Disney world, He managed to get someone to pay for me and him to go and he paid for the rest of the family to go. We had a fantastic two weeks there. On our return home there was a shopping spree arranged for me, Chocolate and purple clothes were on the top of my list.

Next was my talking machine I sounded like Steven Hawkins, these were not cheap, and I even had a female voice on it, but I sounded like an American, but this was a great tool, and for many years kept me in main stream school.

Mum and dad now worked in pubs, and when we moved to London I helped clear the tables in my electric wheel chair. The customers’ spoilt me rotten, and dad would say “you’ve made more than me today” and I would giggle
Dad had shaved his head which made him look mean and hard, but inside he was a big softy. There were times all I needed was a cuddle and to be held tight, and Dad knew this and at night when the pub was closed, he would sit me on his knee with half a pint of cider and black, my favourite, him with his cup of tea. And we would just sit there quietly, before mum would come down and say” you two sleeping down here tonight or are you coming to bed” Dad would tease mum my saying any thing was better than her snoring, but it was dad that snored like a pig.

I only saw dad lose his temper on a couple of times, once was when a couple were fighting in the pub, and he used a Co2 fire extinguisher. His reasoning was you need oxygen to breathe, No oxygen no fight, and true to his word, as soon as they had a good dose of Co2, they would stand back, dad would clump them, and then threw them out.

The other time I thought dad was going to kill the man, it was my 16th birthday and we had a party in the pub for me, when a young man who I’d never met, bent over kissed me, and slipped his hand down the front of my dress and was stoking my breast. I pressed the alarm on my machine, which brought dad over to me, I didn’t want to tell him what had happened, but dad new there was something wrong, and he managed to get it out of me. He was like the incredible hulk, he literally grabbed hold of the man by his testacals’ and neck and threw him through a small window, I don’t think he was aiming for the window, but that were he landed. The man got up and ran away with other locals running after him.

Pubs in London were so rough you wouldn’t believe, half the things that went on, later that night dad was given a present and he went white as a sheet and told the guy to dump it in the Thames. I was later to find out that the man, who had molested me, was caught, had a kangaroo court and was dealt with punishment, I’ll leave you to guess what was in the shoe box, and needless to say his nickname was one hand bandit.

Gosh I am so ill, and we are travelling home, my grandmother has just died. A day after my birthday, I was only speaking to her yesterday, but like me she had not been well for sometime. We were to stay up her looking after my granddad and my two cousins, who had been placed in to the care of my grandparents but to my auntie’s boyfriend hurting them.

Dad would visit when he could but for now I had to run the pub, on of his fleeting visit he arrange for me to go and have some rest bite care in Claire house, this was my private hotel. I loved it here, and they would arrange for the family to stay over too.

I kissed dad on the neck and left a pair of lipstick marks, to which someone point out, dad looked in the mirror, and put his hand to his neck, and said.

“I’ll never wash that off as long as I shall live”

“Yes you will, no I wont” Yes you will, no I wont” this went on for a bout 10 minutes before dad had to leave for work, he bent down and gave me a kiss, and said he would see me on his next day off.

Next time I saw dad the kiss was still on his neck, it took me about 3 hours to remember I’d kissed him on the other side of his neck.

“Dad I kissed you on the other side of your neck” I exclaimed

“ Yes love this is a tattoo, and it will be on my neck a lot longer than you will, live and when people ask me about it Your name will live on, as long as I shall live, and with that I flung my arms a round his neck and said “ I love you daddy”

I’m in so much pain now, dad agrees reluctantly to let them administer me so morphine, he had always held the belief, and you were close to death once they started on the morphine. Claire house staff took there time to dispel all dads fears.

I would have many happy times at Claire house, now I am here for my final time. I am in no pain, I lie so still, gosh the room is so full, of family and friends, and they have come to say their final good byes. Dad is strong and he leads the service, I wish they wouldn’t cry as I am free now and in no more pain. Here comes my ride so I’ll say good bye, and may be we’ll meet one day, and I can tell you more funny stories, about me and Dad.

BETHANY

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. Claire house is a charity, it get no government backing, yet it brings relief from suffering for all the family, be it a few weeks at a time, but when you have been up with a ill person, or a night or even days, this is a haven, knowing that your child has some one sitting with them 24-7

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. Or you can go on line and donate your self at www.claire-house.org.uk
“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.

Many thanks Bethany’s Dad Steve Quayle

Author's Note

based on true life

Reviews

[Eli Blayze]

Stunning. Absolutly amazing. I love reading your works and hope for more to come. Really Really good theme. Keep up the good work.

[pia Z]

An emotional piece, thank you so much for sharing it. I think you should take a look at the grammar and spelling in the piece; your verb tenses shift and there are instances when you use the incorrect version of the words "your" and "you are".

The way the piece reads now, I had a little bit of trouble trying to place Bethany's age. The run-on sentences tend to make me believe that she's fairly young (under 5 years old), but we find out later that she has had a 16th birthday. Better placement of commas and periods would provide more clarity.

I love the fact that you included a very disturbing reality of less-abled people; the fact that there are people out there who prey on their vulnerability. I've noted your personal experience before reading this piece, and I sincerely hope your daughter never had to go through this. This was such a brave thing to include in the piece.

I'm not sure of the impact you want this piece to have; Bethany seems to tell her story in a rather nonchallant way, and it's up to the reader to distinguish between her lack of maturity and the reality her father is experiencing. If you want the piece to focus specifically on Bethany's view of her situation, I strongly recommend that you cut out a lot of the interactions with her father and concentrate on what might be going through her head, no holds barred. If, however, you want Bethany to be the reader's entry into the emotional life of her father, I think you should give us those glimpses through Bethany's eyes and word them in such a way that she can't quite grasp the emotional crux of the situation but we, as readers, absolutely can.

Thank you again so much for sharing this piece; it's an important one. I look forward to reading more of your work. :)