Sunday, 21 May 2017

This has not been an easy blog to write

SUNDAY 21st MAY 2017:

I do not want to write this diary entry and today may not be the right day to actually publish these words but if I do not then this writing project will probably come to an end. If it does the hobby I have pursued since I was seventeen years old, a hobby I have decided to make central to my life in my remaining years, will also come to an end. Many of my diary entries are deliberately silly, when I say silly I mean fun.  To my grandchildren I always refer to myself as Silly Old Granddad, to my sons for the first time yesterday I called myself Your Silly Old Dad.

This diary is meant, overall, to be my outlook on my life, last Friday morning my life changed for ever. I can not imagine what life will now hold in the years I have left.  I am going to pour my heart out now, I am pouring it out to myself. I have always said that a writer writes for his own enjoyment, winning readers and making any money from his writing comes most definitely in second place.  I am writing this page for myself. If you chance to read it then you are welcome, please read on but as I rattle the laptop keys I am writing for myself.  This is going to be a very long diary entry, I have a lot to say.

Perhaps it was twenty-five years ago, it could be a few more, I was offered a very well paid commission from a national magazine to write an autobiographical feature about being a parent of a child suffering chronic renal failure. I turned it down. I would not write the article because the magazine's house style was too prescriptive. It told me how many words had to  be in each paragraph, how each paragraph should progress through the story and what each should contain.  I do not work like that so turned down what today would be a couple of thousand pounds for half a dozen hours work.

When I write a story I do have a plan, my own plan not a magazine editor's plan, in my head. I seldom write that plan down. However, for the writing project I am currently engaged in I have a formal written plan.
Here is my plan for my story THE BRIDGE HOUSE.

My story begins in 1901 when the central character, Lily - my grandmother, has recently had her eleventh birthday. It continues until shortly after the birth of my daughter, Rebekah. She was the first girl to be born in our direct family line for one hundred years.

My grandmother had three sons and never the daughter she longed for. In The Bridge House and its first chapter there is a character who similarly longs for a daughter and takes Lily under her wing as an "adopted" daughter.

My grandmother then had four grandsons but never the granddaughter she longed for.
My wife and I had a son, my brother and his wife had a son, we then had another son. My dear grandmother thought another generation was there without a girl.

I was not present for the birth of my third child, I had to arrange for my two young boys to be looked after before I could get to the hospital. When I arrived I was too late. My wife was
sitting in her hospital bed holding the new addition to our family.

"Is he alright ?" I asked my wife.

"It's not a he," she said, "it's a she."

"Are you sure ?" I rather stupidly replied.

"Go and phone your Nan."  My wife said.

I did. "When she picked up the phone I said to her, "When are you coming to see your great-granddaughter ?"

Later she told me she put down the phone after we had finished speaking and, to use her words, had a little cry.  I doubt my grandmother in all her long 94 years life cried tears either of joy or sadness more than a small handful of times.

Early on Friday morning I received a frantic phone call from my daughter's husband to say she had stopped breathing. I raced to their home, a forty minute drive, to find two ambulance crews working to save her life but she had gone.  The past forty-eight hours have been the hardest in my wife's and my life. Neither of us have managed to cry properly, we want to and while the tears form and the lips quiver the sobs remain within us.

My daughter, my beautiful Rebekah, was born with long-term kidney failure. She spent all of her childhood in and out of Guys Hospital in London. She had two failed kidney transplants. It was planned for me to be a live donor and to give her one of my kidneys. I set up a TV documentary to be made, filming the two operations to help promote the Organ Donor Card.  Through my hobby of writing I came to know Elizabeth Ward who founded the donor programme, I did writing for McDonald's the fast food giant, operator of Ronald McDonald Childrens Charity and Ronald McDonald House. I came to know the then UK senior executives of the company.  Everything was ready for the TV documentary. Less than half a day before the twin operations the transplant surgeon, Geoff, cancelled the project saying new tests indicated too big a risk of rejection and it would be morally wrong to put my health at risk to go ahead.  I pleased with him but he could not change his professional decision.

The board of governors of the school where I was head of year had given me three months fully paid leave.  I took one week, a terrible week where I could not face going out of the house or seeking anyone other than family. That is exactly how I feel right now.  Back then I knew if I did not snap out of things I would have a nervous breakdown so I went back to work.

My classes had been taken over by a former deputy head, a disciplinarian but those classes were giving him a hard time. It was, however, nothing to the hell the three hundred teenagers were giving to the guy who was standing in for me as head of year. He did not like the way in which I ran my year group and was determined to put in place a more formal and traditional regime. He was failing every day as my students refused to accept him. The morning of my early return to work I walked past the rows of seated teenagers to the front of the assembly hall, I heard the murmur go round He's back

Many of those former students who were in that assembly hall all those years ago, and others who were in different year groups who had me as their head, have sent me such beautiful messages on hearing of my daughter's death two days ago. I have just counted those messages, they are not all from who I call my LEONITES - my former students at Leon School, but there have been 45 messages in the past 12 hours.  No, I have just checked - up to fifty now. THANK YOU THANK YOU.  One kind person wrote: Dave, you was my favourite teacher, and somehow I'm feeling your pain more than ever. Not all messages are from Leonites, some are from people who knew me way before my time at Leon School.  I can not tell you how special ALL of those messages are to my wife, Maureen, and I at this time.

So much of Rebekah's childhood was tied in to my work at Leon School. Please do not tell me I was a good teacher, I was not.  I am not sure I could be considered as a good head of year in the traditional sense but I hope I was a good person who went beyond a professional level of care for those in my charge and made things a bit more personal.  I started my teaching career shortly before my 19th birthday. I was an unqualified teacher in charge of PE and games in a private boys preparatory school. As I loved music so much the headmaster put me in charge of that as well.  Years later it was intended for me to become headmaster of that school but with Rebekah's illness I simply could not take on the responsibilities. The headmaster closed the school, retired and sold it to a developer where there is now a small housing estate.

Bruce Abbott, who was head at Leon School and my boss, was so incredibly kind and supportive to me as I was forced to take so much time off work for hospital visits. He came to me one day and said, "Stop taking these days off without pay, you should be paid." He and his wife, Jenny, were so lovely.  When Bruce was himself seriously ill, shortly before the end of his life, I wrote to him to wish him the best and thanked him for the strong friendship he had shown to my family.

Two years after the time when I did not become a live donor I took a group from school on what I called a study trip to California.  I organised four such visits to California, Nevada. Mexico and the Grand Canyon in Arizona but they were, in truth,  the ultimate school holidays - not a lot of STUDY about them.  On that last one I had driven overnight, taking our hired mini-bus from Tijuana in Mexico to Los Angeles. While everyone played on Malinu Beach I lay in the sand to sleep. There was then a long overnight flight back to Heathrow. As we emerged into the arrivals hall I was met my a friend who said; "You are not to worry but Rebekah had a kidney transplant last night.  I had my two sons with me who had made the trip with my school students, my wife had remained in England and taken Rebekah on holiday in Somerset.  No mobile phones then, she had a bleep which sounded to say the hospital had a kidney for her.

I went home, I had a bath and arranged for the boys to be looked after before heading down to London to see my wife and daughter. I had with me a Disney blanket we had got for Rebekah from Disneyland in Los Angeles. That blanket is now on her settee in her home.  The first thing Rebekah said to me was, "Look Dad my legs are pink."  The kidney was working.

If only it had been that simple.  Rejection set in and she was heading towards losing her third transplant. Sue, the consultant, took my wife and I into a room and explained if the took all of Rebekah's blood and filtered it through a machine the anti-bodies could be removed and possibly stop the rejection. I urged for the doctors to do this.  Sue then explained about the danger of Rebekah catching an infection, even a simple cold. "Then you will make her better, you will treat it,"  I said. "That is what I am trying to say,"  Sue said. "We will not be able to treat it."  She was saying that Rebekah would die if she took even the slightest germ into her body.  Beck was far too young to legally make that kind of decision, knowing what she would wish had she been older we agreed to the procedure. It worked.

One afternoon I was waiting for the lift on the ninth floor of Guys Hospital Tower where Rebekah's ward was. When the lift door opened Sue Rigden stepped out. "Good news isn't it ?" She said.

"What good news ?" I replied.

"Has nobody told you !  The biopsy results - NO SIGNS OF REJECTION."

Rebekah then went from strength to strength and became a new person. We exchanged simple letters with the family of a young boy who had lost his life and donated the kidney to save Rebekah's life. How do you thank a family in that situation ?

Throughout her childhood I was the one who went with her to the Chronic Renal Failure Clinic at Guyz Hospital and then to the monthly transplant clinic. At first we used to go by train but I changed to driving. We would drive through The City Of London, turn left at The Monument and cross Tower Bridge to Guys Hospital. This was at the height of the IRA bombing campaign on Mainland Britain. One Sunday a giant bomb exploded in the City so closing the route we would take.  I had to navigate a new route through this most difficult part of London. There were security check points to pass through on the way into and out of the City.

On on occasion there was a tube strike so more than the usual number of cars were parked.  I could find nowhere to park so stopped on double yellow lines. Returning from the clinic I found that not only had I received a parking ticket, which I expected, but my car had been removed to a police pound.  In those days the police controlled parking, not the local council and private sub contractors.  There was no tube running so I took a taxi way, way across London to pay for the release of my car. That taxi driver refused to charge me for the ride. The consultant, Sue Rigden, spoke to the police who refunded all of the money I had paid for the release of my car.

We used to call Rebekah our LITTLE MISS SUNSHINE. That she was.

Leaving school she trained as a nursery nurse. This was inspired by those who had helped to continue her education in the Guys Hospital School. She loved her work and loved children.

The happiest day of Rebekah's life was the day, almost five years ago, when she married Gary.  What an amazing person he is. He has done so much for Rebekah, loved her and cared for her. They were the perfect couple.

My beloved Jake is down to Rebekah. She and Gary adopted a little dog, Lucy, from a local rescue centre. She then found Jake on the centre's website.  Jake was looking for a home. For two months, yes two months, Rebekah sent me text messages, photographs, e-mails and was for ever saying; "Adopt Jake, adopt Jake." She would not listen to me when I said I did  not want a dog.

One Sunday Rebekah came round with more photographs of Jake on her phone.  Maureen gave in and said, "Let's go and see Jake then !"

1st October 2013, Jake moved into his new home and has been at the centre of our family ever since. He is devoted to Maureen and I, am always saying he never leaves my side. When people come to visit our home and see Jake they realise I am speaking literally, he is never more than a few feet away from me. When we go out in the car he comes with us. Our bedroom is his bedroom and, more often than not, our bed is his bed.

Rebekah you gave us Jake and every time I look at him I will think of you.

Rebekah, I have just been round to Matthew's house. Adam was there and wearing the Real Madrid shirt you and Gary gave him for his birthday.  Ollie or his birthday went to McDonald's where he put lots of coins into the Ronald McDonald House collecting box.

Here's your nephew Adam when he came to visit you in Oxford's Churchill Hospital.  Beck let me embarrass you with your picture !

Sorry about that !

Below is your niece Katherine when she came to visit you in hospital.

Rebekah contracted a year ago a chest infection, a form of pneumonia similar to that which eventually took the life of Freddie Mercury,  Medical science has moved on so it was not life threatening and she was treated. She was treated but never effectively cured.  Her kidney function fell significantly and it became clear her transplanted kidney was nearing the end of its life. She was prepared for dialysis. Her treatment was partly in Milton Keynes Hospital and partly at Churchill Hospital in Oxford. Every day for four weeks I would either travel to visit her in hospital or take her to a clinic appointment.

My wife an I put ourselves forward as live donors for Beck. My wife was rejected as her own kidney function was not one hundred percent. I was rejected as my blood sugar levels were supposedly too high. However, one test showed a normal level. I was made to drink half a litre of Lucozade and the sugar levels tested again two hours later.  This time the blood sugar levels were below normal !  I joked with senior doctors saying what a weird body I must have.  It was agreed that if I could maintain levels at normal for three months I could go back into the live donor programme.  I would not donate directly to Rebekah but to a pool where someone would receive my kidney and Rebekah would have a transplant from a different donor. I have told Churchill Hospital I wish to continue and become an altruistic live donor but I suspect they may not actually accept me. I will be pushing myself forward and those who know me will be aware just how much of a pushy person I can be.  Someone once said to me: "You are very good at knocking on doors, if they do not open you just kick them down and walk in anyway !"

Rebekah did not take to the dialysis, she appeared to me to have lost her childhood fight. She had bad days and not so bad days, she did not have good days. A few weeks ago I was telling everyone she was fading away and would probably die in her sleep. But she turned a corner and was starting to get better.  The support she received from both hospital was amazing.

Few people will have the experience of Britain's National Health Service that I have. The system is incredible and the people who work within it are so amazing. Some call them ANGELS, I say they are SAINTS.

I get so angry when I hear people knocking the NHS, when people criticise and politicians use it as a football for their own games. Of course the NHS is under-funded, isn't life under-funded ? You could double, triple quadruple the funding and it would never be enough. But that is not the point. The point is the OVERFLOWING love those who work within the NHS give every minute of every day to those they care for.

When Rebekah died on Friday the consultant in charge of her renal treatment was told. He picked up the phone and called me. What a lovely conversation we had.  That was not an NHS senior doctor doing his job, that was a lovely man making a personal telephone call. That was special.

Also special was the nurse who stayed on duty for two and a half hours to sit with Rebekah while she waited for ambulance transport to take her from Milton Keynes Hospital to the Churchill in Oxford.  I took her some flowers and wrote to the Chief Executive of the hospital praising the care my daughter was receiving. I sent copies to The Secretary of State for Health and our own local MP, Ian Stewart. Ian wrote me a beautiful hand written reply which you can see on the right. I took this to the hospital and gave it to the staff who had cared for my daughter.

Aren't people wonderful ?  I have to keep going back and changing upwards the number of people who have sent me messages.

Rebekah was our Little Miss Sunshine, she was such a large part of my life and my wife's life, we can not imagine life without her.  Even after she left home and was married I would speak to her on the telephone almost every day. She would send me text messages, Dad I am sorry to be a pain but could you do.................

Rebekah had asked us to organise a garden party and BBQ for her, her brothers, their wives and children. We have two hundred pounds of plants outside waiting to be put into the pots and the ground ready for that party. It is hard but the planting is still going to have to happen even though the party will not. Rebekah's
brother, Matthew, is a stock and systems manager at Morrissons Supermarkets. Yesterday he had staff put aside twenty-four miniature sunflower plants for me.  I have them at the front of the house right now in memory of Rebekah, I will be putting them in pots and hanging baskets. A sunflower is now a Little Miss Sunshine flower.

My wife and I have asked Rebekah's brother Peter, who is a lawyer, to legally change our names.  I will be David John Bekah Ashford and she will be Maureen Rebekah Lousise Ashford. Rebekah will never leave us.

I know that Rebekah did not think a lot of my story writing. When I signed up as an Amazon writer, nothing special about that - anyone can do it, I found in my loft the original manuscript of my book THE WILD ADVENTURES OF DI CENTRAL EATING.

I opened the manuscript and there  on the first page were the words REBEKAH THIS STORY IS FOR YOU.  I wrote that story decades ago, it did have a provisional publishing offer but I never got my act together enough for it to happen.

The story is now published on Amazon as an e-book. I actually purchased a copy for myself to give to Rebekah, I don't this she was impressed !

Di Central Eating is not particularly a child's book, it is more an adult's view on a child's life. I have just received my Amazon royalty statement for the last month, it's not easy to understand but I think I have sold a copy of the book to someone in Japan.

It is now twenty-four hours since Rebekah passed away, it was not easy to start writing this page but as I have continued the words have just flowed. Writing all I have has helped me but knowing people will now read it - I am not sure about that.

If I did not write this page in my diary, the hobby I have had for the past fifty years ,could come to an end. THE DIARY OF A SILLY OLD MAN is not currently published beyond my own website but I do include it on the Booksie website and on Blogger.  I will publish it when there are more entries, perhaps in a year's time.

What should I do about THE BRIDGE HOUSE ?  So much of the story planning involves Rebekah.

The cover is Rebekah's !  It is actually a print which my grandmother, Lily, always had on her
wall at home.  When she died in 1984 I asked if I could have it in memory of her. It was then in a very dark frame.  I had it reframed. Behind the picture was the honourable discharge certificate from World War One of her husband who suffered from tuberculosis.  I have no idea of the value of the picture, it could be worthless or it could be priceless. I do not care.  It belonged to Lily's mother-in-law, then to Lily and then to me so I am its fourth generation. Rebekah asked if on my passing she could have it. It is in my will with the proviso that it must never be sold and must always be passed down through the family. What am I going to do now ?

The Bridge House plan ends when Rebekah is born and Lily had her great-granddaughter to love.  Everything in the story plan is working towards that climax.  Right now I am about five thousand words short of completing chapter one.  I had great hopes for this story.  Usually my stories are novelettes but this is going to be a full-length work. It had been my intention to offer it via Amazon as a printed book as well as an e-book.  It may sell a million copies or it could sell nothing, I could make a fortune or I could make nothing !  It could become a TV blockbuster or it could be forgotten. That was not a concern, I was having incredible fun writing the story.

While the story is written round the life of my paternal grandmother Lily Bedson, later Lily Ashford, I have wrapped fact in my author's imagination to tell some fictional tales of the times in which Lily lived. Lily is the taller teenage girl in the picture on the left.

While chapter one is going along well it is too simple.  It takes the reader from A to B in a straight line.  It needs to weave about and have some sub plots operating.  It was my plan to finish the chapter then go back and make a complete rewrite.

One of the fictional characters in the story is Henry, here on the right. I found his image on sale as a photograph in an antiques market while I was on holiday the week before last. The picture is exactly how I was imagining his character in the story so I just had to own the photograph no matter how much the stallholder was asking. When he told me the picture was just one pound I snatched his hand off !

However, with the loss of Rebekah I wondered if I would be able to write the story or not. Could I continue it or would the writing be too painful. Just as writing this diary page was a hard undertaking so would be continuing with The Bridge House.  I asked my wife if I should stop writing, not just The Bridge House but writing all together.  She said I should finish The Bridge House and dedicate it to Rebekah. That is what I am going to do.  It will be an Amazon listed book and e-book by the end of the year.
Rebekah I have absolutely no idea how I am going to be able to live the rest of my life without you occupying the very big part within it you have been for thirty-four years. Writing this diary page has helped me, I hope if anyone reads it they do not think I am being silly even if the diary is from a SILLY OLD MAN.  I will write The Bridge House for you, I promise to make it my best work ever.

Rebekah I loved you so much, I still love you and will love you for ever. You were my Little Miss Sunshine, you were Little Miss Sunshine to us all.  You know how much I love music, I know you had a music DVD you were planning to give me today as a gift. I have not listened to any music at all for two days but have been, just these past moments, to YouTube and found this.

My darling daughter Rebekah I love you so much, you will always be my sunshine.


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