They talked about the difference between burial and cremation. Nanna explained that when you were cremated you were burnt.
‘When I die I would like to be buried with Mummy and Daddy,’ Hayley said. To her it seemed like no big deal, but Mum had to turn her head to hide her tears. To think that she could be in a grave before her Nanna was too difficult to contemplate.
Chapter 11
Hayley
The Greatest Pops in the World
MY POPS IS THE nicest granddad in the whole world. He lets me ride in his van and my Nanna is the best cook in the world.
When I was little I used to be really close to my Nanna and Pops. I would say to Mummy, ‘Can I sleep at Nanna and Pops’ house tonight?’ If it was a Friday she would say yes.
I had my own room at their house. It was all pink, but I never slept there. I would say, ‘Can I sleep with you Nanna?’ and she would always let me get in bed between her and Pops. I used to sleep in between them in their bed, I was never afraid they would roll over and squash me in the night.
At night Pops used to read me a story called Chicken Licken before I went to sleep. I liked Chicken Licken, because that’s Mum and Dad’s nickname for me – Chicken. They said when I was a baby I looked like a plucked chicken because my legs were so skinny. In the story of Chicken Licken, he says the ‘sky is falling’. When Pops read that bit to me he would say it in a funny voice and made me laugh. I liked it so much I made him read it again. Sometimes he would read it five times before I fell asleep. I knew the story of Chicken Licken wasn’t true because I knew the sky couldn’t fall in. The sky is where heaven is. I knew this because Nanna took me to a grave yard with a church and showed me where people are buried. It was the place where people go when they die but I thought it was called a gravy yard like the gravy you have on dinner. I was quite little when we went to the grave yard and I remember saying that when people are in their graves they don’t do a single thing except sleep. I thought they couldn’t have dinner, breakfast or lunch. They were fast asleep because they were dead. Nanna told me that when people die they go in a grave, and then they go to heaven. When I die I am going to go in a grave with Mum and Dad. Nanna said she is going with Pops.
I liked going to Nanna and Pops’ house because they live near a park and Pops took me on the swings and watched me on the slide to make sure I didn’t fall. On the way to the park we would stop at the farm shop and buy sweets. At Christmas time we went shopping and Nanna bought me stuff. One time she bought me a pink dress. It was gorgeous. I looked like a real princess but Nanna said it was too big. I said I would grow into it because I hoped that one day I would lose my progeria and grow.
I always used to get sad when I knew Mum was coming to pick me up from Nanna and Pops’ house and take me home. I would cry, ‘Please can I stay here, Nanna?’ I never wanted to go home because I loved being with Nanna and Pops. They never shouted at each other like Mum and Dad. I felt scared when Mum and Dad were shouting, even though it wasn’t at me I thought I had done something wrong. Nanna would tell me to count the sleeps and when I get to five it will be time to go back to their house.
When I got older I stopped going to Nanna and Pops’ house every weekend. When I asked my mum why, she said it was because it wasn’t fair on my cousins. I have five other cousins, plus Ruby and Louis and Nanna doesn’t have enough beds for us all to stay. I was sad, but I know that even if I don’t sleep over there all the time, they are still special to me.
I remember once when I was at the Pride of Britain Awards in London and someone famous, I think it was Prince Charles, said to me, ‘Who is your favourite person?’ I said, ‘Pops,’ and Prince Charles laughed. When I told Pops he said that was a lovely thing to say. But I was only saying the truth.
Chapter 12
Kerry
Hospices are for Living, not Dying
THE DEMELZA JAMES HOUSE in Kent was our local hospice for sick and terminally ill children. When Hayley was still at primary school her palliative nurse Jane, who was based at the centre, suggested we might like to visit with Hayley. I had heard of Demelza James House because it had a charity shop in a nearby town.
‘Jane has suggested we could take Hayley to Demelza House,’ I said to Mark one afternoon. I thought it would be a nice thing to do as a family, but I wasn’t prepared for Mark’s reaction. ‘Hospices are places where you go to die. I’m not ready for it. Hayley isn’t ready for it,’ Mark snapped.
‘But I thought it would be a lovely retreat that we could visit as a family. It’s a chance to get away from it all and relax. They have a Jacuzzi room, which will be good for Hayley’s arthritis. There’s a soft play area where she can run about without any worry that she’ll fall and hurt herself and they have nurses and carers who watch the children and give parents a break. It’s a really special place.’
I had underestimated the message I was giving out. I thought Mark would be as excited as I was for us and Hayley, but he was totally against it.
‘You can go if you want, but don’t expect me to come.’
That was his final answer. But I wasn’t prepared to give in so easily. The atmosphere in the house was tense for a couple of days as I went ahead and planned our first visit to Demelza House. As far as I was concerned the hospice was as much about living as dying. It was somewhere we could go as a family and spend some quality time together, so I booked a family room for the weekend for me, Mark, Hayley and Louis, who was less than a year old at the time.
Explaining our weekend away to Hayley was going to need a delicate and tactful approach, so as usual in those circumstances, I passed the buck to Jane. I wasn’t ready for her to know the true reason for hospices, so she told her that we would be going to a place where children go when they are not well and poorly. She also prepared Hayley for the fact that there might be some children there in wheelchairs and children who could not talk. This didn’t seem to bother her and she was equally as excited about our mini holiday.
As the date of our first visit approached, Mark could see I wasn’t going to back down and reluctantly came round to the idea. On the hour-long journey to Sittingbourne it felt like we were going on holidays. We had packed a suitcase with our pyjamas and swimming costumes and played I-Spy in the car on the way there. Driving up to the hospice was like entering an upmarket country house hotel. A long drive through six acres of Kent countryside brought us to a beautiful red-roofed old brick oast house.
Jane was there to greet us and showed us to our suite of rooms. It was like something from a film set. There was a big double bedroom for Mark and me, a cot for Louis and a single room for Hayley, a fully equipped kitchen where we could cook our own meals and a sitting room with a flat-screen TV. She introduced Hayley to one of the care workers who took her to the play room. Hayley was more than happy to go off and play with her ‘new friend’ and while she was occupied Mark and I were given a guided tour of the facilities.
‘It’s very luxurious,’ I said to Jane as she showed us into the Jacuzzi room, which would not have been out of place in a five-star hotel.
‘Yes, but most parents tell us the real luxury is having a night of undisturbed sleep,’ Jane replied.
When we got to the soft play room, we saw Hayley climbing up a flight of giant red foam steps while her carer stood by. She saw us and waved, not the slightest bit bothered that we were not staying with her. In the music therapy room another of the carers was playing the piano while a severely handicapped young boy in a wheelchair was using his limited movement in his right hand to bang a drum loudly.
‘That’s Jamie, he has cerebral palsy. He looks forward to coming here once a month to see his friends,’ Jane explained.
When he saw the other families, Mark’s worst fears were dispelled. It wasn’t a hospital full of dying children, it was a play centre full of children who still loved life and everything it had to offer. Meeting other children made us realise how lucky we were to have Hayley in her relatively ‘normal’ condition
. Some children had leukaemia and only a few months to live, others who suffered from the terminal muscle-wasting disease muscular dystrophy were being pushed around in wheelchairs by their carers. These families were in a far worse situation than us and talking to other parents gave us strength. The one thing all these children had was life and hope. Yes it was noisy, but the rooms were filled with the sounds of fun. Mark later confessed that he had been pleasantly surprised. He said, ‘Everyone was having such a good time, laughing and playing, I forgot where we were.’
However my parents were not so easy to convince. One afternoon after our first trip to Demelza House I had taken Hayley on a day trip to Leeds Castle with Nanna and Pops. Hayley loved feeding the swans on the castle moat. This particular afternoon, Pops had taken Hayley down to the water’s edge with their bag of stale crusts, while Mum and I sat on a bench and watched them. Demelza House was the ‘elephant in the room’ and I tried to think of ways to bring it up without spoiling the afternoon for everyone.
‘It’s not how you imagine a hospice to be,’ I said testing the water.
Silence.
When I first told her of my plans to visit the hospice, like Mark, she had been totally against the idea. So I tried again.
‘Hayley loved it there. She said she liked the Jacuzzi best of all. But she can’t say Jacuzzi so she calls it a kajuzzi.
‘I don’t think it’s necessary to go there,’ Mum retaliated. ‘If I want to spend time with Hayley, Pops and I can bring her here for the afternoon; we can have her to sleep over at our house. We don’t need to go there.’
Then her words stopped as she choked back her tears and looked across the lawn to Hayley who was holding her Pops’ hand and looking up at him with such love as if he was the most important person in her world.
‘We will go if that’s what Hayley wants, but we will not go voluntarily,’ were Mum’s final words.
Subject closed.
The rest of the afternoon passed with no bad feeling. Our words were over but I couldn’t help feeling the hospice issue was driving a wedge between our family. We took Hayley around the castle and showed her paintings of princesses from years gone by. Pops lifted Hayley up to stand in one of the old stone windows to look out over the grounds and challenged her to imagine what life would be like if she lived in a castle.
‘If this was my castle, I would wait for a prince to come along and marry me,’ she said.
‘What will you wear on your wedding day?’ Nanna asked.
‘I will have a big pink dress and a tiara. Every single thing will be pink and I will be called Princess Hayley.’
Later that evening while Mum and I were cooking supper, Hayley came into the kitchen and asked ‘Did you know we went to Demelza House, Nanna?’
‘Yes, a little bird told me,’ said Nanna, scooping Hayley up in her arms and sitting her down next to the draining board so she could watch us as we carried on making chips for supper.
‘The kajuzzi was really warm and nice. Next time we go you and Pops can come too. You can wear your bathers in the kajuzzi like me.’
The subject was back up for discussion. After supper when Pops had taken Hayley to bed and Mum and I were alone washing dishes, I explained how relaxing it had been.
‘When you walk through the doors you don’t think of death. The atmosphere is lovely. It feels like you’re really having a break.
‘The only time I got upset was when they offered to take us to see the cold room. It’s a refrigerated room with a bed where they can go to die, but that’s in a separate wing to the rest of the rooms and you don’t need to go there. I wasn’t ready to see it. If you choose for your child to die there, that’s the place where you go. But I’m not going to let her die there.’
‘Let’s not go into that this minute,’ said Mum, turning her head away from me to hide her tears. She made it clear that she would not go and I didn’t force the subject. Mark and I continued to visit at regular intervals. Sometimes I would take Hayley on my own, other times we would go as a family. During this time I was studying holistic therapy at college and the weekends at Demelza House gave me time to study in peace and quiet while Hayley played with her new friends. True to her word, my mum never joined us but it was never an issue any more.
Chapter 13
Hayley
Hospices are not Like Hospitals
ONE DAY MUM TOLD me we were going away to a place called Demelza House for a holiday. I like holidays. When we go to the progeria reunions it’s like a holiday because we get to stay in a hotel with a swimming pool and we can play in the pool all day if we want.
My friend Jane said Demelza House was a place where children go when they are poorly. She said it was like a hospital, but a lot more fun.
‘You will see people who are handicapped and make a lot of noise,’ she said. I thought I had seen handicapped children before. When we went to the Progeria Reunions there was a boy in a wheelchair, who couldn’t run around like me and my other friends.
When Jane said it was like a hospital, I wasn’t sure that I wanted to go. It didn’t sound like much fun. I like going to see Dr Whincup at hospital, but the rest of the time hospitals are just a bunch of needles and tests and I don’t like them very much. I know I have to do it because of my progeria but I wish I didn’t.
‘Will it be like the reunions?’ I asked.
‘A little bit, but we are not going on a plane, we’ll be going in our car,’ Mum said. ‘They have a big play room where you can run around, and a Jacuzzi.’
‘What’s a kajuzzi?’ I said.
‘You know. The warm pools with bubbles. You’ve been in one when you go to hydrotherapy,’ Mum said.
‘I like kajuzzis,’ I said. I never knew what a hospice was but it sounded more fun than a hospital.
The first time we went was really fun. There was a big soft room and arts and crafts room. I liked the soft play room. I could jump around lots more without hurting myself. I liked painting and colouring too, but I wasn’t very good at it.
There were a few other children at the hospice. At the beginning I wasn’t used to seeing children in wheelchairs. Some of the children in wheelchairs were shouting and making loud noises and I was frightened. I thought, why are they shouting? but Jane told me they had learning disabilities and couldn’t help it. As I got older I understood they had learning disabilities and felt really glad that I wasn’t in a wheelchair.
Chapter 14
Kerry
Hayley Okines, Friend of the Stars
IN MANY WAYS HAYLEY is just like many other girls of her age – she loves playing with make-up and dancing around her bedroom to her favourite pop song of the moment. But unlike other teenage girls Hayley’s progeria has paved the way for her to meet many of the stars she has plastered over her bedroom wall.
Her life in the media spotlight had brought many extraordinary twists to our lives. I remember having one of the first of many ‘pinch-me, I’m dreaming’ moments when we discovered Hayley had been nominated for an award at the Woman’s Own Children of Courage Awards in 2002. The awards were being held at Westminster Abbey in London on Wednesday, December 11. HRH Prince Charles would be presenting 10 children with medals for their bravery. Hayley was being honoured for her outstanding courage having been nominated by readers of Woman’s Own magazine, who had followed her life through magazine features.
I dressed Hayley in her best lilac satin dress, with matching purple ankle socks, pale lilac cardigan and black shoes. In her own words she looked ‘gorgeous’. Before the awards the families of all the children were taken to meet the Prime Minister Tony Blair at 10 Downing Street.
Hayley struck up a friendship with the Prime Minister’s son Leo, who was only two, but already the same size as Hayley. They spent the entire time sitting together on a window sill singing nursery rhymes, oblivious to the excitement that was going on around them.
On the coach from Downing Street to Westminster Abbey, the children and their parents wer
e given a reminder of what to expect. ‘There will be lots of celebrities there, so get your autograph books ready,’ the host said over the coach speaker system. ‘And when you meet Prince Charles remember to say please and thank you. But don’t ask him for his autograph because he doesn’t give autographs,’ he warned
Walking into the Abbey, we felt like royalty. We couldn’t believe our eyes. Everywhere we looked there was someone we recognised from TV. Burly EastEnders actor Ross Kemp swept Hayley off her feet and gave her a bear hug, pop star Billie Piper gave her a kiss and veteran comedian Sir Norman Wisdom tickled her bald head. When actress Suranne Jones laid eyes on Hayley’s cheery face, she was so overcome with emotion she started to cry. As we sat through the ceremony we heard many poignant and emotional stories of brave and unselfish children. One sixteen-year-old boy was picking up an award for his younger brother who had been killed by a falling tree while pushing him to safety. There was a twelve-year-old girl who had saved a drowning toddler, an eleven-year-old girl who saved her sister’s life when she was impaled on a metal spike and a seven-year-old girl who had been born with hydrocephalus and spina bifida and had undergone eight major operations At five, Hayley was the youngest of the children and also the smallest, so she seemed to get more than her fair share of attention.
When the time came to hand out the awards Prince Charles knelt down to hang the red-ribboned medal around Hayley’s neck. And at that point she broke the cardinal rule and asked, ‘Can I have your autograph, please?’ Her cheeky smile won over the royal guest who replied, ‘Only if I can have yours.’ Hayley scribbled her name on a piece of paper and gave it to the future king of England and he returned the favour. Hayley’s audacity earned her a spot on the national News at Ten that night.
After the awards we made friends with some of the celebrities who volunteered to help us to raise money for Hayley’s Progeria Fund. When he was appearing in theatre in neighbouring Brighton, Ross Kemp volunteered to come down to Bexhill to launch a balloon race to raise funds for Hayley’s fund. As a winner of an award Hayley was also invited back to subsequent awards ceremonies where she got to meet even more stars. On one occasion she met Kimberley and Nicola from the band Girls Aloud, who invited her backstage at one of their concerts. When she got to the concert, a woman with a broad Geordie accent said to Hayley, ‘Haven’t I seen you on TV?’ We turned around and it was Cheryl Cole. I was gobsmacked to think that a star as big as Cheryl had recognised her.
Old Before My Time Page 7
