Life continued as the perfect balanced family, then I missed another period. Once again my timing was all wrong. Louis was three, Mark was an out-of-work house-husband and I had gone back to college to study a course in reflexology and holistic medicine. Mark and I hadn’t planned on having more children although deep in my heart I always hoped I would have more – just not at that particular time of my life when I was learning new skills with the intention of getting some part-time work as soon as Louis was old enough to start school to bring in some extra money. Again Mark was not happy (there was a pattern emerging here!) and we decided that after Ruby was born we wouldn’t take any more risks and Mark booked to have a vasectomy.
When I told Hayley we would be having another baby in the house, she was excited but a bit concerned where the new addition would sleep. When I told her, ‘We’re moving to a new house where you can have a bedroom each,’ she was happy enough. ‘I hope it’s a girl so we can play together,’ she said. Sure enough when the scan showed I was having another girl, Hayley was over the moon and planned all the games she would play with her new sister. We decided we would call her Katy. ‘I can call her Kit Kat,’ Hayley said. But Mark hated the name and we reached a stalemate. Hayley and I were convinced we would win Mark around but he refused to budge. Then a couple of weeks before I went into labour we were all watching the TV soap EastEnders when the character Ruby walked onto Albert Square.
‘What about Ruby?’ said Mark. So Ruby it was.
Throughout the pregnancy Hayley loved touching and kissing my swollen tummy and would often sit beside me and sing nursery rhymes into my belly to feel little Ruby moving. Hayley had also started learning to play the violin in school and was convinced that Ruby would like to listen to her practising. Whenever she played Ruby would move inside me, but I think she was just trying to get away from the screeching noise of Hayley’s beginner’s violin scales. Carrying Ruby for nine months was bliss. I knew that it would be the last time I would be pregnant, given our belated family planning scheme, and I wanted to enjoy every last moment from the late-night craving for chocolate Minstrels to the healthy glow of my skin that made my friends and family say, ‘You look well.’ When I was carrying Louis, I ballooned. I was so huge I could hardly walk in the last few weeks and I could just about manage to waddle to the bathroom. But Ruby was a joy, I was much smaller and I hardly felt like I was pregnant.
I felt the healthiest I had been in my life.
On June 2 2005, after an eight-hour labour, Ruby was born and turned out to be the biggest of all our babies weighing 8lb 2oz. She was delivered by the same midwife who had brought Hayley into the world eight years earlier and after all that time she still remembered Hayley’s big blue eyes – once seen never forgotten, I always say. Ruby had dark eyes and a thick layer of hair. Like Louis she was a healthy baby. Immediately our family life changed to accommodate the new addition. We moved into a larger four-bedroom council house across the road from where we lived, Stacey moved out to live with her mother and Hayley and Louis had their own bedrooms. We had been busy decorating our new home and for the first time we had space for a proper nursery. Once again Hayley proved she was would make a great mum, she would sit on the sofa with Ruby on her lap singing nursery rhymes and Kylie songs as she gently rocked her to sleep.
As Louis and Ruby grew up and became more independent, the fights started between Hayley and her brother and sister. When Ruby started to get a mind of her own, she learnt how to annoy her older siblings. It was quite common for Ruby or Louis to come crying to me because Hayley had hurt them. As her younger brother and sister started to tower over her, Hayley learnt that the only way she could hurt them was to pinch their cheeks. She couldn’t lash out and punch or kick like they could because she would just fall over and end up hurting herself, so the cheek-pinch became her effective method of fighting back. When fights erupted, quite often out of nothing more than Ruby’s refusal to let Hayley be the boss or Louis not allowing one of his sisters to play on his Xbox games console, I would stand back and let them get on with it, knowing it would eventually end in tears. Even now there are some nights when Ruby will creep into my bedroom while Hayley and Louis are asleep, and start to cry. ‘I’ve been nasty to Hayley, what if something bad happens to her.’ It’s a terrible thing for a six-year-old to carry that weight of responsibility. ‘That’s why you should always be nice to one another,’ I tell her and the message sinks in for a day of so. The next morning Ruby apologises to Hayley and gives her a big hug and everything is fine, until the next time ...
As parents Mark and I have had to maintain the balance to share our time and affection between the children. Both Ruby and Louis know that Hayley’s progeria makes her different from them and they seem to accept it. I have been known to buy Hayley extra little presents when she has to have difficult treatment and they understand that this comes from her own moneybox which is topped up from her publicity fees, and although young they seem to understand this. For me the hardest part is saying no to Hayley when she wants to go shopping for new clothes or gadgets. In my heart I want to give her everything she asks for because I know that I will not have the chance when she is older. But sometimes I have to say no as there’s a fine line between being a special child and a spoilt brat.
Hayley and Ruby would often sit together and watch Disney DVDs, they loved the sugar candy pinkness and happy-ever-after of classics like Beauty and the Beast and Cinderella. I don’t know whether this gave Hayley any ideas, but one day she turned to Mark and I as we were cuddling on the sofa in one of our rarer loving moments , and said, ‘If two people love each other, they should get married.’ Mark and I were slightly shocked. The idea of marriage had never been a priority to us. Sure when I was a kid, like Hayley, I had dreamed of a fairytale wedding with a big church and a crowd of hundreds watching me walk down the aisle to the Wedding March. But the older I got I realised that fairytales are just that and our priority as parents was to take care of our children and find a cure for Hayley’s condition. A wedding seemed like an unnecessary expense. But Hayley had planted the seed of the idea. In her mind she wanted her ‘big day’ and the only way she was likely to do that was through Mark and me.
The more I thought about it, marriage seemed to make sense. Hayley and Louis were both at an age where having parents with different surnames, although not uncommon, needed some explanation. Louis and Hayley were often puzzled when their teachers gave them letters addressed to ‘Mrs Button’. So Mark and I set a date and a place – July 29 2006 at Hastings Register Office – and I started arranging our big day with Hayley as my assistant wedding planner. Hayley had it all mapped out in her head. She and Ruby would be bridesmaids and they would be wearing pink, of course. There would be a pink cravat for Daddy, his best man and Louis, the pageboy.
The wedding itself was going to have to be a low-key affair, we didn’t have thousands of pounds to waste on a lavish party. I didn’t even have a spare couple of hundred pounds to buy a wedding dress. Fortunately a local wedding dress shop heard about the plans and offered to donate Hayley a bridesmaid’s dress for her big day. They also allowed me to buy my dress and Ruby’s at cost price. So, before ‘austerity weddings’ became fashionable, Mark and I had our own budget-busting ceremony for just 25 close family and friends. I chose a two-piece skirt and bustière top in ivory silk made in Paris. Hayley got her wishes – a beautiful cerise pink chiffon dress, which matched the pink crystals on my dress but it had to be altered several times before it fitted her tiny frame. On the morning of the wedding Hayley took charge helping her brother and sister into their outfits. Louis was our page boy and wore a suit with a pink cravat to match his Daddy’s and little Ruby wore a baby pink dress. After the ceremony Hayley paraded around wearing my veil saying, ‘Look at me, Mum. I’m the bride.’ It broke my heart to see her and think she would never grow up to have a wedding of her own.
After the ceremony my mum took the kids and my brother and sister for a post-wedding lu
nch at a local pub while a limo arrived to drive Mark and I to our honeymoon destination – a rave festival. We headed to Warwickshire to spend our first night as husband and wife at the Global Gathering festival, doing what we loved most – dancing with a group of 10 cousins and friends. Most couples go for a slow smooch first dance, but ours was a full-on, glowsticks-in-the-air rave that lasted until dawn with 45,000 other people. Not the typical wedding, some might say, but ours wasn’t a typical romance.
Chapter 17
Hayley
Sibling Rivalry
I WAS NOT PLEASED when my brother Louis was born. I had to share my bedroom with him and he would wake me up in the middle of the night crying. When my sister Ruby was born I was happy. I wanted a sister to play with and I knew when she was old enough we could share our dolls and clothes. When I was little I had loads of Bratz dolls and I would let Ruby play with them and I would do her make-up. Now I am too old to play with Bratz and Ruby doesn’t let me do her make-up any more. I asked her why but she just says she doesn’t want to. I think I may have done it wrong once, but I don’t really know.
Me and Ruby have a weird relationship. Sometimes we hate each other and other times we are best friends. It depends what mood Ruby is in. If she’s in a bad mood we hate each other. We argue a lot. But at the end of an argument Ruby says, ‘Are we still best friends, Hayley?’ I say, ‘Yes we’re still best friends, Ruby,’ until the next time when we argue again. When my best friend Erin comes round to hang out with me, Ruby decides she wants me to do her make-up and I say no, go away because I am busy. Recently Ruby has started saying, ‘You don’t love me Hayley,’ when I tell her to go away. I say, ‘Don’t use that excuse.’ But I still feel bad when she comes into my room crying and hugs me. I think she might get jealous of my friends.
Sometimes Ruby can be really annoying. Like once we were out in the garden playing with our tea set and I went to pour some juice in Ruby’s cup but she wanted to pour the juice. I told her to say please. She didn’t say please so I wouldn’t let her have the juice. She ran in the house to tell Mum. That was really annoying. I hate snitches and I hate it when Ruby is a snitch. Sometimes I wish Mum would have another baby sister but one that would let me put make-up on her and won’t snitch. Louis annoys me when he won’t let me watch my programmes on TV or he won’t let me play on his Xbox.
I feel like Ruby and Louis’ big sister even though Louis is taller than me and Ruby is almost as tall as me. I ask them about their day at school and help them out with their homework. When I am watching TV in my room Ruby usually comes in and asks if I will help her. Sometimes I do, but it depends what mood I’m in and what I’m watching on TV. When I say no she always cries.
At night before we go to sleep me and Louis talk about random stuff. I tell him when I have aches in my body and he says, ‘I’m really glad I don’t have progeria.’ Other times Louis worries that he is the smallest in his class. I told him, ‘Don’t worry, Louis, I am the littlest in the whole school, just deal with it.’ Louis has a girlfriend now and it’s really sweet. When I ask him about his girlfriend he goes all shy. I don’t have a boyfriend, I’m not interested in boys they smell and they are annoying and they expect you to do the washing up. Louis is a typical boy, he just sits around watching TV. Daddy is not annoying and he smells nice but he doesn’t do the washing up. Mum says I have a boyfriend called Harry, but he is not my boyfriend. He’s just a friend. He is eleven years old and lives in Yorkshire with his mum Sharron. He has progeria as well but his is a different sort of progeria. He ages five times faster. I met Harry when Mum took me to London on the TV programme This Morning and he was really nice and funny. We talk on Facebook all the time. Mum says he is a ‘real gentleman’.
I think Ruby sometimes get jealous of me. One day when someone was filming me for TV, she wanted to get in front of the camera and the people with the camera asked her to play in the other room. She said, ‘Why do they always want to film Hayley and not me?’ Mum told her it’s because I have progeria. If Ruby gets jealous, she goes off to play with her friends and forgets about it.
I can understand why she feels that way, if it was reversed I would be asking exactly the same thing and be acting the same. Louis doesn’t act like Ruby, but he doesn’t like getting his picture taken so every time the cameras come he hides in his room and plays on his Xbox.
Sometimes I feel jealous of Ruby. I’m not sure why. She has really nice clothes and I used to be able to steal them from her wardrobe. But now she is getting taller than me. Every day she says, ‘Hayley let’s see how tall we are?’ She makes a really big deal that she’s taller than me. So I usually stand on my tiptoes, when we measure so I look taller. I don’t feel jealous of Ruby and Louis’ health. If I didn’t have progeria, I would not get to do cool stuff and meet really cool people.
Chapter 18
Kerry
The Second Worst Day of my Life
HAYLEY’S CLOSEST FRIEND – THE one who understood her the most was Maddie. Maddie was three years older than Hayley but they had so much in common apart as well as their progeria. We first met Maddie and her family at one of the early Progeria Reunions in America and when we both returned to our homes in the UK, we stayed in touch and met up often so the girls could have sleepovers.
They would play together for hours, painting one another’s finger nails and putting make-up on each other’s faces.
One Sunday afternoon after Maddie had returned home from one of their sleepovers I had a frantic phone call telling me Maddie had been rushed to hospital. I arrived at the emergency unit to be told the news. Maddie had suffered a massive heart attack and had passed away. She was just eleven years old.
My heart was in pieces for Maddie’s mum. There were no words I could say that would change anything. I tried to put myself in her place and imagined how I would be feeling. It was too horrible to think about. And worst of all I had to go home and break the news to Hayley. How could I tell her that her best friend, the one person in the world she was closest to and had most in common with, was no longer with us? When I had left our house earlier that afternoon Hayley had no idea Maddie had been taken ill.
As I turned the key in the front door lock, I could feel my heart throbbing in my mouth. I took a deep breath, trying to compose myself for the task ahead, and walked into the living room where Hayley was watching her favourite cartoon Spongebob Squarepants. Fighting back the tears, I switched off the TV and sat down beside Hayley and that’s when the floodgates opened.
‘What’s the matter, Mummy?’ Hayley asked as she climbed onto my lap. Sensing that something bad had happened she started to rub my cheek, just like she had done the day five years ago when the doctor delivered the news about her progeria.
‘Mummy has been with Maddie because she wasn’t feeling very well,’ I said, choking back the tears.
‘We had to get an ambulance for her. Mummy went over to hospital with her. But she was too tired and she went to sleep and she’s gone to Heaven.’
I didn’t need to say any more. Hearing the word Heaven, Hayley burst into uncontrollable sobs. I wrapped my arms around her, drawing her tight to my chest. ‘It hurts in my tummy, Mummy. My heart really hurts,’ she cried.
Apart from the day when we had confirmation of Hayley’s progeria, Maddie’s death was the second most upsetting time for our family. As the parent of a progeria child death is something that is always in the back of your mind. When we looked back over the old photographs taken at the Progeria Reunions Mark and I would add up the number of children no longer with us and count our blessings that we still had Hayley. But Maddie’s passing was more devastating because the girls had been so close and spent so much time together.
The hardest decision was whether we should let Hayley go to the funeral. She was only eight and while we wanted to do what was best for her, we didn’t want her to start worrying about death. But Hayley wanted to go. Not knowing how to deal with such a delicate issue, we deferred to Hayley’s
care worker Jane, who suggested it would be therapeutic for Hayley to attend.
‘Can I wear my purple dress? Because pink and purple were Maddie’s favourite colours.’ Hayley asked.
Hayley sat down at her computer and wrote a letter to her friend that she wanted to read to her at the funeral. On the day of the funeral Hayley coped better than we had expected. She stood up in front of a crowded church, where everyone wore pink and purple in honour of Maddie. When she read her letter to Maddie there wasn’t a dry eye in the church. In the cemetery Mark and I stood beside the open grave holding Hayley’s hand, she bent down and placed a card and her favourite photograph of the two of them on top of the coffin, as it was lowered into the ground.
In the weeks that followed Maddie’s funeral Hayley would regularly talk about Maddie. She said she had seen her in her dreams. We would sit down together and draw her pictures and write letters. For a while she had an obsession about visiting Maddie’s grave. I would take her to the grave yard and she would lay letters and little bracelets beside the headstone which was shaped like Piglet from the Winnie the Pooh books. She bought a wind chime to hang in the tree beside Maddie’s grave and placed a tiny grey fairy on top of the ground above the grave to watch over her friend. Other days she would ask if she could visit Maddie’s house and sit in her bedroom taking presents and pictures to place on her bed and cards to stick on the wall. Her letters to Maddie usually had a picture of Piglet on top.
Old Before My Time Page 9