LIFE WITH LUCY

Lucy is a typical, lively 12 year-old girl except that she has muscular dystrophy. This confines her to a wheelchair and it is terminal. This doesn't stop her from living life to the full though as I discovered when I was privileged to spend some time with her recently. Have a listen in -

Lucy: "OK so you're the boss and I'm your fashion designer that's why I have the clipboard".

Me: "Lucy, I've called this meeting so we can discuss what this year's fashions are going to be - any ideas?".

Lucy: "Sure, I thought we'd produce clothes for toddlers".

Me: "Any ideas for colours?"

Lucy: "I thought pink and purple for the girls and blue and purple for the boys".

Me: "Sounds good and.."

Lucy: "Your phone's ringing" (it wasn't).

Me: (pretends to answer phone) "Hello, who is this?"

Lucy: (whispering) "it's your daughter".

Me: "Oh hi ermmm.."

Lucy: "Her name's Gill"

Me: "Hi Gill how's everything? Are you at college?"

Lucy: "She's 8".

Me: "Sorry I mean are you at school?"

Lucy: 'I was joking - she's 18"

Me: "You misheard me Gill, I said 'college' - anyway I'm in the middle of an important meeting with my chief fashion designer. Can I call you back later? OK bye". Sorry about that Lucy now where were we?"

Lucy: 'Your phone's ringing again"

Me: (pretends to answer) "Hello ermmm..."

Lucy: "It's your Grandma"

Me: :Hi Grandma! I wasn't expecting to hear from you again after we cremated you"

Lucy: "She's deaf"

Me: "SO ANYWAY GRANDMA HOW"S DEATH SUITING YOU?"

This continued for about an hour. By the time we went home I was exhausted!

Don't you just love Lucy?

IT'S GOOD TO HAVE FRIENDS

Regular readers will know that I work part-time as a 'befriender' at a children's hospice. One of the joys of doing this is that I never know from one day to the next, who I shall be working with.

On a recent visit I was introduced to a 7 year-old boy who we'll call Ben. It was Ben's brother who was dying. Ben was perfectly fit and healthy but on this occasion, his Mum had been up all night at the hospital with his brother and was now utterly exhausted and sleeping upstairs. Ben needed entertaining for a few hours and I was lucky enough to get the job.

I introduced myself and Ben was having trouble remembering my name so I pointed at the end of his foot ('Toe') then at his knee - Toe - Knee and he laughed at this silly name. We went outside and played football, then a game of hide and seek. We played a board game and I after that I dressed him up in a pirate costume. I played the guitar and he pretended to play one along side me. We made a great duo.

He was getting tired now so we sat on the sofa while I read him a story as he instinctively cuddled up to me. That was when it happened. He looked me straight in the eye and said 'You're my new best friend'. My insides melted.

Later, we played some more. 'Can you remember my name now?' I asked him. 'It doesn't matter any more' he replied, because I'm just going to call you 'Best friend'. Life doesn't get much better than that.

Have a listen to 'Ben' by Michael Jackson.

SURVIVAL AT THE HOSPICE

I spent an amazing day at the children's hospice today and I wanted to share it with you. We had a visit from a guy called 'Brummie' from 'Taste for Adventure'. He is ex-SAS and spent several hours with the children and staff sharing details about survival in the wild.

A dozen or so kids, most in electric wheelchairs were fascinated as Brummie showed us how the most ordinary, everyday objects can be life-savers.

For instance, after a helicopter crash in the jungle, how did a pen and paper help to save lives? The answer is that the group of survivors realised that they were not going to be rescued after some 3 weeks of surviving near the crash site so they sent 4 people off to try to find help. Before they left, they wrote down the names of all the survivors and drew a map of the geographical features which they could see from the crash site, which included a waterfall and two streams which came together to become one. Sadly, the group of 4 fell to their deaths whilst crossing dangerous terrain. However, their bodies were found and the piece of paper made it clear that there were several others lost in the jungle. A local guide recognised where they were from the clumsily drawn map and led rescuers straight to the remaining survivors.

What a story! This guy was absolutely fascinating and had the kids (and staff) held spellbound as he told his tales. We were shown how to build shelters, find food and water and start fires. Having been shown this, staff and children proceeded to build our own shelters and after an outdoor lunch of burgers and hotdogs, they all had a turn at starting fires. We warn kids not to play with matches - quite rightly - but these deserving children had a real thrill out of starting their own fires (under careful supervision).

We were astonished to watch as Brummie rubbed an ordinary household battery against a piece of steel wool and it burst into flames! Apparently, this is one of the commonest causes of household fires when batteries and steel wool come into contact in your garage and then ignite cans of paint. You have been warned!

After saying goodbye to Brummie, we kept the fun going with a range of outdoor activities devised by the Hospice staff. Firstly there was some orienteering to test map-reading skills. Then we had to erect a shelter to keep us safe overnight in the unlikely scenario that a plane crash near the hospice had left us all trapped in the garden. Finally, they were able to test their skills at hunting down a wild animal for food. I was the wild animal and I'm pleased to say that having found me lurking in the undergrowth after a 10-minute search, they decided I wouldn't taste too good!

Fantastic fun for all concerned and many thanks to Brummie - read all about him by clicking the link above.

HELPING AT THE HOSPICE

I have belatedly realised that my training as a teacher of children with special needs leaves me well qualified to work with children who have a limited life expectancy. As a result, I have recently started as a volunteer in a Children's Hospice. I shall do 'befriender' training later this year after which I shall be working with individual children. Until then, I shall be helping in a variety of ways within the hospice. In this way, I shall be able to learn how things operate and get to know the staff. Today I first worked with a small group of teenage children doing some art and craft activity and then after lunch, I spent some time in the Admin office.

The hospice has 10 bedrooms. It mainly takes in children on a respite basis. Children will attend for a few hours or a few days. Families may also wish their child to end their final days there, in a place they know well and are happy in and this is welcomed.

When a child dies there, an event which occurs every two weeks or so, the other children in the hospice know nothing of it. Life goes on as normal and parties or routine activities take place as usual. Ribbons and rainbows are put up in the entrance foyer to alert staff and volunteers to the fact that one of the 'special' bedrooms, which are kept well chilled, is occupied.

The children coming to stay find 'their' room pretty much as they left it. This is because their own special toys and pictures are kept in a box with their name on it and put into the room in readiness for their arrival. They don't know that perhaps fifty other children have used the room since they were last there.

I am mainly doing this because I will thoroughly enjoy it but also because I am well aware that many people can't face the prospect of doing this work but I can. Many of the other hospice volunteers are unable and unwilling to work directly with the children and this is perfectly normal and understood. Because of this, they may work in the kitchen, in the office or in the garden. They may also work far removed from the hospice itself in one of their many charity shops. These are very necessary, for the government only funds about 8 or 9 per cent of the costs involved. The rest is made up from sales and donations. Obviously then, volunteers are vital to the work of the hospice.

If you have any time to spare, perhaps you could consider helping out in whichever way appeals to you at your local facility. You will receive no salary but I assure you that you will feel completely rewarded.