SWEET CHARITY….

Yesterday afternoon something very special happened at Stafford Leisure Centre. 
Following on from an earlier blog SISTERS ARE DOING IT FOR THEMSELVES the time had finally arrived for the sponsored swim in aid of the NEWLIFE FOUNDATION to take place.  All the planning and organising that my Daughter Emma had been doing over the past few weeks were finally going to be put to the test. 

As some of you may know already, Emma & Ben had applied to Newlife for a special bed for Jess as a normal bed is just not suitable for her needs.  These beds cost between £4,000 - £5,000 and are specially made to suit the child.  The sponsored swim was going to go ahead even if the application was turned down as Newlife do such a lot of good work for disabled children and their families, not only in supplying vital equipment but with other things too.  I am pleased to say that their application was approved though and the bed has been ordered but it was important to the family that something could be given back.

Emma had been busy.  She wanted the event to obviously raise as much money as possible for Newlife but also for it to be fun for the children taking part.  The house became a hive of activity, in between her role as a Waterbabies swimming teacher lists were being drawn up, telephone calls made and e-mails sent.  A Just Giving Page had been created and Natalie was already being sponsored before the event.  Emma also created a Team page so that individual children taking part could be added to that if they wanted to.

Once the pool had been booked then it was time to invite other children to take part.  Children in Natalie’s class were obviously going to be asked, they knew Natalie and of course they knew Jess as she is with Emma when picking Natalie up from school.  Emma also acts as a volunteer helper for the school one morning a week during a swimming class and so the class that she helped to teach in swimming were also next on the list.  The school were very helpful and were behind the project 100% and suggested that Emma go into the classes and briefly explain to the children what the sponsored swim entailed and why it was being done.   

The initial response was very good and so the next thing on the agenda was sorting out sponsorship forms and also to make contact with the children’s parents to explain more fully what the event entailed and how they could create a page for their child on the Just Giving Team Page if they wanted to collect sponsorship money that way.  I should mention that there were children of various ages and abilities taking part which was important to Emma.  She arranged that the pool be divided up in such a way that those that were able to swim lengths could do so but also there was a section for the width swimmers too.

Emma felt it important that each child received something on the day to show that they had taken part.  She got busy on the computer and soon had created certificates for each child which would be handed out on the day with the total number of lengths/widths they had swam.  She also bought medals (the sort that you can get for childrens parties etc) to accompany the certificate.

The most important thing to be sorted out was to make sure that there were going to be enough lifeguards etc., for the number of children going.  The leisure centre were making sure that there were enough lifeguards around the pool side but Emma was also assisted by friends from Waterbabies who are obviously qualified lifesavers who volunteered to be in the water just incase any child did get into difficulty.  Parents were also allowed in with their children if they were needed.   People had volunteered to help out at the poolside taking down the number of lengths/widths swam by each child.

It was agreed that a raffle be held in the foyer and a cake sale would also be a good idea.  Emma set about asking for raffle prizes and was soon being given items for both children and adults.  Nanny Joan and Ben’s Cousin Catherine volunteered to make cakes.  Newlife were also going to provide some raffle prizes plus banners and balloons. Everything was looking good.
Saturday morning I woke up feeling very excited but also quite nervous.  Sponsor money had been coming in over the past few weeks and already over £500 had been raised on the Just Giving Page, but I really wanted the event itself to be a success.  Not for the money,  although that was obviously the reason for doing it, but I wanted everything to go well and for people to enjoy it. 

I wanted this for Emma.  The past few months have taken it’s toll on the family.  The stress surrounding the need for this bed and the constant battle with the Council over it had taken it’s toll on Emma’s health at times.  Planning this event had given her something positive to focus upon and of course the application being approved by Newlife was the icing on the cake.  

We arrived with other family members at the leisure centre about half an hour before the event was due to take place.  We set up the raffle and cake stall.  Balloons were blown up and the banners erected. A representative from Newlife also came along which was nice as both her and her boyfriend had given up their Saturday afternoon to show their support.  Some people started to arrive, then more.  People were buying slices of cake and raffle tickets.  Helpers were in place and the children were in the water. I think there were around 34 in total which was an amazing turnout.  I did have a quick look in the pool (in between selling raffle tickets) and it bought a tear to my eye.  The pool was full of children swimming but most of all they were having fun. It was a great atmosphere.  

Emma had pulled it off – the event was a complete success and I was one proud Mother and Grandmother (Natalie swam 19 lengths) The final total has yet to be counted as there is still money to come in, but we estimate that at least £1,500 has been raised.

Natalie and her friends did amazing.  The distances swam by these children had me hanging my head in shame.  The important thing though was not how far was swam or how much was raised but how lovely to see all these children taking part in a charity event and how much they were enjoying themselves.

THE  AMAZING TEAM (Natalie is front row 3rd from left with the big grin)

I never dreamt that one day my family would have the need to call upon the assistance of charities.  If I am honest I have never really considered how important charities can be.  I have always thought (wrongly) that because we have paid in (via our taxes) then if essential equipment was needed it would be provided by the Council/ Health Service.   Government Legislation and cutbacks have soon proved me wrong on that point.  As I have commented before on other posts, if you are unfortunate enough to have a child with a disability or are a disabled adult then you have to be prepared to fight for everything and to rely on the goodwill of others far too often.

I would like to thank everyone who helped make the event such a success, either by donating or providing raffle prizes etc.  But most of all I would like to thank THE CHILDREN without their enthusiasm none of this would have happened.  The parents of these children have a lot to be proud of.

Jess holding onto her balloon

Emma explaining to some of the team members how much they have helped the charity this afternoon and children like Jess

Whilst on the subject of charities, as you know we belong to a support group SWAN UK.  SWAN have got through to the finals of the National Lottery Award so could I ask one favour of you please, it will not cost you a penny.  Please click on the link below and vote for SWAN the £2,000 cash prize if we won would help to keep us going and would mean so much to the families of those with no diagnosis like Jess.  Share and ask your friends to vote.  Thank you.

If you have already voted then a big THANK YOU.

CLICK LINK HERE AND REGISTER YOUR VOTE

YOU

You have learnt to cope with everything life throws at you

The smile on your face often hides the pain that you feel inside

You have become an expert at hiding your feelings

Sometimes the mask slips and raw emotions threaten to bubble to the surface

You fight it, make a joke

The smile returns

It’s the little things that make you happy now

Seeing a hand reaching for a toy

The little things can also make you feel sad

Watching a child run to it’s Mother

You are good at splitting yourself into many parts

There may be others around you who also need your time and love

You give it without question

Later in the darkness of the night you feel guilty for not having time enough

You are not alone, there are other people who do what you do

Like you belong to some exclusive club but don’t know all the members

You sometimes want to leave this club

Cancelling your membership is not an option

You may work and if you do your colleagues never get to hear your worries

They remain private, you think they would not understand

You no longer have an active social life,

You tell yourself you prefer it that way

You do not allow yourself to look too far into the future

It can be too painful

Just one day at a time is often sufficient

You sometimes want to scream at the world

There are days when you wonder why

But you get over it

You have no time for self pity

 

You ARE strong

You take caring to a new level

Your love has no boundaries

It is unconditional

You see hope when others see tragedy

You see beauty when others turn away

The world is a better place for people like you around

You are the parent of a special needs child

By Anne Hawkes

 

REASONS TO BE CHEERFUL -----PART 2

It has been a stressful time for the family over the past few months, but one person has remained cheerful throughout, oblivious to the battles that are being fought on her behalf to get equipment she needs and long term support. 

As you know I keep a video diary whenever possible so that we can look back and see the progress that Jess is making.  I thought I would share a couple of these with you so that you can see for yourself my reasons to be cheerful.   To the person who does not know Jess and the prognosis that was given in the early years these things might not seem that remarkable, but to us they are milestones.

DON’T TELL MY SISTER I’M IN HERE

RECOGNISING OBJECTS USING FLASH CARDS & TOYS

The best I have saved till last, it is longer than the others but I hope you stay with it.  This was taken a couple of days ago and until then Jess had only shown an interest in this simple shape toy by using it to chew on.  I am so glad that I decided to give it another go and was filming at the time.  She clearly understands what I am asking her to do (apologies for my excessive use of the phrase ‘where’s the circle’!)

PROCESSING INSTRUCTIONS

Thank you for watching. 

And finally…………….

Please vote for our support group SWAN UK in the National Lottery Awards

Click here to place your vote - thank you

It is not how much we have, but how much we enjoy, that makes happiness.
Charles Spurgeon      Read more at http://www.brainyquote.com
 

MISCONCEPTIONS

Loud rhythmic beats reverberated off the walls in the courtyard.  There were machines everywhere their glistening chrome sending out blinding flashes of light  from the hot sun.  Every few minutes a familiar sound could be heard in the distance, getting louder as it approached.  The crowd waited in anticipation as more of the machines arrived, their engines revving as they approached the gates.  There were both adults and their children all milling around and looking at the various displays.  Many of the adults wore similar style clothing, mostly leather. They wore the symbol of their ‘family’ on their backs so it was easy to identify who belonged to what group. Their bodies often covered in various coloured inks.  The children also had their faces adorned in bright colours, this ritual seemed to be taking place in a tent in a corner of the yard.   One of the machines stood apart from the others and there stood a man, his face a grinning skull with long grey hair.  He beckoned to the children to come forward and sit on his machine.


Is this an extract from a new Stephen King novel perhaps?  No – but I wouldn’t mind betting that the last thing you thought of was a charity fete.  It is a tongue in cheek description of the Stone Cross MCC’s charity fete held on Saturday 8th June.  The club work tirelessly throughout each year raising money for local charities.  The chosen charities this year were Ravens Rescue UK which is a non profit making animal rescue centre RAVENS WEB LINK  and Greenhall S.E.N. Nursery which is the nursery that my Granddaughter Jess attends and although based in Stafford also takes children from across the West Midlands area.  If you are on Facebook then pop over and like their page Greenhall Nursery.

Unless you are familiar with the biking fraternity you may well associate them with American TV Series such as Sons Of Anarchy or things that you may have read in the local papers.  Perhaps you believe that they ride around in packs causing mayhem. That they bite  the heads off chickens in perverse initiation ceremonies.  They wear leather jackets with patches and have the names of their club emblazoned upon their backs.  They are covered in tattoos, they look after their own.  Perhaps you think that people like this have no place in our society.

If this is what you think then you should have been amongst the crowd on Saturday.  The atmosphere was good, everyone was enjoying themselves, especially the children having their faces painted and dancing on the grass to the music.  The only chicken eaten was in the delicious curry which was for sale (amongst other good food)  which had been prepared by the landlord and staff of the pub hosting the event. There was a tombola, a children's colouring competition, raffles and various other things to keep the whole family entertained.  And that is the whole ethos behind bike clubs such as Stone Cross.  They are a family.  Yes they have their rules which members are expected to abide by but doesn’t every club have those?  Yes they wear their jackets (cuts) with patches (rockers) showing the name of their club on the back.  Yes they are very often adorned with various tattoos, but then that applies to a large number of our society nowadays.  Yes they do look after and support each other.  A lot of the people there were from other bike clubs who were there to show their support some had travelled quite a distance. I personally cannot find any fault with that.  There was no trouble, and non biker members of the public came and mingled with bikers.  The bikes were the main attraction of course.  Every biker loves to display their machine just as motoring enthusiasts like to show off their cars.  And the man with the skull mask?  Well he was beckoning children to come and sit on his bike so that the parents could take photos – How many owners of top of the range cars would encourage that?  The mask apparently was what he wore for the club’s Halloween party and all the time I was there I never saw one child run away frightened, if they did look a little unsure I saw him lift the mask up and smile.  

There is another group in our society that often get misjudged.  They can also look different.  Sometimes their speech is hard to understand or they have no speech at all.  They may walk in a strange jerking way or rely on machines to get them around. Some are unable to feed themselves or rely on other ways of getting food into their bodies. These people often get called names and are taunted by other members of society.  There are even members of our society who think that these people are a drain on our financial resources and that they should be terminated at birth.  These are the disabled.  

My Granddaughter belongs to this group.  She was born with an undiagnosed genetic defect which has caused her brain to be underdeveloped.  It has been said that she may never walk, hold an adult conversation or be able to get employment.  She is almost three years old.  At the moment she is surprising everyone by doing things that the experts said might be impossible.  She can crawl, pull herself up and cruise around the furniture, climb onto the furniture and is able to walk a few steps holding onto someone’s hand.  She is fed through a ‘button’ which goes straight into her stomach as she is unable to eat enough solid food to keep her alive.

My Granddaughter is one of the happiest children you could wish to meet.  She has a smile you could die for and a very bubbly personality.  She may not be able to talk as yet but she certainly makes herself understood.

She attends Greenhall Nursery and without their help and positive support I doubt she would be achieving some of the the things that she has, so the Nursery plays a very important part in her life (and ours) and she loves being with the other children.  All donations to Greenhall are used entirely for the children.  Peoples support and generosity means that each child gets a good Christmas present, one which is suited to their particular need and not just one ‘off the shelf’.  It means that the children are able to go on trips and that the mini bus that takes them (also provided via donations) is kept well maintained and safe.  It means that the school can pay for people to come into the school and talk to the children and show them things.  They have entertainers at Christmas, someone who comes in with small but unusual animals that the children can see and touch and also learn about and also someone who comes in with a host of ‘creepy crawlies’ to do the same thing.  The sensory room ( Jessica’s favourite place) can be well stocked and maintained and also other equipment purchased which is beyond the scope of the Education Departments budget.

On behalf of Jess and her friends at Greenhall SEN Nursery I would like to say a big THANK YOU to everyone who attended and supported Stone Cross MCC charity bash.  To the club members themselves I want to say THANK YOU.  I know how much work you put into these events and I know over the years many charities have benefitted.

Our society is rich in it’s diversity.  We do not all look the same, talk the same or have the same customs, but it is this diversity that makes us part of a unique family…the family of man.

Bikers often end their written messages to each other with the letters L & R.  I found out today that this stands for love and respect.  What a pity that not all members of our society share this.