THE GIFT

 

 
It’s that time of year again when children are busy writing letters to Santa . The Elves have been working hard all year to produce all sorts of wonderful toys. Actually it would appear that Santa’s elves have now moved with the times and display their wares in Catalogues and t.v. commercials, nevertheless it is still a time of excitement and anticipation and the build up to that very special day is just as important as the day itself.

My 6 year old Granddaughter Natalie has already chosen the gift that she would like Santa to bring her. Even when she was too little to express an opinion, it would still be easy for Santa to know what she wanted based on her age and ability.  When she was a toddler she was still able to point out a ‘Santa’ in a shopping arcade and get excited about the Christmas activities, despite the fact that she may not have fully understood the Christmas Story that was performed each year at playgroup, nursery etc.

Christmas for Natalie’s 3 year old Sister Jessica is a different matter. Due to her global developmental delay and the fact that she is non verbal, Christmas can become quite a challenge. Not for her to be honest but for us. The challenge usually begins with the gift.  Because of her developmental delay Jessica’s abilities to play with certain toys have always been limited. It has never been as straight forward as giving her something for her age group. Another problem has always been (and still is) the fact that Jess puts everything in her mouth. It’s a sensory thing and is not unusual but it does mean that everything she is given has to be able to be chewed or sucked safely, no small parts that could be choking hazards, no ‘dodgy’ paintwork or things that could come apart in her mouth. No, Santa definitely has his work cut out.

Last year saw me looking longingly at the little doll’s pram in the shop window, just right for toddlers who were now walking.  Problem was Jess was not walking.  I remembered how my girls used to love their baby dolls and playing Mummies, they would spend ages talking to their ‘baby’ and pretending to feed and change it etc. 

Jess has a baby doll.  She spends ages chewing it’s hands or feet. 

Last year, despite the fact that Jess was 2.1/2 I limited my search to buying things for her that were for children less than half that age and had resigned myself to the fact that this was probably how it was always going to be and thinking that Mr. Fisher & Mr Price should both get Knighthoods.

Awkward conversations arose with shop assistants as I would stand for ages staring at a display:-

“ Can I help you?”

“ I’m just looking for a present for my Granddaughter”

“ Oh lovely. What age is she?”

“two and a half”

“That’s a lovely age isn’t it, they are into everything and want to copy Mummy. How about this lovely dolls buggy, complete with parasol, or perhaps the little rocking crib to put her dolly into, it comes complete with bedding and is just right for a little girl of that age”.

“ Erm no, it’s not that simple, she doesn’t walk, she was born with….actually I will leave it but thank you anyway”.

By then I would have beaten a hasty retreat out of the shop tears stinging in my eyes. The poor shop assistant wondering what she had said that was wrong.

Back to the baby shop.

As you may be aware from previous blogs changes were afoot. Jessica once again proved the Specialists wrong. After learning to crawl she then began to pull herself up holding onto the furniture or anything else that was handy. Soon she was cruising around the furniture, still holding on but getting more confident by the minute. Now, months later she has gone from strength to strength and walks independently from room to room. She now stands without having to hold on to anything.

There is a lovely picture at Jess’s Nursery of her standing painting in front of an easel. She has always loved doing things that are ‘crafty’. Painting, play dough, you name it and the messier it is the more Jess enjoys herself. You can tell when she has been painting at Nursery and what colours she has used, as despite their best efforts to clean her up before home time, she still manages to get the paint in her hair, ears and other places. 

She has a unique style which involves putting the loaded paintbrush into her mouth and then daubing this over the paper or anywhere else she can get it! Very often she will abandon the brush altogether (except for a quick chew of the end every now and then) and just go full on into the paint with her hands. The paint combined with excess dribble creates a most unusual but somewhat pleasing effect and if the ‘artwork’ I have seen on display in the Tate Modern is anything to go by could well be viewed by critics as something quite exceptional in years to come.  Mummy & Daddy would be well advised to keep these little masterpieces somewhere safe for future generations to admire.

Painting at home involves covering as many surrounding surfaces as possible with plastic tablecloths or similar and then letting the budding artist get to work in her chair with the tray attached.
 

THE ARTIST AT WORK

            
Now the time had come for presents to be given once again and you could say that I had a bit of a ‘light bulb’ moment.  Actually given the time of year perhaps it was more of a ‘fairy light bulb’ moment!  Anyway it came after picking Jess up from Nursery recently and being told how she had loved the activity that morning as it was painting. This was quickly followed by an apology about the blue paint that they had just noticed was still in her hair, I was still chuckling about that on the way home when in a flash of inspiration I knew exactly what to get Jess for Christmas.

The next day the scenario was quite different:-

“Can I help you?”

“ Oh yes please I would like to purchase an easel, it’s for my Granddaughter”.

“Oh how lovely. This one is really good, it has a blackboard on one side and a whiteboard on the other and if they want to paint there is a clip to attach the paper. How old is your Granddaughter? This easel is only recommended for use by children aged 3 years and over.”

“She will be 3.1/2 at Christmas”

“No problem then, this will be the perfect gift for her”

“Yes, this year it will be”.

A NIGHT TO REMEMBER

The stars were shining brightly in Edgbaston, Birmingham on Saturday 16th November.  I am not talking about celestial stars, but stars of the swimming world. 

As referred to in my last post Thankful Thursday Natalie had been shortlisted to receive an award at the Kellogg’s ASA Swimtastic Awards 2013.  This is an event held yearly to congratulate and recognise outstanding participants from the swimming world.

The day started early with Natalie and her Mummy Emma getting ready to travel to Birmingham and to check into their hotel.  A room had been provided for them so they could stay overnight.   Natalie as you can imagine was very excited.

Once they had checked into the hotel a coach was waiting to take those invited to take part in an exclusive ‘swim with the stars’ event at a nearby leisure centre. Here they had the opportunity to swim with some of the UK’s top swimming stars both Olympic and Paralympic.  There would also be photo opportunities and autograph sessions.  Natalie’s Daddy Ben went along to this with Jess as they wanted to see Natalie swimming and enjoying herself.  

Unfortunately, Jess was not altogether happy on the poolside.  As you can imagine it was very noisy with lots of clapping and cheering and air horns were being let off at times, which Jess found quite upsetting.  Children like Jess find it hard to cope with noisy environments as they cannot understand that it is nothing to be scared of.  You cannot explain to Jess what is going on.  Fortunately Ben did manage to see quite a bit of the activities before leaving to bring Jess home.  

It had been decided not to take Jess to the evening’s festivities.  For one thing she would probably have had issues with the noise again and also as she is fed through her gastrostomy button during the night whilst asleep, keeping her up late just means that she does not get all of the fortified milk feed which she needs.  The other thing was that to take Jess would have meant having to give Jess a lot of attention and this was Natalie’s night and she deserved it.
Nanny Joan and Granddad Noel had very kindly offered to look after Jess in the evening so that Ben, Emma’s Sister Sarah and her Husband and Hubby & I could go and watch Natalie receive her award.  

The Gala Dinner was held at Edgbaston Stadium.  Upon arrival we were greeted with champagne (always a good start to an evening) and then we were called into the main hall to be seated for dinner before the ceremony began.  Whilst sipping on my champagne I noticed Sharron Davies on one side of the room happily chatting with guests.  

The dining hall took your breath away.  The tables were decorated with stars and lights and the whole room was bathed in blue and purple light.  Our table was right at the front which was brilliant and each one of us had a place setting which included a programme and a very cute pink duck!  One of the lovely things about the evening too was that various Olympians were sitting amongst the guests at the tables.  We were joined at our table by Katie Clark and Vicki Lucass who were part of the GB Olympic Synchronised Swimming Team.  They were lovely girls and very good company.



We had a lovely three course meal.  For the past week one of Natalie’s front teeth had been wobbling precariously, during the soup course it decided to fall out!  Natalie was fine about it, but it meant that on all photos from now on she would have a lovely ‘gappy’ smile.

Once the meal had been concluded it was time for the award ceremony.  Our host for the evening was Steve Parry, Athens 2004 Olympic Bronze Medalist.  He was a brilliant host and had everyone laughing.

There were three awards for each category, Bronze, Silver and Gold and there were 12 categories covering all aspects of swimming related activities. 
When the time came for the Fundraising Award we were on the edge of our seats, although Natalie had been shortlisted we did not know for definate that she would be getting an award.  I am both pleased and proud to say that she was awarded a Bronze and as you can see from the video below went up to collect her trophy like a true ‘pro'

The night went by all too quickly the awards being followed by a disco.  Emma & Natalie were staying overnight at the hotel courtesy of Swimtastic and there were coaches on hand to take them there.

Within the modern Olympic Charter I believe are these  words “The practice of sport is a human right. Everyone should be able to play sport without discrimination of any kind and in the Olympic spirit, which requires mutual understanding with a spirit of friendship, solidarity and fair play.”  We should all do the very best we can in life and help others to do the same.  

During the award ceremony we heard of people from all walks of life and of all ages who had lived up to these words.  We heard of people who had overcome their own personal difficulties to achieve their goals and of those who had given up their time to help and encourage such people.  It was a truly humbling experience.

So a big THANK YOU to Kellogg’s, ASA and all those involved in putting together such a wonderful event.  To the athletes who gave up their time to swim with the nominees, sign autographs, have endless photos taken and took time to talk to people and answer their questions.  You are true Ambassadors for sport and the spirit of the Olympics. 

Last but by no means least, an even bigger THANK YOU to all the truly inspiring people who were nominated for these awards.  You were the stars that evening.


Oh yes, there was another magical thing that happened that evening.  The Tooth Fairy came to Natalie & Mummy's hotel room whilst they were both sound asleep!

Charity Award Winners

Proud Mummy & Daddy

THANKFUL THURSDAY

There are a number of exciting things I want to tell you about so to coin a phrase ‘are you sitting comfortably? then I’ll begin’.

Firstly I want to thank everyone who has through their actions, made me realise once again how kind and generous people are and how my words alone will not cover the gratitude that we feel as a family.  Some I have mentioned before in previous blogs, others are recent family members below are two people who are friends of Emma's that have recently raised money to go towards specialised equipment for Jess.

Charley Webb  This brave lady did a sponsored sky dive.   Thank you Charley , well done for being so brave.  I hope you enjoyed the experience.

Helen Pennington Recently completed her first marathon after only starting to run a couple of years ago and again asked people to sponsor her. Helen you are an inspiration.

Incase you think (as I might have done at one time) that all equipment needed is supplied by the Local Authority etc., then let me tell you that it is most definitely NOT.  And even if the LA are willing to supply certain equipment it is never straight forward.  Ask any parent of a child with disabilities and they will tell you, you have to fill in endless forms, make lots of pleading telephone calls, jump through hoops even and still the answer will probably be no!  Families rely heavily upon charities and the generosity of others. 

Having a disabled child in the family is life changing.  Not just for the parents but for other close family members too.  

It is not necessarily life changing in a negative way though.  For myself, since the birth of Jess I have learnt so much (and still learning) I have also had the pleasure of getting to know some wonderful people who I would never have met before.  It has also changed my perspective on life.  Made me realise that despite everything we have such a lot to be thankful for.  The saying “there is always somebody worse off than yourself” is very true. 

I love the things I am doing now and want to keep on doing them, so with that in mind I have also been assessing how to best look after myself and keep myself fit and healthy. At 58 I am in the age bracket where putting on a few pounds seems par for the course.  According to the Wii fit my BMI indicates that I am overweight, not too much mind but nevertheless I could do with being in the healthy weight range to lessen my chances of heart disease and strokes etc.  I have always had a healthy appetite and so have never had any success with diets but I know that to keep myself healthy a balanced diet is important but more to the point regular exercise to get my heart beating a bit faster.  

I had embarked upon the couch to 5K fitness programme some time ago and was enjoying it despite having never jogged/run in my life before except a quick spurt for a bus at times.  I then suffered a bout of plantar fasciitis which is a very common but painful condition and which put me off my training programme.  I am happy to say that has now cleared up and I have started running again, but this time I have been inspired by the determination of Helen and her marathon run and the guts that Charley had to do her sky dive.  I started to think about all the lovely people who have given up their time and overcome fears and obstacles to raise money for Jess and others like her and because I believe strongly in 'putting back’ I have decided that I am going to run a 5k race next year for charity and hopefully that will be just the start.  I can’t promise any marathons mind you!  I shall be logging my progress over on my other blog site Coffee & Waffle.

Now for more good news…

Swimming plays a big part in Natalie’s life. You may recall the Swimathon that she did with her friends to raise money for the charity Newlife who were supplying Jess with a special bed, (click here to read about this event) well I am pleased to say that she has been shortlisted for an award to commemorate her achievements!

Emma recently sent me details of something she had seen from the ASA in partnership with Kelloggs.  Each year they host a Gala Swimming Celebration called the Swimtastic Awards which aims to congratulate outstanding participants from the world of swimming.  

I nominated Natalie for the Charity Award.  She has been shortlisted and in November will be having the day of her life.  The day starts with  a ‘swim with the stars’ session.  She will have the opportunity (along with Mummy) to meet and swim with some of the UK’s top swimming stars.  Later there is an evening awards dinner when the final winners of each category will be announced.  

I am so pleased for her.  Natalie is such a good girl and a wonderful big Sister and Jess adores her.  It is not easy having a sibling with a disability and there are sacrifices that have to be made at times but Natalie accepts these without question and I think she deserves this special day in recognition of that.  Even if she is not an overall category winner on the night she will always be a winner in the eyes of her Sister and of course us.  I shall let you know how it all goes.


And finally….
Last time I blogged I included a short video of Jess walking unaided across the room.  Well I am happy to tell you that she is now walking everywhere that she can.  Last week we went to a small nature reserve and Jess happily walked (holding onto an adults hand as it was slippery underfoot) most of the way around, it was only after walking for over half an hour that she got tired and was carried a short way back to the car.  

She now walks around Nursery and only needs her wheelchair whilst there for having her pump feed.  She also climbs the stairs (with supervision of course) when its time for bed and the other day I went with Emma to pick Natalie up from school and Jess walked up and down the playground for a short time (she likes the painted coloured circles ) completely unaided and enjoying every minute of it.  No-one would have guessed that it was thought by the medical profession that she would never be able to walk.  Another display of guts and determination.

You may have wondered why I have called this blog Thankful Thursday?  Thankful Thursday is something that the support group (SWAN Uk)we belong to run on their Facebook page every Thursday. The idea is that people post whatever it is they feel thankful for.  I am thankful to EVERYONE who has supported us during difficult times, THANKFUL that there are such kind people in this world who have organised events, sponsored an event or just attended an event that has helped raise money either for equipment for Jess or for the various organisations and charities that we rely on so much.  THANKFUL that people actually read my blogs and share them so that more and more awareness can be raised to hopefully help others in the future.

THANKFUL that I have such a wonderful family and friends.

THE ALMOST UNFINISHED BLOG

This blog started out to be JUST about my youngest Daughter’s wedding and how Jess had coped so well with the Big Day, but now I want to start with something else that happened to me whilst I was preparing my blog.  I think it is important to document this as I know many others go through similar feelings. 

You are not alone.

My Daughter had asked me to read through Jessica’s  Educational Statement to see if I agreed with her that all Jess’s needs were covered.  I took time out from writing my blog post to read this very lengthy report.  It pulled no punches in detailing what Jess was achieving and what was not being achieved as yet.  It has to be like this I know as the aim is to get the best possible help for her based on her needs.  I have to say that whilst reading the descriptions of her I was in full agreement with what they had written even though it was not easy reading. It was the part that summarised her abilities in age that got to me.  

Jess is 3 years old, she has global developmental delay so it is quite natural for her to be behind for age.  We tend not to dwell on this, we are very positive as as family and celebrate the things that she is achieving without paying much attention to her actual age. Seeing it written in black and white was such a shock to my system.  I felt completely deflated.  I started to look at my blog post again.  The happy words I had wanted to write could no longer be found inside my head, instead this was the sort of ‘conversation’ that was taking place:

It was hard reading about the things she could not do but then HOPE spoke up-

“It’s not that bad.  You know she is making progress”

Hope was right.  A lot of progress had been made, ok so she was a bit behind for a three year old but who cares? 

The next page detailed her abilities in age, I started to read the report. This was not what I had expected.  Suddenly….WAM… in barged DESPAIR without any warning.

Hope hid away in the corner.

“How did you get in?”

“You let me in”

“No I don’t want you here, I was talking to Hope it was all o.k.  Hope where are you?”

“It’s there in black and white, you can’t deny it – stop dreaming, stop fooling yourself” 

I wanted DESPAIR to go away but still the voice came back at me.

“You weren’t expecting that were you?”

“Come on admit it, you are living in cloud cuckoo land”.

DESPAIR began to wrap his dark cloak around me, he put tears into my eyes and filled my heart with heaviness.  I had to fight, DESPAIR was no friend of mine.  That was when HOPE came back.  DESPAIR left and once again HOPE put a smile back onto my face and a warm glow inside me.

The next day I looked at the blog post I had started to write the previous day.  This time I had no trouble finding the words.....

A PERFECT DAY

On the 15th August I had a brilliant plus very emotional day.  It was my youngest Daughter Sarah’s Wedding Day. 

Like all Mothers I had spent the past few months worrying and fretting about the arrangements and whether or not the good weather we were currently enjoying would last out for the big day.

Jessica, along with her six year old Sister Natalie, their Mum Emma and Sarah’s best friend Becky were all to be Bridesmaids.

When the wedding was first being planned Jess had only just started taking a few steps holding onto the furniture.  At the time we had said how wonderful it would be if she could walk down the aisle.  We were not expecting her to walk completely unaided and at one time we even talked about her using a walker if she was able which we could decorate for the occasion.  The important thing was that she was a bridesmaid with her big Sister.  It did not really matter if she walked or was carried by her Mum.

By the time the Big Day had nearly arrived Jess had once again proved everyone wrong.  By now she was cruising around the furniture at home with confidence and climbing onto the chairs and the sofa.  She could walk quite well holding just onto your finger and had even taken a few little steps completely on her own.  Her special boots were replaced by lightweight short leg splints which meant she could wear ordinary shoes over the top.  Because of the hot weather she had some Peppa Pig lightweight shoes which she loved.  Fingers crossed, it looked as if she would be able to walk down the aisle holding onto her Mummy’s hand but again we happy for her just to be part of it.

One of my concerns was that it would all be too much for Jessica to cope with.   I had no worries about Natalie, she was taking it all very seriously and I knew she would do everything that was expected of her.  No, my concern was that Jess might get distressed by the amount of people, the noise of the organ or the general atmosphere of the Church.

It was planned to take her to a Service in advance of the wedding but she had an ear infection and was poorly for a time so that never materialised. We were just going to have to see what happened. 

On the morning of the wedding my house was buzzing with activity, Sarah was having her hair and make up done, the photographer was moving in and out of rooms clicking away with his camera, Becky, Emma and Natalie were also getting made up and ready.  It was decided that Jessica would be got ready at home and go straight to the Church with her Daddy and Nanny & Granddad Hawley. 

I spent most of the morning wiping away tears.  No the weather had not turned, no the arrangements had not gone wrong – everything was just perfect. They were tears of happiness.  Sarah looked stunning in her wedding dress. My thoughts turned to when my girls were little, they were such pretty girls – they were now beautiful women.

Natalie was so excited.  I was not allowed to see her until after she was ready, when I did see her the tears came tumbling down my cheeks again.

I even had the make up and hair ladies work their magic on me and I have to admit I did not recognise myself when I looked in the mirror.

Sitting down in Church waiting for Sarah & her Dad to arrive.  My stomach was turning somersaults.

The organ started up with the Wedding March, everyone stood up and all eyes turned towards the Church door.  Sarah & her Dad followed by Natalie, Becky and then Emma with Jess holding onto her hand and walking.  Yep I cried again, but to be honest I don’t think I was the only one at that point!

It is fair to say that Jess was not too happy at first as you can see, especially with everyone standing up and looking at her but she did not have a meltdown, Emma just guided her slowly down the aisle and let her stand holding onto a pew at the bottom. 


She was fine during the ceremony and even walked back down the aisle at the end and loved having her photo taken outside.





A truly PERFECT DAY.

A couple of days ago Nanny Joan & I were sitting talking and Jess was doing her usual cruising around the furniture.  Suddenly she let go and took about 7 steps (maybe more) across the room to get to the television table.  We were speechless, this was more than she had done before. 

Yesterday after fetching Jess back from Nursery I managed to get some video footage of her cruising and walking un-aided on two occasions.

“She may never be able to sit up unaided.  She may never walk.”

Next time DESPAIR makes an unwanted appearance just remember that HOPE is always there you just have to let it back in.

LEIBSTER AWARD

 

I recently had a lovely surprise, my blog had been nominated for a Liebster Award by the very talented Complicated Gorgeousness.  For those who have not heard of this award, it is an award given to bloggers who have less than 200 followers and is a way of new blogs being found and a way for new blogs to hopefully find new readers.

 

To accept this award there are strict instructions that have to be followed and these are:

*  Give a link back to the blog that nominated you (see above)

*  Answer some questions set by the person than nominated you which in this case is Complicated Gorgeousness

* Reveal 11 random facts about yourself

* Nominate 5-11 new blogs

* Set them some tricky and revealing questions

* Tell them that you have nominated them

So here we go.  First I will start by trying to answer the questions put to me:

1.  If someone gave you a free holiday where would you go?

I was tempted to say anywhere in France at first, but I think as it is a free holiday I am going to say Japan.  Since being a child I have always been fascinated by all things Japanese.  I love the art, the culture and even the music.  I don’t know how this fascination came about, but I can remember being given a Japanese fan as a child and it became a treasured possession for years until it got broken and eventually thrown away.  I loved the delicacy of it, the images that were painted on it, the bone handle that had Japanese symbols down it and even the box it came in with it’s Japanese writing down the side.

2.  What is better Christmas or Birthdays?

Christmas definitely.  When you get older Birthdays are just a reminder that that is another year gone by and your biological clock is ticking away.  Christmas on the other hand is a time for getting together with people and sharing.  I have to say though that until a few years ago Christmas was always a time I dreaded.  Not because I did not like Christmas but it seemed to be the time when year after year bad things happened within the family.  There were deaths, hospitalisations, illness, a friend of mine used to say that she was frightened to say to me have a happy Christmas as the chances were that I wouldn’t!  I am glad to say that the Christmas Jinx now seems to have gone (touch wood).

3. If you could be anything in the world what would you be?

Mmm this was a tricky one and nearly had me burning my roast potatoes! (I should explain I am typing this whilst cooking a roast dinner).  I always wanted to be an actress but perhaps it is too late for that now so I will go for being recognised as a writer.  Writing has always been a passion.  I have always written in one form or another, poetry, odd odes ( in demand when someone was leaving from where I worked), short stories and now blogs.  Like every other ‘would be’ writer I have a novel inside me, well one or two actually, but never seem to find the time to get going with them.  My blogs are the next best thing I suppose.  So yes, I would like to be the next J.K Rowling or even Enid Blyton!

4.  What is your favourite dinner?

No need to even think about this one, as a Black Country wench it has to be pigs feet and grey peas! 

5.  Which celebrity manages to push all your buttons in a bad way?

I don’t really go in for all of this celebrity thing – I do not believe in putting people on pedestals but I suppose if someone does get my goat more than anyone else it has to be Madonna. 

6.  X-factor or Strictly Come Dancing and why?

*boring fart alert*!!  Neither – never watched them and never really want to, just not my thing – sorry.

7.  Who should have been your Husband (but they didn’t know it)?

Rik Mayall.  Love his humour, love his eyes, loved his Bottom (do you see what I did there!)

8.  Describe your perfect day

Well apart from it being my favourite Lou Read song, I think it would be a day spent with my Husband by the sea somewhere.  I love being by the sea.   The sun would be shining – but not too hot- we would be sitting looking out at the sea surrounded by a beautiful coastline – listening to waves crashing rhythmically on the shore and the sound of the seagulls above.  Later we would treat ourselves to a fish & chip supper (always taste better from the seaside)  throwing chips to the seagulls and watching them swoop down. Then a slow walk along a coastal path watching the sun slowly setting.  Just as darkness starts to creep in we would head to a small local pub overlooking the sea, we would chat over a couple of drinks before heading off to the room we had booked which of course has a sea view.  We would spend some time looking at the moonlight over the sea before jumping into bed…the rest is strictly between Mr H and myself!

9.  If you could travel back in time to any decade for any event, what would it be?

Wow this one is hard but it would be back to August 28th, 1963 to be in the crowd listening to Martin Luther King and his ‘I have a dream’ speech.  It has to go down as one of the most motivational speeches in history.  Unfortunately people only tend to know the most famous excerpts from it, but it should be downloaded and read in it’s entirety.  The atmosphere at the time must have been electric.  August 28th is also my Birthday!

10.  Where do you stand on beef burgers?

Well I don’t really have any particular stance.  I never buy them (unless we are eating out) I always make my own.  They are the easiest thing in the world to make and you know what you are putting into your mouth.  I find burgers to be rather bland so spice mine up with herbs and chilli.  If I do eat a burger out I will always choose a veggie burger. 

11.  What two words best describes you?

Critical and caring.

 

ELEVEN RANDOM FACTS ABOUT ME:

1.  I am a Trekkie

2.  I used to attend conventions with my best mate & we both had Next Gen uniforms.

3.  I have been on Local Radio (in Star Trek Uniform)

4.  I have socialised and danced with The Bounty Hunter from Star Wars (Jeremy Bulloch)

5.  I worked at the Start Trek Exhibition at the Gas Hall, Birmingham

6.  I was adopted but managed to trace & meet my Birth Mother

7.  I can name the 66 books in the bible (Have to sing them to remember them – although a bit rusty now) My parents used to holiday in bed & breakfasts in deepest Wales.  One holiday we were asked if we wanted to join in with the family evening sing a long (no t.v.’s).  One of the songs was based around reciting all of the books of the bible – I spent weeks after with a bible practicing.  (see item 8)

8.  In times of stress to take my mind of something I recite the books of the bible in my head, going back to the start if I make a mistake.  Got through root canal work at the dentist quite easily using this method!

9.  Since finding my birth Mother I have found out that I am half Welsh!

10.  I love walking around graveyards and anything related to how different religions deal with death and the customs that surround it.

11.  I once applied for a job at a funeral parlour but was turned down as they thought I was too qualified!!

 

Now the bloggers I would like to nominate (in no particular order) are:

1.  Monkeys Mummy

2.  Life through my eyes

3.  Sun Moon and Stars

4.  Nobody Said It Was Gonna Be Easy

5.  This Is No Ordinary Kid

 

The questions that I would like to ask them are:

1.  What would you have inscribed on your tombstone?

2.  What is the best book you have ever read?

3.  If you could ask just one person (living or dead) one question who would it be and what would be the question?

4.  Describe your immediate surroundings

5.  If you could delete something from your past what would it be?

6.  Who or what has inspired you most up to the present day?

7.  What has been the best day of your life so far?

8.  Why do you blog?

9.  What would you like to be doing in 10 years time?

10.  How did you celebrate the Millennium?

11.  What is your favourite drink (doesn’t have to be alcoholic)?

Good luck…Xx

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.