Rays Of Sunshine

With the thrills and spills of the festive season far behind us, and the long cold dark days stretching out before us, it was hard to imagine that January could be so very exciting........

An accessible paradise isle

With the darkness of January enveloping the new year it was so fabulous to be transported by Daddie to a paradise isle, also known as the Sheraton Skyline Hotel, Heathrow Airport.  Rolf treated us to this special night-stop as part of a dream week-end organised by a wish-granting charity, Rays of Sunshine.www.raysofsunshine.org.uk

Ready to rock!

The next day, after a breakfast overlooking the runway, fantasising about future holidays, we made our way to the Hilton in Kensington where Rays of Sunshine had booked us in for the next part of our adventure.  After a trip to a very swishy shopping mall, Westfield, the girls glammed up ready for a very special evening.  Rolf took charge of doing Tilly's nails whilst I concentrating on blinging up Tilly's chair.  Then we were whisked away in a black cab to Planet Hollywood, all organised by Rays of Sunshine.  

You'll never guess who I had in the back of my cab!

It was so exciting whizzing up through all the famous landmarks such as The Albert Hall, Harrods, and Hyde Park Corner on our way up to the West End for our meal.  We spent the time recalling all of the magical moments that we've had in London and just how intoxicating a city it is for us, especially with the wheelchair-accessible buses.

Planet Hollywood was buzzing, the food was great and the staff were brilliant making sure that they found us a table that would accommodate Tilly's arm supports.

We tried to ramp up Tilly's bed with the luggage rack and various spare pillows to create the profiling bed that she has at home.  Normally this works a treat, but I think that the excitement of what the next day would hold was too much and Tilly needed moving about twice an hour!  Not to worry, Rays of Sunshine had booked us a late breakfast, leaving plenty of time also to get ready for the big moment. 

The morning was spent in a whirl of curling tongs and bendy rollers as the girls dollied up to meet their idols.  Rolf spent the time hauling Tilly's equipment down to our car the underground park ready for home, between blow drying Tilly's hair and unravelling her blond tresses - what a lovely Daddie!  The girls had devoted many hours to purchasing just the right outfit with matching accessories and I must say that they looked a million dollars.




Your carriage awaits!

At 1230 we made our way to the lobby where the longest, shiniest, most poshest limousine was waiting to collect us and take Tilly and Candice to meet five very special young men.  I must confess I shed a tear that so much had been done by Rays of Sunshine to make my little girls so happy. 

Is this for real?

The Chauffeur was fabulous and straight out of a movie and took lots of photos with his paparazzi-style camera.  Rays of Sunshine had really thought of everything as they had booked a black cab to 'follow that limo' to our destination.  It really felt quite surreal, with the flashing lights illuminating the champagne and lemonade stocked bar - we all giggled like schoolgirls and squealed as passers-by wondered which celebrities could be sweeping through London in such a glamorous car - and it was us, the Griffiths' Clan from Cheddleton.  They do say that half the fun is 'getting there' and this was certainly no exception as Tilly has always dreamt of a ride in a limousine, although she is not the only one!

The car purred around the London streets and came to a sedate stop at the Hammersmith Apollo where blazoned across the entrance were the two words that sent the girls into orbit "One Direction".  The excitement had now reached fever pitched and the girls were screaming silent screams and smiling and squeaking so hard that I thought they'd burst.  I must confess that I contributed many a whoop and yeh! as their jubilation and anticipation overflowed. 

We were met by the very beautiful Siobhan from Rays of Sunshine who greeted us like treasured friends that she was about to guide on an unforgettable experience.  I couldn't see her magic wand, but I'm sure that she had one.  Her care and attention to every tiny detail was touching and appreciated, especially when Siobhan and her colleagues created a human wall to shield Tilly as Daddie gently lifted her from the limo back into her powerchair.

We were guided through the elegant doorways of the Apollo, past a huge crowd of waiting fans who, all good-natured, complimented the girls on how they looked and asked them to pass on love and kisses to the boys.  We went into the auditorium where the stage was set ready for the One Direction concert that evening, and then with little or no fanfare, five handsome, smiling, young men walked calmly into the room and warmly greeted Candice and Tilly. 

Smiles all round

They were so relaxed and friendly that within an instant the girls were chatting with them like old friends.  They were interested in everything the girls had to say, and so happy to answer questions about their journey so far.

A Customised One Direction Powerchair was admired

They were all delightful and cheerfully signed all the merchandise that the girls had brought along with such enthusiasm and happily posed for photos which were also captured by a Rays of Sunshine professional photographer.  (They do think of everything)!

He's my favourite!

They seemed genuinely thrilled to receive a copy of Tilly's book, Tilly Smiles, and said that they'd spend time reading it properly in the dressing room.  Such poppets!



I did hear myself congratulating them on being so lovely and taking time to work with Rays of Sunshine to provide such special memories for children with disabilities - they really don't have to, but I'm so glad they did!


With fond farewell and heartfelt thank yous to all concerned we were then treated to a guided tour of London before returning to our car and making our way back up to Staffordshire where I am still waiting for the girls to come back down to earth!

There were other 'rays of sunhine' that brightened up January for us which included an article on Tilly Smiles in the Daily Express.  This was incredibly exciting and down entirely to relentless efforts of Jon Nock http://www.idiscreativemarketing.co.uk/ who works so hard to promote Tilly's book.  The book is now available from Amazon and all proceeds go directly to the Jennifer Trust for Spinal Muscular Atrophy.  Jon also works to shed light on all the marvels and opportunities of Tilly's Balder power chair which really is the most amazing piece of kit.  There isn't a day that passes that I don't count my blessings that Tilly has such a magical machine

Yet more shafts of light piercing the gloom is the progress that is being made on the Rudyard Sailability accessible boatstore.  The brickwork is steadily rising and the honey-pinky, tumbled stone is giving the building a beautiful 'old cottagey' finish. 




It's really taking shape

I really enjoy being involved with the actual construction of this building and so enjoy donning hard hat, high viz and wellies every Tuesday to lend a hand with other Volunteers with whatever donkey work that needs doing.  It is so incredible to see such a lovely building rising out of what was a big, muddy hole.  There have been so many supporters who have contributed to this £500K project which now only needs £100K to see the job completed, hopefully by the start of the new season in April. 
One of our recent benefactors was Pritpal Nagi,  fonder of the Sanja Charity who hosted the Hollywood/Bollywood Ball for Rudyard Sailability in December.  There is a short film on U-tube created by the Sanja Charity, featuring Tilly, Pritpal and myself which provides a good update of the project.

http://www.youtube.com/watch?v=8OsO0PDxoN8





January can never be gloomy because my very own ray of sunshine, Candice, has her birthday.  I just can't believe that my little girl is fourteen already.

As Candice's birthday co-incided with Chinese New Year, Rolf treated us to a Chinese banquet which was delicious.  Candice was further treated Daddie's famous 'creme brulee' which was awesome.





Make a wish!

Even more reasons to be cheerful amid the winter chill as it was Tilly's birthday three days after Candice's.  Daddie conjured up a fantastic meal of 'salmon with skin' and 'African potatoes' which is a melange of two of her favourite dishes.  Tilly went for the more traditional Alabama Chocolate Fudge Cake to make her birthday wish.


One of Tilly's presents was a tall table with a tall stool, and a tree - all for her room makeover which Rolf has been working on.  It's absolutely perfect, so very sophisticated and Tilly loves having breakfast here with Candice.  It is also so much easier to get into with her chair.




Examining the card signed by One Direction

Between the birthdays we celebrated our fifteenth wedding anniversary on Burns Night when Rolf piped in the Haggis and respectfully addressed it with Rabbie's Ode.  As a former vegetarian, I even managed a mouthful of the stuff washed down with a pint of whisky and a mountain of tatties and neeps!  Never again!

 An absolute ray of sunshine for all of us is Lexi who in spite of the big freeze just loves splashing through any piece of water she can find.  Our daily walks are marvellous for the mind, body and soul and there are glimpses that she is learning to come back when I call, which will do marvels for my blood pressure.  Lexi is devoted to Tilly and shadows her every move and just loves to snuggle up beside her as she is big enough now for Tilly to reach her.


Come on in - the water's lovely

We had a  lovely yomp at a local reservoir, Tittesworth, with special friends and their dogs.  The wheelchair-accessible walkways meandered through the woods and around the water's edge so that Tilly and her friend, Charlotte could really be close to their doggies having so much fun.  



Tea for two

Charlotte's family came back for a cuppa and to view Tilly's room as they are just about to take on their own ground floor disabled facilities adaptation - such a huge task, but so very necessary as they are still having to manage to get Charlotte upstairs.  I wish them the very best of luck as it can be a very stressful time.

So, it has been a rather sparkling January with so many rays of sunshine to chase any winter blues away.
Here's to all that is to come in February.







Happy Birthday love Lexi















It's the Dog or the Blog!





Back in the summer the Griffiths' Clan were thrilled to welcome the arrival of Lexi, and life has never been the same since.  Lexi shares Tilly's room, so everything took forever to do because whatever we picked up we'd find a fluffy puppy hanging off the end of it.  For the first few weeks, every two hours during the night I found myself out in the garden, not dressed in a chiffon negligee with a glass of chilled wine, but in wellies and dressing gown with a pocket full of poo-bags!  A very busy time, but all worth it as Lexi is now house- trained and sleeping through the night.  Lots of work still needed, however, especially on her enthusiastic welcome which would knock a horse down, and also her 'shoulder-wrenching' walking on the lead.  We also suffer from 'puppy paralysis' whereby Lexi looks so adorable that we all just stop what we're doing and swoon over her. 

Lexi's Arrival

Lexi's arrival has meant, however, that I have not found a spare moment to visit Blogsville, so I am attempting to do a quick resume with a selection of photos, with a New Year's Resolution that I will try and keep up to date.

So, back in the summer with a van-load of risk-assessments and heaps of preparation by all concerned, Tilly joined in the school trip to Cornwall, staying at a brilliant, wheelchair-accessible Youth Hostel in Penzance.  I went along too with Tilly's PA, Sally, and a brilliant time was had by all. 

Paddling on the beach under St. Michael's Mount

Lunch on the sands of St Ives



Tilly overcoming her fear of balloons at an installation at the Tate St. Ives



Meeting up with friends at the Eden Project

Once again, with Sally's invaluable support, we enjoyed a fantastic week-end at the Calvert Trust, a fully-accessible Outdoor Pursuits centre, thanks to the Jennifer Trust for Spinal Muscular Atrophy.  We went to the Cumbrian site which was mind-blowingly beautiful and we met up with other families living with SMA and got to try so many fantastic activities provided by trained staff who really understood all our needs.  We are definitely going back to the Calvert Trust, but hopefully we will be able to take Daddie and Lexi with us.

Tilly viewing the Osprey Nest on a woodland walk

Yes, that's Tilly abseiling!

Lexi  really makes the most of the garden and as managed to reconstruct all of the ornamental features and dig up the beds.  Our modestly manicured lawn now looks like an war zone.

Thinning out the broom

Helping Daddie with the BBQ

We were really honoured to be asked along to the Donna Louise Charity Ball, where Tilly and I gave a little speech.  As it was local, it was also a special treat to have Daddie come along too.

Treetops 'Jazzamatazz' Ball

One of the major highlights of the summer was the Creative Learning two week summer school at the Regent Theatre which culminated in a production of Fame.  It was truly awesome - never did I imagine that I would see both my little girls leaping about in neon on a professional stage - a real credit to all concerned.

Just adding a bit of greasepaint






Tilly's book goes on sale on Amazon

Such a thrill to see Tilly's book on sale, all proceeds going to the Jennifer Trust for Spinal Muscular Atrophy.  So far we have sent off nearly £1,000 from sales to family, friends and visitors to our Guest House.  Here's hoping it will provide information and inspiration to all who read it, it was certainly very rewarding a project to be involved in, and the reactions so far have been very promising.



Showtime!

  

Rudyard Sailability was honoured in 2011with a Queen's Award for Voluntary Service - the MBE for voluntary organisations.  It was such a boost for us all at the Charity as we have been having to operate from unsatisfactory temporary accommodation whilst we are battling to realise our dream of a fully-accessible boat store.  A small group went to Buckingham Palace to meet the Queen and collect the certificate, and then later, the Lord Lieutenant of Staffordshire came along to Rudyard Lake to present the Volunteers with their award.

Rudyard Sailability sailing into success

 In September the Griffiths Gels were honoured and delighted to attend the Caudwell Children Butterfly Ball.  It was a truly glittering evening and we had the privilege of meeting many wonderful people as well being entertained by Robin Gibb and Billy Ocean.  The event raised over one million pounds for children living with disability, a fantastic achievement for this amazing charity.



Such lucky ladies!

I have long been amazed and in awe of all involved with the Guiding movement and was bowled over by their sleepover for 300 Guides at Lichfield Cathedral.  It was one of the most spine-tingling events ever, complete with a midnight feast in the grounds in the shadow of the three magestic spires.  Tilly was included without any fuss or drama, not even when we blew a fuse! 

The Guides' Sleepover at Lichfield Cathedral

Looking for the Staffordshire Hoard



Lexi hasn't quite mastered the powerchair finds it very comfortable!



Lights Out!

The Guides, never ceasing to amaze me, laid on a terrific Big Gig with Olly Murs, The Wanted, Pixie Lott, Dion Bromfield, Eliza Doolittle, to name but a few.  We all trooped down and were overjoyed to find that our group were given 'ringside' seats!  What a thrill!

The Guides' Big Gig at Wembley Arena

More!

It was so wonderful at half-term to be able to go on a little holiday with Daddie and the Doggie!  Rolf found a perfect Haven holiday site with accessible accommodation on the south coast, close to our brothers Frank and Martin.  It was so relaxing and so refreshing that the girls could enjoy a bit of independence around the park.  The trip was a real boost to our energy levels and culminated in a night-stop in Windsor, complete with a trip along the Thames.  We stayed in accessible accommodation at a Best Western Hotel which also accepts doggies!  Great location and so fabulous to be able to walk in the park in the shadow of the castle.

Lexi's First Trip to the Seaside

Brighton Rocks

Cruising down the Thames

Who's driving?

Halloween was great fun this year with the usual howls of laughter.

Happy Halloween

Lady GaGa bobbing for apples

Rudyard Sailability was chosen by the Sanja Charity as beneficiary of their Hollywood/Bollywood Ball.  The founder, Pritpal Nagi and his wife Ruby hosted this glorious event and we all took the opportunity to wear traditional dress.  I don't think I have ever felt so glamourous and comfortable at the same time.  Rudyard Sailability is so grateful for the vital funds raised for the construction of the new building which really moved the project along.

Sanja Charity's Bollywood Ball

Sally's Handiwork

Christmas really starts to kick in once we have dug out the santa suits and run the Cheddleton Pudding Race.  It is always an atmospheric race which raises funds for cancer research.

Lexi's First Pudding Race

So much hard labour has taken place at Rudyard Lake with Volunteers, in spite of their own disabilities, donning high-viz, hard hats and boots to keep the project moving and on budget.  Hundreds of tons of spoil were moved from the site and tens of lorries of stone rumbled in for the foundations.  It was a moving moment when the steelwork went up and the building really took shape.  After six long years of battling for planning permission and funding we are determined that our boatstore will be completed and ready for the start of the new season in April.  That will certainly be a triumph over adversity and thanks to the tremendous support from so many hundreds of good hearted people. 

Rudyard Sailability's Building Takes Shape


This is another fund-raising event to swell the coffers of Rudyard Sailability which is well supported by all.


Sailability Santa and his little helpers

As Tilly made her preparations for the festive season she went into hospital for a spinal injection to reduce the pain in her tailbone.  It was a miraculous success that has caused a problem that she has been battling with for a few years, and just thought that she had to endure.  However, the injection was delivered under general anaesthetic and left Tilly with a chest infection to clear.  Just got over that when she was struck with a hideous vertigo attack!  May be Tilly aspirated during this attack and found herself battling yet another chest infection.  This meant Tilly missed a lot of Christmassy activities, but it was a great relief to have her well for the 'big day'.



It's beginning to look a little like Christmas



Lexi's first pawprints in the snow



Lexi looking after Tilly

 Tilly recovered enough to take part in the national breakfast television programme, Daybreak, which featured the launch of a Text Santa appeal for Children's hospices around the country.  It was immensely exciting to be part of live TV and the girls did us proud with their contribution.  

Gethin and the Griffiths Gels at Treetops

 As we rolled into Christmas, so Rolf's family began to arrive.  The best bit was having six month old twins, George and Evie, who completely stole all our hearts.

Christmas Morning 2011

 Rolf was a Christmas Angel this year and took care of all the shopping, cooking and present buying, (and wrapping).  He even ensured that Santa filled a stocking for all fourteen of his Christmas guests - he was sublime.  I have already received orders to book him out for next year, but there is an extra charge for the reindeer pinny option!

At least it's only once a year!

So that's it for now!  We have since welcomed in the New Year with the girls and Lexi, whilst watching the fireworks in London on the TV.  I did my yoga first thing, have now completed the blog and am about to indulge in a champagne cocktail - well, two out of three resolutions ain't bad!

Thank you to all who encourage me to write the blog and take time to post comments which I so appreciate.  I will try my best to keep on blogging in 2012.  In the meantime, from the Cheddleton Five, we wish you a simply glorious New Year, with all that you would wish for.