Wednesday, 9 January 2013

A Glance back at 2012

 It seems like a golden opportunity to take a visit to Blogsville and look back at some of the many highlights of 2012. 

2012 started well with national coverage in The Daily Express of Tilly's book, Tilly Smiles, which aims to show just what can be achieved, in spite of challenges, with just the right help and support.  The book went on sale on Amazon and all proceeds go to the Jennifer Trust for Spinal Muscular Atrophy.

January was thrilling with the girls celebrating their birthdays and receiving tickets to see JLS in concert.  However, little could have prepared them for the excitement of meeting One Direction thanks to the Charity Rays of Sunshine which arranges magical experiences to children living with disabilities.

Rays of Sunshine made my dream come true!
February half term started really well with a Caudwell Children Family Day out to Old Trafford Football Ground, home of Manchester United.  We were treated to a fantastic 'behind the scenes' tour and learnt how welcoming the Club is to fans who live with disabilities.  It's always great to meet up with other families who share so many similar experiences and it was also fabulous to meet up with Alex Winters again who is not only truly delightful, but a committed and hard working Ambassador for the Caudwell Children.

 Meeting Alex in 2011 at Caudwell Children's Butterfly Banquet

Candice and I also risked life and limb in sub-zero, arctic conditions at "Go Ape" in Buxton where we found ourselves with two friends clinging on to frozen ropes and swinging through the treetops.

Don't look down!
  It was quite terrifying, but also banal when I took a phone call from BBC Radio Stoke,at 150 feet whilst teetering on a tiny ledge around a tree, to share my feelings and experiences about the sad loss of Whitney Houston.

An unforgettable encounter with a fragile Superstar

However, half term ended with a bump when a trip with the girls to Telford Ice Rink ended up with me with a two broken bones in my leg and a dislocated foot!  Lots of extra hours for lovely Sally via Social Services and lots and lots of extra work for poor old Rolf!  Felt like a bit of a nightmare, but eased with lots of lifts from friends for a weekly four-hour visit to the Fracture Clinic! 

March saw the arrival of two lovely mademoiselles for Candice's French Exchange - just a little more work for Rolf to do the school run and chauffeur the girls around to the Trafford Centre, Blackpool, Bowling, the Theatre, etc. etc. whilst running our Bed and Breakfast, creating scrumptious meals for us all, and taking Lexi out for all her walks.  Who's the Daddy?

Candice and her French Exchange Partners
  I, meanwhile, was not allowed to weight bear and managed to avoid surgery, (thanks to the Doctor who manipulated my foot back into a perfection position in Telford) which was brilliant, and my healing time was miraculously short for such a nasty break.
At the beginning of April the girls and I took part in the BBC Radio Stoke and Radio 4's  Listening Project when we were recorded having a conversation which just happened to be about my being held hostage in Kuwait all those years ago.  A good cure for insomnia I don't doubt!
We spent the Easter holidays at a Haven holiday park which has wheelchair accessible caravans that accept doggies and a Mash and Barrel Bar/Restaurant that suit Dads!  It was a most interesting experience being a carer using a wheelchair, especially trying to scoot the wheelchair backwards across the sands whilst pushing Tilly in the 'all-terrainer'- not recommended if you're in a hurry!
Fortunately I was up and running again in time to be co-pilot on the mini-bus on Tilly's school trip to France in May.  The Head teacher had gallantly step in to take the wheel so that Tilly could be included, as the preferred coach company of many years experience covering the School's French trip did not have a wheelchair-accessible vehicle.  Just goes to show that 'where there's a will..'   
Reaching giddy heights in a French Cafe

The whole trip was a triumph beyond compare with Tilly so thrilled to be 'on the back seat', with her mates, in their own transport.  Trips were made to Mont St Michel, Granville, the Bayeux Tapestry and the war museum at Arromanches.  Tilly practised her french in shops, markets and cafes, and there were daily visits to the beach.  Tilly also shared a room with her friends and enjoyed all the hi-jinks in the dorm required of them!  Sally, Tilly's PA, came too so all of Tilly's personal care was managed beautifully.  I sincerely hope that the waggon-load of work required of the staff in the way of risk assessments for Tilly; the weeks of worrying and anxieties of the trip leaders and the personal commitment of the Head was believed to be worth it as Tilly had a fantastic time.

Paddling with friends dans la mer!

Whilst we were away in France, Candice was thrilled to be part of the ceremony to welcome the Olympic torch to Stoke on Trent as part of the Godiva Project.  The girls were fortunate enough to be part of this Cultural Olympiad Project led by the highly charismatic Zoe Scott. 

A golden opportunity to hold the Olympic Torch 

Candice showing her individuality through dance 

After opening the show dressed all dressed identically in hoodies with white masks, the dancers stripped off to reveal their own individuality. Candice emerged as a highly colourful and very beautiful ladybird. 

The beginning of June saw us girls and special friends going on tour to London to see the Rays of Sunshine annual concert with an unbelievable line up including JLS, Spellbound, Alexandra Burke, Conor Maynard, Stooshe, etc. 

 A chance meeting with Diversity on the way to the Rays of Sunshine Concert 
   We met up with other friends who live with SMA, and also managed to fit in a trip to the theatre to see Wicked and dinner at the highly unique Turkish Restaurant, Sarastros, in Covent Garden which boast live opera entertainment and an eye-popping trip to the Ladies!

 Ladies' Night at Sarastros, Covent Garden

After weeks of rehearsals after school in our individual groups led by the highly creative and motivating Zoe Scott, and then weekend rehearsals in Coventry with other community groups from around the Midlands, July saw the culmination of two year's hard preparation for the Godiva Awakes Project, part of the Cultural Olympiad.  We were thrilled to be able to have a week's 'sleepover' in a Travel Lodge in Coventry with our group to attend all the rehearsals, costume fittings and the actual performances. 

Not easy to drive in this mask! 
The weather was perfect and the audiences were terrific. The group first performed on the main square with huge overhead screens and the crowds seemed to really enjoy the transformation of the performers. It will brilliant to see Tilly and her fellow powerchair user being included so seamlessly and sensitively by Zoe and all concerned.

Tilly transformed into a beautiful butterfly 

Do you think I could fly? 

The next part of the project was to actually wake up a 30 feet high statue of Lady Godiva and present her with a Book of Intent that the groups had compiled for Lady Godiva over the months of preparation.   The cast was made up of Peeping Tom, dancers, stilt-walkers, aerial artists, a sign-language leader, a  hundred drummers, a hundred choristers, two hundred humming birds and of course, the most amazing 'walking' statue of Lady Godiva. 

One of the many rehearsals with the drummers

The drama took place just outside the ruins of the old Cathedral and the modern replacement Cathedral and took place at nightfall. Our group were the humming birds, and the costumes were fantastic, with much attention given to adapting Tilly's wings and making sure that there were ramps up to the stage.


The actual event was an astounding success and brought gasps of disbelief from all as Lady Godiva came to life and actually walked around the arena. The finale of fireworks was fantastic, and with Tilly stuck on centre stage unable to run and hide, has hopefully cured her of a chronic fear of such displays!
The next day the group took part in a three mile parade around Coventry.

Lady Godiva taking the lead

Amazingly, Lady Godiva then mounted a horse, powered by 100 cyclists and made her way over the next week to London to deliver our Book of Intent to the Lord Mayor of Walthamstow. Naturally, our dedicated little humming birds made their way down south to join in the parade. 

Carnival time! 

  Hard to sum up what incredible joys and memorable experiences we all had in this fantastic project.  All praise to Zoe Scott and the other organisers for pulling off this incredible feat - just feel so privileged to have been a part of it all.

Following on from last year's Stage Experience of Fame the girls were very keen to become further involved in drama and so have been attending a weekly theatre group at The Victoria Hall in Hanley.  Also in July, this work culminated in a production of The Last Resort at the theatre which we all enjoyed and further whetted their appetite to tread the boards! 

In August the girls took part in the 2012 Stage Experience of Footloose at the Regent Theatre which was another rewarding and exhilarating two week's of the summer holidays. 

Candice helping to open the show

Candice was thrilled to be offered a principal role, "Bickle" and Tilly was delighted to be part of the acting company.
Tilly as part of the choir in the Church scene 

Tilly and her fellow wheelchair user were allocated Dressing Room 1, with lights around the mirror and all the trimmings!  We realised during this experince that Tilly's amazing rm supports were ever more useful, so Tilly decided that they would become a permanent feature of her chair, rather than just popping them on and off when needed.  This has proved to be an excellent move with Tilly enjoying more independence every day and causing genuine fascination and appreciation from all who see her using them.

Just the finishing touches 

 As the performance was drawing to a close it became clear that Tilly's powerchair, after six year's of faithful service, being switched on at 0630 and working hard for Tilly throughout the day until 2100, was nearing the end of it's life.   The extra-ordinarily good news was that Caudwell Children were able to offer Tilly a new chair that would be ready for a very exciting day in Tilly's life.  To make the chair even more amazing local specialists, John Lagan and Leek Signs worked their magic on the bodywork to make it cooler than cool.   

Hot wheels thanks to

The curtain came down on the show, the chair arrived and so did the announcement that Tilly had been selected to help light the way to the Paralympic Games.  Tilly had been nominated by Caudwell Children and the Royal Yachting Association to carry out this very special honour.  Our hearts soared and then hopes were dashed as Tilly succumbed to an aggressive chest infection that look set to rule her out of carrying out her role as Torchbearer.  However, Tilly had other ideas and worked literally around the clock (being woken at midnight, 0300 and 0600) on secretion management making full use of her hyeck oscillator (shaker-maker), nebuliser, cough assist, suction unit, ventilator and that old Tilly determination to make sure she could take part in the Paralympic Torch Relay. 

 lighting the way

I often feel that nothing worth having comes easy and this was a perfect example of this.  I was reduced to a blubbering wreck at the sight of my little girl so proudly taking her part in such a magnificent event in her sparkly new powerchair.  Her own beam was so dazzling that it will stay with me forever.
It was back to school in September with a lovely reception for Anna Watkins, our own Gold Medallist who is from our local area.  Candice also had the privilege of meeting at her rowing Club which happens to be the one that Anna trained in.

 Anna sharing the glory

In October, once again, St Edward's Junior High School scaled great heights and jumped through all the necessary hoops to ensure that Tilly would be included in the Chasewater Outdoor Pursuits Camp.  Once again, lovely Sally came too, to help with personal care, etc, and a brilliant time was had by all.

Tilly on the Aiming High Adapted Climbing Wall 

The staff at the centre had gone the extra mile to ensure that Tilly could participate in all the activities, including a parascending harness for climbing; a finger-tip controlled bow for Archery and an adapted tandem  (which we took along that was funded by Caverswall Gun Club)

The louder you scream, the faster we go!

 On of the most exciting days was when we went kayaking.  Tilly was lifted into the front of canoe and settled in comfortably with a bean bag.  An instructor took the helm and steered Tilly through all the turns and twists of the river.

 Rigged up and ready to go!

I travelled with Tilly down river, and then got out at the rapids and so that Tilly could enjoy the full force the water splashing in her face and the thrill of feeling that she could fall out at any moment!

Tilly bringing up the rear 

Every moment was action-packed, and every attention to detail was given to ensure that Tilly's needs were more than met whether it was hurtling around the Lake on the safety boat, or taking part in cooking around the camp fire.  Naturally, the best bit for Tilly was sleeping in the dorm with all her mates, as the Centre had deconstructed a set of bunks so that Tilly could be part of the gang.  The Camp was a terrific success in so many ways thanks to the dedication and commitment of all those so determined that Tilly would have fun.

 November was a very exciting month which started with Caudwell Children's Winter Ball.  It was made all the special because Tilly and I were lucky enough to stay at The Waldorf Hilton, where we were expertly looked after by the Head Concierge, Daniel Frith.  We felt like we'd entered a new dimension as we alighted from a London Bus and found ourselves taking a light lunch in the Executive Lounge.  Our room was sumptuous and elegant, with huge picture windows looking out onto the Strand.  As we were getting ready, there was a delivery of fruit and chocolates - I was close to explodificating!

A little refreshment in the Executive Lounge 

Tilly and I strolled through the busy commuter streets in our floaty evening numbers and continued our reverie as we entered the glamorous setting, along the embankment of the River Thames, for the Caudwell Children Winter Ball.  

You shall go to the Ball! 

 It is such a privilege to be invited to attend such glittering events and to share a magical evening with John Caudwell and his family and meet such lovely people who support Caudwell Children, and give so much to further the aims of the Charity.  This glamorous winter ball was sparkling with festive fun, topped with a set by Bryan Ferry who was as stylish and as classy as ever.  Tilly and Trudi Beswick, the Charity's CEO, got the dance floor moving, and to my astonishment, Tilly was still 'cutting a groove' when the lights came up at 2.00 am!  Tilly twirled, and beamed, weaving in and out of her fellow groovers for hour after hour.  I shall never forget the last number, with the strains of "I am Titanium" filling the room when the entire dance floor and band turned to Tilly and sang to her.  Who'd have thought a little soul could inspire such an outpouring of joy?  It was quite overwhelming.

All smiles with Jonathan Wilkes and Aldo Zilli 

Still high on the memories of the Ball, with lots of stories for the nurses, Tilly went in to have her spinal rods extended; her hip manipulated and a couple of anaesthetic/steroid injections to try to control the pain in her hip and spine.  Tilly was very brave and cooperative as always, but surgery certainly does not get any easier the more you do it.  As Tilly gets older it seems more challenging as Tilly is more than aware of the risks associated with having a general anaesthetic with her compromised respiratory system.  However, Tilly was expertly looked after and we bounced out of there the next morning much to the amazement of all around (including me)!

During 2012 work has gone on apace on the new accessible boathouse at Rudyard Sailability, a Charity which offers sailing and water based experiences to those who live with disability. After years of struggling to obtain planning permission and in spite of working in sub-zero conditions, relentless rain and hideous, welly-grabbing mud we have almost reached our goal.  We have achieved £450K of build and only spent £200K thanks to the input of donations (many in materials or services) from heavenly tradesmen, generous companies, outstanding individuals and valiant volunteers.  With just £50K of work needed on the interior to fit out the accessible facilities, we are hopefully on track to 'cut the ribbon' in April and see people living with disabilities back sailing on the Lake for the 2013 season. I know Tilly is just counting the days till she's back at the tiller!

 So close to being out of her chair 'with the wind in her hair'

In 2011, it was the Sanja Charity's Bollywood/Hollywood Ball that saved the day and donated the funds needed for the steel frame of the Rudyard Sailability boathouse.  This timely donation kept the  project on track, as it got the building 'out of the ground', and out of the rising water levels of the lake.

In November 2012, to our great delight, the Sanja Charity chose Caudwell Children as beneficiaries of the now legendary Bollywood/Hollywood Ball.

Top Headline Acts come to Staffordshire

Just days after her surgery Tilly was thrilled to be invited to the Sanja Charity Ball, and took great delight in dressing in a sari.  The founders of the Charity, Pritpal and Ruby were glittering, gracious hosts; Tommy Sandhu from the BBC Asian Network was a first-class compare and Mumzy Stranger was a hot headline act.  All proceeds from this event were to go to providing wheelchairs for children in North Staffordshire, so Tilly was honoured to be asked to say a few words about how life-changing her chair is.  The evening was a roaring success which means that Caudwell Children will be able to reach out to more local children thanks to the Sanja Charity.

Tilly getting down with  Mumzy

 As December dawned Tilly was chuffed to invited along to the opening of the Donna Louise Trust's new mega Charity Shop in Stoke  Tilly was delighted to meet  Actress, Rachel Shenton who was so interested in the Trust and so friendly that Tilly was able to tell her all about the great fun she has when she goes for weekend respite at Treetops, the Donna Louise Children's hospice.


Tilly was further delighted to discover that Ollie Marland was singing live for the occasion. He was a real Prince Charming who sang like an Angel and made a huge impression on all there.  Ollie was also kind enough to write his first Christmas cards to two special young ladies, Candice and Tilly - cards that will definitely not be going to be recycled!

 Tilly meeting a  future megastar

 Our beautiful Lexi continues to fill our hearts with joy as she settles ever more into the Griffiths' way of life.  No more is she sinking her razor sharp puppy teeth into anything she can reach or jump up to, no more midnight patrols around the garden in my dressing gown and wellies with a pocket full of poo-bags.  Princess Alexis Kennedy is now nearly grown up and sits patiently at Tilly's wheels, just waiting to loved, patted, groomed and adored by anyone who feels they just can't resist her charms.  Our daily walks are therapeutic for mind and body, albeit it in the persistent rain and muddy fields, it is just so uplifting to see Lexi bounding after the ball, and smiling that Golden Retriever Grin.

 Just dreaming of something 'not pink' from Santa

We were blessed with a wonderful, healthy Christmastime, unlike so many of our family and friends who got the dreaded lurgy.  Rolf created mouth-watering festive food; we went to the Crib Service; we exchanged wonderful gifts; we played games; saw family and friends; watched TV and of course had a few drinkies.  What more could we ask?  Even Lexi's dreams came true! 

A new bed that's not pink!

Us ladies hit the shops after Christmas and Tilly was thrilled to find a new pair of shoes to wear on high days and holidays when she is not encased in foot splints!  Shoes are her ultimate passion!

 Stepping out in style for 2013

Looking back, 2012 was certainly an eventful and exciting year thanks to  the determination, enthusiasm and belief of those supporting and enabling us to fulfil our dreams.  Here's to the dream-makers, and the promise of more enchantment and magic to share as the 2013 unfolds.
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bonnie harris said...

wow what a fantastic year... Im sure all at caudwell children have long thought of Tilly every time they hear David Guetta, 'Titanium'. Such meaningful lyrics, it'sthe kind of song that you cannot POSSIBLY stay in a bad mood while listening to it.... one of my absolute faves of 2012... very reminiscent of my favourite nightclub.... aww, ur little girl is growing up! Didnt know about the new chair either... thought the zebra look was the product of yet another respray... 'Happy new chair Tilly', and 'happy 2013 to u all!!!

Denise Deakin said...

Wow ! Loved reading your updates blog :-) Thankyou xx