Mice, Ice and Magic (Not forgetting the dolphins)

Anxiously waiting for take-off

With his eye on an increasingly difficult weather situation Rolf took the decision to make a break for Gatwick a day early in a bid to beat the snow.  With the motorway closing behind us, and the airport closing in front of us, we crawled through the swirling snow in trepidation to catch our plane to Florida.  The situation looked dire with all aircraft grounded and mounting crowds putting pressure all amenities.  We were so fortunate to have a hotel as many people were literally sleeping on the floor.  Rolf and I could hardly breathe as we envisaged our holiday that Rolf had been planning all year,  being spent in an airport terminal.


Operating Instructions for Ground Crew attached to Tilly's Chair

Tensions were high with hundreds of stressful, personal dramas being played out all around us, with the snow showing no signs of stopping.  After two days there came a break in the weather which presented the smallest window of opportunity.  With expert care from the highly pressurised ground staff at Gatwick, we managed to negotiate 'broken' lifts and escalators and make our way to the departure lounge, (with four suitcases and all of Tilly's respiratory machines in our hand-luggage), by being led through a labyrinth of corridors to a service lift.  Just making the gate on time,  Rolf dismantled Tilly's chair and wrapped it in cling film, and then, miraculously, against the odds, we found ourselves at 38,000 feet winging our way to Orlando.  A gin and tonic has rarely tasted so good!


We made it

We had transferred Tilly to her seat from the aircraft aisle wheelchair, using the 'emergency transfer sling' which left the ground crew open-mouthed in amazement at such a brilliant device.  We supported Tilly in her seat with our coats, blankets and pillows and settled down to be entertained by the fabulous 'in-flight' entertainment system.  Interestingly, we were not disturbed at all during the flight by the British Airways Cabin Crew with offers of any assistance.  The lack of on board customer service and the sad decline in the catering product since our days of flying for BA didn't bother us one jot as we were just so relieved to be on our way.


After negotiating our way through Orlando airport's rather complex arrival system which involves being finger-printed, collecting and re-depositing the baggage and a short train ride, it was heaven to be warmly greeted by a delightful gentleman called Robert who delivered our wheelchair accessible car, complete with 'sat-nav' to the kerbside. 




 Rolf mastered the driving immediately, and the car was perfect for all of our needs, but sadly, even with the sat-nav, I failed miserably to master the American highways which led to many an unintended detour and the occasional frank discussion between driver and navigator!  Plus ca change!  I was also surprised by the volume of traffic on the roads as we did spend many an hour playing "I Spy" in long delays on the way to and from our activities.



Welcome Aboard the Griffiths-mobile

The wheelchair-accessible villa more than exceeded our expectations http://www.florida-orlando-villa.com/.  It was perfectly located; tastefully decorated, fully-equipped and had a swimming pool, hot-tub and a pool hoist!  It also came with the support of Sven, a very helpful property manager, who attended to all our queries, but did have to break the news that the pool hoist was 'kaput'!  Never daunted, with emergency transfer hoist in tow, we found ourselves toasting our safe arrival in spite of any technical difficulties.



This is the life!

One of the first jobs, after filling the gigantic fridge with holiday goodies, beer and margaritas, was to put up the Christmas Tree that we found in the garage and 'trim up' for the season, which did feel strange with outside temperatures of 27 degrees,  We didn't feel odd for long, however, as the temperature fluctuated wildly from red hot to sometimes leaving a ground frost and ice on the top of the pool cover.  The coldest December on record according to Sven!  Hey! Hoh!  Beats getting sun-burned I suppose!




Ho! Ho! Ho!

One of the prime destinations of our trip was to Hogwarts at Universal's Islands of Adventure.  We are huge fans of Harry Potter as Candice has been reading the books to Tilly and I and has taken us as far as The Goblet of Fire thus far - what a Star!  We were shocked by the huge numbers of fellow devotees pouring into Hogsmead, but felt so thrilled to find ourselves wandering through the streets of Diagon Ally, surrounded by so many familiar JK Rowling inventions.  In spite of the crowds, and huge queues, we were eventually made it into the Castle which was brilliant.  Tilly was able to do the Castle tour, and then waited with one of us whilst the rest of us went on the roller coaster.  Daddie, Candice and I all agreed that it was absolutely mind-blowing!  Certainly, one of the most amazing rides that we have ever been on.  Awesome!  But be warned, it is so fantastic that the park had reached its capacity of 50,000 people and was closed by 1100 on some days!




 Spinal surgery and vertigo aside, Tilly is not a great fan of the scary rides, so Animal Kingdom is one of her favourite parks where she feels 'up close and personal' with her beloved Disney Characters.  Candice and I did queue for 90 minutes for a two minute roller coaster ride here whilst Daddie and Tilly enjoyed the parade and meeting the stars of the show.  I must confess that I found it quite surprising and most endearing that, in spite of the fact that Tilly seems so grown-up most of the time, the highlight of any day was meeting up with her favourite characters.  They all seemed so delighted to meet Tilly too, and I hope they realised just how much their attention meant to her. 



 On one of the warmer days before Christmas we braved Blizzard Beach water park, complete with 55 mph hour, free-fall, death-drop, water-chutes where we joked "with slides like that, who needs enemas!".  It was so inspired an idea to turn a 'ski-resort' into a water-resort complete with gondolas, toboggan races and the luge.  We thought it was brilliant, and the staff went out of their way to accommodate Tilly on the various attractions by providing a water-proof wheelchair and offering their assistance wherever possible.  Tilly did have a ride up to the summit of one of the highest peaks on the wheelchair-accessible gondola, but had more sense than to access the bob-sleigh down again.  With the help of the emergency access sling Tilly spent most of her time luxuriating with Daddie in the wave pool, whilst Candice and I terrified ourselves on the pistes.

Daddie and the 'lesser-spotted' Speedos!

It felt so wonderful to be outside eating lunch in our swimsuits, but it was also wonderful to jump back into our warm clothes as the unseasonal chilly winds blew in.  The girls also noted that Daddie was sporting a pair of 'Speedo' trunks, circa 1989, so  they kindly added another item to their list to Santa for an alternative item of  Daddy swimwear!     I have to add how mighty glad I am that I drew the long straw and took to the slides and was not captured in my swimsuit!

The Griffiths' Camp

Poor Tilly had a very rough couple of days following the water park and was confined to quarters with a horrible bout of tummy troubles - the suction unit was in constant demand and our hearts sank at the thought that this might be the start of something sinister.  All of a sudden we felt a very vulnerable to be such a long way away from Tilly's Respiratory Specialist and GP who had both taken great care to nurse Tilly through a nasty chest infection just before this trip.  It was a tense couple of days.  Rolf was in such a flim-flam that when he took Candice out to Seaworld and having paid for parking he discovered that he'd gone without the entrance tickets!  After this 'Hamlet cigar' moment they went off to Universal Studios, paid for some more parking, and tried to make sure that Candice continued to get the most out of her holiday.  It was such a relief when our prayers were answered and Tilly's colour returned and she showed signs of improvement.



I've got my holiday buddy back!

We joined the other 99, 996 visitors to Disney's Magic Kingdom on Christmas Eve, which, although was challenge to get through the crowds with Tilly's powerchair, lived up to its name and was magical.  Specially trained staff 'found' us in the masses and led us to the specialist zone designated for wheelchair users to watch the Christmas Parade.  It was breath-takingly glorious, and quite choking as it seemed that each and every character waved and blew kisses to Tilly, whose eyes shone in wonder and delight.  Rolf and I were completely 'finished' when Santa bent towards Tilly from high up on his sleigh and called "Happy Christmas Princess!" to Tilly.  We blubbed for the rest of the day.



Minnie Magic



I believe.......

With all the important jobs done: cookies and whiskey for Santa (couldn't find any mince pies) and water and carrot for the reindeer, the Griffiths' clan flopped into bed full of anticipation of a Christmas Day of a lifetime.  It was such a relief to see in the morning that Santa hadn't forgotten us and had filled our stockings with left some special Christmas holiday presents.



A sunny Christmas morn!

Blessed with warm weather and sunshine and kitted out in new bathing attire from Santa, we made our way for breakfast at Discovery Cove, the beginning of one of the most fabulous days of my life.  We entered an oasis of tropical calm, far, far from the madding crowds.  The serenity and beauty of the 'park' was so therapeutic, and the customer service beyond compare.  On the day of Tilly's diagnosis, way back in the mists of time, I promised that we would one day swim with dolphins.




A dream come true



Beyond words

A rare and beautiful smile

I hope that these few photographs of our encounter with the dolphins at Discovery Cove give some insight into the magic of the event, given that you have to accept that these beautiful creatures are not free to swim in the wild.

The whole experience is quite exceptional and although it does cost as arm and a leg, there is no parking fee; the food is delicious, plentiful and included in the price; free beer and snacks all day and a definite Caribbean atmoshpere with a live steel band in the background,



Beach buggy on silver sands

The range of activities included snorkeling through a coral reef, a lazy river through a tropical bird aviary, and feeding the rays, which was actually quite scary.  All equipment and wet-suits are provided, and the dolphin encounter is filmed and photographed by professionals for an additional charge.  It would be a strong man that could actually manage not to purchase such souvenirs, so we coughed up and vowed to live on nachos for the rest of the holiday!



Daddie is not sure about this

The only reservation that we have, is that there was just the one wheelchair-accessible changing/shower room which naturally meant rather a delay at the end of the day.  We did have the opportunity to pass this on to the staff who seemed very keen to make everything just perfect for all visitors.

Daddie was amazing and took the time and trouble to create a scrumptious turkey dinner, with all the trimmings, (including home-made cranberry sauce) for us on Christmas evening.  However, all that sun, fun and activity proved too much for Tilly who fell fast asleep during the feast.



The Kennedy Space Centre was an awesome place to visit because it was pretty much 'real', yet still 'out of this world.  The tours are fascinating, and a lot of the exhibits and adventures are very much a part of our history and of great interest to the girls.


Preparing to land

We went out to the viewing gallery for the launch pads for the Space Shuttle programme,which was so absorbing, but with such strong cross winds that Tilly's hand was actually blown off her controls.



Glad we're not in with the dolphins today!

We learnt that that space exploration had resulted in many great discoveries with useful applications here on Earth.  However, you many have noticed from the photos that Tilly took her Neater Arm Support everywhere we went and they caused a sensation at every turn, even in the Kennedy Space Centre.


It has to be said that almost everywhere we went Tilly's needs were addressed with genuine care and attention - all except for Disney's Hollywood Studios.  Not sure whether all the staff had had a late night on the egg-nog, but the vast majority showed little understanding of a little girl in a packed park with sub-zero temperatures.  "Susan" barked at Tilly, 'The line's closed' when she joined a queue of six children to meet Minnie Mouse, without the slightest sprinkle of Disney politesse and magic.  Fortunately, Tilly met up with Mickey Mouse later who was charming and delightful, and Tilly soon forgot her disappointment.



Magical Mickey

We did make a point of sharing our disappointments with the Guest Services Representative on departure, who duly wrote a few notes on a scrap of paper and gave us the impression that it would be jettisoned into the waste-paper basket just as soon as we were out of the door.  Never mind, it made us feel better and, in any case, we actually left the park with an over-riding sense of awe at the most amazing light show in the Avenue of Americas, complete with fake snow and Bing Crosby's "I dreaming of a White Christmas" in the air.



Disney pulls it off!

With the theme parks reaching capacity most days it was simply heaven to have a day 'away from it all' in a natural setting at Boggy Creek to enjoy a simple picnic and Daddie's much longed-for Air Boat ride.  Once again, Tilly's 'emergency transfer sling' came into its own and we all climbed aboard for the ride of our lives.



Pit Stop

It was fantastic!  We literally took off and flew inches from the surface of the shallow reed beds at breath-taking speeds.  It was so exhilarating and so wonderful to all be together to enjoy such a unique experience.



For just one day, there were no crowds,  no cast members, no characters, no animatronics, no music, no parades, no lights, no barriers - just the rush of adrenalin and the force of the wind as we roared over the wide, wild open waterscape, filled with 'gators and crocs and a myriad of different birds.  Daddie was in his element, and we all agreed that it was a real BLAST!


So very cool!

We returned to the parks and enjoyed a day at Universal Studios where Donkey from Shrek had us in pleats with his ad-lib remarks to his visitors and we were treated to Macy's Christmas Parade.  Before going home to yet another one of Daddie's wonderful culinary creations, Candice and I had a ride on the rocking roller coaster, a death-defying, vertical take off, that loops the loop forwards and back, spirals and spins, complete with a classic track of your choice.  I chose ZZ Topp to accompany me on this wicked ride, and I expect my heart rate to return to normal and my legs to stop shaking any day now!




The only way is up!

We once again decided to join the other 99,996 people at Magic Kingdom on New Year's Eve so that Tilly could see her favourite Disney Characters again.  Tilly beamed as she met up with the Princesses, the Fairies and Mickey and Minnie, never minding how long she had to wait in line.  Occasionally, a Cast Member would take Tilly on a quicker route, but generally, all of the entrances were wheelchair accessible.



Tilly loves these mices to pieces

We were coping quite well with the throngs of folk at Magic Kingdom on 31st December 2010 until the staff started handing out 'blowers' so that the masses could trumpet in the New Year!  At this rather noisy moment we decided to watch one last parade and head home for a champagne and seafood celebration supper.

True to style, Daddie cooked up an glorious meal and the girls looked ravishing as befitted this very special occasion.  We toasted each other and absent friends as we counted down to the New Year.



Ready for the New Year!

We managed to squeeze in a visit to Seaworld and were amazed and delighted at how very quiet it was compared to the other parks.   It seems that the footfall has drastically reduced since the tragic death of one of the staff during a show.  Rolf was literally running into all the open spaces and just luxuriating in being able to move so freely!



Tilly would make a new figurehead

   Even the new roller coaster has not enticed the crowds back to this Park as yet, so Candice was able to hop on and off them whilst Tilly went around and enjoyed the various attractions on offer.

All too soon it was time to pack up the bags, load the car and aim for the airport.  We thought we'd get lost 'just one more time with feeling' and found ourselves with just minutes to spare to deliver our car back to the very delightful Robert who was waiting, just as he had said he would be.

The Ground Crew at Orlando were super-helpful and the Dispatcher of the aircraft who looks after the passengers using wheelchairs took all the details of Tilly's 'emergency transfer sling' as he had never seen anything so good in all his years of experience!

We settled in for the night flight back to Gatwick and were once again studiously ignored by the Air Cabin Crew.  The aircraft landed in good time and we made it back to the airport hotel for a snooze before a special reunion with friends that I'd met over thirty years ago.

The relief for Rolf seemed palpable.  The most amazing trip that he'd worked for and planned for so intensely over the last year had come to an close and he'd achieved all that he dared hope for.  In spite of the challenges, all his hard work had paid off, and he gave us all a holiday that we will treasure forever.




Mission Accomplished!    

Rolf mountaineered us back up the motorways to Staffordshire in a very quiet car.  We all were on that 'other planet' counting our blessings for such a wonderful holiday and safe travel; lost in dreams and memories of the land of mice and magic.




WHEN THE SAINTS COME SKATING IN..........

I have been hopelessly snowed under and unable to make a visit to Blogsville. I have felt like Bambi on ice, struggling to keep upright on such a slippery surface.

However, it has also been an uplifting time when I have been inspired on so many occasions by the actions of others. It started with the annual ‘Suction Training’ at Tilly’s School, when so many of the staff took the time to come along and keep up to date with Tilly’s respiratory needs. Brilliant!

I always feel quite elated when I go along to the Blood Donors’ session and see all the folk who turn out in the cold and dark to give blood. I didn’t feel quite to buoyant, however, on my walk home when I was pursued by a malevolent motorist who eventually mounted the pavement and scared me half to death. I will make sure that I make an appointment during daylight hours next time!

There has been great building works going on at Rudyard Lake in an effort to build an accessible boat store to support the activities of Rudyard Sailability. I have been overwhelmed by the generosity of the contractors, supporters and volunteers who have pitched out in the snow and arctic conditions to keep the project moving forward. Poor Dennis, the coordinator, says that he is losing the will to live and that the project is jinxed as every day there is yet another unforeseen problem, but so far there have been heroes and saviours stepping forward to help out. God Bless Them All!

I was very pleased to be invited along to the meeting between Karen Bradley, the Conservative MP for Staffordshire Moorlands, and Trudi Beswick, CEO, Caudwell Children. Karen revealed that it made a great change to have a Charity seeking new ways of offering practical support to families with children with disabilities, rather than just lobbying for change. Karen seemed very happy with all that she heard and saw at Caudwell Children and went away saying that she would do her best to secure a meeting in Westminster. Watch this space!

The girls helped out at the Church Christmas Fair selling beautifully decorated ‘boxes of love’. They managed to sell all their consignment to many happy shoppers, except for one unhappy family who said that their box was empty. The girls explained that it was up to the purchaser to fill it with love, but they were not impressed with the concept until they received their £1 back. Interesting that love needs to be something that you can see or touch for some people.

We had our usual Griffiths’ “Thanksgiving” with a delicious turkey dinner and a viewing of Trains, Planes and Automobiles, with John Candy and Steve Martin. The girls saw it for the first time and they too were reduced to tears of joy and sadness from start to finish. We did press the ‘mute’ button for the expletive-filled car rental scene, but Steve Martin’s enunciation and the girls’ ability to lip read made it a futile gesture.

There has been the usual round of School Governors’ meetings which are now set against an uncertain background with an unknown future in the wake of the latest Government changes in Education. I am infinitely relieved and so impressed with St Edwards Junior High School for all the adaptations that they have made to include students using wheelchairs. I fear that these expensive alterations would not be possible in the current climate.

Rudyard Sailability cruised into Ipstones Evening Christmas market, an annual fundraising event and highlight of the seasonal calendar. Our valiant volunteers spent all afternoon in sub-zero temperatures setting up our stall and then we trooped along rugged up from head to toe to join in the fun. It was a festive evening, and quite successful, but boy oh boy was it cold! Tilly’s little fingers were frozen solid and she had to retreat into the Church Hall to defrost.

The Christmas theme continued with Rudyard Sailability’s Santa’s Grotto, a new initiative by one of our Trustees, Anne Morris. It was wonderful. Santa was perfect and Tilly so enjoyed her role as the big man’s helper. It was quite poignant really as it seems like only yesterday that Tilly was wide-eyed with wonder at Santa herself. Candice and I spent the session wrapping up gifts for Santa’s sack. This session has been repeated with Bonnie helping out for the entire four hours and so far the Charity has racked up £350 which is marvellous. We have a selection of willing volunteers to step into the red suit which is fantastic. What would we do without such magnificent support?

The Griffiths’ Ladies took part in the Annual Cheddleton Pudding Race for Cancer Research. It includes a very challenging two mile ‘Fun Run’ in which we have taken part over the past ten years in various guises and using a variety of different modes of transport from prams to push bikes to powerchair. In one event I actually felt like the pudding as I was well into my pregnancy with Tilly! This year Candice sped off at great speed and clocked up a PB, and Tilly donned her Snow Princess outfit and also made it in record time with Mummy Christmas hot on her wheels! It certainly the most picturesque of races with snow-clad fields and frozen hedgerows, but boy oh boy, it was cold. Once again Tilly’s little fingers became almost immobile in the arctic conditions and we were glad that we took along a hot water bottle to keep her going.

Tilly and her two friends spent hours practising singing and dancing to Miley Cyrus’ “The Climb” for a talent show at Guides. I was so impressed at their devotion to the task and thrilled to hear that they had won first prize! Tilly has since entered a Year 6 Talent Show audition at school and is eagerly waiting to hear if she has made it through to the sing-offs!

We had a very special Church Service, attended by the Bishop of Lichfield, for the Centenary of the Cheddleton Branch of the Mothers’ Union. This was a lovely occasion followed by wine and cake in Church and a delicious buffet lunch in the Community Centre afterwards. I managed to rustle up another Volunteer Santa during the festivities so that was a bonus on such a special occasion.

A definite highlight of the past few weeks was being voted onto the Board of Trustees for the Caudwell Children. In swirling snow, Tilly, Laura and I mountaineered our way over to John Caudwell’s office so that I could attend my first meeting in my official capacity. It is an incredible honour to be invited to take on this role and I am immensely excited to see how I can help shape the future of a Charity that means so very much to us. The Caudwell Children has magically transformed so many families in so many ways and I would love to think that I could help continue to create magic for others.

Tilly, Laura and I left the giddy heights of the Board Room and made our way anxiously across the frozen landscape and intricate network of blizzardy motorways to get to Birmingham Children’s Hospital. We did the “Hail Mary, Full of Grace, Please find us a parking space” prayer and true to form and just like a little miracle, there was a parking space right outside the door. The doctors tried in vain to gain access to Tilly’s vein to infuse the bone-strengthening drug ‘zolidronate’, but it was not to be on this occasion. Tilly was remarkably brave and coped with the anxiety much better than in the past which is a credit to the work of Tilly’s Psychologist, Dr Ruth. Needless to say, I was still a gibbering, sweaty, highly emotional wreck!

We then went on to X-Ray where Tilly had a scan to check on her bone density and to see if all her efforts have been worthwhile. We were lucky to have got an earlier appointment and were much relieved to be heading back up the dark and snowy motorway to Staffordshire before it got really busy in the rush hour. Following the jubilation of being made a Trustee, the anticipation of Tilly’s infusion and the anxiety of travelling, my sweet vermouth on ice with a slice of lime has never tasted so good!

As it turned out, it was probably just as well that Tilly was unable to have the medication as the next day saw the onset of yet another cold. The school was closed anyway, so we spent the next couple of days staying cosy and getting the house ready for the Christmas visit of our beloved Nana, Auntie Chris (my beautiful big sister) and Uncle Dave. It was pure joy to see Tilly, thanks once again to the wonders of her amazing powerchair and arm support, decorating the tree and wrapping her presents. The difference that the right piece of equipment can make to a life never ceases to amaze me.

The family visit was glorious; Chris cracked a bottle of Champagne and we shared our presents. Rolf treated us to the most delicious traditional Christmas fayre, including Christmas crackers and a flaming Christmas pudding! Dave was in charge of board games and the girls entertained us with charades, piano playing, and ballet performances. The visit included a Griffiths Christmas tradition of watching Ross Kemp’s ‘Scrooge’ and we even had a visit from my lovely Daddy’s sister, Auntie Mary and Cousin Jean and husband Larry – perfection! We’ve always said that Christmas was a ‘moveable feast’.

Tilly had a scan this week to check on the length of her legs following her surgery to address her leg length discrepancy. The hardest part of the process was the journey there in dense freezing fog! We don’t go far without sleeping bags, shovel, and emergency supplies in the car.

We then stopped off at Treetops, the Donna Louise Trust’s hospice, to show Chris and Dave around. They were bowled over with how warm, welcoming and homely it is and can quite see why we all rave so much about belonging there.

It was great to get Tilly back into school again. I must say that she did look very smart in her new military-style cape, only £6.00 from Primark, and so easy to get on and off. It’s just so pleasing when fashionable items are also accessible. She’s also thrilled with Primark’s £6 khaki leather finger-less gloves that might just keep her warm whilst she feels cool!

Whilst Tilly was at school I joined a band of very jolly Caudwell Volunteers for a Christmas wrapping service for a donation to the Charity. Many lovely people stopped by to donate even though they didn’t have gifts to wrap which was very heart-warming.



Just one of the Saints of the Season......

 It really has been a time filled with amazing people, paid and unpaid, going out of their way, in spite of perilous and treacherous conditions, to serve others. I believe that all of them are heroes and it’s just wonderful to have the opportunity to commit to print how wonderful they are.

Growing Pains

I popped along to the Caudwell Children’s offices and was amazed at what I saw. The Applications’ Department was being manned expertly by five amazing Volunteers. The Managers had been called away unexpectedly for at least a week, and this team of willing helpers all stepped in together, upping their hours, to make sure that they kept the operation running. This selfless act meant that families working their way through the system would not be too inconvenienced at this unexpected loss of office staff. What stars!

Steve from the Charity drew my attention to some photos of Tilly taken during her recent “Go for it!” family fun day. Tilly is still talking about it and is so looking forward to getting another turn of such great activities such as Cheerleading, Boccia, Curling and Wheelchair football. Bring it on!

We enjoyed a visit from Rolf’s brother and wife – Uncle Frank and Auntie Pat – and Rolf treated us to some gastronomic delights whilst we reminisced over the amazing African Adventure that they had made possible for us whilst working overseas. I still marvel at the fact that we really were there, under Mount Kilimanjaro with all our attendant needs, and naturally, we could never have managed it without their support.

The Special Matters coffee morning was well attended and we were treated to a visit from Amanda from the Caudwell Children. It seems that there is a little pot of funding that needs spending on activities for children with disabilities so this seems like a golden opportunity for both organisations to work together. It’s wonderful that the supported ‘family day out’ is so valued by such agencies, as they certainly mean the world to families such as ours. Without such support there are many who would never get to the pantomime, theme parks, museums or the seaside, as the logistics, expense and stress factors would make it out of the question.

I also took the opportunity of sharing with everyone the success and joy that we are enjoying with the 'Emergency Transfer Sling' from http://www.movement2.co.uk/ which featured in the last Blog.  It was almost heartbreaking to see so many of the carers falling on such information, wondering where such equipment had been all their lives.  Just because our children grow it does not mean that they no longer wish to leave their wheelchairs to sit on the beach, or on a funfair ride, where specialist moving gear is not in place.  I think this sling is a godsend and has already transformed Tilly's swimming session.

Tilly had so much fun running the ‘Play Your Cards Right’ game with her best friend Rebecca at the School Christmas Fair. The best bit was the banter that she had with the customers as it gave her an opportunity to chat to other pupils that she would never normally engage with. The worst bit, however, was that “it was the first time that someone has ever been mean to me”, as one young punter thought it good sport to make fun of Tilly’s voice. I’d given Tilly the independence to run the stall without me, but that came at a cost of not being there to protect and defend her. I guess that is what ‘growing up’ entails, but it did make me sad, a sort of ‘end of innocence ‘moment, that there are people out there who would like to hurt her. The young person in question will be dealt with by the school, and I will continue to think of way to enrich the quality of Tilly’s rather ‘thin’ voice caused, no doubt, by muscle weakness in her throat?

I got lucky on the raffle and won six months’ membership of the local gym, and as much as I could really do with such a prize, in reality I know that it would be wasted on me. I had great pleasure, however, in passing it on to a very special friend who is able to make the most of it, proving that it is really much better to give rather than to receive as the 'feel-good factor' was ten times better than hours on the treadmill!

Whilst Candice was away at a regatta with the local Rowing Club, Tilly represented the Guides at the Remembrance Service at Church. It was a highly emotional gathering, made all the more poignant with a Bugler playing the Last Post and Reveille. Outside in the foggy November morning, the Bugler played once more, and those emotive words rang out, “At the going down of the sun and in the morning, we shall remember them.” Tilly joined others and laid a wreath at the Memorial. Like most present, I choked back tears. Tilly later revealed that she too had been moved to tears.

I think my little girl is growing up.

The Sky's the Limit

The 0500 alarm clock signalled the return to school routines following a busy half-term holiday. It is very black and quite chilly at this time of day, but my darling Mum has imparted the wisdom that you only need to get up the once, and this notion seems to help (a bit)!

Tilly seems to be over the chest infection that she picked up over the holidays and has finally finished the anti-biotics – the second lot already this season. However, I have noticed that Tilly seems actually at more risk of a choke towards the end of a cold, when I think that ‘we’re over the worst’. We’ve definitely had a few dodgy chokes and one serious aspiration when we’ve thought that Tilly was on the mend. At this point the secretions are particularly thick and sticky, and can present a problem when least expected. At least when Tilly is in full swing of an infection I’m ‘on the case’, suction unit at the ready and in almost constant use. Perhaps there is a false sense of security that develops that needs addressing?

Tilly is now into her winter respiratory routine which includes a daily dose of preventative anti-biotic, and a daily wobble on her “shaker-maker” or Hayek Oscillator which helps keep her chest as clear as possible. It is all very busy and sometimes rather stressful as we race against the clock, but Candice is a wonderful help, and is also reading Harry Potter to us which does bring about a sense of calm. I am hoping to use some of Tilly’s Direct Payments to have some help in the mornings which will certainly take the pressure off us all, and will hopefully buy enough time to get Tilly up on her feet in her standing frame again. I carry an enormous burden of guilt if Tilly is not accessing all the therapies that she could be.

We were invited to Westwood College this week to see how their adaptations project is going in readiness for Tilly’s admission in 2013. We were delighted and amazed to see how much thought and consideration had gone into ensuring that students who use wheelchairs will be able to move around the site. Fantastic and bravo to them!

Candice went to a Chess competition on Tuesday evening and was not back until way after 10.30 pm which was very late for the Griffiths’ household and had us all yawning for the rest of the week. Rolf took the time to start the Christmas shopping which has left us all in awe as this is a task usually reserved until the very last possible moment.

It was good to see Tilly back at ballet, and I am adding the link http://www.youtube.com/watch?v=8HWgyVdcM3s so that you can see just how Tilly manages to dance and access other things using her amazing arm supports. I just can’t imagine life without them now.

Another luxury that I cannot imagine managing without is the night-sitting service that we get from the Childrens Airway Support Team about three times a month. Sue was extra welcome this week as we were all running on fumes. I have such a good night’s sleep knowing that Tilly is being so carefully and lovingly monitored whilst I stack up the zeds.

I attended a meeting with Dennis from Rudyard Sailability and British Waterways to find a way forward in our endeavours to put in the concrete slipway for our new building, in the face of rising water levels. It was a very positive meeting and it is hoped that a dam will go into the bay of the Lake soon so that work can commence. The only trouble is that it has not stopped raining since, and we are concerned that we will miss this vital window of opportunity and our building project could be delayed for a whole year. Progress is really in the lap of the rainclouds.

During this meeting, however, I received a call from Ben from Caudwell Children, and within a twinkling of an eye, Tilly and I were doing a piece to camera for Sky News on the cuts to Children’s Services

http://news.sky.com/skynews/Home/UK-News/Stoke-City-Council-Faces-33m-Cuts-To-Budget-With-700-Job-Losses-And-Closure-Of-Sure-Start-Centres/Article/201011115795957?lpos=UK_News_Second_Home_Page_Feature_Teaser_Region_0&lid=ARTICLE_15795957_Stoke_City_Council_Faces_%3F33m_Cuts_To_Budget_With_700_Job_Losses_And_Closure_Of_Sure_Start_Centres__
It really is a funny old world when the most vulnerable of society appear to be the first to make the sacrifices. It is hard to imagine that such economies will actually lead to savings in the long run.

During this week’s Chess Club, Daddie was hard at it in the kitchen and garden in readiness for this year’s Griffiths Bonfire Night Party. It really was the best celebration yet, with a roaring fire, gluhwein, hot-dogs, stuffed jacket potatoes, parkin cake and a spectacular firework display. As an extra bonus, Tilly managed to stay outside with us for the whole time, braving the whizzes and bangs that normally send her for cover. The only sadness being that our camera is kaput!

Swimming this week was ever more manageable as we took along Tilly’s emergency transfer sling again. Where has it been all our lives – it’s brilliant. We’ve ordered the second one so that we can work with a dry one and wet one.

Saturday night was Daddie’s “Curry Nite” which was scrumptious. I think that Rolf’s cooking, along with his ironing and impressions are just three of his best qualities. Another one is his ambition for the future; “The best is yet to come” is his motto which I think is wonderful.

Rolf took the girls to their piano lesson with Fleur this week and is delighted that the new ramp to get Tilly into Fleur’s house works. Tilly came back full of joy because the Christmas songs actually sounded like they should as she is using her arm supports to play.

Tilly and I then had a fantastic time at a Family Fun Day which offered a range of sporting activities for those who live with disability. Tilly started with the Cheerleading and was thrilled to have made up a chant, as well as dance to one of her all time favourites, “Reach for the Stars.” Tilly then went on to have a go at table tennis, which to our complete amazement, and a bit of ingenuity with the arm supports, was brilliant. Tilly loved the football and as got her name down for the next football course. My only sadness was that the camera was not working to share Tilly’s smile with you.

This event was a fantastic opportunity for Tilly to break down the barriers and see how she could make sports work for her. The organiser and coordinator in Staffordshire, Mark Forsbrook, is a truly inspirational character who is determined to bring sport and achievement to all, including those who live with severe physical disability. Tilly had a magic time learning how to control the balls in Boccia (which is a bit like French boules) and then went on to beat one of the Volunteer helpers from the Caudwell Children. The winning streak did not stop here as Tilly went on to devise a unique way of delivering the ‘pucks’ in Curling, and much to everyone’s amazement, went on to beat her young male opponent . It looked like an awesome feeling for Tilly. I will certainly investigate the possibility of getting such equipment into school, and possibly Treetops. An opportunity like this would also be brilliant at the Jennifer Trust for Spinal Muscular Atrophy’s annual conference. Tilly has spoken of nothing else since!

The Sandbags and the Gladrags

Before half term I attended a radio interview at BBC Radio Stoke to speak on behalf of the North Staffs Orthotics Campaign (www.nsoc.org.uk) which aims to improve the service of users needing appliances such as splints and spinal jackets, etc. The interview was to explain the importance of good Orthotics care and to encourage membership as the campaign has been put forward for consideration by the Parliamentary Health Select Committee, thanks to local MP Rob Flello. We did our best in the time considering that we were ‘gazumped’ by the breaking news story of the woman stuffing a cat into a wheelie bin! The Campaign leaders are meeting with the management team of the local service provider soon and Radio Stoke has kindly offered to follow this up.
Strangely enough, the next day Tilly had to go to Orthotics to collect the wrist splints that had been ordered back in August. Tilly wears these supports overnight to prevent her hands turning backwards as her little fingers look like they’d like to touch her forearm. We were treated promptly and greeted enthusiastically, but only to discover that the ordered splints were not fit for purpose. Thanks to the quick thinking of the Orthotist on duty, a perfect pair of wrist splints, that just happened to be sitting on the shelf, was offered. Tilly is so comfortable in them that she now also wears the left one during the day as well, offering increased support and function. Phew!

We then went on to the Caudwell Children offices to meet up with Simon from the Design Team and Tilly, complete with Happy Meal, was delighted to put the finishing touches to her book, Tilly Smiles, during a working lunch.
The Girlguiding Association never cease to amaze me with their selfless volunteering to provide their members with fantastic and fun opportunities. On 20.10.10 at 2010 the local groups of Rainbows, Brownies, Guides and Young Leaders all celebrated the 100 year anniversary of this remarkable organisation with a Glitz and Glamour Party at a local Hotel. Tilly danced herself dizzy, and as I peeped through the windows I saw her leading the conga and having a ball. What more can a Mummy ask?

We had a lovely meeting with Judy Reilly from Staffordshire Life who is doing a feature on the various folk from the Leek area. Judy was enchanting and enchanted with Tilly’s Book, especially the Forward from Bruce Forsythe, so hopefully we’ll see an article in this glossy magazine in the near future.
Tilly had her flu jab last week. It has to be said that she coped with it rather better than usual, and it was not until her little arm was revealed that she actually ‘lost it’. Poor little soul – she was so convinced that she was going to be ‘brave’ and felt so disappointed that I could have cried for her.
We were overjoyed to welcome Auntie Allie and Uncle Mikey (Rolf’s brother) for a night stop. They live over an hour and a half away so their visits are so precious. Uncle Mikey is a dream, and devotes every second to entertaining the girls, and Auntie Allie and I can chew the fat until well after the cows come home – very therapeutic. Rolf created the most delicious meal of chicken wrapped in pancetta – the perfect end to a perfect day. I always feel like I’ve been on holiday when we have such special visits.

Tilly, however, took a turn for the worst the next day and was overcome by one of her dreaded vertigo attacks which sent her whirling into a nauseous oblivion. Tilly was on my knee at the time it struck and all I could do was try and hold her steady over the next six hours as she looped the loop and howled in torment as her world turned upside down. There doesn’t seem to be anything else to do but ‘sit it out’ and pray that eventually it will subside, and eventually it did.

Tilly then slept on and off for the next forty eight hours and woke up ready to take on the world and be equal to one of Caudwell Children’s ‘Gift of a Day’ to Drayton Manor Theme Park, probably the last place that I would contemplate after such an episode. The rain hammered down, but we never stopped smiling as we leapt on and off the rides without the dreaded queues. Tilly’s highlight of the day was three rides on the Buffalo Roller-coaster that Rolf and I managed to man-handle her onto. We were also blessed with the support of a Caudwell Children Volunteer, Sam, who made such a difference to the smooth running of our magical day.

We were then treated to another day of family fun at Alton Towers Theme Park, made all the more exciting as we were trying out our new ‘manual transfer sling’ that I’d seen at The Jennifer Trust for Spinal Muscular Atrophy Conference this year. It was brilliant – and made transferring Tilly onto the rides so easy, using handles instead of grabbing Tilly’s body, and Tilly remarked how much more comfortable it was to be moved in this way. It makes me sob to think how much use we could have made of it over the years transferring Tilly from her powerchair to sledge, beach chair, hotel beds/baths, trains, aircraft seat, etc, etc. This “emergency transfer aid where the use of a hoists are not practical” from Silvalea, www.silvalealtd.co.uk and supplied by www.movement2.co.uk is awesome, but it cannot be recommended by the ‘powers that be’ because it does actually constitute a ‘lift’ contravening Health and Safety regulations. We are now going to purchase a second one so that it can be used for swimming. It’s amazing how such a discovery can be so life-changing, and will keep us smiling until there are ceiling track hoists bolted into the sky.

More treats as we indulged ourselves in watching the update programme on Tilly on BBC’s Jeremy Kyle Show. It was lovely to have the opportunity to see such a touching ‘blast from the past’ and to hear what we thought of it all back then in the ‘mists of time’. Jeremy Kyle was clearly taken with the girls and their ballet dancing and I’ve heard from the show that there has been a landslide of positive feedback from the viewers. Let’s hope it helps.
The week-end was a whirl of swimming, raffle ticket selling, rowing and filling sandbags! An emergency call had gone out from Rudyard Sailability to help construct a dam by filling 5 ton of sand into bags, and transferring to the bay wall. One other Volunteer, Charlotte Atkins, (who had been the Labour MP for Staffordshire Moorlands) had heard the call and pitched up to help. Other volunteers had just popped to the Lake for a bacon butty and found themselves with a shovel in hand. It was a fantastic effort by all involved and I certainly used muscles that I didn’t know I had, but by Sunday afternoon it was ‘mission accomplished’, and represented another step closer to our proposed new boat store. My lovely Dad always said ‘nothing worth having comes easy!”

Meanwhile, Rolf and the girls did a fine job spookifying the house and carving the pumpkin ready for the Griffiths’ Halloween Spooktacular with the girls ‘witchy-godmother’ as special guest. The girls had created ghastly word searches; ‘hang-witch’ games; ‘pin the cat on the broom’; and then after one of Daddies’ frighteningly scrumptious roast dinners, we ‘bobbed for apples’ and Tilly teased us with the ‘chocolate on a string’ challenge. It was a horrifyingly wonderful night - but having just reviewed the photos, I must remember to take my mask off!