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Flicking through the pages of the diary I can't really put my finger on the reason why I've not found the time to visit Blogsville recently- but suffice to say that I've missed it.



Arabian Nights

One of the highlights of the weeks gone by was the Dance Show.  Candice knocked our eyes out with an amazing Diamonds are a Girls Best Friend tap routine, and then broke our hearts with a delightful ballet dance to Walze of the Flowers.  Tilly was not to be left out and performed a truly inspired dance routine surrounded by beautiful Egyptian soldiers.  Her chair was magically transformed in Cleopatra's Throne and her arm supports were draped with veils which gave a mesmerising effect. It was dazzling.  I can't wait to see the DVD which should be out very soon.

One beautiful spring day we had the absolute pleasure of driving up into the hills and paying our first visit to Lexi - a six day old Golden Retriever puppy who will soon be welcomed into the Griffiths family forever.

We are just counting the days until we can visit her again, and eventually bring her home for good.  Daddie is busy getting the garden secure and we're all reading up on puppy training,  It will be like a dream come true for all of us.

We were very lucky as we were invited to Treetops for the Royal Wedding - what could be better?  We all dressed up and sat around the wide-screen TV in the family lounge, oohhed and aahhed at the guests; wept buckets during the service; shrieked at 'that' hat, and finished it off with a bunting-bedecked tea with jelly and ice cream!  Perfect!  Candice and I had lots of special time together on this visit as Tilly had her two special mates staying at the same time.  That's the beauty of Treetops, plenty of room for three powered wheelchair users to play hide-and-seek, have a midnight feast and play on the wii! The three girls have promised to keep in touch and hope to meet up again before the next visit to Treetops.  What a unique opportunity.



 The warm weather and short school weeks were fabulous and led to lots of lovely 'al fresco' lunches, picnics and long lazy days reading Harry Potter.  The 'All-terrainer' buggy came in handy for the rough ground and was a great way of carrying the picnic basket.  Daddie has treated us to a host of freshly baked breads as he indulges in his new passion of baking - there really is no end to his talents!


Sur l'herbe at Consall Gardens

 I was treated to the most magical 50ieth birthday with a visit from my bestest friend, Sarah, who now lives in Barcelona.  Rolf and the girls decked the house with banners, chilled champagne and laid out a glittering array of stunning birthday cards and gifts!  We were further treated to a visit from Charlotte and Gus bearing more Champagne and a lovely time was had by all.  Rolf served the most delicious feast and it was rounded off with cake and candles.  What a lucky girl I am.


Hic! Hic! Hooray!

I always feel so very fortunate to have such wonderful girlfriends who support me and the family in all that we do.  They all rallied behind us when we learnt that we were invited to Caudwell Children's Butterfly Benefit at Banqueting House, London.  First Tilly had to create a dazzling piece of artwork that could be auctioned off, and all three of us ladies would need posh frocks at short notice.  It was like a scene of our Cinderella with all our fairy godmothers raiding charity shops, altering dresses, blinging up shoes, lending shawls, creating jewellery, doing nails, sticking on eyelashes and magically waving magic wands to get us ready for the ball!



Cocktail stick glitter application

Tilly had to do her final SATs test at school before she could be whisked away for her sparkling adventure on the train to London.  (Thereby hangs a tale as her wheelchair space was double booked at Stoke on Trent and she was left stranded on the train without a ramp to get off at Euston).  However, little could dampen our spirits and we were soon aboard a London bus bound for our hotel which was very swishy, with a view of Big Ben out of the foyer!



All dressed up and ready to go!

One of the most tingly moments for us was walking across Westminster Bridge in all our finery at 5pm in the afternoon - tourists wowing approval and commuters busy ignoring us.  We hooted and giggled as all our precious, hard-won curls blew away as we crossed the Thames.  Did we care?  Nothing could dampen our spirits!

We skipped along Whitehall in the sunshine and was gleefully greeted by Lisa from Caudwell Children, who had volunteered to look after us for the evening.  We were immediately reassured to be in the hands of such a special lady.  The first challenge was that we couldn't actually get Tilly in her powerchair into the lift up to the Banqueting Room. I saw the whole evening evaporate before my very eyes!  Lisa met it with her trade-mark flashing smile loaded with lashings of energy and determination!  Never daunted, Lisa engaged the services of an equally dynamic lady from the establishment, and within a twinkling of an eye, Tilly's chair was mountaineered up two flights of stairs by a band of willing, strong gentlemen and Tilly rode up in the lift on a dining chair!  Mission accomplished!



Nice to see him, to see him nice!

The room was jaw-droppingly magnificent!  It was so ornate and gloriously decorated with the most heavenly flowers and stunning table-wear.  An angel was singing opera.  It was then that 'Brucie' dashed over to us to say hello.  Was I dreaming?  What a rare and beautiful privilege to be invited to such a fabulous event.

The next heart-stopping, moment was to find that Tilly was sitting next to celebrity chef, Aldo Zilli, on Peter Andre's table!  Our 'Butler' introduced himself and we were treated to the most amazing, six course meal that was not only incredibly delicious, but a feast to the eye - almost too exquisite to eat!

Tilly managed all her food with her super arm-supports which did cause more than a sense of awe in all those present.  They really are remarkable and I never cease to be amazed by them at how they've brought so much independence.  The evening was compared by Alex Winters from CBBs - who was divine - charming, delightful and hysterically funny.  He was a marvel at calming me down with tales of Wales, as I got last-minute jitters before going on to do my speech.

As the banquet drew to a close, the moment of my presentation had arrived and  Lisa took the girls backstage giving me free reign to talk to the audience.  Up on a grand stage, with a hug and a squeeze from Trudi, CEO, Caudwell Children, I launched into my speech which I delivered from my heart.  The room was silent.  I knew that every second and every word would count and I gave it my very, very best in the hope that it would make a difference and move people to dig deep to offer support.  It was an enormous relief to have got through it as I have been uber-anxious for weeks as Caudwell Children means so much to me that I really didn't want to let them down.

It was Tilly's turn next to go on stage with John Caudwell and auction off her artwork which she had called, "Fly Beyond Your Dreams",  I was so proud of my little girl.  John gently guided her through what she wanted to say about why she had chosen the butterfly image and what her powerchair means to her.  Her last statement floored me, however, and sounded a huge metaphor for her situation when asked what life would be like without her chair, "I'd couldn't even cross the room......I'd be stuck."  These poignant words really summed up the magnitude of what these amazing chairs can do.  Side by side, John and Tilly, encouraged the audience to part with enough money to buy 26 powered wheelchairs, £520,000.  Oh what a night!

We just rode the crest of the wave of euphoria for the rest of the evening - having declined the delights of the wine cellar throughout the dinner - Trudi's invitation to a glass of champagne was most welcome and tasted like nectar.  We were buzzing, quite delirious that the event has made £1.55 million and that 'we were there!"  What an honour for a family such as ours.

The wonders of the night did not end as we were treated to a front-stage performance was none other than that of Robbie Williams who was simply AMAZING!  He was exceptional, funny, athletic, human, mind-blowing, etc.  A performance that I shall never forget, especially as he knelt down and reached out to kiss Tilly's little hand during his set.  I leaped into the air and danced my eight inch heels off!  Still incredulous that it was really us so close to a genius. 

The evening came to a spectacular close with a brilliant performance by Robin Gibb who played everybody's favourites and who filled the dance floor with folk just like me reliving their teenage disco fever nights.  I was astonished to hear that it was way past one thirty in the morning and time to call Security to lift Tilly's powerchair down the stairs ready for home. 

It was a balmy, star-speckled night, just perfect for a moonlit stroll back over Westminster Bridge to our hotel with Lisa. However, we did not venture out into the night air alone as we were assigned (secret agent) Calvin to escort us home. I felt like wed wandered onto the cartoonscape of Peter Pan.

The girls were both bundled into bed without much ceremony for 0330.  Lisa and I, in spite of the lateness of the hour, felt obliged to stay up for a little while longer, to carry out a full post-mortem of the evening, put the world to rights and check the quality of the local wine!
 

It was with some astonishment the next morning when we woke at 1012 to actually find ourselves down for breakfast at 1030!  I'm still trying to work out how we pulled it off!

After breakfast, we bid fond farewells to the Caudwell Children Gang and yomped our way along the Embankment towards Waterloo, caught a bus to Euston - boarded the Virgin train (that was not double-booked) and and found ourselves back in Stoke on Trent, (ramp waiting for Tilly to disembark at the right door), to a waiting Daddie.  Rolf had been invited to this glittering event, but sadly had already taken a booking for an evening meal at our B&B that he could not wriggle out of.  At home, Rolf cracked a bottle of Cava, which he served with a delicious dinner of pollock fish and 'African' potatoes and listened to all our news with pride and joy.  Another lovely evening.

Since then we have had the pleasure of going to see the Russian All Stars in Swan Lake on Ice, with our very special friends, Andrea and Molly.  I actually wept and sobbed the whole way through, when my heart was not in my mouth because of the death-defying ice tricks I was watching.  Don't miss it if ever you get the chance to see this performance as it is magic.

The girls have also spent a Sunday at a Stage Experience audition for Fame the muscial which they so enjoyed, and much to their utter amazement they have got a part in the Ensemble.  They are bubbling over with excitement at the prospect on being involved and performing on the big stage in Hanley.  I just can't wait to see how it all turns out - I'm sure it will be terrific.

Tilly had her spinal rods lengthened last Wednesday which came with all the usual attendant stresses and strains on all sides.  Once again we were fully supported by all the family girlfriends, but it certainly doesn't seem to ever get easier.  The only consolation this time was that Tilly could be distracted somewhat on the way to Theatre and in the Anaesthetic room by telling everyone about her expereinces at the Butterfly Benefit.  Tilly came round beautifully, the only problem being that she did not have a teddy bear on her cannular plaster!  A little reminder of just how little she is when facing such big challenges.  She spent the rest of the day drifting and dozing in and out of consciousness, very weepy and looking very vulnerable and tired.  It was with some relief when at last she opened her eyes and Tilly was back.

Allie, Tilly's PA, popped out to get Tilly a MacDonald's Happy Meal later that evening (I had a cappuchino and the largest chocolate muffin on earth) and then Tilly spent the night comfortably in the Intensive Care Unit where she was lovingly cared for by staff, many of  whom have looked after her since she was three.  They really are wonderful and Tilly just loves them. (and so do I)!

After a couple of days R&R Tilly was up for going along to Merryfields Special School where she opened their summer fayre.  What an honour!  Following the formalities Tilly went around all the stalls and found just how much she could take part in because of her arm supports.

Tilly has since succombed to a chest infection which is battling throughout the day with anti-biotics, nebuliser, cough assist and her trusty suction unit.  Tilly seems fine in herself, but I am keeping a close eye on her as these things can become quickly out of hand.

So we're back to reality with a bump - but the memories of all the wonderful experiences over the last few weeks and the promise of all the exciting things ahead will keep us going I'm sure.


Two Steps Forward .....

All going swimmingly!

The pace of life has built to a steady canter as we settle into this half term. Candice is practising for her Grade 3 piano exam, and seems to be on every sports team going, and was dancing on air as she had received a prized ‘Distinction’ in her recent tap exam. Both girls are busy rehearsing for the forthcoming dance show at Easter and Candice attended a recent National Youth Ballet audition, and although she was unsuccessful she really enjoyed the experience. Tilly continues to thrive at school, especially English and ‘Wii-hab’, and has played for County in a Chess Tournament – although she came second in all her matches, she really enjoyed the challenge.



Look!  No collar!

 In collaboration with an enlightened local Head Teacher, and an inspired swimming coach, Tilly is now swimming once a week in the warm pool of a local Special School. At the moment we are the only participants in this session so Tilly is thrilled to be able try out things in the in the calm waters that she finds difficult in the choppy, cold waters of the local leisure centre during her Saturday lesson. The highlights so far are being able to swim on her back without her buoyancy collar, and actually ‘stepping’ up the steps. The pool is just not quite big enough for her smile!



Suits You, Mi'Lady!

 Tilly had her birthday treat over the week-end which started with a girlie lunch and a whirl around the shops with her best friend, Becky. In one particular shop I was struck by their howls and shrieks of devilish delight, which could only mean one thing – they were trying on the posh hats! It took me immediately back to when I used to be helpless with laughter with my friends as we posed in exotic millinery. The extra joy for me is that because of Tilly’s amazing chair and sparkling outlook, she is able to just get on with all the stuff that being eleven is all about!


Poster Girls


The girls spent hours during the previous weeks with Allie, Tilly’s PA, creating posters to take to the X Factor Live Show. Once they’d put the finishing touches they had a fab sleepover with all the vital ingredients – pizza, pop, chocolate, and a DVD. We feel so blessed that Tilly has such a special mate who has been with her since pre-school. Rebecca just accepts all the ‘three act operas’ and isn’t fazed by all extra stuff and doesn’t seem to notice the noisy machines through the night. What a star!


Ready to Rock!


The girls spent most of the day getting ready for the evening show whilst I was in a meeting for Rudyard Sailability. The excitement was reaching fever pitch, with one of the driving forces being Harry Styles from One Direction! The show was a triumph! The girls squealed through every act (even Wagner). Each artist was faultless and a brilliant time was had by all. The hoot of the night, however, was that I was left a note on the windscreen by a kindly gentleman who’d helped us out with parking – he left his name and contact details in case he could be of any further assistance! The girls were howling that Mummy had ‘pulled’, and Rolf is keeping the note as ‘evidence’! Could it be that there must be life in the old dog yet!


Hooray for Harry!



Rebecca's First Concert!


The following morning, however, broke with sickening news. I was called outside at 0630 because Tilly’s PA had been knocked off her bicycle by a car doing 40 mph. She was propped up against our wall, shaking in a state of traumatic shock. The car’s windscreen was smashed in, and she’d been thrown at least 10 feet, before skidding to a halt at the kerb. The ambulance crew immediately treated her for a broken neck and back and were aware that her gravel burns would need urgent care. I held on to this beautiful, young, brave girl, who kept trying to smile, insisting that she was OK and urging me to go and look after Tilly. There was further anguish as her parents were away on holiday so I needed to stay by her side to reassure her that everything was going to be OK. Rolf took over the family’s needs and I prayed for a miracle. We got one! After many false dawns and deliberations it was eventually decided that there was no significant spinal injury, although the gravel burns would need to be treated in theatre under general anaesthetic. Family and friends who had now gathered at the bedside wept tears of joy and relief. 

I was further amazed when I got home to learn that Candice and Rebecca had taken charge of getting Tilly out of bed and dressed ready for school.  It is an absolute credit to them that they made it into lessons for 0920!  I imagined that Tilly would still be in bed watching a DVD waiting for me - I'm obviously not as indispensible as I thought!  What superstars!

The day had a very sad ending too. A late-night knock at the door revealed a couple asking to borrow a shovel as a cat had just been killed on the road. It seemed that the Grim Reaper had felt cheated earlier in the day and had come back to satisfy his need. Tilly immediately wailed, “Not my Vienna, Mummy?” On exactly the same spot as the early morning collision lay Tilly’s little pussycat, motionless. This beautiful, kind couple realised that I was unable to cope, so took matters into their own hands, and told me to tell Tilly that they would take Vienna home and bury her. I am completely in awe of such a considerate generous act.

Tilly said that the X Factor Concert was one of the best days of her life, and the next day was one of the worst. As the days have pulled away she has started to recover and has eventually stopped dissolving into uncontrollable sobs. This is one shocking day that I am sure we will all take time to come to terms with, but it is one result that we will forever be grateful for as it could have all been so very different.



Night Night Vienna

 I

Parties and Politics

The girls have celebrated their eleventh and thirteenth birthdays and Rolfie and I have entered our fourteenth year of marriage.  He always says, "It seems like only yesterday," and follows with a wry smile, "I wish it was tomorrow, I'd cancel it!"  Such a charmer!



Tilly's Birthday Breakfast

 Candice created an amazing "Twilight" themed party, complete with a range of the various blood groups as a drinks option!  It was a blood-curdling success.



Fit for a Vampire?



The scene is set

 Tilly decided that she'd lend a hand in the kitchen, and once again her magic arm supports came up trumps.


Tilly in training



Good enough to eat!



 Since our last visit to Blogsville we've had an interesting experience that seemed to confirm just where on the 'Press-ometer' children with disabilities rate.  You may, or may not, remember the headline news of a little girl in Bristol whose Mummy was going to have to put her into residential care because of the latest cuts to her home care package?  Vaguely?  It was astonishing to track how the story was growing in magnitude, consuming acres of column inches and air time.  It seemed that 'the genie was out of the bottle' and that the Government, in these financially stretched times, were going to have to seriously consider the plight of families struggling to care for their children with disabilities at home.

As the Press coverage swelled, we were invited to do a piece to camera by a national news company.  With the generous cooperation of the Staff and Pupils, a piece about children with disabilities was filmed at Tilly's school.  However, just as the the report was being sent to the Editor, the Shadow Chancellor announced his resignation and the whole story just disappeared.   The genie was sucked back into the bottle, with the cork rammed into place, with the Government, no doubt, heaving huge sighs of relief, and toasting the marvellous timing of the opposition's announcement.   The next day ex- Prime Minister Tony Blair was the headline act at the Iraq Inquiry, and so our story was buried forever.   A sign of the times, or has it always been so?  May be next time if the 'genie is let out of the bottle' we jam the cork on pronto! 

On to more positive outcomes, Tilly attended a Family Fun Day locally and had the opportunity to have another try of Boccia and New-Age Curling.  Tilly played against other power-chair users, Caudwell Children Volunteers and Sally, her morning helper.  They were all close-run matches needing skill and concentration with real challenge and a competitive spirit.  Tilly is hooked and I will be looking into getting Tilly more involved, and the possibility of introducing these sports into school. 

Tilly also 'Reached for the Stars' using her arm support s in a Cheerleading session and also tried out yoga which she loved, and knowing how good it will be for her, we'll have to see if we can shoe-horn a session in somewhere in the week.  I wonder if other parents feel guilty, like me, that they could be doing more exercise/physio for their children?  Could just do with an extra day in the week, or a few more hours in a day perhaps?

So where are we now?  Tilly and Candice are safely snuggled in the sensory room, watching a DVD under the watchful eye of Nick, with a selection of chocolate goodies within reach.  They spent the afternoon at the Trentham Gardens' circus whilst I luxuriated in the spring-like sunshine with a cappuchino and the newspaper.  Last night Tilly delighted in taking Bertie the Daschund for a walk.  Along with meeting up with special friends; catching up on Harry Potter, the girls have honed their singing skills on the karaoke machine.  Their days have been filled with fun, joy and love, complimented by fabulously home-cooked meals and midnight feasts.  We are at Treetops - the Donna Louise Children's Hospice - for the half term school holidays.  Bliss!

We always look forward to our respite visits to Treetops, but this one was especially welcome as Tilly has been battling a very nasty chesty infection.  It all started with a vicious vertigo attack on the way to the school disco.  Tilly was sparkling from head to toe, and within seconds found herself looping that dreadful loop and fit for nothing.  We dropped off her friends to hit the dance-floor and we crawled back home with Tilly's teacher kindly holding Tilly's head as still as possible.  Poor Tilly had been planning this evening for weeks and I knew she was bitterly disappointed.  She broke my heart as I witnessed one solitary tear roll down her sparkling cheek.  Such a swizz!

In spite of galloping temperatures and waves of nausea Tilly worked around the clock to keep her chest as clear as possible.  We were really blessed to have Allie, Tilly's PA, who came every morning to help get Tilly up and manage her secretions.  It must have been a steep learning curve for Allie, who was on holiday cover, but she rose to the challenge magnificently - we wouldn't have managed without her.  The 'shaker-maker' (hyek oscillator), nebuliser, cough-assist and suction unit were in constant use.  Tilly was brilliant and was so brave she made me cry, but also made me concerned that she was working so hard that she would exhaust herself and suffer a respiratory collapse. 


Fighting Infection


There were also a few moments when 'my finger was over the nine', when I suffered a crisis of confidence and worried that we needed some hospital intervention.  Daddie was right beside us and reassured us that Tilly was 'holding her own' and we needn't panic.  We do have a good equipment at home, but it is also difficult to know when you're moving 'out of your depth.'  I have since learned that there is a 'hospital at home' team that I can contact next time for reassurance and guidance. The trouble is that when you're in this episode it is difficult to know what day or time it is, and it is only after the event that you remember all the folk that you could have called upon for help.  Since we've put our heads back above the parapet there has been a chorus of "why didn't you call me?"

Tilly said that this time Treetops is really like the paradise island that we have been looking for on our frightening sea voyage - a wonderful place where we will be loved and cared for and can recharge our batteries ready for when we next set sail on our journey.  Bless her - for an eleven year old she so 'gets it!" 

The only sad thing, of course, is that we have left Daddie at home, 'one more time with feeling', holding the fort at our B&B.  He has been such a Star during Tilly's illness, keeping Candice on track with all her activities; running the business and amazingly he has also embarked on the winter renovation and redecoration of the property.  What with that, doing all the ironing; creating amazing meals and making sure that we celebrated Valentines Day; I am seriously considering keeping him on!

Whilst Daddie has the space to get on with his jobs,  Treetops has give me the golden opportunity to do my Trustee Training for Caudwell Children whilst the girls are having such fun.  I have been able to go in to the Caudwell Children's office every day and have an induction session with all the different departments.  It has been excellent and confirms my belief that they are all highly motivated individuals, completely committed to working in a dynamic team, with the sole outcome of enriching the lives of families who live with children with disabilities.  I now have a better understanding of the structure of the Charity and feel really excited to be part of such an energised organisation as they move forward into exciting new territory.

Caudwell Children are looking for 10,000 friends to sign up with them on facebook so please take a few moments to follow the link and help them reach their target  http://www.facebook.com/#!/pages/Caudwell-Children/39799067464

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.