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.




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.