Sunday, 1 January 2012

It's the Dog or the Blog!



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

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

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


Paddling on the beach under St. Michael's Mount
Lunch on the sands of St Ives

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

Meeting up with friends at the Eden Project

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

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

We were really honoured to be asked along to the Donna Louise Charity Ball, where Tilly and I gave a little speech.  As it was local, it was also a special treat to have Daddie come along too.
Treetops 'Jazzamatazz' Ball
One of the major highlights of the summer was the Creative Learning two week summer school at the Regent Theatre which culminated in a production of Fame.  It was truly awesome - never did I imagine that I would see both my little girls leaping about in neon on a professional stage - a real credit to all concerned.

Just adding a bit of greasepaint



Tilly's book goes on sale on Amazon

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

Showtime!

  

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


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


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

The Guides' Sleepover at Lichfield Cathedral
Looking for the Staffordshire Hoard

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

Lights Out!

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

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

Halloween was great fun this year with the usual howls of laughter.
Happy Halloween
Lady GaGa bobbing for apples

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

Christmas really starts to kick in once we have dug out the santa suits and run the Cheddleton Pudding Race.  It is always an atmospheric race which raises funds for cancer research.
Lexi's First Pudding Race
So much hard labour has taken place at Rudyard Lake with Volunteers, in spite of their own disabilities, donning high-viz, hard hats and boots to keep the project moving and on budget.  Hundreds of tons of spoil were moved from the site and tens of lorries of stone rumbled in for the foundations.  It was a moving moment when the steelwork went up and the building really took shape.  After six long years of battling for planning permission and funding we are determined that our boatstore will be completed and ready for the start of the new season in April.  That will certainly be a triumph over adversity and thanks to the tremendous support from so many hundreds of good hearted people. 
Rudyard Sailability's Building Takes Shape

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

Sailability Santa and his little helpers

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

It's beginning to look a little like Christmas

Lexi's first pawprints in the snow

Lexi looking after Tilly
 Tilly recovered enough to take part in the national breakfast television programme, Daybreak, which featured the launch of a Text Santa appeal for Children's hospices around the country.  It was immensely exciting to be part of live TV and the girls did us proud with their contribution.  
Gethin and the Griffiths Gels at Treetops
 As we rolled into Christmas, so Rolf's family began to arrive.  The best bit was having six month old twins, George and Evie, who completely stole all our hearts.
Christmas Morning 2011
 Rolf was a Christmas Angel this year and took care of all the shopping, cooking and present buying, (and wrapping).  He even ensured that Santa filled a stocking for all fourteen of his Christmas guests - he was sublime.  I have already received orders to book him out for next year, but there is an extra charge for the reindeer pinny option!
At least it's only once a year!

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

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
































Monday, 23 May 2011

Return to Blogsville


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.