Chez Tilly

Rays Of Sunshine

2012-02-02T13:40:00.000Z

With the thrills and spills of the festive season far behind us, and the long cold dark days stretching out before us, it was hard to imagine that January could be so very exciting........

An accessible paradise isle

With the darkness of January enveloping the new year it was so fabulous to be transported by Daddie to a paradise isle, also known as the Sheraton Skyline Hotel, Heathrow Airport. Rolf treated us to this special night-stop as part of a dream week-end organised by a wish-granting charity, Rays of Sunshine.www.raysofsunshine.org.uk

Ready to rock!

The next day, after a breakfast overlooking the runway, fantasising about future holidays, we made our way to the Hilton in Kensington where Rays of Sunshine had booked us in for the next part of our adventure. After a trip to a very swishy shopping mall, Westfield, the girls glammed up ready for a very special evening. Rolf took charge of doing Tilly's nails whilst I concentrating on blinging up Tilly's chair. Then we were whisked away in a black cab to Planet Hollywood, all organised by Rays of Sunshine.

You'll never guess who I had in the back of my cab!

It was so exciting whizzing up through all the famous landmarks such as The Albert Hall, Harrods, and Hyde Park Corner on our way up to the West End for our meal. We spent the time recalling all of the magical moments that we've had in London and just how intoxicating a city it is for us, especially with the wheelchair-accessible buses.

Arm supports make chocolate milkshakes all the more yummy

Planet Hollywood was buzzing, the food was great and the staff were brilliant making sure that they found us a table that would accommodate Tilly's arm supports.

We tried to ramp up Tilly's bed with the luggage rack and various spare pillows to create the profiling bed that she has at home. Normally this works a treat, but I think that the excitement of what the next day would hold was too much and Tilly needed moving about twice an hour! Not to worry, Rays of Sunshine had booked us a late breakfast, leaving plenty of time also to get ready for the big moment.

The morning was spent in a whirl of curling tongs and bendy rollers as the girls dollied up to meet their idols. Rolf spent the time hauling Tilly's equipment down to our car the underground park ready for home, between blow drying Tilly's hair and unravelling her blond tresses - what a lovely Daddie! The girls had devoted many hours to purchasing just the right outfit with matching accessories and I must say that they looked a million dollars.

Your carriage awaits!

At 1230 we made our way to the lobby where the longest, shiniest, most poshest limousine was waiting to collect us and take Tilly and Candice to meet five very special young men. I must confess I shed a tear that so much had been done by Rays of Sunshine to make my little girls so happy.

Is this for real?

The Chauffeur was fabulous and straight out of a movie and took lots of photos with his paparazzi-style camera. Rays of Sunshine had really thought of everything as they had booked a black cab to 'follow that limo' to our destination. It really felt quite surreal, with the flashing lights illuminating the champagne and lemonade stocked bar - we all giggled like schoolgirls and squealed as passers-by wondered which celebrities could be sweeping through London in such a glamorous car - and it was us, the Griffiths' Clan from Cheddleton. They do say that half the fun is 'getting there' and this was certainly no exception as Tilly has always dreamt of a ride in a limousine, although she is not the only one!

The car purred around the London streets and came to a sedate stop at the Hammersmith Apollo where blazoned across the entrance were the two words that sent the girls into orbit "One Direction". The excitement had now reached fever pitched and the girls were screaming silent screams and smiling and squeaking so hard that I thought they'd burst. I must confess that I contributed many a whoop and yeh! as their jubilation and anticipation overflowed.

We were met by the very beautiful Siobhan from Rays of Sunshine who greeted us like treasured friends that she was about to guide on an unforgettable experience. I couldn't see her magic wand, but I'm sure that she had one. Her care and attention to every tiny detail was touching and appreciated, especially when Siobhan and her colleagues created a human wall to shield Tilly as Daddie gently lifted her from the limo back into her powerchair.

We were guided through the elegant doorways of the Apollo, past a huge crowd of waiting fans who, all good-natured, complimented the girls on how they looked and asked them to pass on love and kisses to the boys. We went into the auditorium where the stage was set ready for the One Direction concert that evening, and then with little or no fanfare, five handsome, smiling, young men walked calmly into the room and warmly greeted Candice and Tilly.

Smiles all round

They were so relaxed and friendly that within an instant the girls were chatting with them like old friends. They were interested in everything the girls had to say, and so happy to answer questions about their journey so far.

A Customised One Direction Powerchair was admired

They were all delightful and cheerfully signed all the merchandise that the girls had brought along with such enthusiasm and happily posed for photos which were also captured by a Rays of Sunshine professional photographer. (They do think of everything)!

He's my favourite!

They seemed genuinely thrilled to receive a copy of Tilly's book, Tilly Smiles, and said that they'd spend time reading it properly in the dressing room. Such poppets!

I did hear myself congratulating them on being so lovely and taking time to work with Rays of Sunshine to provide such special memories for children with disabilities - they really don't have to, but I'm so glad they did!

My real hero!

With fond farewell and heartfelt thank yous to all concerned we were then treated to a guided tour of London before returning to our car and making our way back up to Staffordshire where I am still waiting for the girls to come back down to earth!

There were other 'rays of sunhine' that brightened up January for us which included an article on Tilly Smiles in the Daily Express. This was incredibly exciting and down entirely to relentless efforts of Jon Nock http://www.idiscreativemarketing.co.uk/ who works so hard to promote Tilly's book. The book is now available from Amazon and all proceeds go directly to the Jennifer Trust for Spinal Muscular Atrophy. Jon also works to shed light on all the marvels and opportunities of Tilly's Balder power chair which really is the most amazing piece of kit. There isn't a day that passes that I don't count my blessings that Tilly has such a magical machine

Yet more shafts of light piercing the gloom is the progress that is being made on the Rudyard Sailability accessible boatstore. The brickwork is steadily rising and the honey-pinky, tumbled stone is giving the building a beautiful 'old cottagey' finish.

It's really taking shape

I really enjoy being involved with the actual construction of this building and so enjoy donning hard hat, high viz and wellies every Tuesday to lend a hand with other Volunteers with whatever donkey work that needs doing. It is so incredible to see such a lovely building rising out of what was a big, muddy hole. There have been so many supporters who have contributed to this £500K project which now only needs £100K to see the job completed, hopefully by the start of the new season in April.
One of our recent benefactors was Pritpal Nagi, fonder of the Sanja Charity who hosted the Hollywood/Bollywood Ball for Rudyard Sailability in December. There is a short film on U-tube created by the Sanja Charity, featuring Tilly, Pritpal and myself which provides a good update of the project.

http://www.youtube.com/watch?v=8OsO0PDxoN8

January can never be gloomy because my very own ray of sunshine, Candice, has her birthday. I just can't believe that my little girl is fourteen already.

As Candice's birthday co-incided with Chinese New Year, Rolf treated us to a Chinese banquet which was delicious. Candice was further treated Daddie's famous 'creme brulee' which was awesome.

Make a wish!

Even more reasons to be cheerful amid the winter chill as it was Tilly's birthday three days after Candice's. Daddie conjured up a fantastic meal of 'salmon with skin' and 'African potatoes' which is a melange of two of her favourite dishes. Tilly went for the more traditional Alabama Chocolate Fudge Cake to make her birthday wish.

I think Harry Stiles might have featured in Tilly's wish!

One of Tilly's presents was a tall table with a tall stool, and a tree - all for her room makeover which Rolf has been working on. It's absolutely perfect, so very sophisticated and Tilly loves having breakfast here with Candice. It is also so much easier to get into with her chair.

Examining the card signed by One Direction

Between the birthdays we celebrated our fifteenth wedding anniversary on Burns Night when Rolf piped in the Haggis and respectfully addressed it with Rabbie's Ode. As a former vegetarian, I even managed a mouthful of the stuff washed down with a pint of whisky and a mountain of tatties and neeps! Never again!

An absolute ray of sunshine for all of us is Lexi who in spite of the big freeze just loves splashing through any piece of water she can find. Our daily walks are marvellous for the mind, body and soul and there are glimpses that she is learning to come back when I call, which will do marvels for my blood pressure. Lexi is devoted to Tilly and shadows her every move and just loves to snuggle up beside her as she is big enough now for Tilly to reach her.

Come on in - the water's lovely

We had a lovely yomp at a local reservoir, Tittesworth, with special friends and their dogs. The wheelchair-accessible walkways meandered through the woods and around the water's edge so that Tilly and her friend, Charlotte could really be close to their doggies having so much fun.

Tea for two

Charlotte's family came back for a cuppa and to view Tilly's room as they are just about to take on their own ground floor disabled facilities adaptation - such a huge task, but so very necessary as they are still having to manage to get Charlotte upstairs. I wish them the very best of luck as it can be a very stressful time.

So, it has been a rather sparkling January with so many rays of sunshine to chase any winter blues away.
Here's to all that is to come in February.

Happy Birthday love Lexi

It's the Dog or the Blog!

2012-01-01T22:09:00.000Z

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.

Return to Blogsville

2011-05-23T22:43:00.001+01:00

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.

Dining at Treetops

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 .....

2011-03-20T18:39:00.000Z

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

Parties and Politics

2011-02-27T17:28:00.000Z

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)

2011-01-15T00:47:00.000Z

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.

Ready to Roll

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!

Where's Harry?

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.

Ahh Phooey!

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.

zzzzzzzzzzzzzzzzzz

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.

UFO or Tilly's lunch?

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.

Yahoooooo!

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.

I'm a very lucky girl!

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

2010-12-09T16:15:00.001Z

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

2010-11-17T15:24:00.000Z

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

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

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

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

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

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

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

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

I think my little girl is growing up.

The Sky's the Limit

2010-11-08T21:57:00.001Z

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Sandbags and the Gladrags

2010-11-02T14:38:00.001Z

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

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

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

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

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

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

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

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

The Cold, The Trips and The Clicks

2010-10-18T13:31:00.014+01:00

Tilly continued to battle with her tummy bug last week-end and so spent the week-end drifting and dozing, waking occasionally and, thankfully, showing slight signs of improvement. Jessica came and helped me bath and wash Tilly’s hair on Saturday morning, instead of helping with the swimming, and remarked how horrible it was to have Tilly so quiet. Candice, however, thanks to Daddie being able to hold the fort with Tilly, was able to carry on with her usual activities of Chess and rowing, and even brought home a trophy from the Staffordshire Chess Challenge as U14 Girls Winner. What a Star! It made me realise how exceptionally hard it must be for one parent families when one child is unwell – I guess that life can come to a standstill, especially if there is an additional need.

Rolf stayed with Tilly on Monday so that I could go along to the Treetops Carers’ Support Session which was great. I always love going to the Hospice and feel immediately enveloped in love, care and energy as soon as I step over the doorstep. It’s always a very mixed group of staff, volunteers and carers and the conversation is always vibrant, emotional and helpful. I was able to chat to a Mum going off on Caudwell Children’s Destination Dreams, and it was wonderful to relive the excitement and give advice on an experience that we shall treasure forever. I also learnt that a member of her family has a child recently diagnosed with Spinal Muscular Atrophy, and so we exchanged details with a view to me meeting up with them and seeing what I can do to help. My blood runs cold as I remember our experiences at Tilly’s diagnosis, so let’s hope that I can manage to bring comfort to them at this excruciating time.

Learning, of course, is an ongoing process, and I always learn something new when I talk to other parents and carers of children with disability, and love being able to occasionally pass on a 'gem' that will really make a difference. These days I love to hear the opinions and perspectives of young adults who live with disability as their unique and personal insight into living with disability can do so much to help us along our way. I appreciate that as much as I might try to really understand how Tilly feels, my views are only perceived ideas based on what Tilly says and does. As Tilly progresses, she might well be less likely to share her thoughts with me so I do appreciate and welcome the thoughts and feelings of others who have already 'been there, done that and got the t-shirt!' I also expect that Tilly will go her own sweet way, but every little helps when it comes to parenting.

Before getting back to Rolf and Tilly I gave a guided tour of Treetops to a GP in training and I felt very proud to show him around all the magnificent facilities on offer. He was certainly extremely impressed and remarked on the incredible sense of community and camaraderie he could feel. I think it is very often the case that people think that children’s hospices must always be very sad and tragic places, but this couldn’t be further from the truth at Treetops.

It was good to see that Tilly was very much on the mend and had spent the morning making flapjacks with Daddie. It was a great pleasure to send Tilly off to school on Tuesday morning and I was able to go along to the Caudwell Children’s offices and try and lend a hand with whatever was going on. I love being with the Caudwell Children Team, and always leave feeling really ‘charged up’ as they are so dynamic in their approach.

The ‘Airways’ Team came by and adjusted Tilly’s ventilator as a recent sleep study showed that more support was required when she ‘dipped’ in her oxygen levels overnight. I was then treated to a super night’s sleep Sue from the Team came and did a night sit.

It was wonderful to be able to accompany Tilly on a Geography Field Trip to Carsington Water, near Ashbourne. We travelled in the accessible mini-bus with a few other children and the majority of the classes went on a coach. It was cheaper to the travel this way as coach companies are entitled to charge a premium for their wheelchair accessible vehicles. I can’t believe that this is quite legal these days, but apparently it is, which is quite remarkable. The extra cost for Tilly to travel with the rest of her schoolmates on the coach would have been £90.00 on this occasion. In her First School there was an additional charge of £40 every time Tilly travelled on a coach.

However, we did have a super time pond-dipping, sketching, examining habitats, all of which was fully accessible for Tilly. The major challenge was the cold as Tilly’s hands became so cold that she couldn’t drive or hold a pencil. This is a constant winter problem as Tilly finds wearing gloves so difficult as her finger-tip controlled joy-stick is so sensitive. The closest we come is cotton, finger-less gloves which do help a bit, especially with those little sachets of hot crystals fixed to the palm of her hand.

It was great to see Tilly back in the pool again, but once again, Tilly struggled to stay warm as the water temperature was low. We’ve tried wet-suits but they do restrict Tilly’s limited movements, which in turn, doesn’t help stay warm. I’ll have to look into what’s available this season.

Tilly has pedalled for up to an hour nearly every day on her exercise machine which
is brilliant, as she is not only getting fit, but whizzing through her reading books.

Poor Candice got a shock at Church this week when she was called up, unexpectedly, to do the first reading which just happened to contain many difficult to pronounce place names. Normally we’ve practised the reading during the week, but for some reason, we had not noticed that it was Candice’s turn. Candice walked slowly to the lectern, skimming the words on the way, those who’d noticed she’d been caught short offered up a prayer and I held my breath. No need to worry – Candice read like a dream, and was heartily congratulated by all for her achievement. Bless her, and to think that Candice had received speech and language therapy in her early years to help manage a stammer.

The rest of the week-end was spent packing and preparing for Candice going off to Outdoor Pursuits Trip with School. Candice is so excited and I’m sure will get one hundred per cent of all the amazing activities on offer. Rolf and I are missing her already, and Tilly would like Candice to ring us every night and read us some Harry Potter!.

I so wish I was going along too, but I might just get a chance when it is Tilly’s turn as we did have some fun when we went on such a trip with the First School

Rudyard Sailability had some good news that out of a field of seven hundred entrants it has been chosen as one of three finalists for a national award from the Directory of Social Change. The winner will be decided by public vote, so I do hope that readers of this Blog will kindly consider voting for Rudyard Sailability and take a few moments to visit
http://www.surveymonkey.com/s/PZCNNZW?dm_i=6S7,9D3S,2LKRBY,QFOV,1

Many thanks,every click will help.

Time Will Tell

2010-10-08T23:09:00.017+01:00

Last Sunday morning was D-day for Rudyard Sailability. A call had gone out to all Volunteers to come forward and move out the last of our stock from our dilapidated shed into a winter store, so that the building could be removed to comply with the local Council's Demolition Order. It is planned that we will build a fully-accessible boat store with changing facilities ready for next season. It is a tall order, but, time will tell if we're up to the challenge.

Through the 'monsoon' I could hardly believe my eyes when I saw the designer wellies and smart motors of two of our most hard-working Trustees, and their husbands, skidding through the liquid mud of the lakeside path. They could have been at home leisurely thumbing throuh the Sunday Press, but they had, instead, made their way to help. As it happened, they were the only two Volunteers that had heeded our call on the day. I stood in awe as they wrestled and hauled cobweb-infested bits of Club 'ullage' into their shiny cars. Charlotte Atkins and Anne Morris have worked 'in the background,' legally and politically, over the years for Rudyard Sailabilty - neither of them sail or have a family member who uses our facilities. Between them they have donated many hundreds of hours and many thousands of pounds worth of their expertise to our charity. They are remarkable; they sit on opposite ends of the political spectrum; and yet here they were, saturated shoulder to saturated shoulder giving of themselves to help others. There were no cameras there to capture their contribution and no campaigns to fight - just a job to do - a remarkable testament to their calibre and an astonishing testament to the power of Sailability.

On Monday, once I'd done the 'U' bends at the B&B, I spent most of the time creating a 'clothes mountain' on the bed as I tried to find an outfit that would carry me through my five minutes talk, as a Caudwell Children Ambassador, at the Irwin Mitchell Party Fringe Event at the Conservative Party Conference. Outfit chosen and laden with fortifying talisman, my big sister, Chris, sent an email with such words of love and encouragement that made me feel so 'charged' that I realised that it didn't really matter what I looked like, it was what I had to do that mattered.

Trudi Beswick, CEO, Caudwell Chldren and PR Manager, Ben Sutcliffe scooped me up and drove me to sunny, swishy Birmingham to take up the challenge. I had a strong message to deliver on behalf of Caudwell Children, with just five minutes to do it in. I had to influence the hearts and minds of the MPs present and inspire them to see the benefits of working with the Caudwell Children and to persuade them to see that in such precarious times there is a need for 'working together'.

The event took place in a seriously glamourous art gallery, Castle Fine Art, - not at all what I was expecting - with champagne and canpapes. It all seemed rather surreal. I could feel the tension beginning to mount as my slot drew nearer. I began to wonder if I was really equal to the job. Fortunatley, I engaged with a fabulous lady called George from Acorns Children's Hospice who, just like my big sister, filled me with belief that I could do it. The event was filling up and I was pleased to see that amongst the MPs present was our local MP,Karen Bradley, who immediately pledged her support for Caudwell Children.

The first speaker was Anne Milton MP, Parilamentary Under Secretary of State (Department of Health). We were really heartened by her speech, and encouraged to hear that she had been a nurse for twenty years before getting into politics.

Next up was David Strudley, CEO, Acorns Children's Hospice who clearly and carefully outlined the brilliant work of hospices and the need for continued Government support.

With my heart fighting to leave my chest; and my lips welded to my teeth, I took to the podium, wishing I'd written the speech down as I was now sure that I wouldn't get it right. I took a deep breath and, mercifully, all sense of nerves left me and I could hear my words filling the room and could see that they were being well received.

My presentation was based on the well-used "Welcome to Holland" 1987 piece of writing that comfortably and conveniently explains what it might be like to have a child with a disability. Basically, the metaphor suggests that planning to have a child is like planning a trip to Italy, but en route the family are informed that they must go to Holland instead. "Holland" is described as not being a bad place and all the family have to do is to get new guide books and make the most of this place which is really rather quite lovely - not "Italy", but not that bad. Families are informed that they will never get over the pain of not going to "Italy", but they have to live with it, as they will never make it to their original destination.

I have lived with this reassuring explanation for years, taking comfort from the notion that it is OK for us not to go to "Italy", and the audience were nodding with approval at the analogy.

Then I told them that earlier this year I shared the piece of writing with my husband and he said, "My plane crashed landed into Holland." The shock of Rolf's response made me revisit the whole concept that it is somehow acceptable that some famlies must settle for less of a life than others. During my talk I invited the audience to take look at the 'Arrivals Hall' into "Holland", which includes all people from all walks of life, feeling lost, afraid, confused, over-burdened by luggage that was never packed; horrified at the disappearance of a sibling; coping with the absence of a partner and the trying to make sense of the signs leading to Hospice Care, Surgery, Orthotics, etc rather than the usual expected fun-filled destinations. The room was very quiet as it seemed that a new vision of "Holland" was emerging and a myth was being evapourated.

I then told the true story of Tilly's remarkable dream - she was looking for Candice who had wandered off to Italy without her. I recounted how I'd gasped in sadness at this apparent mirroring of our life and then Tilly piped up, "so off I went to Italy and found her!" It was like a light coming on. I instantly realised that Tilly has received the support that she needs from Caudwell Children, Treetops, Home-Start, Rudyard Sailability, etc, etc and she has been re-routed and made it to "Italy".

Carrying on the metaphor, I explained that the Caudwell Children have been making their way into the "Arrivals Hall" and managing to get families such as ours to the Transit Lounge and then to the Departure Gate for "Italy". This is an expensive, and unnecessary diversion that needs managing, and is critical if families are to make it to "Italy". Caudwell Children's aim is to avoid these costly 'lay-overs' and arrange for a direct flight, with all the care and support needed, to faciliate a safe landing into "Italy".

I asked if anyone was prepared to join Caudwell Children in such a life-changing 'flightpath' and a resounding chorus of "Yes" filled the room.

The Charity does not yet have a date in the diary to meet with the Government to discuss future partnership work, but it is hoped that such a discussion will take place. Time will tell.

Since the giddy heights of the Party Conference I've come down to earth with a bump as Tilly has succombed to a nasty tummy bug. Poor little soul has tried so hard to get better in time for the vaious activites planned,such as a Chess Tournament, the School Disco, Swimming and Shopping. In spite of Tilly's best efforts she has spent the last four days in a darkened room, drifting and dozing in and out of consiousness, with the suction unit in constant use. Tilly's breathing does not seem to be affected, so hopefully it is just a matter of waiting until the virus passes. Time will tell.

Machine Magic

2010-10-01T22:13:00.010+01:00

Tilly has now recovered from her first cold of the season, and it leaves us all quaking and feeling, “it’s that time of year again”. Tilly’s weak muscles result in an inability to cough which means that the slightest sniffle can result in an emergency admission to hospital for intravenous anti-biotics; intensive chest physiotherapy and possible intubated ventilation. Living with the threat of serious respiratory illness is constant, but greatly increased during the winter months. Tilly will take a daily dose of preventative oral anti-biotics throughout the season which, unfortunately, adds to the morning’s stresses as Tilly is rather reluctant to take medicine. These respiratory crises are very traumatic all round and so we do everything we can to avert such an episode.

The first thing we do is withdraw Tilly from school and all activities and start a course of anti-biotics which we keep in stock. Tilly has learnt to take them in tablet form which is better than the syrup, but is still a stressful challenge. I tend to sleep downstairs with Tilly whilst fighting off the lurgy as there is often and increased demand for oral suction and monitoring during the night. Since the age of three Tilly has slept using a night-time, non-invasive ventilator which bellows her lungs with air and helps keep them clear. The pressures on this machine can be increased during a chest infection to improve Tilly’s breathing capacity. I couldn’t believe the change in Tilly’s general health once she was put on this therapy and would thoroughly recommend it sooner rather than later.

Tilly’s heart rate and oxygen levels are also always monitored overnight by a toe probe and are a great indicator if things are starting to go wrong. An alarm will sound if Tilly’s levels are entering a danger zone.

Tilly will have daily sessions of chest physiotherapy starting with ventolin or a saline solution delivered by a nebuliser mask to loosen up unwanted secretions; a session on her Hayek oscillator or “Shaker- Maker” which, via a shell shaped piece of plastic strapped to Tilly’s chest, rattles up Tilly’s upper body and moves secretions up to throat and then delivers impressive compressions to achieve coughs.

Tilly then has an Emerson Cough Assist machine, which is forms a seal over her nose and mouth and blows air down her throat and then hoovers back any lurking ‘rubbish’. Tilly then expertly uses her suction unit to remove any remaining yak which could go on to cause pneumonia. Simples!

However, if all this section management fails and Tilly has difficulty in breathing then we do have a cylinder to deliver a limited supply of oxygen whilst calling the Emergency Services to rescue us. The local First Responders usually arrive before I’ve finished booking the call. Tilly has ‘Open Access’ to North Staffordshire Paediatric Intensive Care Unit and they have managed her care brilliantly over the years, but, as much as we love them, we do our level best not to make an emergency visit.

Whilst Tilly was fighting off this latest infection, Michele, Tilly and Candice’s Godmother, and I created a floral offering to place in the ‘children’s window’ at Church to celebrate Harvest Festival. Floral art is certainly not my forte so it was great to have Michele’s support. We placed a Christmas shoe box at the centre of the piece to remind everyone that this year we were supporting Operation Christmas Child. I think we got away with it!

We were treated to a visit from Grandma, Uncle Mike, cousin Amanda and Grace - the girls' cousin and God-daughter. Rolf's family live a couple of hours away so it was so magical to spend some special time with them, and Grace just lit up every room. It is such a shame that we live such distance away and don't get to spend more time with them.

It was with great excitement that Tilly took delivery of her new Medicotech exercise machine that has been generously funded by Muscular Dystrophy’s Joseph Patrick Trust. Primarily, this equipment will deliver a passive work-out for Tilly’s arms and legs and give her a good cardio-vascular work-out, as well as improving her circulation. However, the machine is designed so that Tilly can contribute and her input will be recorded and reported back to her at the end of the session. It is brilliant! We have already noticed that Tilly can bend her legs so much easier than before, as they had become rather stiff following surgery in May. The idea is that Tilly can drive into her machine and exercise her arms and legs as often as possible, even whilst watching Hannah Montana! It is quite transportable so I could even take it into school for Tilly to work on during ‘inaccessible ‘PE lessons.

Wouldn’t it be great to see such a machine in other settings such as leisure centres, care homes, day centres or hospices? The opportunities are quite endless as they can be adjusted for different users, and the rewards could be phenomenal.

We somehow made it into school for Tilly to have her ballet lesson with Miss Jeanette which left me brimming with tears. Tilly uses her arm support to dance which have now been adjusted so that Tilly can drive with them in place and it is just such a joyous sight to behold. Who’d have thought that Tilly would be working on her third British Ballet Organisation award? Just need to create an outfit for the exam which will probably involve Tilly’s faithful and creative Godmother and her sewing machine again!

Unfortunately, with all the early morning rush and trying to remember everything (suction unit, arm supports, school bag, lap top, dinner-money, reading book, splints, etc) I forgot Tilly’s boots which cover her splints! Tilly’s feet are encased in rigid plastic ‘ski-boots’ around the clock to try to slow down deformities which occur due to her muscle weakness. They are not the prettiest objects but they do a good job and normally Tilly would prefer them to be concealed beneath boots. Fortunately, it seems that Tilly is now so comfortable with herself at school that she didn’t mind spending the day showing off her pink butterfly splints. I think this might be a good sign?

This has been rather a hectic week with a whirl of extra activities to squash into the Griffiths' already busy schedule. Candice has been busy almost every evening with cross country, chess, netball, guides and ballet and has had to get up at 0600 to keep up with her homework.

Daddie has been busy looking after our B&B, including annual improvements, whilst keeping up with the ironing, shopping and creating the most delicious meals for us. He also went to a meeting at Westwood College where the girls will go next and was most impressed with all the work they have done to make it wheelchair accessible. Rolf has also had to 'hold the fort' whilst I attended my Governors' meeting which have kicked in for the new school year.

Rudyard Sailability has had a wonderful last week of the season with the local Special Schools and I was thrilled to be able to assist with their enjoyment. One more session to go before our dilapidated shed is emptied and pulled down. Work is starting on our new building very shortly, but we are still desperately seeking a secret millionaire to get the job done by next Easter. Anne, one of our Trustees and Legal Representative, put on a fashion show in support of the building fund and we glammed up and went along to help raise some pennies. The evening was a glittering success enjoyed by all. I was especially proud of Tilly who took the microphone and thanked Anne and all present for getting the Charity this far.

I spent some time with members of the Caudwell Children Team discussing the content of the five minutes talk that I, as an Ambassador of the Charity, will deliver at the Conservative Party Conference next week. I feel very honoured and privileged to be given this opportunity and am aware that I will be a very small cog in this giant political machine. We are hopeful that my presentation will have an impact on the audience and bring about new ways of supporting families of children with disabilities.

Five minutes isn’t very long, so perhaps I should politely request that Andrew Lansley, Secretary of State for Health, meets with the Caudwell Children to explore opportunities to refine the political machine so that it will run more smoothly and effectively to release and serve the families who have become crushed and jammed in the works?

God's Always Listening

2010-09-24T16:30:00.011+01:00

The Special Matters’ Support Group was especially welcome this month as we were treated to a visit by members of the Moorlands Therapists. This group volunteers their therapeutic skills to those living with disability, once a month, at a local ‘drop-in’ centre. How inspired is that? I enjoyed a ‘non-contact’ Reiki massage which seemed to help ease the emotional pressure that had been building up over the last few weeks. The therapist also concentrated on my lower back which is showing signs of starting to ‘give’, probably a result of recent stresses on my mind and body. As any carer will know, the threat of a back problem is a constant nightmare so I am actively working with exercise and anti-inflammatories to make sure my back improves. I could really do with trying to shoe-horn yoga back into my life.

Back issues aside, I’ve always said that it would be marvellous if someone would come around every now and then and throw the vacuum cleaner around our house and dust off the surfaces. I am, of course, fastidious about cleaning our Bed and Breakfast rooms when I am on ‘U’ bend patrol, but I’m afraid that our own accommodation often looks like we’re getting ready early for Halloween –complete with cobwebs! It’s not that I don’t care; it just that I can’t seem to find the opportunity and become overwhelmed with all the extras that a family such as ours has to deal with, and it can get you down. Amazingly, it seems that the Caudwell Children Charity has spotted this need and is offering a cleaning service to local hard-pressed families, staffed by volunteers. How inspired is that? I suppose I could be whizzing round the Hoover instead of writing this Blog!

The girls started back to Guides which was wonderful, especially as Tilly was able to take her best friend along and I was able to leave them there for the first time with Laura from the AMG Caring Agency. Now that Tilly’s Carers feel confident to use Tilly’s suction unit in the case of a choke I do not need to wait around ‘just in case’ which feels good and gives me a possible hour or so to attend to the housework!

It also felt good to welcome Eileen, from the Children’s Airways Support Team, to do a ‘night-sit’. This meant that I could sit up late with her and catch up on the news and then go and have an uninterrupted night’s sleep knowing that she was keeping an eye and an ear on Tilly. These, sometimes weekly visits, are a real tonic and seem to occur just when I need them most.

I enjoyed a joyous sail with a young girl from a local special school at one of Rudyard Sailability’s sessions. Although this little soul is non-verbal her smile and whoops of delight spoke volumes. I also had the great pleasure of sailing on the electronic boat with one of our Wheelies’ Sports Club members. His sailing skill and expertise using the finger-tip controls was phenomenal, and in spite of his considerable physical challenges we powered our way to the top of the Lake in record time. Although there was complete communion in the boat as we raced across the water, this young man relies upon sign language for communication and it made me realise that it was time for me to learn. Bang goes the dusting!

After a skiddingly hectic Saturday including swimming, rowing, sailing and piano it was an absolute delight to settle down with one of my friends from long ago who had kindly mountaineered up from Surrey for a catch-up. I feel so blessed to have such treasures of friends who have kept in touch over the years. We were treated to exquisite Champagne and Rolf served up the most delicious meal of chicken wrapped in pancetta. Good food, good wine and good company – all the classic ingredients of a perfect Saturday night. We managed to behave this time and not stay up all night slurping wine and chatting and actually felt half human the next morning which was most refreshing.

After a family brunch we waved a fond farewell and spent a chillaxing sort of Sunday, doing homework and filling the ‘Operation Christmas Child’ shoe boxes with presents ready to take to Harvest Festival next week. I even managed to throw the Hoover around before being treated to one of Daddie’s scrumptious beef brisket meals with Yorkshire pudding and catching up on the ‘X’ Factor.

After dropping the girls off to school on Monday, I whistled around the rooms taking care of the ‘u’ bends aiming to be ready before the arrival of our very special lunch guests – Ian and Mary Parker. We have enjoyed the Parker family’s friendship for some years now following being advised to go to one of Ian’s Exhibitions at the Victoria Hall, Hanley. We were charmed by Ian’s work and marvelled at his skill and ability of creating such magnificent art whilst holding the paintbrush in his mouth -to see more of Ian's work go to http://www.ianparkerart.co.uk/ Rolf and I were equally charmed with Ian’s twinkling personality and Mary’s genuine warmth and soon become firm friends, enjoying family days out with them and their two girls. Rolf served a scrumptious lunch in the dining room, basking in the splendour of Ian’s snowy 'The Bridge at Chatsworth’ which we are proud and privileged to display ‘for sale’ in our B&B.

Tilly, Laura (Tilly’s PA) and I motored down to Birmingham Children’s Hospital to have a consultation with Tilly’s bone density specialist. Tilly has been receiving regular infusions to reduce the risk of spontaneous fractures as brittle bones are one of the symptoms of Spinal Muscular Atrophy. Unfortunately for Tilly this process so far has been very traumatic and painful as the medical team find it almost impossible to locate a suitable vein. Tilly has been having a course of therapy from a wonderful Psychologist who has been working on ways of Tilly coping with this issue. Tilly was all revved up and ready to go yesterday, only to find that the infusion was not actually scheduled and it was only a consultation. This situation was met with a mixture of relief and disappointment on all sides, however the infusion and a bone scan will be scheduled during the half term holidays so that Tilly will not have to miss another day of school.

We got home from hospital to find my lovely friend from Melbourne who’d come to stay with her daughter and her friend and daughter. Quite amazing really as I’d been saying to Tilly over the summer how much I missed my girlfriends from days gone by and, it seems that the Lord was listening and has sent over a veritable wave of ‘old’ friends over the last few weeks, from all corners of the globe, to top up my ‘special friends-ometer’. This is obviously what can be called a real 'Godsend'!

The Power of Love

2010-09-18T06:00:00.003+01:00

The luxuries of the summer holidays seem a faded memory as we settle back into the school routine. It is hard to get up at 0500 to make it out of the door by 0815, but at least we have the pleasure of Candice reading to us whilst we get ready. This reading opportunity is the most marvellous distraction for us all – Candice has read to us all of the Chronicles of Narnia and is now on the 4th in the ‘Potter ‘series – she is a gem!
We spent last Saturday helping out Rudyard Sailability who was hosting an “Aiming High for Disabled Children” session. This was the last of a long series of visits by this Government funded project and it was wonderful. Tilly rolled on to the wheelchair-accessible safety boat and helped out with rescue with her helper Jess; Candice took out two sailors and I helmed a bell boat with ten paddling passengers. The sun shone, probably for the first time for this group, which was an added bonus, as we have not been blessed with good weather and have lived in our waterproofs all season.

Still, the rain didn’t dampen anybody’s pleasure and the Charity has welcomed over two thousand visitors this season which is fantastic. We’ve just got to get through the next couple of weeks working with the local Special Schools before our current dilapidated boat store is demolished, as per the local Council’s Enforcement Order. Our stock will go into store, but we have plans to build a new ‘flagship’, fully-accessible boat store ready for a grand opening next Easter – we’re just short of the £400K needed to do so. All at Rudyard Sailability believe that we have the power overcome this significant barrier, and are willing to consider any suggestions – www.rudyardsailability.org.uk
The girls were back at the piano early Sunday morning with Fleur, their teacher, and were relieved that they hadn’t forgotten everything over the holidays. They are both at Chess Club, at the moment, and felt reluctant to go along convinced that they have forgotten how to play that too! It’s amazing how quickly we can feel unsure of ourselves. I’m sure they’ll be fine once they get going.
At Church we learnt about the Children’s Christmas Shoe Box Appeal http://www.operationchristmaschild.org.uk/ and have set about loading up shoeboxes with Christmas gifts ready to take to Harvest Festival which will then be sent off to Romania. Most children in our society have so much in excess of everything, it is hard to believe that there are so many thousands of children, not so very far away, who have so very little. We are certainly very privileged indeed, and I constantly thank God for all our blessings and remind the girls too on a regular basis.

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Daddie’s meals, ‘like a proper family for once’ were such a joy as the school term is so filled with activities that we rarely manage to eat together during the week, and they were flavoured also with the welcome return of family favourites Strictly Come Dancing and The X Factor

I’ve been in for a session with Simon from the Design Team of Caudwell Children to work on the last few items of Tilly’s book, Tilly Smiles. It seems that the finger is hovering above the ‘print’ button which is very exciting.

I attended the funeral of little Jack, aged six, who had drowned whilst on a holiday in Mexico. It was just as anyone would imagine it would be – heartbreaking and highly emotional. It seemed impossible to be able to celebrate the life of this beautiful little boy until his Daddy got up and told us little stories about his little lad’s character. Jack’s Mummy got up and told us what a happy little boy Jack had been, and how he’d made everyone else so happy too. Jack’s young sister (Tilly’s friend) got up and told us that she would never forget ‘her bro’ and would say hello to him every day. Jack’s amazing little spirit had given his family the power to lead the way and celebrate the life of their child, and they did him proud – a supreme tribute to a sparkling little boy. The rain hammered down outside from leaden skies, but inside, the Church was filled with a glorious outpouring of love that is almost too deep to describe.

Sometimes there are no words

2010-09-10T15:10:00.019+01:00

The girls are settled back into school and I've found a little time to visit Blogsville again. The six weeks off were fabulous, but they certainly flew by.

One of the most amazing highlights was Tilly being invited into the Caudwell Children offices on the pretext of doing some routine PR work. Rolf was in on the surprise that Tilly was to be presented with her Soulscape that Louis Parsons had painted for this year's Butterfly Ball. This beautiful 5' by 4' masterpiece was purchased for a staggering £120,000 for the Caudwell Children to buy powered wheelchairs for children with mobility needs like Tilly. As the picture was carried into the room, the air was charged and the room fell silent. It is an awesome piece of artwork that commands attention and wonder. The owner believed that the artwork belongs with Tilly. This priceless act of generosity left me speechless - there can be no more precious a gift than a representation of your child's soul.

Tilly is thrilled and Candice thinks it is 'cool'. Daddie tried to rearrange the Hannah Montanna posters around Tilly's bedroom to accommodate the artwork there, but he eventually reorganised the dining room; allocated an empty wall; and now Tilly's Soulscape stands in pride of place for all to see. Our B&B guests can't believe their luck that they too get to enjoy such a remarkable piece of art.

On the way to 'Nana's' for our annual seaside holiday in Wales, we met up with a special friend and her five children, in the rain, at the Black Country Museum near Birmingham. In spite of the inclement weather, it was pure joy to meet up at such an interesting place and catch up on the news. Nix and I shared an extraordinary chapter, exactly twenty years ago, when as BA Cabin Crew we were both caught up in Saddam Husain's 'human shield' in Kuwait during the Gulf War. The events, traumas and experiences of those scorching days couldn't be more different from the challenges that we both face today, and although we did not mention our unique anniversary, the feelings and emotions that we shared were, and will always be, an unspoken, communal landscape for all our talks.

In steaming, saturated anoraks and with soggy sandals we battled on our way in the dark and swirling rain, through clouds of motorway spray, to visit my sister in the Cotswolds. We'd packed kitten-heels and sarongs and imagined that we'd 'click-clack' and float our way down, in the setting summer sun, to the local elegant hotel; climb upon a tall stool and 'chink' a glass of champers. Sue and I had been promising ourselves this moment for eighteen years. The elements had different ideas, so my wonderful sister recreated the glamour and glitz of The Lygon, in her own kitchen, and following hot baths and beautifying, the most magical and special evening was had by all. What can I say? Chin! Chin! To Sisters!

The next day dawned with unseasonal stormy conditions as we set off to the Costa del Bridgend. The highlight of the journey for the girls was their first crossing of the Severn Bridge. I wound the windows down and the gale-force wind filled the car with adrenhelin; took our breath away and and sent my hair up into a temporary beehive. The whole way across, us three girls 'yahooed' to outdo the noise of the howling wind and celebrate our arrival into Wales. It was very exhilarating, even Candice thought it was better than a roller-coaster ride. As we rolled along I noticed the astonished looks of the other drivers at our spontaneous outpouring. When we approached the barrier the kiosk attendant asked if I had anyone else in the car with me as they couldn't see anyone through the tinted glass! I cringed as I realised that I must have looked a proper Charlie without the solidarity of the girls yahooing alongside me! I'm surprised they let me in!

We arrived at my lovely Mum's, and spent the next hour getting all of Tilly's equipment moved in and in place. There really is an unbelievable amount to take along, even for a short break. With the weather against us we opted for trip to the local shops instead of the beach and Tilly was treated by Nana to a pair of silver high heels! There can be no greater joy for such a little girl! Tilly actually slept with them beside her and actually dreamt of them. A fair swap for her usual plastic splints that she needs to wear 24/7, and to be enjoyed only on high days and holidays.

We were then blessed with sunshine for the rest of the holiday and so we spent every day at the seaside complete with wind-breaks, all-terrain buggy, fish and chips, ice-creams, donkeys, sandy sandwiches, funfair, slot-machines, bingo, etc,etc. We were joined by various family members on different days, but sadly Daddie wasn't with us as he was left at home, as usual, holding the fort! Candice was a star and zoomed across the sand with Tilly, splashing through the waves and exploring the rocks.

We stayed at the beach until the sun went down and enjoyed lovely evenings with my brother and sisters catching up on all the family news. We were introduced to 'Millie', a ten week old golden Labrador and naturally, we all fell hopelessly in love and toyed with the idea of 'dognapping' her back to Staffordshire. My lovely Mum and Auntie Val worked tirelessly to ensure that we all the best summer holiday ever complete with picnics and faggots and peas!

During our holiday we received the harrowing message that a friend's little boy had been drowned whilst on holiday in a paradise resort in Mexico. There are no words to describe the impact of such news as I am sure that only time will bring any sort of recovery. We have put the family in touch with our local Hospice, Treetops, who have offered to help in whatever way that they can. I don't think that many people realise that most hospice's will do their best to help any family who has to endure the agony of the loss of a child, whatever the circumstances.

On another day we made an expedition through the valleys up the mountains where we hand-fed the wild sheep and scaled a mountain. It was majestic and so uplifting to see Tilly making it to the summit with the valiant strength and determination of her cousins who took charge of Tilly's buggy. Later that night, Tilly's choice of song in the shower was naturally, "You raise me up, so I can stand on mountains.." It was choking to hear how much Tilly appreciated her ascent and her words served as a timely reminder that we can all be 'lifted' in many different ways, when we need it most.

It was wonderful, however, to be home again with Daddie who had moved his own mountains sorting out the house, business and garden whilst we'd been away having fun. We all enjoyed a very special family day out to Treetops Has Talent, where Candice played the piano and Tilly sang, "What About Now?", by Westlife, alongside other brave souls who wowed us with their performances. This is definitely a top day out and a firm favourite with Tilly who plans on being a pop star one day and is working on her repertoire!

The girls have also enjoyed a training session with Rudyard Sailability and have made good progress towards their Royal Yachting Association, Stage 3, which is wonderful. We squealed our way through a very lively sailing session with Tilly's finger-tip controlled 'Barbie' Access dinghy coursing along on its side with her pony-tail dipped in the Lake. My heart was in my mouth! Tilly loved it, and is even more determined to become an Olympic competitor of the future - no doubt between recording contracts! I bow down to Tilly's incredible ambition.

The return to school with its early morning scrabble has been quite painless, but made a little more challenging with a 'sleep study' for Tilly for a routine check on her respiratory condition. We pitched up at Intensive Care bathed and in pyjamas at 8pm - got Tilly all 'hooked-up' by 9pm and then amazingly were on our way out of there by 0630 the next morning. Tilly's only regret was that she didn't get to spend more time with the Nurses whom she adores.

The week-end has arrived and it will soon be time to enjoy Daddie's fish and 'African potatoes' like a proper family for once. The time has arrived for a sweet vermouth on ice with a slice of lime. Need I say more?

Guiding Stars

2010-08-24T16:49:00.002+01:00

I’ve just had a long hot bubble bath and find that at last I have some time to visit Blogsville which can mean only one thing – I’m at Treetops, the Donna Louise Hospice, on a respite break. The girls are downstairs immersed in all the fun of a supersonic sleepover, including a visit from Bertie, a Daschund from the Pets as Therapy, and I’m upstairs with sweet vermouth on ice with a slice of lime and a box of chox! Bliss!
The summer holidays are hurtling by and have been jam-packed with a myriad of activities and events, peppered with the odd days when the girls could chillax and enjoy ‘breakfast in pyjamas, in front of the box’. (I remember it well)!

Candice went on a Girlguiding Camp for a week with 1200 others in Shrugbrugh which was brilliant and a testament to the phenomenal organisational skills of the volunteers involved. Nana, Tilly and I spent a day with them and were all blown away with just how hard they’d worked to include Tilly in all the fun and practicalities. We were fortunate enough to have a special friend, and Girlguiding member, Sally, come along to support Tilly on the day. I was, as ever, humbled at the selfless commitment and enthusiasm of the leaders and we spent the day working out just how we’d manage getting Tilly to camp when her turn comes around. I can’t wait!
The Rudyard Sailability summer events calendar has been choc-o-bloc with a wide variety of visiting groups living with a wide range of disabilities. We used Tilly’s direct payments to support Tilly with Carers during these days which have been mostly very wet and exhausting, but always incredibly enjoyable and uplifting. I am always moved by the reactions of all who visit, and never fail to gain an insight into the world of disability, but I was particularly struck by the overwhelming devotion of the PHAB (Physically Handicapped and Able-Bodied) Camps who brought their young charges up to us from Birmingham during their week’s residential camp. Not only do these people give up their time to give these young people an unforgettable experience, they also spent the day in outrageous fancy dress. I salute them, and all who commit themselves to others in such a magnanimous way, but I am sure they would tell me that they are the ones who gain the most.
Tilly has had some wonderful sailing sessions, which has really tested her skill, confidence and the boat’s electronics, especially in ‘sideways’ rain, gusty conditions and a squall. Tilly loves it and even dreams she is sailing and can’t wait until the next time she is at the tiller. Here’s hoping that my ‘mummy-ometer’ is up to it, as my toes curl, my heart races and my blood runs cold every time Tilly takes to the water. I wonder if this will ever pass.
Following weeks of organisation with the Children and Airways Support Team Tilly welcomed her special friend Chloe for a double-night sleepover extra-ordinaire! Chloe is fully-dependent on her tracheotomy and twenty-four hour care. However, this beautiful little twelve year old will not let this situation prevent her from engaging in all and every activity that comes her way. Chloe has been blessed with an insatiable hunger for fun and is fully supported by a dedicated team of Carers from CAST who will work their socks off to make sure that Chloe is always ‘replete’.
This adventure started at Telford Ice Rink where the girls were joined by another friend, Dan, who lives in a similar situation, and were welcomed with open arms and special care by the exemplary Manager, Jason Griffiths. The three amigos whirled around the ice effortlessly, towing their shrieking ‘Bambis’ behind them. It was priceless and Tilly was especially impressed as her two pals were driving their chairs using head controls. I expect the other skaters who were visibly inspired and amazed will not forget the day in a hurry either. Tilly can’t wait for the next trip to the rink.
The trio finished the day at The Boat Inn, Cheddleton, where the welcoming Manager, Chris Massey, moved ‘hell and high water’ to accommodate the three diners in their rather large twenty-stone wheelchairs. My heart swelled in admiration as the indefatigable Chris would have been quite happy to completely remove the solid oak door from its ancient hinge; to relocate an ‘awkward’ table to the patio, and to render the restrooms inaccessible in an effort to seat his guests. Fortunately, with a bit of careful manoeuvring everyone had a great evening leaving this wonderful ‘olde worlde’ pub in one piece and, fortunately, access to all conveniences. Amazing what can be achieved with expert management.
With ace teamwork with the CAST team we got the girls into bed where they snuggled down with a box of chox and a DVD. I was blessed with Eileen to night-sit for Tilly, so I snook away at 10 pm and left them to it. It had been a truly unique time.
On the second day we all met up at the Lake and we were thrilled to see our new friends on the Lake onboard the wheelchair accessible safety boat. They both loved it, especially when Dennis pretended to run out of petrol of had one of the Parents and Carers woefully trying to paddle the rescue boat back to shore. We were howling! At Rudyard Sailability, we are aiming to have a specialised sailing boat that could be accessed by those preferring not to leave their wheelchairs. I can’t wait.
Tilly’s sleepover with Chloe was filled with all the usual ingredients of pizza, manicures, DVDs, midnight feasts, and Monopoly, but made all the more heart-warming as it was shared by very special friends who share a very similar perspective on life. As usual, I learnt a lot from two wise little girls and their mate Dan.
The holiday so far has been peppered with other sleepovers and trips out for everyone. Candice roller-coastered her way around Blackpool for the day with the Treetops sibling group and met up with the gang that went to the Children’s Adventure Farm Trust holiday last year. Candice also went with the Young Carers to Drayton Manor and topped up her roller-coaster-ometer and, once again, caught her with her ‘special’ friends. I am immensely heartened by such devotion to siblings of children living with disability.
The Caudwell Children have a slightly different approach and aim to provide a day out for all the family – “A Gift of a Day” – which is a precious gift indeed. We were invited to The National Space Centre, near Nottingham, and Rolf, the girls went along. Unfortunately, I had to stay home and attend to the B&B, but by great good fortune, our amazing friend Sally was free to go along in my place and a great time was had by all. It was especially good to see Rolf ‘out and about’ with the girls as he has been in charge of a lot of ‘U’ bends over the summer.
We did manage to send Rolf and the girls out to the cinema to see Toy Story 3 – Rolf came back destroyed! Apparently he was all right until the ‘hoppa’ scene! Rolf, like a lot of Daddies, gives the impression of being made of steel with a ‘bell on every tooth’, but underneath he is very sensitive and vulnerable.
We had a fabulous day at Rudyard Sailability with a sparkling family from the Wirral which was organised by Ben from the Caudwell Children. The Hughes family comprise of two daughters and two sons, and one of their daughters, Amy, lives with Cockayne Syndrome. It was so special to have some time together and share our stories. We paddled up the Lake in a 12 man canoe and indulged in a wonderful picnic that Jayne had brought along which included chocolate chip shortbread and fat juicy strawberries. The sun shone and we could have talked until the stars came out – I felt like I’d known them all my life.
We had a magical flying visit from two very special friends who were back in the UK following the death of their precious Daddy, Patrick Keyes. I have known Sarah and Mary for hundreds of years and it was a treat upon treat to have them make time to see us. Rolf was brilliant, and laid on sumptuous meals and picnics fit for Royalty. We managed a sailing expedition and a shopping op which was perfect. We all stayed up far too late; cried buckets; laughed like drains and caught up on all the news. It was just the tonic.
There are many people I’ve come across, some I’ve known forever and some just fleetingly that, unbeknown to them, serve as guiding stars. This summer alone the sky has been filled with them!

Balancing Act

2010-08-04T07:15:00.003+01:00

It's always a good feeling to get home to Daddie after a week-end away, but to return home to the delicious aromas of a home-cooked Sunday roast, and the sight of a mountain of freshly ironed clothes make it all the more wonderful. Poor Daddie had to stay and 'hold the fort' (one more time with feeling) whilst us gels were revelling at the JTSMA Conference. This can't be easy and is definitely a hazard of the B&B trade that leads to a juggling act for Rolf to try to manage the business; household maintenance; sorting wasp nests; conquering the ironing mountain; wheelchair repair; creating delicious and nutritious home-cooked food and being head of entertainment - all without transport as we only have one car. This situation becomes ever more trying over the summer holidays when the car disappears with alarming regularity and Rolf is continually on the end of the "U" bend duties. I certainly need to be mindful of this before I keep agreeing to all and every offer of activities in order to strike a happy balance.

We also try and juggle the time for Candice and Tilly to make sure that they enjoy a balance of activities together and apart. Last week Tilly had the most wonderful contemporary dance session on the stage of Victoria Hall in Hanley, organised by the "Aiming High for Disabled Children" project. It was a super session and Tilly was blown away with actually dancing on a real stage; having a juice-break in a real Green Room and seeing inside a real dressing room 'with lights around the mirror'. Candice, who was on a shopping trip with Nana, had told Tilly about such delights when she was doing a Shakespearean workshop at this theatre.
Tilly was lucky to be supported at this dancing workshop by her own Personal Assistant, Kirsty, who was inspirational, and I was able to 'hide in the wings'. I did peep out at the final performance and was moved to tears with the show. Breathtaking! Tilly just can't wait to get on stage again and is going to incorporate her arm supports next time for greater effect.

I will try to remember to take my camera with me as Tilly does use them to very successfully in her ballet lessons.

Tilly's psychologist came over and had a great session with Tilly and Laura (another Personal Assistant) and had a good chat about 'making friends' as this is something that Tilly can struggle with. They concluded that Tilly should continue with making positive efforts to make the first move to engage with others in conversations rather then waiting to be approached for a chat. So far this technique has been very productive and has improved Tilly's self-esteem no end. Tilly is supported by adults most of her time, so it is a sensitive judgement to give Tilly space to have ‘girl-talk’ with her mates, whilst keeping her safe. It seems to me that as time goes on Tilly’s PA’s will very much be her mates?
Candice was scooped up by the local Young Carers' Group last week to be taken to one of her favourite places on the planet - Drayton Manor. This amazing group has looked after Candice's needs as a sibling of a child with a disability for many years, but to take this 'coaster queen' to a theme park was right up her street. It is great that such organisations exist and work so hard to make sure that these Young Carers get a special treat every now and then. We all know that they certainly deserve them as the journey of the siblings can be treacherous at times.
Meanwhile, Tilly was treated to the arrival of Lucy from the Children's Community Team who came to support Tilly for the whole day at the Lake whilst we welcomed a PHAB (Physically Handicapped and Able Bodied) Camp. Lucy has been supporting Tilly for years and it was a day that Tilly had been counting down to. Whilst I was out on the Lake, Tilly was having her nails done and playing Scrabble and Uno with Lucy and Nana as the weather was not fit for Tilly to take them out for a sail on the electrically-controlled boat that she uses. This PHAB day was a resounding success thanks mainly to a brilliant selection of volunteer carers (all in fancy dress) who not only gave 110 per cent of themselves at the Lake but had committed to a week's residential with the group! Where do these heroes come from? I was awe-struck by them all.

Tilly had yet another fantastic piano lesson with Fleur using her magical Neater-Easter arm supports. We are all still reeling at the resounding improvement in Tilly's progress thanks to this equipment. Fleur has adapted some of the exam pieces to accommodate Tilly’s abilities, but who'd have thought it possible way back at the time of diagnosis for Tilly to be preparing for her first piano exam? Not me, but obviously Tilly had other ideas!

Saturday was another balancing act as we waved Candice off to her long-awaited and much-planned Unity Guide Camp with one of the other parents whilst I took Tilly swimming and then off to the Leek Show to support Rudyard Sailability. Rudyard Sailability was for once in party-mode at this annual event, celebrating success with planning permission and launching it’s 'buy a brick' campaign. It was a fabulous fiesta-style day that served to thank all those who have supported the Charity on its seven year’s journey to this point and to engage with the public to join in with the actual building project. It was a marvellous occasion with people genuinely delighted with our long-awaited success and keen to be part of the Charity’s future. Tilly and her PA Kirsty were supreme in their efforts to draw crowds into our tent and get them to participate in the fund-raising, and they also had time to disappear with Nana and delight in all the fabulous activities that the Show had to offer.

Tilly snored until nearly lunchtime on Sunday following the hectic activities of the week that was, and I left her there until she woke as I figured that there always has to be a balance between work, rest and play, especially for such busy little girl like Tilly.

THE CHERRY ON THE TOP!

2010-07-26T23:02:00.003+01:00

It took no more than a week to dry out after our amazing experience with the Guides paddling on Rudyard Lake in a deluge! The feedback from the soggy Guides has been unanimous – “wicked!” None of us will ever forget Tilly receiving her Blue Star of Merit Medal. Tilly has decided to call her beautiful soft and gentle Centenary Bear, (number two of only one hundred created to mark the occasion), Bailey, in memory of Tilly’s Brown Owl, Janet Bailey. Janet was an absolute Star during Tilly’s Brownie’s journey, (especially on our Brownie Camp) and the Bear will be a permanent reminder of such a special soul.

Preparation for Rudyard Sailability’s pitch at the Leek Show on 31st July has begun in a swishy eaterie in Leek called “Fat Olives”. Anne and I laughed until we cried; lapped up a huge cappuccino and even managed to get a bit of work done. We were only there for about an hour and I felt like I’d been on holiday as it was such a change of scene. I never cease to be amazed at people like Anne who is Rudyard Sailability’s legal representative and has volunteered hundreds of hours of her time to Charity. There have been many such heroes who have donated countless hours of their professional skills in this way when there is obviously no personal gain as such. I am involved in all that I do because of Tilly’s motivational force, but these amazing people do it because they can. I find this very humbling.

It was very obviously the last week of school as we were all bumping into each other and felt like we were running ‘on fumes’. I had the pleasure of joining Tilly on her school trip to Tatton Park Tudor Experience where we wound the clocks back five hundred years and immersed ourselves in the activities of that time delivered by ‘real’ Tudors. It was brilliant to see Tilly tentatively poking her little finger into the gloop of the wattle and daub; sporting a bowman’s bonnet and making some gingerbread ‘Tudor-style’. Tilly was included brilliantly in all of the events and her favourite bit was being the scribe with a feathered quill during a Manor House Court Hearing. Another highlight was the Falconry Display with birds sweeping over the tops of the squealing pupils heads with millimetres to spare.

Just can’t believe that Tilly has completed Year 5 and that Candice will be going back as a Year 8 – the top of the School. It has flown by. They’ve both had a fantastic year and have achieved great things both in and out of the classroom. There is no doubt that Tilly’s inclusion into St Edward’s Junior High has been a resounding success thanks to the hard work and dedication of the entire team. Tilly rounded off the year by being top of her division for Chess after persevering in a match that she looked destined to lose for nearly three hours. Tilly was thrilled to bits and was delighted to be given a trophy on the last day’s Assembly. My lovely Daddie always used to say, “You’ll win if you don’t give in!” Tilly is obviously a chip off the old block!

The air has been filled with anticipation not only for the last day of school, but because “Nana’s on her way!” Just like Aslan in The Chronicles of Narnia we can feel all tingly because Nana is ‘on the move’ and on her way to us.
Nana has come especially to help us at the Jennifer Trust’s annual conference which this year celebrates 25 years of helping all those who live with Spinal Muscular Atrophy. The conference is held in a posh hotel in the Cotswolds and gives us all the opportunity of getting together with our SMA ‘Family’ to eat, drink and be merry whilst we also learn, laugh, cry, play, share and celebrate. The sense of communion is overwhelming as we meet up with old friends from the Clan and welcome along new members. The over-riding feeling is that we are all in this together and have a deep understanding of the unique situation that we are all sharing. We have been going to Conference for eight years and never fail to be inspired and uplifted. I was particularly struck this year by the ‘baby-bugs’ – miniscule powered wheelchairs designed for tiny tots who would normally just be learning to walk. I was also struck by a mature lady living with SMA and a tracheotomy whose partner could ride on the back of her chair on a ‘boogie board’ for short distances instead of using his own wheelchair. The scene was quite sublime to witness and very touching.

We also learnt that clinical trials lasting two years for a drug to improve the symptoms of SMA may be imminent for non-ambulant patients aged between three and twenty-five. Tilly remarked that she would rather remain a wheelchair-user than have to undergo blood-tests every three months! Time will tell. I also learnt that there is a manual transfer sling available for those infrequent transfers when a hoist is not available, e.g. from wheelchair to aircraft seat/sofa/funfair ride, etc, etc. We often have to make this type of manoeuvre and following Tilly’s surgery we often all end up in tears! Daddie is already looking into it as it looks promising.

This year’s Saturday night’s entertainment included a karaoke and fancy dress so the girls dolled up as pop stars. Tilly dressed as a vampish Miley Cyrus and took to the microphone and sang Taylor Swift’s “Love Story” to a packed room! As one might imagine, the whole conference is a bit of an emotional roller coaster anyway, but Tilly’s performance finished Nana and I off.

This year’s Jennifer Trust Conference was extra special for us as advance copies of Tilly’s book; “Tilly Smiles” was introduced. We are delighted with the look of the book that was created by Simon and Jack from the Caudwell Children Design Team, with Tilly having a great deal of input at every stage. This book has been five years in the making and has been funded by the Jennifer Trust for Spinal Muscular Atrophy. Families at the conference seemed thrilled with ‘Tilly Smiles’, scooping up all the available stock and placing orders for further copies. The next stage is to do the big print run and hopefully have copies ready to go out to the wider community at the end of August. The idea is that the Jennifer Trust will give a copy to newly-diagnosed families to ‘shine a light’ into the darkness that shrouds diagnosis. It is also hoped to sell this hard-back book for £10.00, with all profits going directly back to the Jennifer Trust. Bruce Forsythe has written a beautiful forward which hopefully will hopefully set this book into flight.

The Jennifer Trust is an amazing charity started twenty five years ago by a Mum, Anita, who found that there was no support available for her family when she discovered that her daughter Jennifer had Spinal Muscular Atrophy. Sadly Jennifer died aged eight months and Anita tragically died following a brain tumour four years ago. The legacy that has been left behind is awesome. The Charity's aim is to provide help for today and hope for tomorrow, and with family support and funding for research that is exactly what is delivered. The Charity is able to reach out to the many different groups needing quite different support at different times - a bit like offering individual slices of from a cake. The Conference is the cherry on the top!

A Comendation for Tilly

2010-07-19T21:16:00.006+01:00

It has been a remarkable time. We met with Tilly's new Physio - Margaret - and it was with great joy that I saw Tilly standing again in her marvellous wheelchair after a break of about ten weeks following surgery. There is no sight like it, and I can only imagine how it must feel for Tilly. Naturally, life is a compromise, and if Tilly is to stand up every morning before school, then she must forgo the luxury of feeding herself, as the arm supports do not function so well in the standing mode, and Tilly is unable to swallow so effectively either. Life is a balance, and in my opinion standing for Tilly is, has and always shall be, paramount.

There has been feverish activity this last week with the final touches being added to "Tilly Smiles". We were honoured with a visit from Hilary and Doug from the Jennifer Trust for Spinal Muscular Atrophy to the offices of the Caudwell Children where Simon from the Design Team worked with us to get Tilly's book ready for the Conference next week. Tilly has worked alongside us all the way and we are tingling at the prospect of actually seeing the "real thing". We should have some copies to take the the annual JTSMA Conference to gauge interest and think about how many more to print. Every penny made will go to the Jennifer Trust, so we really hope that it will be well received. Time will tell.

We had an extraordinary Guides' Meeting this week as it was held at Rudyard Lake so that the Guides could participate in paddling Bell Boats with Rudyard Sailability. Little did Tilly know that it was also the perfect opportunity for her to be presented with a prestigious national Girlguiding medal - The Blue Star of Merit. The evening sun shone as Tilly was stunned to be awarded such an honour - in her words, "a real medal - like I was in the army". Tilly was chosen for this tribute because Tilly has shown that she can overcome her medical challenges and is always smiling and never moans! Also the Girlguiding Association acknowledges Tilly's role as Ambassador for the Caudwell Children. Tilly is now also the proud owner of Bear No. 2 of only 100 Centenary Girlguiding Bears in the world. Tilly has decided to call her Bear "Bailey" in memory of her Snowy Owl who made Tilly's Brownie Adventure so special.

However, we had much more to experience that special night as we took to the water and found ourselves caught in the middle of what can only be described as a tropical thunder and lightening storm. We were absolutely drenched! The Brownies and Guides sang their hearts out! It was night we shall never forget!

I did my "Talk" the next morning for the new recruits to the HomeStart programme. It is always a pleasure to deliver this session as I was lucky enough to have been blessed with Linda, a HomeStart Volunteer, who transformed our journey through this parallel universe beyond belief. It is quite difficult to imagine how two hours a week can literally transform a families experience - but I believe that we are living proof that it can happen.

Tilly's chair posed a challenge for us this week as the standing function had resulted in the leg rest being frozen in the raised position. Resolving this problem is a challenge as Tilly is wholly reliant upon her chair and is unable just to leave it with the engineers to fix. Tilly's back-up electric chair is unserviceable so consequently, Tilly drove around with her leg out in front whilst a new part was sent for. Unfortunately, Tilly managed to sustain a foot injury whilst she played with her friend after school. An x-ray shows that no bone is broken (Thank God) and we are treating Tilly for a severe sprain! Rolf took the chair to be fixed the next day and fortunately the part was in the shop and Tilly is now back up and rolling - but not standing yet as we need the swelling to go down! Hey! Hoh!

It was great to see Tilly back in the pool again as I'm convinced it is the best exercise she can get. The only snag is that I have to lift Tilly from her chair to the shower-chair and then on to the pool hoist. Tilly cried as I obviously hurt her during the transfer. I am exploring the possibilities of taking Tilly to swim in the special schools locally as the municipal pool really cannot cater for Tilly's needs.

Candice went off for a magical day with the Treetops Siblings Group to Blackpool. I am so pleased that Treetops dedicate such quality time to such a special group of young people who also live with disability, even if it is 'once removed'.

Tilly and I went to "Primarni" and Tilly came home clutching yet another pair, (two pairs, actually) of shoes. It breaks my heart that Tilly's heart's desire is footwear as she spends most of her life in splints and her feet are doing their level best to turn right over. However, we can still manage to wriggle Tilly's little feet into the latest creations at a price we can afford so that's great for the time being.

Tilly had her second piano lesson using her arm supports and loved every note. It must be a great feeling for Tilly to actually hear the fruits of her labours after years of practising. Fleur, Tilly's teacher, is looking into an accessible examination centre!

As a purely 'comb and tissue paper' musician, I feel another gong coming on!

2010-07-13T14:55:00.003+01:00

It has been a real ‘dog on lino’ sort of week with multi-meetings, Sailability activities, a sleepover and a variety of media interest.
Tilly had her bestest friend, who has been with her since pre-school, over for a sleepover which was great. We cleared out all the junk that was lurking beneath Tilly’s bed and lowered it so that she would be on the same level as her friend so that they could natter late into the night. I think it is important to make sure that Tilly has plenty of time to nurture her friendships as she has had so much time off school recently with her various operations; it is inevitable that relationships will cool and will need reviving. Talking to other parents, it seems that friendships and parties and sleepovers can become a real heartache as children with disabilities struggle to join in. Tilly has been blessed by her friend.
Later in the week we had a visit from BBC Radio Stoke who was reporting on Racketys – the company that creates adaptive clothing for those who live with disability. During the interview I spoke of the barren ‘clothing landscape’, pre-Racketys, awash with tartan blankets and enormous waterproof capes (any colour so long as it’s blue) with absolutely nothing designed for scrumptious, trendy wheelchair users of any age. I remarked that it would be easier to kit out a pet dog in desirable adapted clothing with shops and websites aimed at this market, yet there was nothing for Tilly until Annabel and Racketys came along.
This item was picked up by BBC Midlands Today and we were thrilled to welcome the very delightful Laura McMullan to do a piece for the local news – the only challenge was that she arrived at 0700! We set our alarms a little earlier than the usual 0530 and, with the help of Candice and Tilly’s amazing arm supports, managed to have Tilly all ready for school at 0815 having done her bit for Racketys. Just glad that on this occasion I had remembered to remove the sponge roller from my fringe, which, amongst all the excitement, I very nearly sported when we went to meet Peter Andre!
That was another media highlight this week when Tilly was greeted at school with hoards of pupils and staff having seen her Peter Andre’s reality TV programme whilst he attended the Caudwell Children’s Butterfly Ball. This can be viewed for the next few weeks at: http://www.itv.com/itvplayer/video/?Filter=156756
It was a great boost for the Charity and Peter Andre came across as genuine and caring and determined to do all that he could to support the children. There is no doubt in my mind that he really is, just as he seems, a ‘lovely bloke’ with a heart of gold. The great joy is that Rolf has added Peter to his brilliant repertoire of impressions so we we’re never more than a heartbeat away from Mr Andre, or Mr Ramsey, Mr White, Lord Sugar, Mr Tarrant, etc, etc. It all adds to the fun and goes some way to keeping us laughing!
I did my “Talk” for the Caudwell Children Team and this time it was filmed so that it could be used for training purposes. With the use of a variety of props including a skipping rope, blindfold, ear-muffs, etc I tried to show just how a family can feel when they learn their child has a disability and just how much the Caudwell Children can help. It’s quite emotional to delve back into those dark days, but we are very lucky as the outcomes for Tilly have been extremely positive and joyous. I hope it helps.
The cameras kept rolling last weeks as Tilly was then filmed by Neater Solutions, the company that produce Tilly’s amazing arm supports. They came to school and captured Tilly playing Chess; cooking and then the ‘piece de resistance’ – Tilly practising for her next Ballet exam. Tilly operates the control with her foot and that leaves both arms free to explore the full range of arm movements (port de bras). Tilly looked beautiful and quite took the cameraman’s breath away as he’d never imagined the arm supports being used in such a creative way. I can’t wait to see the footage.

What the cameras didn’t capture, however, was the smiles on the faces of Tilly and her piano teacher, Fleur after Tilly had her first ‘arm-support’ piano lesson. I was sat outside in the van writing this Blog and had no idea how successful it had been. “It has been a million times better,” was Fleur’s quote, and Tilly said that after practising for years, “the music sounded like it ought to!”. Tilly is now practising for her first piano exam! I can’t tell you how delighted we all are – quite remarkable for a little girl who is not able to lift her own hands above her waist.

The photo shows Tilly playing the piano without her arm supports - I'll have to get some footage of her with them so that'll 'hearing' and seeing will be believing!

Life-Changing

2010-07-02T23:09:00.003+01:00

It was great to see Direct Payments in action on Saturday at Rudyard Sailability’s Annual Dragon Boat Race where sixteen teams of eleven paddle it out for victory and for the Charity. It was a really busy event and from 0800 - 1600, Laura, Tilly’s support worker, made sure that Tilly played her part in the fundraising events and also that all her personal needs were met, whilst I was running about doing my bit. The sense of independence that Tilly has from her fifteen hours a week support from Social Services is life-changing and I can’t imagine now being able to cope without them.

The only slight problem from being at the Lake all day on such a glorious day was the dreaded sunburn which left Tilly feeling rather sore in places, in spite of applying sun cream and seeking out the shade. Tilly is a ‘sitting target’ for the damaging rays, but is also keen to wear her shorts and strappy tops instead of covering up. I am just waiting for someone to invent a sunshade/umbrella for wheelchair users that will easily clip on and off, and won’t make the user look like they are sitting in a plastic green house. I am sure that this device would be quite simple to create and would make the designer a fortune. I might just have a go myself as I’m sure it would make such a difference!

The hay fever continued to be nuisance to Tilly so Daddie bought a light therapy device which cost about £10 and consists of two prongs being inserted into Tilly’s nostrils for three minutes at a time, twice a day. We continued with the antihistamine alongside this rather quirky therapy, and, so far so good, as the symptoms seem to have reduced, even now that Tilly has stopped taking the tablets. We live in hope.

We three girls made it to Church on Sunday and Tilly was welcomed back with open arms from all her ‘aunties and uncles’ that’d missed her whilst she’d been away recuperating from her various medical issues. They are such a blessing. It’s a great time for me to stop and think in Church, but I rarely get away without blubbing at something or other. This week I experienced an excruciating pain as I felt the acute loss of my lovely Daddie, even though he died over twelve years ago. I learnt so much from him and often wonder just what he’d make of my life today – I bet he’d have rigged up a parasol for Tilly by now!

Beautiful Candice had her ballet exam on Sunday and I was so proud to take her up to the studio. I’d had the privilege of seeing her dress rehearsal so I knew just how exquisitely she dances. Rolf stayed home and put the flags out to watch the England game with Tilly. In spite of the obvious disappointment, and having to do an evening meal for one of our B&B guests, Rolf created a wonderful turkey roast which we enjoyed ‘like a proper family for once.’

Tilly’s week has been filled with trips to the hospital for assessments of her chest, legs and spine and I’m pleased to report that she passed them all with flying colours. Tilly no longer needs to take a daily preventative anti-biotic; no longer needs to wear a cast on her left leg; and all her wounds are healed and she can get back to swimming (which she has missed terribly).

We had a terrific session to work on ‘Tilly Smiles’ with Caudwell Children’s Design Team and Liz from the Jennifer Trust for Spinal Muscular Atrophy. Tilly was so absorbed with the detail and we all just can’t wait to see it in print.
Tilly continues to teach her PA, Laura, how to sail and I think Tilly was very relieved to have company in the boat this week as the wind was gusting from all directions making for a thrilling experience better shared with a friend! The squeals were on the border of delight and terror, but I felt glad that a little girl such as Tilly has the opportunity to experience these emotions for real thanks to Rudyard Sailability and Direct Payments.

There was a red letter day this week when the Balder Engineer fixed Tilly’s chair that has been on a ‘go-slow’ for weeks. Tilly is once again back in the fast lane and loving it. However, it was a real eye-opener for us all for Tilly to spend a day being pushed in her back-up electric chair that had to be used as a manual chair because the battery was flat. We really didn’t need a reminder to let us appreciate how brilliant Tilly’s current chair is and how at £20K it is worth every penny, but as we struggled to transfer Tilly; to dress Tilly; to access education; to manage to feed Tilly without her arm support; etc it became more and more obvious how great a part a great powerchair can play.

As I got Tilly ready for school in the manual chair Tilly asked me how she looked and I said she looked very smart – which she did. Tilly replied, “I feel like I am disabled in this chair, and I never feel like I’ve got a disability in my powerchair.”

Hard to imagine how life-changing a piece of equipment can be.

Nothing Worth Having Comes Easy

2010-06-23T20:44:00.002+01:00

Great news! At long last, after a seven year battle with the local Council and others, Rudyard Sailability has received planning permission to build a fully accessible boat store with changing facilities at Rudyard Lake. The jubilation was tempered, however, as the majority of the Planning Committee voted to have our current boat removed on 21st July – right in the middle of the Club’s season. The Councillors who voted for demolition did so with such venom that it made me feel that we must be running an illegal, immoral organisation – not a charity offering water-based activities for those who live with disability. I wonder how they sleep at night. Time will tell just how we will manage this latest challenge in the Sailability saga, but no matter what it takes, I’m convinced that it will be ‘business as usual’ at the Lake.
We had a super time with a group from the “Aiming High” project at the week-end and then Tuesday was non-stop with different groups all day. It was then it was pure joy to see Tilly out sailing after school again teaching Laura, her PA, how to sail.
We had a bit of a scare on Sunday when Tilly ‘fell through’ her sling as one of the leg straps had come away from the main body of the sling. Fortunately, Tilly fell onto her powerchair, albeit in rather a twisted form, and no harm was done – but it certainly gave us all a shock as we contemplated what might have happened. Tilly’s Occupational Therapist responded immediately upon hearing the news and came to investigate in a mild state of panic and relief. She has now gone away to ‘follow it up’. I must say that I needed an extra large sweet vermouth on ice with a slice of lime that evening!
Just to add a bit of extra interest this week Tilly’s hay fever came on with a vengeance. Tilly wasn’t up to Church or her piano lesson and was only able to pop out for a short outing with Daddie to celebrate Father’s Day. We went ahead with our celebratory BBQ in the garden, but Tilly paid the price on Monday and was and left feeling very low with streaming eyes, sore throat, runny nose and banging head! She struggled into school, but we were asked to scoop her up and bring her home in the afternoon.

Whilst I gave Tilly a nebuliser, followed by a lovely long bath, Rolf seized the opportunity to transport Tilly’s powerchair to be repaired as it has been on a ‘go-slow’ for weeks and the long-awaited part had just arrived in the shop. Finding an opportunity to repair Tilly’s powerchair is tricky as she does not have a reliable second chair to keep her mobile. We crossed our fingers that it would be a quick fix, and much to our delight the powerchair was delivered back the same evening. Unfortunately, the joy was short-lived as the chair retuned back to ‘snail’s pace’ within five minutes! Just another little challenge to add to the pile!
The good news, however, is that Tilly’s hay fever has improved with anti-histamine tablets, regular saline nebulisers and a touch of Vaseline under her nose. Tilly is back to school, has been sailing and is enjoying playing outside with the Guides whilst I write this entry. Whilst Tilly is supported at Guides by Laura, her new Carer, Laura has not received suction training so I need to be nearby in case Tilly chokes and needs rescuing with her suction unit.

I had a very exciting session at Caudwell Children today as I saw the first draft of Tilly’s book, “Tilly Smiles” and it looks wonderful. I brought it home to show Tilly and she, too is thrilled. The book is being funded by The Jennifer Trust for Spinal Muscular Atrophy and we are looking forward to working on the final copy with them next week in the hope that it will be ready for the JTSMA Conference at the end of July. The book has been a ‘work in progress’ for many years so it will be heavenly to see it finished.
My lovely Daddie always used to say, that nothing worth having comes easy!

Tilly at the Tiller Again

2010-06-18T15:10:00.002+01:00

It was wonderful to come home with the girls after a hard day at the shops to find that Daddie had ‘put the flags out’ and had decorated the house and dining table ready for the England match. Rolf is so good at rising to the occasion and making sure that we make the most out of each occasion. The ‘piece de resistance’ was the strawberries and cream served in the style of the St George Cross. No need to mention our howls of disappointment at the final result!

After a warm welcome back to Church we made out way to Lake to help out at the Special Matters Family Day. The sun was shining as Rudyard Sailability welcomed whole families living with disability for a unique day out. Volunteers were plentiful as they helped grandparents to paddle on the bell boats; took children out sailing; assisted toddlers onto the trip boat; and raced uncles over the Dam Head for a trip on the steam railway. No one was left out. Special Matters had arranged everything, including a wonderful picnic. The fact that torrential rainfall also settled in for the day did not dampen our spirits! We were all soaked to the skin but carried on regardless. One mother of a child with a disability remarked that she’d never, ever heard her son ‘laugh like that’, and another Mum planted a huge kiss on my cheek and said that we’d given her son the best day ever! Such positive comments were just two of many and made it all worthwhile.

Perhaps it was a good omen for Tilly as the sun shone on her Tuesday night’s sailing session. It was important to get Tilly back at the tiller following her surgery to maintain her confidence, as it does take a lot of courage for a child such as Tilly to take to the water. Volunteers dedicated their time to setting the boat to electronic finger-tip control; manning the hoist and securing Tilly safely in her seat. Tilly took Laura, her new PA, out with her, to show her the ropes. It was a wonderful sight. The boat wasn’t quite big enough for Tilly’s smile!

Sitting up Tall again

2010-06-15T14:04:00.006+01:00

We floated very gently back down to Earth following the Butterfly Ball, savouring every detail. The next exciting event was the collection of Candice home from her trip to France at 0300! We bundled a sleepy, happy girl into bed at 0400 and were amazed to see her just a few hours later up and dressed and ready to go rowing. What a girl!

Later that day we were lucky enough to be at The Heroes Party organised by the Donna Louise Trust, Treetops. It was a brilliant event packed with fun and games and it was super to catch up with the other families and staff. The highlight of the day was the arrival of Spiderman by helicopter. It was fantastic to be so close to a real helicopter landing and taking off, especially on such a hot day! Treetops are brilliant and these get-togethers between week-end stays do keep my batteries topped up.

The girls played in the Chess Megafinal and Candice had great success and was the top scorer in her section making her this year's U12 Staffordshire Suprema and able to play in the next stage which is the Gigafinal. Tilly also had a good day and was the runner up in her section.

My lovely Mum arrived to help us get through Tilly's latest surgery - the extension to her spinal rods. We went in early morning and Tilly was practising her 'keep calm' routines that she'd learnt with Dr Ruth, the Psychologist. The longest of walks up to Theatre was slightly improved with Tilly not getting into quite such a lather. Once inside the Anaesthetic Room there was a dramatic improvement and Tilly just closed her eyes and listened to my voice telling her stories of a trip to a magical island (just like Treetops)and she floated away. The operation was only due to take an hour and it was wonderful having my Mum waiting outside to pick me up and lead me to the cafe where we waited.

We wandered back up only to be greeted by the Anaesthetist who told us that Tilly had only just gone into theatre as they had had a great difficulty in finding a vein and inserting the tube. This news meant that Tilly would be 'under' for longer which is always a risk for someone with breathing issues. I could feel myself falling apart, but Mum held onto me. The Anaesthetist took my mobile number and promised to ring when Tilly was ready to go to recovery, which he imagined would be in about another hour or so.

Imagine my shock when ten minutes later, in the shop, the Anaesthetist rang me. I could only imagine he had bad news, but instead he reported that the Surgeon, Mr Ahmed had worked wonders and the last stitch was going in. Mum scooped me out of the magazines and we made our way back up to Recovery.

Tilly arrived, without her tube, looking beautiful, but naturally, very distressed. All her readings were good, and Pat the Nurse was taking care that Tilly was comfortable and managing the pain. Tilly asked for Daddie, and as if by magic, he appeared by her side. Daddie couldn't stop as he had to get our windscreen replaced, but he had been there just when he was needed the most.

Tilly was quickly transferred back down to the Children's Intensive Care Ward lying on her back looking pale and uncomfortable. Unfortunately, it was necessary to change Tilly's bed which took six of us, with Nana holding onto Tilly's head which she felt was falling off. Tilly was wailing in discomfort and we struggled to gently manoeuvre her; and then as we sat her up and I held her to my chest, we heard this little voice say, "Oh, that's better! Did you bring the Suduko Nana?" It was like a miracle. Once she was off the 12inch wound, Tilly couln't feel it any more. We all looked at Tilly and each other in disbelief. I went outside to phone Rolf and one of the Consultant's arrived and asked how Tilly was. I told him that she'd just come back from Theatre and was sitting up doing a Suduko with Nana, and he laughed and said, "That sounds like Tilly!"

More amazingly, by the end of a very busy day, Tilly wondered if she would be able to go home. The word went around and it came back that Tilly could only go home if she had full spine X-Rays, which would mean crossing the hospital grounds to the Orthapaedic Unit. Tilly was up for it, and off we went. Once in X-Ray it took two of us in lead pinnies and Tilly's amazing chair, which quite literally collapsed down around her, to get the desired shots and we were off!

Daddie and Candice scooped us up and before we knew it we were at home with a Happy Meal watching Hannah Montana! Tilly had made an amazing recovery. Rolf, Nana and I looked at each other, still shaking, and wondered how long it would take us to recover - it was actually quite surreal.

We really wouldn't have managed without Nana, as to add an extra twist, we didn't have Tilly's Carer and the ceiling track hoist broke down. It was very difficult to move a little girl who had recently had surgery on both legs and her back - without our mobile hoist the only option we had was to lift Tilly by her ears! However after plenty of R&R and scrabble with Nana and Candice Tilly is now back at school, and quiety getting back into her usual activities. Tilly is also thrilled to be getting back into her summer gear which looks all the more fabulous as she is once again sitting up tall.

Tilly had a Ball

2010-06-07T16:50:00.002+01:00

The day of the Caudwell Ball dawned and we got up filled with excitement and anticipation as our first magical moment was to meet Peter Andre at the Grosvenor Hotel. It was definitely going to be a 'pinch me, I must be dreaming' sort of a day, made all the more precious because we so nearly didn't make it. We caught a London bus up to Oxford Circus, taking in all the sights along the way. I just can't get over how brilliant it is that every bus is wheelchair accessible, and even free for Tilly! We managed to buy a pair of 'Hannah Montana' sandals for Tilly for the Ball as she decided that she did not want to wear her purple, sparkling plaster cast.

We strolled along Oxford Street and along to the Grosvenor Hotel where the paparazzi were camped outside waiting for the celebrities attending the Ivor Novello Awards. Such a buzz! We made our way around to the back where Ben from the Caudwell Children warmly greeted us and directed us to the suite where we would be meeting Peter Andre. My heart was in my mouth. However, I needn't have been anxious as the room was filled with familiar faces from the Charity and new families who were on this magical adventure with us. John Caudwell and his partner Claire arrived and were so relaxed and friendly that it was hard to imagine that they were soon to be hosting their Butterfly Ball.

With a small film crew in tow, the moment we'd all been waiting for arrived, and Peter Andre joined us. He was beautiful - so genuinely interested in the children; so obviously happy to be with us, and so keen to see just how he could make a difference. Peter Andre was charming and delightful and such a pleasure to meet. There is no doubt that he has an affinity with our world of special needs and will do everything he can to support the Caudwell Children. Before he left he kindly signed Tilly's plaster cast and said he'd catch us later as he would be singing at the Ball.

An elegantly suited doorman hailed a cab and we winged our way back to our hotel to get ready for the Ball. My tummy was really starting to tingle, with my over-riding fear that I wouldn't be able to 'do' Tilly's hair to her satisfaction, but with a little extra help from our friends at the Ball, I think we got away with it. Tilly looked exquisite and felt a million dollars - a tribute to our special friend Andrea and Mich, Tilly's 'fairy' Godmother who'd devoted many hours to 'blinging' Tilly's ballgown and accessories. The afternoon sun shone down as we made our way out to our waiting taxi that Daddie had summoned. It felt really strange and very exciting to be making our way amongst the casually dressed tourists at five in the afternoon in our ballgowns and there were many 'ooohhs' and 'aaahhhs' as we told intrigued passers-by about the Butterfly Ball. We couldn't contain ourselves as we were bubbling over with glee.

The Ball took place in Battersea's Evolution arena alongside the River Thames which seemed to be extra twinklie in recognition of the occasion. The Caudwell Children's Team had been working on the layout and interior decoration for a couple of days and it looked fantastic. The setting was breathtakingly glamorous with butterflies and twinkling lights adorning the magnificently laid dining tables. I still couldn't believe that we were actually going to be part of such a spectacular evening. What a privilege; what a lucky family we are!

The first item of the auction display that I saw was Tilly's Soulscape which looked magnificent, illuminated in soft lighting. The Artist, Louis Parsons, greeted me and we nervously hugged and prayed that his wonderful work and Tilly's collage would inspire the audience and hopefully raise £20,000.00 - enough to buy another child a wheelchair just like Tilly's. I wandered around the collection marvelling at the eye-watering, rare and priceless items up for auction.

We made our way through to the Champagne Reception and marvelled at the constant stream of Stars that filled the room - Dame Shirely Bassey, Bruce Forsythe, Colin Jackson, Lulu, Liz Hurley, Peter Andre, Lee Pearson, to name but a few. They all looked stunning and were very friendly as they took time to chat with us and the other families present. I could hardly believe it was real as it felt just like a glorious dream, especially with Julian Smith playing his saxophone so beautifully. It was spine tingling.

We made our way to dine and shared our table with two other families from Staffordshire which was wonderful as we could indulge in our over-brimming amazement; openly marvel at our unbelievable situation; squeal with delight at the menu and 'spot' celebrities without fear of looking 'uncool'! It was heaven! Especially as many of the stars like The Duchess of York, Penny Lancaster, Lisa Voice and Jonathan Wilkes stopped by our table to chat. By now I was black and blue with pinching myself as it was all just too good to be true. To add to the magic Julian Smith returned to play and Peter Andre serenaded us through dinner.

The buzz and chatter of the room, however, was brought to a respectful silence as John Caudwell led the speeches and introduced the film sequences featuring families who have been supported by the Caudwell Children. It was very moving and gave an insight into the work of the Charity, and a strong reminder of why we were all attending the Butterfly Ball.

The all-important Auction then swung into animated action with fantastic sums of money being offered for awe-inspiring lots, such as Robbie Williams' Brit Award. Then came the moment that was causing butterflies in my tummy - as it was time to go up on stage with John Caudwell and see if Tilly and Louis's artwork could work some magic. It was nerve-wracking back-stage waiting for our slot as I worried that the bids wouldn't come in, or that Tilly might 'freeze' and not be able to say a few words to the audience. Nerves were slightly eased with the good news that Sir Elton John had kindly signed Tilly's "Butterfly, You're Free to Fly" picture as the work was inspired by his lyrics in "Someone Saved My Life Tonight." The tension was further eased by Daddie's 'off the wall' banter with Louis, who was also feeling tense as he waited to present his work on stage. Louis thought that Tilly and I looked remarkably calm - little did he know that our knees were knocking.

With a deep breath and a big smile we entered the stage and John Caudwell magnificently managed the bidding, selling the artwork with every fibre of his heart and soul, imploring the audience to dig deep and make bids of £20,000.00 at a time. The bidding crept up and then John invited Tilly to explain just what her powerchair means to her. With Daddie by her side holding the microphone, Tilly quietly told everyone that her powerchair does not just 'get her across a room', but it allows her live a full life - to be a ballerina, a mountaineer, a sailor - her powerchair sets her free. The bidding soared to a massive £380,000.00. It was mind-blowing.

I am so very proud of my little girl and so in awe of John Caudwell who has created this Charity and makes such magic happen. He could just chose to sail away on his luxury yacht with his beautiful family, but instead he works tirelessly for our children, ceaselessly trying to engage others in a similar position to do the same. He covers all the running costs of the Charity which employs a dynamic and caring team who energetically deliver his vision on a daily basis. Its wonderful to know that every penny donated is intelligently used and goes entirely to the Children. John Caudwell was the brightest Star of the night and is the hero of thousands of families across the country, especially ours!

With knees still knocking it was more 'pinch me' moments as we were invited backstage to meet Sir Elton John! I can remember dancing to Crocodile Rock as a little girl in my front room in New Malden. Elton John's music has featured in the many chapters throughout my life, and here was I poised to meet the great man himself. I was hardly able to breathe as the door opened and this Superstar made his way towards us with a big smile. He was lovely - so warm and natural; willing to talk; sign autographs and pose for photographs with obvious pleasure. Yet the biggest treat was yet to come as he made his way up on stage and took his seat behind his piano.

We were situated right behind Sir Elton John, next to the stage, close enough for Rolf to read which song would be coming up next. In such pole position Sir Elton certainly knocked our socks off! He was absolutely faultless. With no backing singers; no musicians; no dancers; no fancy costume changes; no gimmicks - just Sir Elton and his piano. He sang all the favourite songs we wanted to hear, just as we hoped we hear them - familiar and flawless; and his mastery of the keyboard was phenomenal. He performed with sincerity, style, energy and humour for over an hour and I've got to say that it was one of the finest hours of my life. I felt so honoured and privileged to have been so close to such a brilliant musician who was performing to help families just like ours. I looked at my beautiful Tilly whose eyes were shining with admiration as she sang along to the songs and I was overwhelmed with emotion. What a night! We shall never be able to thank the Charity enough for such an amazing experience.

As we prepared to leave it was announced that the Butterfly Ball had raised a record-breaking £1.75 million for Caudwell Children. This magnificent achievement is a credit to John Caudwell and his dedicated Team and to all those who gave so much of themselves, weather they be rich and famous, or not. It seems to me that a good time was had by all. We certainly had a ball!

The Night Before Caudwell

2010-06-01T22:23:00.005+01:00

We rolled effortlessly into the centre of London on a beautiful warm and sunny evening. The Premier Inn Hotel at County Hall welcomed us as old friends and we quickly settled into our room ready for our London adventure. The magic began with a surreal picnic in the lamplight alongside the River Thames, surrounded by illuminated landmarks under the shadow of the London Eye. The river provided a constant source of entertainment as cruisers, clippers and emergency boats crossed our vision, and the Embankment fascinated us with the waves of joggers, strollers, buskers and lovers. The highlight of it all was the most glorious music from a young Mandolin player who serenaded us throughout our al fresco meal.

The next morning was glorious so we set out on a walking tour of our favourite London haunts. Tilly loves crossing Jubilee bridge to Charing Cross and spotting all the sights, and then looking at the jewellery stalls in station. Tilly was delighted to find a diamante bracelet that fitted perfectly and then was further thrilled to be offered it as a present from the lovely stallholder. I wonder if this kind lady realised how much she had 'made Tilly's day!"

We encountered the usual problems around Covent Garden with the lack of dropped kerbs and found ourselves chaperoning Tilly along busy roads with drivers furious that we didn't have our little girl on the pavement. If only they knew! Rolf has written to Boris Johnson's office, but apparently accessible pavements in this area are not the concern of the Mayor of London.

Access is not a problem once in Covent Garden as we descended into the bowels of the old market to reach our favourite lunchtime restaurant, The Crusting Pipe, and enjoyed the meal as well as the terrific live music. It was good to see Tilly chatting so confidently to a couple of fellow diners who happen to provide support to a family with children living with SMA. They were amazed to see Tilly eating her own lunch using her arm supports and went off filled with armfuls of Tilly's suggestions and ideas.

We were then treated to an ad hoc private tour of the Royal Opera House by a kindly doorman - such a special glimpse to see the corps de ballet rehearsing. It was amazing and we are hoping to actually go to a ballet the next time we are in town with Candice. We missed her so much, but took comfort in the fact that she was having a marvellous time in France with school.

The day continued to be blessed as we decided to take Tilly to listen to the pianist in the lobby of the Waldorf Hotel. We were instantly warmly welcomed by sunniest Concierge I've ever met - Daniel. Daniel kindly gave us an informal tour around the public areas of this traditional hotel. It was wonderful. He was so enthusiastic to tell us of the history of this majestic building and even more keen to show how accessible it had become. Before we could blink Tilly was being transported in specialist lifts to new areas of the lobby. Daniel was the most marvellous host and finished the tour in the Hommage Bar where he promptly ordered Tilly a non-alcholic cocktail and a glass of Champagne for Mummy and Daddy. I could have wept! Daniel explained that the keys on his lapel meant that he had the keys to our comfort, safety and enjoyment and that if ever we needed him we knew where to find him. He certainly won the keys to our hearts. His devotion to service was overwhelming, and Tilly has now decided that the Waldorf will be her choice of hotels in the future! We shall never forget Daniel's smile, energy and care and just wonder if he has ever thought of running for Mayor of London! He'd certainly have our vote.

We floated out of the Hommage Bar and tried to get ticket to see Legally Blonde at the Savoy Theatre. Unfortunately there were no wheelchair accessible seats available, but we were invited to wait at the Stage Door and say a quick 'hello' to one of Tilly's favourites, Duncan James, who she'd met on previous occasions. Duncan was delightful and stopped to chat and even signed Tilly's plaster cast!

As the sun was setting Tilly was drawn to the chocolate milkshake in Garfunkles, so we dined on a pavement table and watched the world rush by. Bliss!

Back at the hotel we decided to wash Tilly's hair in readiness for the Caudwell Ball the next day. Unfortunately the 'disabled' room did not have a wheel-in shower, but a regular shower-tray with a six inch step! Tilly's recent surgery on both legs made the job of trying to lift her and her glide-away seat all the more challenging, with all three of us ending up soaked to the skin. There is no way that I could have managed without Daddie, and it is hard to imagine how an independent wheelchair user would cope. I guess Rolf will mention this in his feedback to the Premier Inn.

We tried to settle down for the night, but it was enormously difficult knowing that the next day was set to be one of the most memorable days of the year, and here we were, in spite of the various challenges, living it. Amazing! How blessed are we?

Tilly has her eye on the ball

2010-05-19T11:34:00.000+01:00

There is no doubt that the couple of weeks following Tilly’s surgery have been eventful.

During Tilly’s recuperation she was able to take part in a Special Matters’ workshop with Borderlines Theatre at a Young Carers’ Ambassadors Conference. This aimed to show young people that having special people within the health and social care industry is of vital importance and can be a really fulfilling career that can literally change lives. Sue Moffat from Borderlines is a genius and had these young people exploring new ways of working within the dramatic setting, allowing them to experience a little of what it is like to live with disability in a wholly unique way. I was amazed at Tilly, who had only just come out of her own theatre, who took centre stage and gave the students her own take on living with disability – basically that there is never a time when she has said ‘what a shame I can’t do that,” but always “how can I do that.” The bottom line was that Tilly can achieve all that she strives for with the help of those who work with her creating their own piece of magic. I am sure that the Students will have learnt something valuable to take with them on their journeys,

During this time Tilly’s wounds were checked by the local community nurse and it seems that her legs are recovering well. Tilly came off the pain-killers within a week and only gave little discomfort when we needed to move them. The original red and white (Stoke City) plaster cast was removed and now Tilly has a glittered purple cast ready for the Caudwell Ball.

The Ball has been a constant focus for Tilly with many hours dedicated to her “Butterfly – You’re Free to Fly” artwork which is to be auctioned. Set against a faint blue landscape of Tilly’s smiling face, her pink, purple and spangled butterfly collage is inspired by Sir Elton John’s lyrics from “Someone Saved my Life tonight”. The picture also incorporates a copy of the little butterfly that Louis Parsons created for Tilly when he was creating the masterpiece that will also be auctioned on the night. I’ve certainly got butterflies in my tummy now as the event draws closer, as there is no way of telling how the bidding will go. Tilly is praying that she will be able to raise enough money to buy at least one powered wheelchair – that’s £20,000! It’s such a big ask in these stretched financial times, but it means so much to Tilly that she will do her best to raise this amount as she knows exactly how much the chair will mean to the child that receives it.

Tilly returned to school and it looked like the Griffiths’ household was returning to some measure of normality. Candice, Molly and I went sailing and Tilly stayed home with Andrea to work on ‘blinging’ the ball gown. Michele, Tilly’s ‘fairy’ Godmother was in and out making final alterations Tilly’s dress. There was a frisson in the air as we packed Candice’s case ready for her trip to France with the school. We were ‘all systems go!” However, it is always at times like this when I allow myself to think, “we seem to be on top of this” that the spanner wings itself in our direction!

On Thursday morning’s school run Tilly was struck with an acute pain deep into her right side that brought her to tears. Fortunately, at school, with a bit of stretching out, the pain diminished and we all put it down to trapped wind. We all heaved a huge sigh of relief and went about our day.

I did an interview on Moorlands Radio, on behalf of the North Staffs Orthotics Campaign, which hopefully conveyed the importance of having improved quality for this vital service. The founders of this campaign are working tirelessly with the hospital to achieve this aim, ever mindful of the economic pressures, but ever mindful of the economic sense of getting this part of the service right. A meeting has been arranged with the Chief Executive of the Trust, so let’s hope that there will be some improvements to follow that will benefit the hardworking staff in this department and, ultimately, the patients.

Tilly had had a good day, although the pain had not completely disappeared. We had a meeting at the house to make the final arrangements for the Rudyard Sailability Race Night scheduled for the next evening. Rolf and I enjoyed ‘pizza on da couch’ and everything looked fine,

However, around midnight Tilly’s pain returned with a vengeance. We tried through the night to relieve it with various changes in position, trips to the loo, etc but nothing seemed to help. By 0600 Tilly started vomiting and panic set in. I rang the doctor at 0730 and he could hear Tilly howling in pain and he advised to ring for an ambulance as there was a danger that Tilly’s appendix were about to rupture. Our familiar friend Jane from the First Responders arrived within seconds of our call. Another paramedic arrived in a car within five minutes and he called up for an ambulance to transport Tilly to A&E. Tilly was by now in a chronic state of distress, as were we all. Fortunately, Candice was scooped up to school by a good friend and Tilly and I sped off with flashing blue lights and bells ringing. The traffic on the A50 parted like the waves of the Red Sea. Tilly was quickly assessed as having a rumbling appendix and the surgeons were alerted ready to take action. Drips were organised; X-rays taken – my heart was in my mouth. Tilly looked up with a big tear rolling down her cheek, “I’m not going to the Ball, am I?” Images of sparkling butterflies: diamond studded wheelchairs and bejewelled ball gowns swirled around my head, but all I wanted was to see my little girl out of pain and smiling again. “You shall go to the Ball,” I promised.

As the time passed with all the preparations and observations I prayed for a miracle. The news came that the Paediatricians that look after Tilly needed to have Tilly on their site, so that she could access Intensive Care post surgery. This delay proved to be beneficial as during the transfer Tilly’s tummy pain began to decrease and the vomiting stopped. By the time Tilly was settled into the Assessment Unit she felt much better and had even started smiling and chatting. With many visits from various doctors during the day there grew optimism that Tilly would not need surgery and that the pain could just be a ‘bug’. It looked like our prayers had been answered!

By six o’clock Daddie and Candice arrived to take Tilly home. By seven o’clock, albeit looking rather tattered and torn, we were on our way to the Rudyard Sailability Race Night! It was a miracle! We even managed a brilliant night and managed to raise around £1300, which was fantastic. It was pure poetry to see Tilly whizzing about like nothing had ever happened. Rolf and I were like rags!

Saturday was a nice ‘chillaxing’ sort of day getting Candice ready for her trip to France which departed at one o’clock in the morning. Just as I was finishing Candice’s pedicure Tilly started to complain of feeling unwell again. I dropped Candice off at school in the middle of the night and then returned to find Rolf coping with a very poorly little girl. A nightmare! Tilly struggled all through the night and then on into the next day. Comforted by all the tests that had been done a few days earlier we managed Tilly at home, but the stress levels were sky high. Even more praying.

By nine o’clock, after a little snooze, Tilly opened her eyes and asked for a drink and something to eat. It seemed that the ‘bug’ had finally moved out of her system. Rolf and I watched as we saw our little girl improve by the minute. The sense of relief was palpable and reduced us to tears.

Tilly has been back to school and the signs are looking promising that she shall indeed go to the Ball.

Tilly’s Soulscape est arrivee!

2010-05-07T09:31:00.005+01:00

The moment we’d been waiting for had finally arrived. Louis Parson’s was at the door with Tilly’s Soulscape, a remarkable piece of art that will be autioned at the Caudwell Children's Ball on 20th May. Feeling so honoured, Tilly would be the first to view Louis’ representation of her ‘inner being.’ The air was charged with anticipation. As Louis turned the huge canvas towards Tilly, colour, power and radiance filled the room. Tilly sat opposite as if she was looking into a mirror, perfectly reflecting the purples, pinks, reds silver and blues of the canvas. Tilly smiled. It is breathtaking.

Louis, Daddie, Tilly and me just sat in the company of this compelling canvas, exploring the various contours of the Soulscape and absorbing the energies that radiated from it. Our words seemed superfluous as the picture was telling Tilly’s story. We drank deep into the artwork, enraptured.

As we travelled through the many lands of Tilly’s Soulscape we were struck by the variety of intense feelings that they generated that reflected Tilly’s journey. In the southern zone of the work we were struck by the serenity of the lake-like scenery, with a fountain of ‘happies’ that seem to depict Tilly’s physical being: little, beautiful, calm and tranquil. But then, there is the most incredible upward, swirling, vortex of harnessed energy that carried us up to Tilly’s innermost being. The energies twirl and grow and out of them explode the most beautiful and elegant soaring figure of Tilly; dancing and flying; filled with light and power.

Our eyes are captivated by shimmering ribbons of happiness and achievement that arc out of her core. Their progress suggests an infinite movement, without bounds, that could carry on beyond the canvas. The sense of potential is limitless.
An astonishing aspect of this work is that is actually appears to move, (like the Van Gogh’s field of wheat) whirling upwards, sucking us in and taking us right to the heart of Tilly; to feel her unending capacity for joy.

However, further examination of Louis’ artwork will reveal that Tilly’s magical energy is set in a realistic context. Tilly commented on the ‘mud’, so difficult to work through, that surrounds her peaceful lakeside beginnings. Rolf sees a face with eyes tightly closed – does it look like Tilly on the operating table? These shadows, too, are a vital part of Tilly’s story. I can hear a muffled determined defiance ringing forth through a dark chasm in the canvas. The hinterland of this work has powerful undertones that remind us that Tilly’s travels have been fraught with fear and anxiety that make her seemingly effortless ascendance all the more remarkable.

I believe that Louis’ artwork is an honest representation of an extraordinary little girl who has been given an extraordinary path to tread but has managed to soar above the barriers of her situation to realise unbelievable heights. Tilly’s Soulscape, has a luminous quality that can become a shining beacon for us all, reminding us of the possibilities of striving to get 100 per cent out of each and every day, no matter how difficult the challenges might be.

I believe that Tilly’s Soulscape est arrive so that we can all celebrate and marvel at Tilly’s “joie de vivre.”

Smooth Operation

2010-05-03T17:20:00.003+01:00

There are many things about Tilly that really blow me away, but she has completely excelled herself this time.

At 0900 on Thursday morning Tilly arrived at hospital and had her hair beautifully braided by the Play Specialist in preparation for her operation whilst the sedative medication took effect. Daddie then read her the Psychologist's Hot Air Balloon story to relax her whilst Andrea and I got Tilly into her gown and put her into bed. Everything was very calm until the curtains opened and the porter arrived to take Tilly to theatre. Tilly immediately 'lost it' so we began one of the Psychologist's recommendations of telling a story between ourselves using three words at a time. Amazingly it seemed to help and Tilly and I began an adventure to Hollywood to meet Hannah Montana, who'd thrown a party with Robbie Williams there to greet Tilly, etc, etc. The Play Nurse who accompanied us also insisted that Daddie came too, and there began Rolf's first ever 'longest walk' in abject agony, helpless to stop his little girl being wheeled into 'who knows where'. It really was an excruciating journey for all of us, but Tilly managed the best that she ever has and arrived in a reasonable and understandable emotional state (which is more than could be said for Daddie).

I accompanied Tilly into the Anesthetist's ante-chamber where Tilly was spiralling away into further distress, so we started on another story of an actual visit to Los Angeles that we plan to make one day. Charlotte, the amazing Anaesthetist, arrived and filled the room with mirth, confidence and optimism - an absolute Star! She used a beautiful fluffy horse to gently waft Tilly off to sleep which worked a treat. As Tilly was floating away and I was telling her about what we'd do on in Beverley Hills she said, "I'm not here any more, Mummy" and drifted off. It is very difficult to describe how it feels to kiss your little girl goodbye whilst she has already 'gone' and then to leave her in the hands of the surgical team. My blood is instantly chilled and I am gripped by a tension that invades every pore, tightens every nerve and suspends every response.

With Andrea's help Rolf had recovered himself enough to be able to immerse himself in the day to day running of the day whilst Andrea and I disappeared into a parents' room to busy oursleves in the 'blinging' of Tilly's powerchair. I don't know how I would have got through the day without my special friend's loving support. We worked away the hours, getting little updates every now and then, until at last, after seven hours in surgery,we heard that Tilly was on her way back to the ward. We galloped up to the theatre and met Tilly, still intubated, being wheeled along with Charlotte and two other nurses. Tilly looked beautiful. All the tension left my body and positive emotion and energy charged through my veins as my 'coping Mummy mode' returned.

The slick operation in the Paediatric Intensive Care Unit was impressive as the team all worked with the speed of pit-stop technicians to 'extubate' Tilly and see if she could manage to breathe without her ventilator,and manage the pain. Within a few minutes of breathing for herself, Tilly was asking questions; ascertaining her situation and managing her own needs as she battled her way back to consciousness. It was incredible. Tilly's big emerald eyes would occasionally open and she would ask for Daddie who was on his way. As Andrea was leaving, Tilly turned through all the tubes and hoses and gave her a huge smile, a small thank you for all that she had done. It was now Andrea's turn to dissolve after being so strong for us all day.

Daddie and Candice arrived and found Tilly amazingly conversational and insistent that Candice stay with her rather than pop out with me for a bite to eat! It was quite surreal and so encouraging.

All night long I sat with Tilly as the PICU nurse monitored and observed and administered pain relief. I was in absolute awe at the strength and resilence of this little soul, and charmed by her witty and intelligent chats in the wee hours that really kept me going.

The next day was spent reducing pain relief medication, disconnecting lines and getting Tilly eating and drinking again. The first visitor was Ruth, Tilly's Psychologist, whose sparkling smile lit the room. Ruth was thrilled to hear how much her therapies had helped Tilly on her way to theatre, and even more delighted to hear that Tilly had requested some clinical photographs to be taken of her 'on the table' to help her with forthcoming procedures. I'm not sure that I'll be able to look at them, but both Tilly, Ruth and the Surgeon thought that they would help.

Andrea arrived next with Les, a MacDonalds Happy Meal and a pedicure; Daddie then arrived with news that an assistance doggie might be 'on the way'; Lucy, from the Children's Community Team, arrived with a chocolate cup cake and manicure set and Annie, a devoted family friend, arrived and gave Tilly a manicure. The day passed quickly with the added bonus that Tilly loves all the Nurses and her special friend from swimming on a Tuesday night was in the bed next to her!

The next day was called 'Operation Tilly' as it was planned to release Tilly from all hospital dependant needs. We managed to get Tilly into her powerchair and then Daddie and I took her up for the required X-rays. Once these were checked and considered to be OK, we found ourselves packing up and heading for home after just two nights in hospital. Even the Consultant on duty marvelled at Tilly's resilience, and like me, he said he'd still be under the covers after such a procedure.

Hard to describe the joy of arriving home with this special little girl, tinged, if I'm honest, with a little intrepidation of wondering if we'd done the right thing, and perhaps had rushed Tilly out too soon? However, after a beautiful calm night's sleep Tilly awoke feeling better than ever and looking forward to seeing Candice who'd been away on a Camping week-end with the Guides.

Candice arrived home tired, damp and thoroughly exhilerated with her camping escapades. The girls exchanged stories whilst I unpacked Candice's gear and Rolf prepared our evening meal. "Tea like a proper family for once" with both our little girls home and safe, has never tasted so good.

On A Roll

2010-04-29T07:14:00.006+01:00

So much to tell you, feel like I'm at the centre of a whirlwind of wonderful, positive activity. The weekend was jam-packed with the anticipated rowing, sailing, shopping and trip with the Guides to Drayton Manor. One of the many high points was that Tilly came out sailing with me and felt really excited about it, even though we encountered some 'exciting' winds that left us both squealing!

Tilly had yet another brilliant session with Ruth, the Psychologist, and became quite engrossed in watching a DVD about someone giving blood! We've been reading the relaxation stories at bedtime which are fabulous, if only I could stay awake long enough to finish them. Tilly is snoozing away long before the end!

Tuesday was ace. I had a wonderful day at the Caudwell Children's office immersed in the hub-bub and preparation for the Ball! It is a great focus with Tilly's surgery imminent.

Tilly excelled herself at Horton Lodge and with the support of an ingenious 'Sarah-sytle' (Tilly's physio) Tilly actually swam independently on her tummy. Her smile was radiant, and even though she was unable to talk because the float was on her throat, her eyes shone like beacons.

Feeling so elated and riding on a crest of confidence, we joined in the training with Rudyard Sailability and Tilly decided that this was the time to get back behind the tiller! On a fabulous evening, with perfect sailing conditions, Tilly took the helm and set a course for her sailing adventures for this season. A great challenge after a long winter wondering if she was really equal to it. Tilly whooped and cheered with all turns and took some persuading to leave the water as the light was beginning to fade and Daddie had a home-cooked Shepherd's Pie lovingly prepared and waiting at home.

The joys of the week did a great job keeping Tilly bubbling over, but it was difficult for her to keep smiling yesterday as she went into hospital for the dreaded blood tests and pre-operative assessment. Lucy, a glorious Nurse from the community team met us in the ward and we all did our best to distract Tilly from the inevitable. Amazingly, and miraculously, it was decided that blood tests were not essential on this occasion and all needlework could be done 'on the table'! Tilly almost managed a back-flip in her powerchair! We met Tilly's Anaesthetist, who was wonderful and filled us with overflowing confidence.

Tilly's surgeon came next and he was equally awe-inspiring and left us both actually looking forward to getting the job done! Tilly thought that the fact she would have a huge scar over her knee was 'cool' - a bit like Harry Potters!

We actually danced out of the hospital and had a great evening packing the bags for admission, for Candice's camp at the weekend and going to Guides.

A special bonus was that Sue came for a night sit and I've slept very well and am now about to go and get Tilly up and ready for the 'off'! Naturally, I'm very apprehensive, but I think we're up for it!

Some heavenly inspiration arrived via the ether - I've seen Louis Parson's picture of Tilly's soulscape. It is breathtaking beautiful and filled with astonishing energy that I will draw from and take with us.

On a r

2010-04-29T07:14:00.003+01:00

On a r

2010-04-29T07:14:00.001+01:00

Back In the Swing of Things

2010-04-23T18:23:00.000+01:00

The 0500 alarm on Monday morning signalled the return of the school run. Tilly kept her eyes tightly closed whilst I disconnected her overnight ventilator, took off her toe probe and removed her hand and foot splints. It was a real struggle, but once Tilly realised there was no snuggling back down under the covers, her beautiful green eyes flashed open brightly and it was ‘business as usual’!
During my ‘U’ bends duty I received a call saying that Ruth, Tilly’s Psychologist had managed to arrange a session that day at school to help to prepare her for her forthcoming surgery. It was a great session addressing Tilly’s fear of needles and Tilly reported that she was doing really well and had held a needle and had seen one poked into an orange. I’m so impressed with Ruth’s work and Tilly thinks she’s fab too.
It was great to get back, ‘suited and booted’ to the Caudwell Children’s office this week, although it was a departure from usual job of causing chaos in the Applications Department. The trouble is that they take time to train me on the various duties, but I go and forget it by the next time I volunteer! However, this week I went off to be filmed doing my ‘Talk’ which the Charity can then use in their disability awareness training programme. I was very pleased to have in the audience another Mum who has a child with profound disability, just to see, after all these years of delivering my ‘Talk’, if I’m still on the right track. Afterwards, we shared a precious deep and meaningful conversation that can only be had by two such mothers, and it seems that I’m still hitting home.
I loved being back in the warm waters of Horton Lodge for Tilly’s swimming session and to get Tilly to enjoy ‘swimming’ on her tummy, something she hasn’t done since her spinal rods were inserted in 2007. I cupped her chin in my hand and Tilly paddled her little hands and kicked her legs. We now need to explore different buoyancy supports that will take the place of my hands and she’ll be off!
After swimming we met up with Candice at the Lake where training sessions with Rudyard Sailability have recommenced for the season. It was really gusty evening with ‘rusty’ sailors of all abilities and disabilities squealing and yelping as the wind whirled them into places they didn’t want to go. Unfortunately, it was far too windy for Tilly’s electrically controlled boat, but as we had Pauline’s support, I was able to take my chances out on the water for the first time this season. I was lucky enough to have one of our highly experienced sailors sitting beside me and together we whooped and squealed and as I struggled to relearn the ropes. It was really exhilarating and it felt great to be back at the tiller. Next job is to get Tilly out as soon as possible.
We struggled again to get out the door even earlier for Tilly’s ballet lesson before school, but it was worth it as Tilly continues to make good progress using her newly found approach with her arm supports.
We had a cracking Special Matter support group meeting with speakers from the Common Assessment Framework team and the Aiming High project. These visitors were pounced on by the parents who seized the opportunity to question them on the services they represented, and the support that they aimed to offer. Families described how they were being constantly promised support that never arrived and they were on the point of crisis. A challenge went up for the visitors to take up the case of a one family in the room and they agreed. Parents went on to help and advise each other in a highly charged and motivated atmosphere and conversations were still raging on in the car park long after the meeting had closed. A real triumph and a thrill to be part of a support group in action.
Tilly crossed town to attend her modern dance class after school and then whizzed back her first school where, with the help of Lucy from the Children’s Team, Tilly got ready and had tea before her last ever Brownies meeting. Brown Owl and her team have done a brilliant job and Tilly has had a wonderful Brownie Adventure, being included in all the activities. However, Tilly was delighted to be going up to Guides and is thrilled to be embarking on this new chapter. At bedtime it was almost impossible to bring her down from her high as she marvelled at her new situation – “it’s so cool to be a Guide”, she kept saying and Tilly can’t wait for the next meeting.
I enjoyed a fantastic session with Borderlines at The New Vic Theatre discussing the creation of a work shop for Special Matters to present during a forthcoming Conference which can then be used as a training tool for the future. I adore being immersed in this world of possibilities and Sue, the Director of Borderlines, is quite simply a genius who can get right inside the souls of those who exist on the margins and is able to translate their experiences into unforgettable, thought provoking theatre. Ideas, emotions and feelings whirled around the room and, by the end, we were all charged with excitement as we discovered an outline for our workshop project. I can’t wait!
We had the honour of attending Elaine’s retirement party at Horton Lodge this week. Elaine was Tilly’s physiotherapist who, apart from excelling at the all the usual physical stuff, helped create Tilly’s first dancing frame. Elaine really is ‘one in a million’, who we were privileged to have work with us, a real godsend.
Tilly had another session with Ruth, the Psychologist, today, which apart from being unfortunately cut short, was effective. Tilly has now watched a DVD of someone having an injection – albeit through scrunched up eyes! Progress!
The girls have had Chess after school and we’re now at home ready for the week-end wind down! If we can call swimming, rowing, sailing, shopping and a Guide trip to Drayton Manor a wind-down! I suppose a change is as good as a rest?

Holiday Magic

2010-04-18T07:52:00.002+01:00

The Griffiths family were blessed with a wonderful trip to Chatsworth Farm this week, organised by Special Matters, a local support group for families with children with special needs. It was wonderful to see the animals up close, and so special to be in the company of other families just like ours. It was extra special for Tilly as she took along her friend Rebecca who would also staying for a sleepover.

Back home, whilst I rearranged Tilly's bedroom so that both little girls could sleep on the floor, the girls threw themselves into games of Monopoly, Uno and The Great British Game of Steam. After a favourite tea, they played on the Wii and eventually snuggled up on the couch with a mountain of Easter eggs and drifted and dozed through a DVD. Perfect! What made it even more perfect for me was the welcome arrival of Sue from the Children's Airway Support Team, who came to do a 'night sit', and would be in charge overnight. Sue had a very quiet shift as the girls hardly stirred at all.

Whilst the girls played the next morning I reassembled Tilly's room and tried my best to spring clean the house ready for the arrival of Uncle Frank and Auntie Pat, (Rolf's brother and wife). Fortunately they didn't arrive until late afternoon so I had plenty of time to unearth their bed that was buried under mountains of 'ullage' in the spare bedroom. I do prefer to live in a clean and ordered home, but housekeeping does seem to slip down my agenda which does leave me a bit sad.

However, we were pretty shipshape for their arrival and we all scampered off for a trip to the local carvery which was delicious and a great treat. Frank and Pat just marvelled at Tilly's arm support as she independently took care of her food.

The next day was glorious so Rolf took off with the gang for a splendid day at Shugborough and I stayed home and took care of the 'U' bends at the B&B. When finished I was able to polish off the article for Rudyard Sailability to submit to Geoff Holt which was a great relief. It should appear next month in Yachts and Yatching.

Whenever we have family visitors you can usually guarantee that Rolf will be called upon to do an evening meal for the B&B guests and this, of course, was no exception. Rolf and Frank trotted out and picked up supplies to cover this extra duty as well as a wonderful salmon meal for us. We got away with it and the girls weren't too late going to bed in preparation for the Saturday morning dash to swimming and rowing.

Uncle Frank and Auntie Pat were thrilled to see Tilly swimming on her back and were most impressed with the new float and Tilly's movement through the water. We got to the Lake on time to collect Candice from rowing and were pleased to hear that she'd done very well and appears to be a 'natural'. Bless her, she really does give 100 per cent to everything.

With the sun shining we took the opportunity of spending a couple of hours with Rudyard Sailability. Tilly was feeling a bit dizzy and 'vertigo-ish' so we took up shore duties (catching boats, holding ropes, talking to new members), Candice took out Auntie Pat in an Access dinghy and Uncle Frank assisted Richard out of his electric chair; into a manual chair; into a buoyancy aid; down to the pontoon; into a sling; onto a hoist and then into the boat. Then Richard took control of the boat and treated Frank to a glorious sail around Rudard Lake. The whole process was then repeated in reverse. Frank and Pat were impressed with the whole operation and charmed by the cameraderie, mutual support and ambience at the Lake. We all sat out and enjoyed lunch 'al fresco' followed by a slice of Richard's wife's amazing Bakewell tart. Life really doesn't get much better!

Rolf had had a very busy time at the B&B whilst we were away in the sunshine so he and his brother disappeared off to do a bit of shopping! Meanwhile, the girls played cards in the garden with Pat who enjoyed a pint of warm beer. An interesting juxtoposition of events which tickled me.

We finished off the day with yet another trip out for dinner which was lovely, except that I left Tilly's arm support and suction unit in the pub. Fortunately we were able to pick them up this morning from the Cleaning staff so my panic was over. I just couldn't imagine Tilly now without her magic arm!

After a hearty family Sunday brunch Rolf carried Tilly into Uncle Frank and Auntie Pat's new Motor home. It was fantastic. Guess what! Tilly now wants a holiday in one and is currently searching the internet for a wheelchair accessible version.

The relatives have now moved off up to Huddersfield to see Rolf's Mum and we're left with that 'end of the holidays' feeling - bigtime! It really has been a magical break and we're now getting ourselves organised to get back into the old routine. The girls have got their piano lessons this afternoon and then we're going to have one of Rolf's famous 'Roasts' for tea; catch up on the 'Dorothys' and have an early night.

The Human Touch

2010-04-13T15:49:00.004+01:00

Great excitement last week when the girls went to the hairdressers. Tilly had a trial run for her Caudwell Ball "Holly Wibbly-Wobbly" hairstyle, and Candice went for a new 'Hannah Montana' look. They both looked fab. Mich (the girls' Godmother) and I spent the session in the tearooms opposite, so the girls felt very grown up and independent.

Candice went off for a birthday party and sleepover so Tilly spent the time working on a certificate for the 'Aiming High' visitors at Rudyard Sailability. Tilly was inspired by the poster created by Candice for the Charity's forthcoming Race Night and spent more than three hours creating her own masterpiece. I sat beside her and observed how she explored the screen and options, never giving up or getting cross, until she succeeded. I was most impressed at her tenacity. The children who received the certificates in recognition of their day at the Lake were delighted, as were all the Carers. It's lovely to see how the personal touch can make such a difference.

We spent a great evening watching Apollo 13 - the mission that didn't make it to the moon and had an epic return trip to earth, only surviving because of the genius of the team on the ground and their collective resilience. It is an amazing film, made all the more special for us because we actually met Buzz Aldrin at the Legends' Caudwell Ball a couple of years ago. Also we'd spent a lot of time marvelling at the space missions at the Science Museum in London during a recent visit. We always say that Tilly would make a brilliant astronaut because of the weightlessness of space, but after seeing this movie she is not so sure! Even more amazing, the next morning we listened to Jim Lovell's voice, the actual Flight Commander of this mission, on the radio, as it was the 40ieth anniversary of their trip! What a humble man he seems.

Saturday morning was given a little twist of the pressure valve as Candice now has to get to Rowing Club at the Lake at the same time as Tilly needs to be swimming; and then needs to be picked up just as we are finishing at the pool. Once again, we couldn't manage these logistics without a lot of support from friends and Crossroads (and pressing the 'fast-forward' switch)! We got away with it!

We didn't stay for long at the Lake as we were off for a special treat with Daddie - a picnic in Hanley Park in the sunshine and then on to Circus Starr ,the Circus with a Purpose! This year the funding will go to our treasured Donna Louise Hospice Trust, Treetops, so it made attending all the more important. We have been to this wonderful circus every spring for about ten years and it never fails to delight us with its unique troop of clowns, acrobats, jugglers, trapeze, etc Rolf usually needs a little recovery time after sitting ringside - so close to so many sequined, thonged-leotards and shapely fishnet-clad legs! He always says "There's something for everyone!" and he's right!

Monday's glorious weather was perfect for our twelve young people and carers that came along to Rudyard Sailability. They were never off the water, both paddling and sailing, or taking a ride in the safety boat which is accessible for wheelchair users. The mix of users and volunteers was vast and the atmosphere so buoyant, with everyone working flat out to ensure that these children had the time of their lives. Candice took out a lovely boy who was a 'natural' at sailing and who was really reluctant to leave - "I want to stay in this boat forever'! That's what it's all about.

I received a surprise phone call whilst we were wrapping up the day from that amazing sailor, Geoff Holt, whose book "Walking on Water" I've been raving about and retelling to the girls. I was so thrilled to have the opportunity to tell him personally that the story of his voyage through life with his spinal injury and then his sailing and life achievements afterwards have reduced me to a pulp, but have inspired me beyond belief. Geoff was very modest and very flattered but had rung to tell us that he'd like to feature Rudyard Sailability as his first 'Club of the Month' in his new post as Columnist on Yachts and Yacthing magazine. What a honour - I've now got to write 400 words by Friday! Best get busy!

Candice popped off again today with her friend for swimming and then a sleepover which was all very exciting. Tilly and I accompanied Dennis, Rudyard Sailability's Chairman, on a mission to 'meet the Sponsors'. What an absolute pleasure to meet the faces behind the logos on the boats and the businesses names that I've been typing for years in the various Minutes. To a man, they were all hard-working and hard-pushed, but with hearts the size of dustbin lids, eager to hear the latest Club news and asking if there was more they could do to help. It was so uplifting to see at first hand such warmth and generosity by such people helping out 'because they can', not for any personal gain.

Tilly has had another session with Ruth, the Children's Psychologist, to explore ways that Tilly might manage her fears for her forthcoming surgery, in particular, the needles and the general anaesthetic. Tilly is really enthusiastic and feels very at ease with the approach and very comfortable with Ruth, which is half the battle. We have got some relaxation and distraction techniques to work on. I am sure all this will be of help, although it is not easy to calm an intelligent ten year old at such times. I feel sick at the thought of it, but also dread that it may once again be cancelled!

There's so much to be said for the 'human touch'. I heard a broadcast on the radio about Mother Theresa in Calcutta who founded a special clinic for the dying. The staff collected these abandoned people and brought them into the hospital to die with dignity, respect and allowed them to feel the warmth of the 'human touch', if only for the first and last time in their lives. It was very moving.

This is something that I have come to notice with Tilly that will always fill me with emotion. Don't misunderstand me, Tilly is forever being hugged and kissed by us all, but forever she has always asked for me to put her arms around my neck, 'let me hug you', 'put my arms around you', etc. and it has never occurred to me until recently just how important it is for Tilly to be able to do this, to express her own human touch. The other evening, after tea, I put my head on the table and Tilly gave me the lightest and most delicate head massage, using her arm support to reach out to me.

How beautiful, and how lovely for Tilly to be able to reach out to touch another person. Something else that we might all take for granted? I know I did

Long lost friends

2010-04-07T18:47:00.001+01:00

What a joy to be on holiday and not have to get up at the crack of sparrows and do the mad movies dash to get to school on time – it makes going to bed such a pleasure knowing that this pressure is off.
Following a lovely Good Friday Service, complete with hot cross buns, the girls and I turned our minds to the Easter Garden that we were charged with creating to decorate the Children’s window. Floral art is definitely not our forte, but amazingly we really got into it and with the help of some extra thick moss scraped off a stone wall; an upturned broken flower pot; an Easter egg shaped stone and an Easter bouquet from One-Stop our Easter garden emerged. Candice and I carefully transported it down to the Church and we managed not to roll it around the back of the vehicle as we did our ‘Harvest’ offering. Mission accomplished!
Tilly’s Saturday morning swimming lesson was a challenge as Tilly had lost her confidence to swim on her tummy as she had missed a couple of sessions. This is very often the case when Tilly has a break from an activity – we’re just wondering how she is going to be when she gets back into sailing. Last year it took weeks to get her back to sailing confidently again, but fingers crossed it will be easier for her this season. None of this is surprising as it must take such a great deal of courage to carry out such tasks when you are so vulnerable, Tilly’s bravery never ceases to amaze me.
We went straight from swimming into Hanley shopping centre where we enjoyed a jacket-potato lunch which was made all the more delicious with Tilly using her amazing arm support. We then signed in at M&S to help with a Caudwell Children bag pack in their food hall. This is always such a pleasure as the cashiers are so friendly and the customers are so grateful to be helped and so generous with their donations. Once again, this experience was all the more delightful because Tilly used her arm support and was able to help pack the bags. I’m sure that between us we made a veritable fortune for Caudwell Children judging by the weight of the collection tins.
Joy of joys! We found a ball gown for Tilly. This is a great weight off my mind and all we need do now is attach a bit of Tilly-bling to personalise it. I’m on the hunt for stick-on diamante for Tilly’s chair as Tilly is expecting great things on her powerchair when she wakes up after the proposed surgery at the end of the month. No pressure there then! The surgery is actually starting to take up a lot of Tilly’s thoughts these days, so I do hope that she is lucky enough to have it done this time and it can be put behind her.
The Easter Sunday service was extra special because Tilly came out of her chair and sat in the pew between me and Candice, all snugly and warm. The Church was filled with flowers and joy and our Easter Garden looked just fine – we got away with it!
We dashed home hoping that the Easter Bunny had been and left an Easter Egg Hunt for the girls to follow. Rolf had worked his magic and devised a tricky trail filled with mind-bending clues leading to a huge chocolate Staffordshire hoard. This year Tilly declared that there isn’t a real Easter Bunny, but the spirit of the Easter Bunny lives inside Daddie! I’ll settle for that as it’s actually quite true.
Candice and I swept up a mountain of leaves and chopped back loads of deadwood in the garden on Sunday afternoon which was very therapeutic, and made a huge difference to how we look. Tilly bobbed out a few times to join in, but we’ve yet to find a good way of including her into such jobs. I’m sure there will be opportunities when Daddie starts planting seeds ready for his veg plot as this will require a lighter touch.
Daddie created a mouth-watering roast turkey meal for Easter Sunday, rounded off with Easter Eggs, which was divine. We then all piled onto the settee to watch the hunt for Dorothy accompanied by yet more Easter eggs! Bliss!
We had a wonderful Bank Holiday Monday day out with friends to Blackbrook Zoological Gardens. It was certainly bracing, but very beautiful and we managed to find a bird ‘hide’ in which to hide from the cold wind and enjoy our picnic. The girls scampered along the wheelchair friendly pathways gathering up clues and ended up going home with yet more Easter eggs.
We got home to find that Rolf had spent the day sorting out the guest rooms, making lamb hot-pot for tea and scaling a mountain of ironing! Just love that man!
Candice had her friend to ‘sleepover’ with us, complete with DVD in bed and a midnight feast! Tilly is already planning her turn, but we did stay up late and watch one of the finals of Masterchef whilst the girls were upstairs in Candice’s room. We should definitely go for a bungalow for our next house – access all areas!
Tuesday was very chaotic with a full breakfast service for the guests; bacon butties for the girlies; Rolf needing to disappear promptly to deliver Tilly’s chair for its service; stores needing to be replenished; a room needing to be ready by mid-day and a visit from the man from the Council to measure up for Tilly’s proposed new roll-in shower! To add a bit of challenge to the mix Tilly’s back-up powered wheelchair had no power and refused to be charged so Tilly spent the first half of the day being pushed around in this monstrous machine which was tipping her forward as the ‘tilting space’ function is only possible with power. We transferred Tilly to the settee but this did little to help her get comfortable and her lower back started to ache. Daddie came back at lunchtime with a folding manual wheelchair that he’d purchased locally. This was greeted with great joy as Tilly has always wondered if she could self-propel. Tilly did manage a couple of inches back and forth, but generally thinks that battery is her best way forward!
We discussed how it felt not to be ‘independently mobile’, a phrase that we have so often used and now fully experienced. Tilly found that the day had not only been really uncomfortable, verging on painful without her chair, but also she felt as if she’d lost all her ‘power’. Daddie rushed off to collect Tilly’s serviced chair and it was certainly welcomed like a long lost best buddie. Tilly decided that her independent mobility ranks as one of the greatest gifts of all!
I welcomed back Pauline, Tilly’s helper from Crossroads, like a long lost friend after the Easter holiday. We washed Tilly’s hair in the bath and discussed the wonders that a new roll-in shower will bring one day.
As I snuggled down to snooze after this rather busy day there was another long lost friend to welcome as, once again, I’d forgotten to remember that Sue from the Children’s Airway Service was coming to sit with Tilly overnight! What a treat. We had our usual chin-wag and then I skipped up to bed and slept right through knowing that Sue was just outside Tilly’s door should she be needed.
Woke up with batteries once again fully charged and Candice and I made our way to the Lake to support an Aiming High for Disabled Children activity day with Rudyard Sailability. Tilly stayed home with Daddie as she had to be lunched and ready to roll for her new dance class in the afternoon. It was uplifting to see ten young people experiencing the wonders of Rudyard Lake – sailing, paddling and cruising. It was fabulous to see Candice seemingly so effortlessly leap back into a sailing boat and whirl out to explore the Lake with a young person onboard. Candice does this so selflessly and so graciously – I am so pleased with all that she does and I can see how enriching an experience it is for her.
Tilly has spent an enriching afternoon in a dance workshop at Regent Theatre. Dancing is one of Tilly’s passions and she has loved being part of this special monthly group. It’s so good to see Tilly dancing so independently using her powerchair and arm supports rather than her mobile hoist and sling which does require another person to move it around. I was invited to join in but Tilly has banished me to this outer chamber so that she can fully embrace the spirit of the dance without Mummy putting in her pennyworth! Wonderful – I wouldn’t want it any other way!

250K Thank Yous!

2010-03-31T19:46:00.005+01:00

WE DID IT!
Thank you to everyone who voted in the Pepsi Challenge - $250,000 has now been awarded to fund a year's worth of research into SMA! We are all blown away as a family and so very grateful to the family in USA who were inspired to apply to Pepsi for this donation, and to all those, globally, who have clicked! I am rather struck at the power of 'clicking' and it reminds me of that theory of 'a butterfly flaps its wings' in South America and this leads to a tropical storm in another part of the world. Just imagine how many tombolas and raffles and sweepstakes and store collections and bag packs, and fun runs and sponsored walks, etc, etc,that would have been needed to have raised such a huge amount of money for the research - yet all it took was Pepsi with an innovative idea and energised, electronic supporters. Amazing. Who knows what might happen as a result.........

It has been a heavenly week with my lovely Mum with us. We decked the house with flags on 25th as it was Mum's birthday and then we spent the whole day celebrating - breakfast with Candice; lunch with Rolf and I; tea with Tilly and Pauline and then champers, cake and candles with everyone, including Mich, the girl's godmother. Between sips of champagne Mum was on the phone to all of my three brothers and three sisters who were determined to share the moment. Wonderful - mission accomplished.

Mum also helped me chose a dress for the up and coming Caudwell Ball, which is perfect, but a little snug - so I must now seriously keep off the goodies as I am more 'ball-shaped' than in shape for the ball! The next mission will be to find a stunning creation for Tilly - can't wait!

Tilly's knee seems to have settled down a lot now and not causing the same level of discomfort when we move it. I can't wait to see her up on her feet in her standing frame again once she feels up to it. We have also received notification of a date for Tilly's impending surgery for both knees and her spinal rod extensions. It is planned to do all the procedures together which makes sense, but naturally will take some time. I am already starting to feel sick at the thought of it - but I must try not to worry too much as the whole thing may be postponed if there is not a bed available in Intensive Care. Time will tell.

Rolf has been magnificent all week taking on all the transport and after school activities. I am sure that he will be glad when I'm back in the driving seat, but I have a feeling that he has also enjoyed the change of scene, and I know that the girls have enjoyed seeing more of their Daddie.

As a family we are very fortunate to be able to access The Donna Louise Hospice, Treetops, which we consider a vital part of our lives, and we couldn't believe our luck when we were invited for a week-end stay because they'd had a cancellation. The girls excitement reached fever-pitched as they packed their suitcases and anticipated the high jinks and fun-filled times they were about to have. Mum and I loaded our bags with goodies and fluffy slippers (bang went the diet) and Rolf dropped us off on Friday evening after Chess.

We were welcomed with open arms and wide smiles and immediately felt engulfed in love, care and support. We were treated to a delicious meal 'en famille' with the other children and their assigned helpers, and I felt like a weight had been lifted from my shoulders. We'd landed on our very own paradise isle and could look forward to a temporary respite from our everyday challenges. After tea the girls evaporated to explore the wonders of all the different facilities - art and craft, library, music, computer, sensory,games, jacuzzi, etc, etc. - a perfect playground and all stunningly decorated and tailor-made to enhance and excite each and every visitor. However, if I ever ask the girls what's the best bit about Treetops - they always answer - 'the staff'. Over the years both girls have grown to love and adore each of them and they feel loved and adored right back, and so do I. Mum and I floated up to our cosy family quarters and settled ourselves down for a snuggly, girly evening, knowing that the girls were safe and having the time of their lives.

Treetops is a time to recharge the batteries and catch up on jobs that I've been meaning to do - thank-you letters, shaving my legs, reading a book, wrapping presents, etc. This time I did most of the above, but most of all, I spent some really special and precious time with my lovely Mum whilst the girls had a ball.

Rolf came and picked us up again on Sunday and joined us for a delicious Sunday lunch before leaving. Perfect.

Most of Sunday afternoon was spent unpacking and setting up all of Tilly's machines again as we do have to take each and every piece with us, even for a week-end. Rolf took the girls to their piano lesson and then we all settled down to a tea 'like a proper family for once' and watched the TV - the final of Dancing on Ice. Magic!

Monday morning was very quiet as we all struggled to get through the morning routines after a run of late nights and being robbed of an extra hour. We're all feeling very tatty and looking forward to the holidays. Much improved later in the day, Nana treated us to an evening meal at the local Carvery which was delicious and served as an early celebration for Daddie's birthday.

Tuesday morning saw us re-decking the house with banners and flags for Daddie, but it was also a very sad day as we had to wave Nana off on the bus back to Bridgend. It really never gets any easier to say good-bye. This time, however, I was stuck in the fracture clinic, and my dear friend Andrea was charged with the task of delivering Nana to the coach. What would I do without such a friend? The good news, however, was that I left the clinic after a four and a half hour stint without a cast so I am now once again in the driving seat! Hooray!!!

Rolf's birthday meal was Divine and he was showered with gifts and good wishes - the best one being that he can hang up his swimming trunks and tutu now that I'm unplastered!

The girls are now broken up from school and the alarm clock is no longer set for 0500which is a real treat. Candice and I had a great day with Rudyard Sailability on Thursday with young people from the Aiming High for Disabled Children enjoying a day at the Lake. Tilly stayed at home with Daddie to catch up on some Tilly/Daddie time.

Upon our return Tilly informed us that the Dogs for the Disabled had written to say that Tilly had been successful in her application for an assistance dog and subject to Rolf agreeing to putting up a fence and me getting a letter saying that I would be free to take the dog along to my volunteering settings, they would be actively looking for a dog for Tilly! Is that the tiny patter of paws I can almost hear?

We went to the Hot Cross Bun service at Church today which was very special. I then spent the afternoon with the girls creating the Easter Garden floral display for the Children's window at Church. Floral art is definitely not my forte, but we do try our best. Candice and I delivered it to the Choir House earlier today in an effort to avoid rolling it around the back of the van as has so often happened to my floral offerings in the past! So far so good - just got to try and get it up on the window ledge tomorrow without too much of a disaster, although it does weigh a ton!

Forgot to say that I managed to read some more of "Walking on Water" by Geoff Holt whilst at Treetops. This is such an inspirational book about triumph over adversity that I have been reading for ages, (mostly through a veil of tears)about a young man with a spinal injury who sails solo around the UK. Highly recommended! Geoff has signed a copy of this book to Tilly with the inscription "Keep Sailing Tilly". With trail-blazers like Geoff how could she stop?

With a lot of help from my friends (and family)!

2010-03-23T18:38:00.009Z

Amazing news on the Pepsi vote - funding for a cure for SMA for one year has reached first position! Many, many thanks for all voters so far and please, please keep voting every day so that this amazing opportunity may be realised. Who knows what might happen with just the click of a mouse?

A very interesting week of role-reversal with Rolf taking on the school run and supporting Tilly at all her activities - swimming, ballet, contemporary dance, Brownies, Chess, etc. Clonking around in my pink plaster cast I've had the pleasure of taking care of the guests and the room-cleaning at the B&B! Can't wait to be back in the driving seat - but so pleased that Rolf has stepped to effortlessly into the breach and seems to be enjoying the challenge and the chance to socialise outside the B&B. They do say a change is as good as a rest - but we'll have to ask Rolf about that one.

I was scooped up on Wednesday and taken to the Special Matters Support Group where we were interested to hear all about the Family Fund Trust and how exactly they can offer help to families such as ours - holidays, white goods, specialist equipment, driving lessons and much more - definitely worth checking out - www.familyfund.org.uk.

I was also fascinated to meet another carer who fosters a child with disability and was amazed at the approach by the Local Authority who did not seem to be as helpful and supportive as one might have imagined. I would have thought that any family who undertake this admirable role should receive all the help required - without having to ask and without putting themselves at financial risk. As an added complication it seems that families are reluctant to complain for fear that their child will be removed from them. It's certainly a funny old world.

With expert teamwork and planning we somehow managed to pull off contemporary dance, Brownies, Guides and a Governors' Meeting on Wednesday evening with Pauline's (Crossroads Caring Employee) playing a key role.

I've been very fortunate and received an hours help from Pauline in the morning to help get Tilly off to school on time which has certainly been terrific.

I was scooped up on Thusday morning to do my "Talk" at Home-Start for their new intake of Volunteers. I just love talking to this particular group as it evokes such magical memories of Linda who came to our rescue all those years ago. Linda's two hours a week simply transformed our lives and we shall never forget her.

Had my beautiful friend, Andrea come around on Thursday evening and wash my hair which made me feel so much better. This feeling was further enhanced by yet another wonderful lady, Eileen, popping around with a sandal that goes over a cast which means I can get about easily outside, even in the rain! I've even been loaned a waterproof protector so I can now hop into the shower!

Flowers and good wishes have been arriving from many quarters - all expressing great concern and many marvelling at me being such a silly billy!

Friday was blessed with fabulous sunshine ,and so complete with my cast protector, I was able to join Rolf in a bit of tidying up in the garden which felt very theraputic and was much needed.

Pauline arrived early on Saturday morning to help get Tilly ready for her trip to Rotherham with Daddie for her County Chess Tournament. Rolf had to sit in with Tilly during her matches to attend to any medical crisis, but other than that, Tilly played independently using her amazing arm supports. The standard was very high and Tilly and her team played very well, although they did not bring home any silverware on this occasion.

Candice was an absolute Star and helped with all the jobs at the B&B - I really couldn't have managed without her. We also had fun making great fresh fruit smoothies and sorting out Candice's wardrobe ready for her forthcoming camps and school trip to France. I so adore having magical time with Candice.

It was great to see our travellers home safe as it was a wild and blustery day to make such a journey. We all settled down to one of Daddie's pastas 'like a proper family for once' and enjoyed catching up on Michael Winner's dining programme. I would just love Michael Winner to come and try one of Rolf's breakfast - I'm sure he'd be very impressed judging by the one we saw him eating.

Sunday was amazing. After a very busy breakfast service, Rolf put on the pork and drove us all to Britannia Stadium for Caudwell Children's Mad Hatter's Tea Party to celebrate the launch of its new Family Support Service, funded by Stoke-on-Trent City Council. We were also privileged to see the start of the awe-inspiring Star Biker Egg Run as we entered the party - thousands of roaring motorbikes heading off in bright sunshine to gather eggs for disadvantaged children.

The party was terrific with local families joining in with a huge range of fun activities. Rolf and the girls were particularly impressed with the circus skills and I just loved catching up with all the other Mums and carers who share our special world. I never cease to be amazed at the Caudwell's team energy, drive and enthusiasm as they give all of themselves to these events in their own time.

Having been at the stadium Tilly, along with a couple of other electric wheelchair users, are now determined to go along to a football match! I'll see what I can do! Tilly was also invited to another Dance Class taking place at the Regent theatre - she just can't wait as she has dance running through her core.

Sunday continued with a jaw-dropping performance of Snow White by the Russian All-Stars. Their performance left the audience gasping and weeping with their strength, skill and beauty. This special family treat was organised for us and other families by the Caudwell Children - is there no end to their kindness and insight? A family day out really is a gift beyond compare and much treasured by the Griffiths' Clan.

What then could have topped this magical day off better than one of Daddies' roast dinners and a family snuggle up on the couch to watch Dancing on Ice.

Life really does get better and better!

And to prove it my lovely Mum arrived on Monday afternoon to spend a week with us to help out. What a Darling! My Mum is my rock and my shining light of inspiration and the girls and Rolf also adore her.

Poor Tilly, however, has had a very sore knee since a knocking it against an open drawer on Friday. It is really uncomfortable to dress and Tilly is not able to manage her vital standing therapy. We took her up for an X-ray this morning at the local hospital and they were so warm, welcoming and efficient. Tilly was back in school with a support bandage by 0930, with the X-Ray being sent off for further review. No sign of a fracture! Let's just pray it will soon ease off.

I have heard that Louis Parsons has made a start on his soulscape representing Tilly. Every time I think about this awe-inspiring artwork my tummy tingles.

Plastered!

2010-03-16T19:24:00.007Z

Had a unwelcome break on Mothering Sunday when I rolled my ankle ushering Tilly into her piano lesson. It seems I have cracked my fibula and damaged the tendons, and I am now sporting a bright pink cast to my knee. I spent the first couple of days on crutches unable to bear any weight, which did make life very difficult, but today I am able to hobble about without crutches which is so much easier.

The student social worker manning the 'Quick Response' Desk was amazing. I explained our new situation and he quickly set up temporary extra care to keep Tilly on her very busy schedule. Wonderful!

Candice has also been so beautiful and helpful - so Candice!

Rolf has dusted off his tutu and trunks and has valiantly taken up the challenge of supporting Tilly's extra activities - Rolf's not one to make a drama out of a crisis and keeps telling everyone that my fall was an attention-seeking ploy to get out of the school run! Bless Him - his 'Eric Morecambe' sense of humour and hysterical impressions really do keep me sane.

Mothering Sunday, however, was lovely, with a beatuiful Church Service, hand-made cards and gifts from the girls, and a cosy family day topped off with one of Daddie's scrumptious roast dinners. We all piled on the couch to watch 'Dancing on Wheels' and 'Dancing on Ice'. Heaven! Motherhood is such a privilege.

Great excitement on Monday night when Tilly tried out an exercise machine that will pedal her legs and rotate her arms whilst she remains in the comfort of her own chair. Sarah, Tilly's Physio, came along to check it out and we were all multo-impressed at what we saw. I would just love to see Tilly engaging in such activity at home and at school and I am convinced that the results would be positive on so many levels, just sorry it's taken me this long to find one! Isn't always the case -apparently chldren as young as three can use them.

Can't believe that the Pepsi vote has gone from 8th to 3rd position - thank you all for voting every day and please keep it up as who knows what might happen.

I keep feeling waves of 'tingle' wasing over me, a sort of 'it's nearly Christmas' feeling that you get when you're a child and I wonder why for a few seconds and then I remember Louis Parsons' project and the Caudwell Children's Ball. I think the grown-up word is anticipation of something wonderful that's going happen........

Is it the weekend yet ?

2010-03-12T12:50:00.007Z

Tilly continues to make great improvement with her swimming teacher Louise and the new floating aid, and I still marvel at how high Tilly is now able to lift her arms out of the water to do the backstroke. Louise is hoping to get Tilly to swim on her tummy using this float very soon. The most amazing thing about it is that it costs £6.40! I'm surprised because it is so often the case that anything like this with a 'special needs' application would usually have the decimal point after the four (more often after the zero really, Rolf says)!

The girls spent a perfect afternoon shopping with their special friend Molly. Andrea and I trailed an appropriate distance away so the girls could enjoy their independence seeking out the bargains. The biggest joy for us was seeing the trio enjoying their lunch together with Tilly managing on her own with her amazing arm supports. They are getting more and more an essential part of Tilly's life, and I love them.

We enjoyed a fabulous pasta 'like a proper family for once' on Saturday night and caught up with the Dancing on Wheels. We are all transfixed and inspired, and Brian Fortuna has gone up heaps in our estimation for his commitment to this form of dancing.

Rudyard Sailability's AGM was the meeting that I've been waiting for as the 'hot off the press' plans for the new building were shared. The proposed development is fantastic and will transform the lives of those using the Club. The drawings were viewed in a room filled with admiration and respect for all those involved in the intense mediation process, and immense gratitude to all those who have given so much to bring about such a positive outcome. Personally, after six years of battling, I am almost too afraid to cheer too loud until I see the first spade in the ground, or we are cutting ribbon at the opening! The next stage is to apply to the local council for planning permission which should happen very soon - 4th time lucky? We'll see!

A very special treat on Sunday evening was a family night out at a Chinese restaurant in support of Charlotte Atkins, our local MP. The girls loved being 'out in the dark' and once again Tilly's arm support played a major role in our enjoyment and caused quite a stir amongst the other diners.

Had to miss out on my trip to Treetops for their monthly support meeting as the 'man from the council' was coming to assess Tilly's bathroom with a view to installing a roll-in shower. After a quick chat and a couple of measurements he was off to discuss things with Tilly's Occupational Therapist - we await the results with interest.

Had the dreaded call from school on Tuesday as Tilly encountered a vertigo attack as she had laid back in her chair. Fortunately, Rolf and I were both at home and made our way to school behind every tractor and slow-moving vehicle we could find and arrived to find Tilly fearfully distressed and battling to steady the whirling room. The feeling of helplessness is profound and all we could do was wait and pray that this debilitating condition would pass. In the past, these attacks can last up to three days. We got lucky, and Tilly mastered the dizziness and we managed to get her home for an afternoon at home to recover, but sadly Tilly was not equal to her swimming session at Horton Lodge. Vertigo really is a curse - we've tried the Eplee manoeuvre with our wonderful GP and ended up calling the emergency services, and Tilly has had consultations and scans with the ENT team - all to no avail! Just another thing for Tilly to cope with.

I remember walking to the first school with Tilly when she was streaming with hay fever and we stopped for me to wiped her eyes - "SMA, Vertigo and now Hay Fever," she said, "Oh well - It could be worse!" and carried on her merry way.

Tilly had another splendid ballet lesson before school, dancing independently using her arm supports. It's another real challenge for teacher, Miss Jeanette, as she will adapt the syllabus so that Tilly can take her British Ballet Organisation exams. Can't wait to see how that unfolds.

Suited and booted, I whizzled off to the offices of Caudwell Children and immersed myself the vortex of this turbo-charged environment. I get an incredible buzz every time I enter as I know that all this dynamic energy is going to help families just like ours, and I love being part of them, if only for a few hours.

I dashed home and loaded up the car with all that was required to take Tilly to her new Frontline dance class, and then on to Brownies (dance gear, glide-away toilet seat, jacket-potato-cheezy-beanz, drink, Brownies' uniform, etc). Tilly loved the dance session came out saying that she'd made a new friend - a lovely little girl who asked Tilly if she could walk and when Tilly said that she couldn't this little girl took her hand and said that she would help her. Later in the session a young boy who was finding it hard to settle came to work with Tilly and Tilly said that he immediately became calm and gentle. He asked Tilly if she could talk, and then wanted to know how she got into bed. Tilly was tickled as this is the question that children so often ask her.

Yesterday was a day we've been dreading as it was Tilly's zolidronate infusion in Birmingham. The stress began with the car journey to the hospital with Daddy trying to find another route, avoiding the 70 minute delays on the M6. We had to go to Birmingham as it was the first time for this treatment, but hopefully we can arrange for it to be given in the local hospital next time.

This bone strengthening drug needs to be administered by a cannula which involves putting a needle into one of Tilly's veins. This is a highly traumatic and painful experience for Tilly as her veins hide deep below the surface and are notoriously difficult to find. Everyone in the clinic was lovely and friendly but that did not help calm Tilly's acute anxiety as she made her way to the treatment room. It was Daddie's first time present at such an occasion and it was not nice. After three failed attempts to get the cannula inserted, Tilly was purple with screaming and saturated with perspiration. Every one's nerves were in tatters. Rolf was ready to bundle Tilly up and retreat. A Registrar was called and Tilly was summoned for another try. More heart-wrenching yowls and sobs from Tilly, and eventually the job was done. Rolf and I were so grateful, but destroyed. Tilly recovered instantly, all forgiven and forgotten, and got on with her homework during the half an hour infusion.

When asked on a questionnaire what improvements to the service that we could suggest Rolf thinks that a range of optics installed in the treatment room might help!

We managed to negotiate the traffic in time to get home for a visit from Louis Parsons, an artist who has agreed to create a piece of artwork inspired by Tilly, that will be auctioned at this year's Caudwell Ball. Louis is no ordinary artist as he creates pictures that represent the spirit and emotion of the subject he is painting and he had come to meet Tilly to gain an insight to her soul. As Louis entered our home he brought with him a wonderful sense of passion and excitement about the project. Tilly took to Louis instantly and they were soon talking together effortlessly, with Tilly telling him all about her favourite things in life. Louis took notes and by the end of the session had made a sketch of what he has in mind for the oil painting he will create. It was beautiful. Louis said to Tilly that he thinks that this will be the coolest painting he will ever do and I believe him - his deep commitment to it is palpable and quite awesome. .
http://www.artwithsoul.co.uk/
As Tilly's Mummy I find it an incredible honour and quite overwhelming that my little girl's spirit will be captured on canvas by Louis as an eternal inspiration to others. As Louis left last night, as this remarkable project begins, I knew that Tilly's spirit is safe in Louis' hands, for he already has her in his heart

Hands Up for Tilly!

2010-03-06T17:05:00.004Z

More progress for Tilly on the swimming front as her teacher, Louise, has introduced a new floating aid that means that Tilly can actually lift her arms out of the water and perform a backstroke! It is quite simply a 'woggle' bent in two with a net to support Tilly's back and allows Tilly to swim independently even in the rough waters of the Saturday morning swimming crowd. When Tilly went swimming in the quieter waters of Horton Lodge special school she found that she could do the backstroke, without the aid! I can hardly believe my eyes. Louise is an amazing teacher, always driving Tilly forward, and she is convinced that she will be able to have Tilly swimming on her tummy one day with this device.....can't wait!

Tilly has been practising Chess with Candice all week, and to our absolute delight has mastered the arm support to help her. Quite brilliant to watch Tilly's level of independence and confidence improve with the NeaterEater kit.

There was more to come as on Wednesday I failed to get Tilly comfortably in her standing sling ready to do ballet. We decided to give up as time was running out and Tilly chose to dance in her powerchair, but this time using both arm supports. The results saw Miss Jeanette and Tilly beaming from ear to ear as Tilly independently worked through her barre routines, achieving fifth position and more - a new chapter has begun - powered wheelchair ballet!

Still more breakthroughs as the days went by and Tilly's PE teacher at school advised us that a new group, Frontline Dance, were starting up after Easter. This company specialises in contemporary style dance, working with dancers of all abilities with wheelchairs welcome. Then the phone call came that the group was ready to begin that night and were we up for it! With a few hurried phone calls, a bit of rescheduling and organisation we went for it.

I scooped a delighted Tilly up after school, dashed her across town to meet up with Pauline, (Tilly's after school helper), spun back to school to crash in late to a Governors' meeting and then made my apologies to leave embarrassingly early; back to scoop up Tilly, who'd loved every minute, and then back up to the first school to have tea and get ready for Brownies which started at six. It seemed an impossible target to get all these jobs done within such a tight time-frame, but we were determined and I made the great mistake of triumphantly saying to Tilly on the way to Brownies - "We're on a roll!" and of course the 'Powers that Be' heard my self-congratulatory exclamation and before we knew it - Tilly powerchair was clamped in the car, unable to be moved out! Foiled again!

Fortunately, Pauline was able to dash up to collect Rolf who came charging down like the Cavalry and set Tilly free with a torch and screwdriver! Tilly made it to Brownies - all be it a little late - and can't wait for the next Frontline dance session!

The 'Powers that Be' were also listening when we had a marvellously quick and efficient trip to X-Ray for Tilly's CT Scan. This is a record I called to the staff as we skipped out, and cheered because we could even make it back to Chess Club at school. Big mistake, as no sooner had the words left my lips that it bacame obvious that I no longer had the car keys about my person. We scoured the car park, and were then taken pity on by a kindly member of staff who rang different departments and to our immense relief located the missing keys! I think I've learned my lesson and will button it next time things seem to be going our way!

Rolf forwarded me the call to vote every day in March for a Cure for SMA on the Pepsi website and I have been so uplifted by the many people who have responded to the call! Very touching and hopefully will help as we have moved up from 8th to 6th place since making the appeal. Thanks to all - keep it going and who knows what might happen?

I did a store collection for Caudwell Children this week and was so touched at the many people who stopped to talk to me and shared their experiences whilst they made their donation. So many lovely people about. I was also interested in the range of reactions to seeing me standing there with the bucket - those who felt that they had to give an excuse as to why they were not donating today; or those who found the crisp boxes opposite me so extremely fascinating and those who scrutinised their receipts until they were safely past. Naturally, I too have been in their shoes at some time or another - it's just human. I am sure it is a subject that comedian Michael McIntyre would have a field day with!

Rolf wrote to Boris about the lack of dropped kerbs in some of the very touristy areas of London and he had a reply from one of his assistants saying that it is the policy to be wheelchair accessible where possible in London, but that, in fact, the areas that we found lacking were not the responsibility of Boris as they were actually in Lambeth and Westminster! And there we were thinking that Boris was the Mayor of London and might be able to influence such locations! We've heard from a very reliable source, ie Bonnie,(commentator extraordinaire) that another group who advocate for wheelchair users are looking into this problem - so we wish them lots of luck as surely it is not too much to ask to be able to do the Lambeth Walk safely?

Yet more progress for Tilly this week as her Physio, Sarah, came round to the house to see adjust Tilly's standing frame, which is incorporated into her powered wheelchair. Tilly has been experiencing problems with standing as her splints have been out of action and she has developed a significant leg length discrepancy. Together they perfected Tilly's stand and to to our absolute joy and delight Tilly is also able to use her arm supports whilst standing. This means that Tilly can once again stand up every morning before school, whilst eating her breakfast. Double the joy - therapy and independence.

I'll vote for that!

2010-03-06T15:28:00.001Z

A Newsy Week

2010-02-25T14:07:00.004Z

On Monday Tilly was not well enough to attend the Birmingham Day Unit to have an IV infusion of Zolidronate - a drug that will increase her bone density - and so instead started on anti-biotics and snuggled down for a few days at home. With Tilly, it seems better to withdraw her from all activities at the beginning of a cold, rather than let her soldier on and see the virus develop into something very nasty needing a hospital admission. Tilly has today returned to school for half a day, so hopefully she has managed to conquer the cold before it took hold. Fingers crossed!

Good news came in yesterday that Tilly has been invited to play Chess for the County U11 Team. Tilly is over the moon and has been busy practising ready for her first match later in the month. Candice, too, had exciting Chess news that she has been invited to play at the local adults' chess club, along with a couple of other promising players from school.

Tilly's fortune cookie from the Wong Kei in London said that this week would hold the news that she'd been waiting for and it certainly was. It came along in the form of an agreement between the British Waterways, Rudyard Lake Limited and Rudyard Sailability to work together to provide an accessible boat store at Rudyard Lake. Whilst we were in London, all parties were locked in exhausting mediation talks that, at times, appeared to be going nowhere. Then, amazingly, after days of excruciating discussions an agreement was signed. All sides are to be congratulated for sticking at it and not walking away from the table.

We can still hardly believe it, that after six years of battling, there does seem, at last, to be an end in sight and Rudyard Sailability will have a permanent, purpose-built home at the Lake. The finer details are still being negotiated, and we do need to submit another planning application to Staffordshire Moorlands District Council. I can barely breathe in case it all disintegrates again, and I guess I'll only really believe it when I see the building going up, or better still, at the Grand Opening! I guess, nothing worth having comes easy, but to get this boat store has really taken an inestimable amount of effort by so many dedicated volunteers.

Another highlight was the visit by members of the team from Dogs for the Disabled who came to see if one of their trained dogs would be a suitable option for Tilly at this stage. We worked through a lot of paperwork looking at Tilly's lifestyle and the possible ways that a dog could improve her independence, and then, to Tilly's joy and delight, they introduced us to one of their dogs in training. We then did some practical tasks with this beautiful dog and Tilly got to take her for a walk. Tilly's best bit was giving out treats to the doggie, which gently took them from her little hands, making sure they were good and clean with lots of snuffles and licking during the process. I do understand that it is a huge commitment to take on an assistance dog, but I am convinced that it will have a huge impact on Tilly's life. We now need to wait to hear the outcome of this latest assessment, but either way, I am sure we'll soon be hearing the patter of tiny little paws!

I've just taken a call from the Caudwell Children regarding Tilly's contribution to this year's Butterfly Ball - more news on that later......