Nothing Worth Having Comes Easy

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

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

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

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

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?