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?

Tilly has her eye on the ball

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!

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

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.