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?
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