One beautiful spring day we had the absolute pleasure of driving up into the hills and paying our first visit to Lexi - a six day old Golden Retriever puppy who will soon be welcomed into the Griffiths family forever.
We are just counting the days until we can visit her again, and eventually bring her home for good. Daddie is busy getting the garden secure and we're all reading up on puppy training, It will be like a dream come true for all of us.
We were very lucky as we were invited to Treetops for the Royal Wedding - what could be better? We all dressed up and sat around the wide-screen TV in the family lounge, oohhed and aahhed at the guests; wept buckets during the service; shrieked at 'that' hat, and finished it off with a bunting-bedecked tea with jelly and ice cream! Perfect! Candice and I had lots of special time together on this visit as Tilly had her two special mates staying at the same time. That's the beauty of Treetops, plenty of room for three powered wheelchair users to play hide-and-seek, have a midnight feast and play on the wii! The three girls have promised to keep in touch and hope to meet up again before the next visit to Treetops. What a unique opportunity.
The warm weather and short school weeks were fabulous and led to lots of lovely 'al fresco' lunches, picnics and long lazy days reading Harry Potter. The 'All-terrainer' buggy came in handy for the rough ground and was a great way of carrying the picnic basket. Daddie has treated us to a host of freshly baked breads as he indulges in his new passion of baking - there really is no end to his talents!
|Sur l'herbe at Consall Gardens|
|Hic! Hic! Hooray!|
|Cocktail stick glitter application|
|All dressed up and ready to go!|
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.