Wednesday, 31 March 2010

250K Thank Yous!

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?

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