The first on our list was The Donna Louise Children's Hospice's 'Shining Stars'. I thought that this would be a great opportunity for me to have a go at performing some of my own songs on the keyboard whilst singing, as it's not something that I'd ever done before. I was worried about my hands being too cold to play - as I've said before, they're useless when they freeze - but in actual fact, they were so sweaty because the nerves that my fingers were slipping off the keys! It wasn't a big event by any stretch, but for me it was a chance to build confidence and have a go at sharing the thing that I love.
My debut!
A few days prior to this event, our family received a surprise invitation to the Crème de la Crème Ball in Alderly Edge hosted by Ashley and Dawn Ward. These two people have worked so hard over the past years for Caudwell Children, and now host an annual ball to try and raise as much as they can for the charity. The room looked fabulous, decked out in the style of the French Riviera, and it truly was a magical evening. I was asked to do a little speech about how my chair has transformed my life, and how much it would mean for other families to receive one just like it. I do get slightly nervous when I talk to quite a lot of people like that, but I'd definitely say that I was more nervous when performing on the keyboard to only 20 people! When I speak about my chair, I don't ever write anything down, but I find that once you're up there it all seems to flow - except that when under pressure, I tend to come out with really random phrases like 'the cherry on the top!' which I've never said before in my life.... My Balder (power-chair from Etac) is such a huge part of my life, I have no trouble telling people about it from the heart. The compare decided then to ask if 20 people could pledge £1000 each (with 12 months to fundraise if needed), together they would be able to buy a child one wheelchair which would change their life drastically for the better. An astonishing 40 wonderful people raised their hands meaning that Caudwell Children could provide two children with life-changing wheelchairs, which was honestly better than we could have ever imagined! Just when you think all of the amazingness has happened for that night, one extremely kind and generous gentleman put his hand up and said that he would like to buy one whole chair for a child - that's £20,000! People often say to me that that sounds awfully pricey, but if you break it down, it costs next to nothing per day. I get into my chair at 07:00am and I'm in it until at least 10:00pm, but if attending a ball, that will definitely be a lot later! Even more astonishing, after the big auction, another big-hearted gentlemen donated a further £20,000 for a whole chair, bringing freedom and independence to a child's life.
Matt Evers from Dancing On Ice!
Anthony Cotton (Sean) from Coronation Street!
It was a magical evening, with beautiful décor and surround by a whole host of celebrities, but the kindness and generosity of some people in this world really does take my breath away.
It was a big bump back down to Earth on that Monday morning at 06:00am after our fabulous weekend, but I guess we had to come down from cloud 99 at some point. My little chest infection started to get gradually more fierce as the week progressed, and by Wednesday I needed my cough assist whilst at school. I've said before that it is a huge piece of kit, and unfortunately this means that if I'm needing it quite regularly, I have to be at home. We're hopefully getting a more portable version soon, and so fingers crossed it will be a lot easier. When I was off for nearly six weeks last year after my surgery, my Teaching Assistants made sure that I was kept up to date with all the work, and even came to the house a couple of time to make sure I was okay with everything. They've continued to ensure that I stay on top of all my work when I'm off, as it's rubbish when you get back after a long period of time and don't have a clue what's going on. People may look at me and think 'What's she having time off for? She's hardly ill at all!' but we find that coming out of school as soon as we can, and working round-the-clock to try and clear my chest seems to - touch wood - keeps us away from the hospital.
Just one of the machines in the tool box...
On a normal day there is quite a high risk of me choking, involving streaming eyes, red face, unable to speak, and basically, it takes all my breath away. This happens from time to time, but thanks to my suction unit (secretion hoover, a bit like at the dentist), cough assist etc. it can be quite easily solved. We do take it seriously though, as there can be severe consequences.
Luckily, we managed to keep this little chest infection at bay, meaning that we were still able to travel to South Wales for the family gathering at my Nana's. Car journeys are usually the worst thing for a dodgy chest, and so it probably didn't seem like the most sensible idea to drive 3 hours down the motorway, but as long as I don't fall asleep, it's generally okay. The party was great, and the weather was perfect for sitting outside and enjoying the last moments of summer. Unfortunately, the person living in the house behind also though that it was the perfect day to light a bonfire, consequently, once more, clogging up my chest! But hey, it was still a lovely evening and, with a few extension cables and a cough assist in the back garden, nothing can stop us!
Apart just the huge amounts of school work piling up, the other reason for the delay on this blog is that my arm supports went into 'melt-down', most likely caused by overuse! The company (Neater Solutions) were fantastic and immediately sent out a replacement set to take over whilst they set me up with new and even improved arm supports asap. Fortunately my fab Dad was able to take care of the oily bits and carry out the swap. Having to last two days without my arms - literally, next to no use of them - does make you realise just what an important part they now play in my life. Everything from feeding myself, to writing, typing, scratching my eye-brow, to playing the keyboard is snatched away, and with it goes the majority of my independence. Interestingly, my breathing is also affected with my arms and shoulders motionless all day, and even my posture, straight away starts to deteriorate, and my head control is significantly weaker - it doesn't seem like your arm movements would affect so much of your body, but they really do!
All fixed up with the temporary set of arm supports for now, with my chest feeling so much better and desperately trying to catch up on all the work that I couldn't do whilst I was out of action, but hopefully I will be able to blog again in the very near future.
Write soon,
Tilly,xox
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