Wednesday, 4 August 2010

Balancing Act

It's always a good feeling to get home to Daddie after a week-end away, but to return home to the delicious aromas of a home-cooked Sunday roast, and the sight of a mountain of freshly ironed clothes make it all the more wonderful. Poor Daddie had to stay and 'hold the fort' (one more time with feeling) whilst us gels were revelling at the JTSMA Conference. This can't be easy and is definitely a hazard of the B&B trade that leads to a juggling act for Rolf to try to manage the business; household maintenance; sorting wasp nests; conquering the ironing mountain; wheelchair repair; creating delicious and nutritious home-cooked food and being head of entertainment - all without transport as we only have one car. This situation becomes ever more trying over the summer holidays when the car disappears with alarming regularity and Rolf is continually on the end of the "U" bend duties. I certainly need to be mindful of this before I keep agreeing to all and every offer of activities in order to strike a happy balance.

We also try and juggle the time for Candice and Tilly to make sure that they enjoy a balance of activities together and apart. Last week Tilly had the most wonderful contemporary dance session on the stage of Victoria Hall in Hanley, organised by the "Aiming High for Disabled Children" project. It was a super session and Tilly was blown away with actually dancing on a real stage; having a juice-break in a real Green Room and seeing inside a real dressing room 'with lights around the mirror'. Candice, who was on a shopping trip with Nana, had told Tilly about such delights when she was doing a Shakespearean workshop at this theatre.
Tilly was lucky to be supported at this dancing workshop by her own Personal Assistant, Kirsty, who was inspirational, and I was able to 'hide in the wings'. I did peep out at the final performance and was moved to tears with the show. Breathtaking! Tilly just can't wait to get on stage again and is going to incorporate her arm supports next time for greater effect.

I will try to remember to take my camera with me as Tilly does use them to very successfully in her ballet lessons.

Tilly's psychologist came over and had a great session with Tilly and Laura (another Personal Assistant) and had a good chat about 'making friends' as this is something that Tilly can struggle with. They concluded that Tilly should continue with making positive efforts to make the first move to engage with others in conversations rather then waiting to be approached for a chat. So far this technique has been very productive and has improved Tilly's self-esteem no end. Tilly is supported by adults most of her time, so it is a sensitive judgement to give Tilly space to have ‘girl-talk’ with her mates, whilst keeping her safe. It seems to me that as time goes on Tilly’s PA’s will very much be her mates?
Candice was scooped up by the local Young Carers' Group last week to be taken to one of her favourite places on the planet - Drayton Manor. This amazing group has looked after Candice's needs as a sibling of a child with a disability for many years, but to take this 'coaster queen' to a theme park was right up her street. It is great that such organisations exist and work so hard to make sure that these Young Carers get a special treat every now and then. We all know that they certainly deserve them as the journey of the siblings can be treacherous at times.
Meanwhile, Tilly was treated to the arrival of Lucy from the Children's Community Team who came to support Tilly for the whole day at the Lake whilst we welcomed a PHAB (Physically Handicapped and Able Bodied) Camp. Lucy has been supporting Tilly for years and it was a day that Tilly had been counting down to. Whilst I was out on the Lake, Tilly was having her nails done and playing Scrabble and Uno with Lucy and Nana as the weather was not fit for Tilly to take them out for a sail on the electrically-controlled boat that she uses. This PHAB day was a resounding success thanks mainly to a brilliant selection of volunteer carers (all in fancy dress) who not only gave 110 per cent of themselves at the Lake but had committed to a week's residential with the group! Where do these heroes come from? I was awe-struck by them all.

Tilly had yet another fantastic piano lesson with Fleur using her magical Neater-Easter arm supports. We are all still reeling at the resounding improvement in Tilly's progress thanks to this equipment. Fleur has adapted some of the exam pieces to accommodate Tilly’s abilities, but who'd have thought it possible way back at the time of diagnosis for Tilly to be preparing for her first piano exam? Not me, but obviously Tilly had other ideas!

Saturday was another balancing act as we waved Candice off to her long-awaited and much-planned Unity Guide Camp with one of the other parents whilst I took Tilly swimming and then off to the Leek Show to support Rudyard Sailability. Rudyard Sailability was for once in party-mode at this annual event, celebrating success with planning permission and launching it’s 'buy a brick' campaign. It was a fabulous fiesta-style day that served to thank all those who have supported the Charity on its seven year’s journey to this point and to engage with the public to join in with the actual building project. It was a marvellous occasion with people genuinely delighted with our long-awaited success and keen to be part of the Charity’s future. Tilly and her PA Kirsty were supreme in their efforts to draw crowds into our tent and get them to participate in the fund-raising, and they also had time to disappear with Nana and delight in all the fabulous activities that the Show had to offer.

Tilly snored until nearly lunchtime on Sunday following the hectic activities of the week that was, and I left her there until she woke as I figured that there always has to be a balance between work, rest and play, especially for such busy little girl like Tilly.

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