Growing Pains

I popped along to the Caudwell Children’s offices and was amazed at what I saw. The Applications’ Department was being manned expertly by five amazing Volunteers. The Managers had been called away unexpectedly for at least a week, and this team of willing helpers all stepped in together, upping their hours, to make sure that they kept the operation running. This selfless act meant that families working their way through the system would not be too inconvenienced at this unexpected loss of office staff. What stars!

Steve from the Charity drew my attention to some photos of Tilly taken during her recent “Go for it!” family fun day. Tilly is still talking about it and is so looking forward to getting another turn of such great activities such as Cheerleading, Boccia, Curling and Wheelchair football. Bring it on!

We enjoyed a visit from Rolf’s brother and wife – Uncle Frank and Auntie Pat – and Rolf treated us to some gastronomic delights whilst we reminisced over the amazing African Adventure that they had made possible for us whilst working overseas. I still marvel at the fact that we really were there, under Mount Kilimanjaro with all our attendant needs, and naturally, we could never have managed it without their support.

The Special Matters coffee morning was well attended and we were treated to a visit from Amanda from the Caudwell Children. It seems that there is a little pot of funding that needs spending on activities for children with disabilities so this seems like a golden opportunity for both organisations to work together. It’s wonderful that the supported ‘family day out’ is so valued by such agencies, as they certainly mean the world to families such as ours. Without such support there are many who would never get to the pantomime, theme parks, museums or the seaside, as the logistics, expense and stress factors would make it out of the question.

I also took the opportunity of sharing with everyone the success and joy that we are enjoying with the 'Emergency Transfer Sling' from http://www.movement2.co.uk/ which featured in the last Blog.  It was almost heartbreaking to see so many of the carers falling on such information, wondering where such equipment had been all their lives.  Just because our children grow it does not mean that they no longer wish to leave their wheelchairs to sit on the beach, or on a funfair ride, where specialist moving gear is not in place.  I think this sling is a godsend and has already transformed Tilly's swimming session.

Tilly had so much fun running the ‘Play Your Cards Right’ game with her best friend Rebecca at the School Christmas Fair. The best bit was the banter that she had with the customers as it gave her an opportunity to chat to other pupils that she would never normally engage with. The worst bit, however, was that “it was the first time that someone has ever been mean to me”, as one young punter thought it good sport to make fun of Tilly’s voice. I’d given Tilly the independence to run the stall without me, but that came at a cost of not being there to protect and defend her. I guess that is what ‘growing up’ entails, but it did make me sad, a sort of ‘end of innocence ‘moment, that there are people out there who would like to hurt her. The young person in question will be dealt with by the school, and I will continue to think of way to enrich the quality of Tilly’s rather ‘thin’ voice caused, no doubt, by muscle weakness in her throat?

I got lucky on the raffle and won six months’ membership of the local gym, and as much as I could really do with such a prize, in reality I know that it would be wasted on me. I had great pleasure, however, in passing it on to a very special friend who is able to make the most of it, proving that it is really much better to give rather than to receive as the 'feel-good factor' was ten times better than hours on the treadmill!

Whilst Candice was away at a regatta with the local Rowing Club, Tilly represented the Guides at the Remembrance Service at Church. It was a highly emotional gathering, made all the more poignant with a Bugler playing the Last Post and Reveille. Outside in the foggy November morning, the Bugler played once more, and those emotive words rang out, “At the going down of the sun and in the morning, we shall remember them.” Tilly joined others and laid a wreath at the Memorial. Like most present, I choked back tears. Tilly later revealed that she too had been moved to tears.

I think my little girl is growing up.