Great news! At long last, after a seven year battle with the local Council and others, Rudyard Sailability has received planning permission to build a fully accessible boat store with changing facilities at Rudyard Lake. The jubilation was tempered, however, as the majority of the Planning Committee voted to have our current boat removed on 21st July – right in the middle of the Club’s season. The Councillors who voted for demolition did so with such venom that it made me feel that we must be running an illegal, immoral organisation – not a charity offering water-based activities for those who live with disability. I wonder how they sleep at night. Time will tell just how we will manage this latest challenge in the Sailability saga, but no matter what it takes, I’m convinced that it will be ‘business as usual’ at the Lake.
We had a super time with a group from the “Aiming High” project at the week-end and then Tuesday was non-stop with different groups all day. It was then it was pure joy to see Tilly out sailing after school again teaching Laura, her PA, how to sail.
We had a bit of a scare on Sunday when Tilly ‘fell through’ her sling as one of the leg straps had come away from the main body of the sling. Fortunately, Tilly fell onto her powerchair, albeit in rather a twisted form, and no harm was done – but it certainly gave us all a shock as we contemplated what might have happened. Tilly’s Occupational Therapist responded immediately upon hearing the news and came to investigate in a mild state of panic and relief. She has now gone away to ‘follow it up’. I must say that I needed an extra large sweet vermouth on ice with a slice of lime that evening!
Just to add a bit of extra interest this week Tilly’s hay fever came on with a vengeance. Tilly wasn’t up to Church or her piano lesson and was only able to pop out for a short outing with Daddie to celebrate Father’s Day. We went ahead with our celebratory BBQ in the garden, but Tilly paid the price on Monday and was and left feeling very low with streaming eyes, sore throat, runny nose and banging head! She struggled into school, but we were asked to scoop her up and bring her home in the afternoon.
Whilst I gave Tilly a nebuliser, followed by a lovely long bath, Rolf seized the opportunity to transport Tilly’s powerchair to be repaired as it has been on a ‘go-slow’ for weeks and the long-awaited part had just arrived in the shop. Finding an opportunity to repair Tilly’s powerchair is tricky as she does not have a reliable second chair to keep her mobile. We crossed our fingers that it would be a quick fix, and much to our delight the powerchair was delivered back the same evening. Unfortunately, the joy was short-lived as the chair retuned back to ‘snail’s pace’ within five minutes! Just another little challenge to add to the pile!
The good news, however, is that Tilly’s hay fever has improved with anti-histamine tablets, regular saline nebulisers and a touch of Vaseline under her nose. Tilly is back to school, has been sailing and is enjoying playing outside with the Guides whilst I write this entry. Whilst Tilly is supported at Guides by Laura, her new Carer, Laura has not received suction training so I need to be nearby in case Tilly chokes and needs rescuing with her suction unit.
I had a very exciting session at Caudwell Children today as I saw the first draft of Tilly’s book, “Tilly Smiles” and it looks wonderful. I brought it home to show Tilly and she, too is thrilled. The book is being funded by The Jennifer Trust for Spinal Muscular Atrophy and we are looking forward to working on the final copy with them next week in the hope that it will be ready for the JTSMA Conference at the end of July. The book has been a ‘work in progress’ for many years so it will be heavenly to see it finished.
My lovely Daddie always used to say, that nothing worth having comes easy!