Life-Changing

It was great to see Direct Payments in action on Saturday at Rudyard Sailability’s Annual Dragon Boat Race where sixteen teams of eleven paddle it out for victory and for the Charity. It was a really busy event and from 0800 - 1600, Laura, Tilly’s support worker, made sure that Tilly played her part in the fundraising events and also that all her personal needs were met, whilst I was running about doing my bit. The sense of independence that Tilly has from her fifteen hours a week support from Social Services is life-changing and I can’t imagine now being able to cope without them.

The only slight problem from being at the Lake all day on such a glorious day was the dreaded sunburn which left Tilly feeling rather sore in places, in spite of applying sun cream and seeking out the shade. Tilly is a ‘sitting target’ for the damaging rays, but is also keen to wear her shorts and strappy tops instead of covering up. I am just waiting for someone to invent a sunshade/umbrella for wheelchair users that will easily clip on and off, and won’t make the user look like they are sitting in a plastic green house. I am sure that this device would be quite simple to create and would make the designer a fortune. I might just have a go myself as I’m sure it would make such a difference!

The hay fever continued to be nuisance to Tilly so Daddie bought a light therapy device which cost about £10 and consists of two prongs being inserted into Tilly’s nostrils for three minutes at a time, twice a day. We continued with the antihistamine alongside this rather quirky therapy, and, so far so good, as the symptoms seem to have reduced, even now that Tilly has stopped taking the tablets. We live in hope.

We three girls made it to Church on Sunday and Tilly was welcomed back with open arms from all her ‘aunties and uncles’ that’d missed her whilst she’d been away recuperating from her various medical issues. They are such a blessing. It’s a great time for me to stop and think in Church, but I rarely get away without blubbing at something or other. This week I experienced an excruciating pain as I felt the acute loss of my lovely Daddie, even though he died over twelve years ago. I learnt so much from him and often wonder just what he’d make of my life today – I bet he’d have rigged up a parasol for Tilly by now!

Beautiful Candice had her ballet exam on Sunday and I was so proud to take her up to the studio. I’d had the privilege of seeing her dress rehearsal so I knew just how exquisitely she dances. Rolf stayed home and put the flags out to watch the England game with Tilly. In spite of the obvious disappointment, and having to do an evening meal for one of our B&B guests, Rolf created a wonderful turkey roast which we enjoyed ‘like a proper family for once.’

Tilly’s week has been filled with trips to the hospital for assessments of her chest, legs and spine and I’m pleased to report that she passed them all with flying colours. Tilly no longer needs to take a daily preventative anti-biotic; no longer needs to wear a cast on her left leg; and all her wounds are healed and she can get back to swimming (which she has missed terribly).

We had a terrific session to work on ‘Tilly Smiles’ with Caudwell Children’s Design Team and Liz from the Jennifer Trust for Spinal Muscular Atrophy. Tilly was so absorbed with the detail and we all just can’t wait to see it in print.
Tilly continues to teach her PA, Laura, how to sail and I think Tilly was very relieved to have company in the boat this week as the wind was gusting from all directions making for a thrilling experience better shared with a friend! The squeals were on the border of delight and terror, but I felt glad that a little girl such as Tilly has the opportunity to experience these emotions for real thanks to Rudyard Sailability and Direct Payments.



There was a red letter day this week when the Balder Engineer fixed Tilly’s chair that has been on a ‘go-slow’ for weeks. Tilly is once again back in the fast lane and loving it. However, it was a real eye-opener for us all for Tilly to spend a day being pushed in her back-up electric chair that had to be used as a manual chair because the battery was flat. We really didn’t need a reminder to let us appreciate how brilliant Tilly’s current chair is and how at £20K it is worth every penny, but as we struggled to transfer Tilly; to dress Tilly; to access education; to manage to feed Tilly without her arm support; etc it became more and more obvious how great a part a great powerchair can play.

As I got Tilly ready for school in the manual chair Tilly asked me how she looked and I said she looked very smart – which she did. Tilly replied, “I feel like I am disabled in this chair, and I never feel like I’ve got a disability in my powerchair.”

Hard to imagine how life-changing a piece of equipment can be.