Monday, 11 January 2010

Week-ends are made of this!

We’ve enjoyed a scrumptious family week-end which kicked off with a terrific ‘Friday feeling’ as Chess and swimming was cancelled. As much as both activities are much enjoyed it was lovely to get the girls home early and close the curtains on the snowy night outside.

Special Matters, a local support group for families with children with disabilities, organised an afternoon at the New Vic Theatre’s The Lion, The Witch and The Wardrobe. We are devotees Narnia as Candice has read all seven of the Chronicles to us over the years during the morning exercise sessions for Tilly. The New Vic inspired and delighted us with their creative and inspirational adaptation of this tale. A great family afternoon out was enjoyed by all.

I believe that organising these supported family activities for families who have a child with disability is an absolute strength of Special Matters. Without such help and shared understanding of the situation, many families would never even consider a trip to the Theatre or similar. The cost implications, the logistics of getting there and how to cope on the day are all taken care of. An extra pair of hands and complete understanding of what is required can make all the difference, and block possible disapproving ‘tuts’ and ‘harrumphs’ of others.

It is very often the case in families such as ours that the siblings will be whisked off for a treat, leaving the parents and child at home, or the child with the disability is taken out with carers and other children with disabilities. Whilst it is special for the children to enjoy such time away from their family, it is also wonderful for the parents to have the opportunity to share in such special treats, to actually witness and share the smiles and shrieks of joy of all of their children.

These days are also a great opportunity for parents like us to get together, have a good old moan, and pass on top tips and good ideas. Also, it is very often the only time that the ‘lesser-spotted Daddy’ is sighted!

Many thanks to Special Matters and to other organisations who are so inspired to arrange such special days out.

Saturday night was spent enjoying Daddie’s House Speciality Pasta and then a welcome return to Dancing on Ice. It is all the more enjoyable now as we were lucky enough to go to the live final last year at Elstree Studio so we view the show through ‘behind the scenes’- tinted spectacles, spotting where we sat and where the cameras are, etc. We were blown away by Philip Schofield’s calm professionalism as he turned to chat with the girls between live presentations. The skaters were all amazing, but it was completely breath-taking and awe-inspiring to see Jayne Torvill and Christopher Dean dance their spine-tingling “Bolero”.

It was Torvill and Dean who personally announced to Tilly at London’s Queen’s Ice Rink, that she had won her Pride of Britain Award in 2008. We have all been lifelong fans of Torvill and Dean, so to see Tilly and Candice actually skating with them was absolutely mind-blowing and a moment that we shall never forget. This magical pair was absolutely charming and actually seemed enchanted to be dancing with Tilly!

Following early morning piano lessons for the girls, Candice and I slithered our way to Church, leaving Tilly safely at home with Daddie – Tilly’s chair is not good in the icy snow. At Church, we all snuggled up in the choir stalls which made for an intimate and cosy service. Candice did the first reading which was lovely and always so well received by the congregation. I almost managed not to cry!

The rest of Sunday was spent with everyone getting on with their own work. The girls are busy organising for their forthcoming birthday celebrations; Rolf was preparing his “Happy Chicken” for our family meal and I was busy arranging meetings for Rudyard Sailability’s approaching Mediation process. The clock is ticking.

Rolf’s Roast was delicious and should keep me going until next Wednesday! Tilly continues to become even more proficient with her arm support and is so much more independent when dining which is fantastic. I can’t imagine now ‘feeding’ Tilly full time. I can imagine, however, that one day wheelchairs will be created with these arm supports built in as a permanent feature that can be folded away like wings when not in use. Perhaps Tilly’s next chair will be thus?

The ‘double-bubble’ joy of this week-end was the little knock on the door at 10 pm which heralded the snowy welcome arrival of Eileen from the Children’s Airways Support Team (CAST) who had come to do a night-sit for us. I feel Eileen is like a dear friend as well as a professional carer, and we settled for a lovely catch up. We chatted about the amazing trip that Tilly had been on with CAST for a Santa’s sleepover at Alton Towers Hotel with other children who are also ventilated – it was an absolute success all round and we mused about where they might adventure next! My mind tingling with ideas I skipped off to bed for an uninterrupted night’s sleep, content in the knowledge that I was leaving Tilly in the capable and loving care of Eileen.

What a fab week-end!

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