However, it has also been an uplifting time when I have been inspired on so many occasions by the actions of others. It started with the annual ‘Suction Training’ at Tilly’s School, when so many of the staff took the time to come along and keep up to date with Tilly’s respiratory needs. Brilliant!
I always feel quite elated when I go along to the Blood Donors’ session and see all the folk who turn out in the cold and dark to give blood. I didn’t feel quite to buoyant, however, on my walk home when I was pursued by a malevolent motorist who eventually mounted the pavement and scared me half to death. I will make sure that I make an appointment during daylight hours next time!
There has been great building works going on at Rudyard Lake in an effort to build an accessible boat store to support the activities of Rudyard Sailability. I have been overwhelmed by the generosity of the contractors, supporters and volunteers who have pitched out in the snow and arctic conditions to keep the project moving forward. Poor Dennis, the coordinator, says that he is losing the will to live and that the project is jinxed as every day there is yet another unforeseen problem, but so far there have been heroes and saviours stepping forward to help out. God Bless Them All!
I was very pleased to be invited along to the meeting between Karen Bradley, the Conservative MP for Staffordshire Moorlands, and Trudi Beswick, CEO, Caudwell Children. Karen revealed that it made a great change to have a Charity seeking new ways of offering practical support to families with children with disabilities, rather than just lobbying for change. Karen seemed very happy with all that she heard and saw at Caudwell Children and went away saying that she would do her best to secure a meeting in Westminster. Watch this space!
We had our usual Griffiths’ “Thanksgiving” with a delicious turkey dinner and a viewing of Trains, Planes and Automobiles, with John Candy and Steve Martin. The girls saw it for the first time and they too were reduced to tears of joy and sadness from start to finish. We did press the ‘mute’ button for the expletive-filled car rental scene, but Steve Martin’s enunciation and the girls’ ability to lip read made it a futile gesture.
There has been the usual round of School Governors’ meetings which are now set against an uncertain background with an unknown future in the wake of the latest Government changes in Education. I am infinitely relieved and so impressed with St Edwards Junior High School for all the adaptations that they have made to include students using wheelchairs. I fear that these expensive alterations would not be possible in the current climate.
Rudyard Sailability cruised into Ipstones Evening Christmas market, an annual fundraising event and highlight of the seasonal calendar. Our valiant volunteers spent all afternoon in sub-zero temperatures setting up our stall and then we trooped along rugged up from head to toe to join in the fun. It was a festive evening, and quite successful, but boy oh boy was it cold! Tilly’s little fingers were frozen solid and she had to retreat into the Church Hall to defrost.
The Christmas theme continued with Rudyard Sailability’s Santa’s Grotto, a new initiative by one of our Trustees, Anne Morris. It was wonderful. Santa was perfect and Tilly so enjoyed her role as the big man’s helper. It was quite poignant really as it seems like only yesterday that Tilly was wide-eyed with wonder at Santa herself. Candice and I spent the session wrapping up gifts for Santa’s sack. This session has been repeated with Bonnie helping out for the entire four hours and so far the Charity has racked up £350 which is marvellous. We have a selection of willing volunteers to step into the red suit which is fantastic. What would we do without such magnificent support?
We had a very special Church Service, attended by the Bishop of Lichfield, for the Centenary of the Cheddleton Branch of the Mothers’ Union. This was a lovely occasion followed by wine and cake in Church and a delicious buffet lunch in the Community Centre afterwards. I managed to rustle up another Volunteer Santa during the festivities so that was a bonus on such a special occasion.
Tilly, Laura and I left the giddy heights of the Board Room and made our way anxiously across the frozen landscape and intricate network of blizzardy motorways to get to Birmingham Children’s Hospital. We did the “Hail Mary, Full of Grace, Please find us a parking space” prayer and true to form and just like a little miracle, there was a parking space right outside the door. The doctors tried in vain to gain access to Tilly’s vein to infuse the bone-strengthening drug ‘zolidronate’, but it was not to be on this occasion. Tilly was remarkably brave and coped with the anxiety much better than in the past which is a credit to the work of Tilly’s Psychologist, Dr Ruth. Needless to say, I was still a gibbering, sweaty, highly emotional wreck!
We then went on to X-Ray where Tilly had a scan to check on her bone density and to see if all her efforts have been worthwhile. We were lucky to have got an earlier appointment and were much relieved to be heading back up the dark and snowy motorway to Staffordshire before it got really busy in the rush hour. Following the jubilation of being made a Trustee, the anticipation of Tilly’s infusion and the anxiety of travelling, my sweet vermouth on ice with a slice of lime has never tasted so good!
Tilly had a scan this week to check on the length of her legs following her surgery to address her leg length discrepancy. The hardest part of the process was the journey there in dense freezing fog! We don’t go far without sleeping bags, shovel, and emergency supplies in the car.
We then stopped off at Treetops, the Donna Louise Trust’s hospice, to show Chris and Dave around. They were bowled over with how warm, welcoming and homely it is and can quite see why we all rave so much about belonging there.
Whilst Tilly was at school I joined a band of very jolly Caudwell Volunteers for a Christmas wrapping service for a donation to the Charity. Many lovely people stopped by to donate even though they didn’t have gifts to wrap which was very heart-warming.
|Just one of the Saints of the Season......|