The 0500 alarm on Monday morning signalled the return of the school run. Tilly kept her eyes tightly closed whilst I disconnected her overnight ventilator, took off her toe probe and removed her hand and foot splints. It was a real struggle, but once Tilly realised there was no snuggling back down under the covers, her beautiful green eyes flashed open brightly and it was ‘business as usual’!
During my ‘U’ bends duty I received a call saying that Ruth, Tilly’s Psychologist had managed to arrange a session that day at school to help to prepare her for her forthcoming surgery. It was a great session addressing Tilly’s fear of needles and Tilly reported that she was doing really well and had held a needle and had seen one poked into an orange. I’m so impressed with Ruth’s work and Tilly thinks she’s fab too.
It was great to get back, ‘suited and booted’ to the Caudwell Children’s office this week, although it was a departure from usual job of causing chaos in the Applications Department. The trouble is that they take time to train me on the various duties, but I go and forget it by the next time I volunteer! However, this week I went off to be filmed doing my ‘Talk’ which the Charity can then use in their disability awareness training programme. I was very pleased to have in the audience another Mum who has a child with profound disability, just to see, after all these years of delivering my ‘Talk’, if I’m still on the right track. Afterwards, we shared a precious deep and meaningful conversation that can only be had by two such mothers, and it seems that I’m still hitting home.
I loved being back in the warm waters of Horton Lodge for Tilly’s swimming session and to get Tilly to enjoy ‘swimming’ on her tummy, something she hasn’t done since her spinal rods were inserted in 2007. I cupped her chin in my hand and Tilly paddled her little hands and kicked her legs. We now need to explore different buoyancy supports that will take the place of my hands and she’ll be off!
After swimming we met up with Candice at the Lake where training sessions with Rudyard Sailability have recommenced for the season. It was really gusty evening with ‘rusty’ sailors of all abilities and disabilities squealing and yelping as the wind whirled them into places they didn’t want to go. Unfortunately, it was far too windy for Tilly’s electrically controlled boat, but as we had Pauline’s support, I was able to take my chances out on the water for the first time this season. I was lucky enough to have one of our highly experienced sailors sitting beside me and together we whooped and squealed and as I struggled to relearn the ropes. It was really exhilarating and it felt great to be back at the tiller. Next job is to get Tilly out as soon as possible.
We struggled again to get out the door even earlier for Tilly’s ballet lesson before school, but it was worth it as Tilly continues to make good progress using her newly found approach with her arm supports.
We had a cracking Special Matter support group meeting with speakers from the Common Assessment Framework team and the Aiming High project. These visitors were pounced on by the parents who seized the opportunity to question them on the services they represented, and the support that they aimed to offer. Families described how they were being constantly promised support that never arrived and they were on the point of crisis. A challenge went up for the visitors to take up the case of a one family in the room and they agreed. Parents went on to help and advise each other in a highly charged and motivated atmosphere and conversations were still raging on in the car park long after the meeting had closed. A real triumph and a thrill to be part of a support group in action.
Tilly crossed town to attend her modern dance class after school and then whizzed back her first school where, with the help of Lucy from the Children’s Team, Tilly got ready and had tea before her last ever Brownies meeting. Brown Owl and her team have done a brilliant job and Tilly has had a wonderful Brownie Adventure, being included in all the activities. However, Tilly was delighted to be going up to Guides and is thrilled to be embarking on this new chapter. At bedtime it was almost impossible to bring her down from her high as she marvelled at her new situation – “it’s so cool to be a Guide”, she kept saying and Tilly can’t wait for the next meeting.
I enjoyed a fantastic session with Borderlines at The New Vic Theatre discussing the creation of a work shop for Special Matters to present during a forthcoming Conference which can then be used as a training tool for the future. I adore being immersed in this world of possibilities and Sue, the Director of Borderlines, is quite simply a genius who can get right inside the souls of those who exist on the margins and is able to translate their experiences into unforgettable, thought provoking theatre. Ideas, emotions and feelings whirled around the room and, by the end, we were all charged with excitement as we discovered an outline for our workshop project. I can’t wait!
We had the honour of attending Elaine’s retirement party at Horton Lodge this week. Elaine was Tilly’s physiotherapist who, apart from excelling at the all the usual physical stuff, helped create Tilly’s first dancing frame. Elaine really is ‘one in a million’, who we were privileged to have work with us, a real godsend.
Tilly had another session with Ruth, the Psychologist, today, which apart from being unfortunately cut short, was effective. Tilly has now watched a DVD of someone having an injection – albeit through scrunched up eyes! Progress!
The girls have had Chess after school and we’re now at home ready for the week-end wind down! If we can call swimming, rowing, sailing, shopping and a Guide trip to Drayton Manor a wind-down! I suppose a change is as good as a rest?