Sunday was another heavenly lie-in as today's piano lessons have been postponed until later in the day. Tilly and Candice snoozed in bed and I helped Rolf with the breakfasts until 0930 when the house turned into a scene from the "mad movies" to get Tilly up, dressed, breakfasted, sing Happy Birthday to Grandma and then down to Church for 1030.
We belong to St Edwards Church in Cheddleton and feel very blessed to be part of such a loving family and privileged to meet up in such a spectacular location. We skidded in, late as usual, and were greeted by warm and friendly smiles from a group of people we have come to love and care about, who so openly love and care for us. I appreciate the opportunity to stop, be quiet and to reflect that Church gives me, and I am so pleased that the girls feel so at home there too. I always feel incredibly close to my lovely Dad who died eleven years ago after suffering a severe stroke. His presence in my life is permanent and very intense whilst in Church. His attitude to life following his stoke, his perennial quest to find the joy of life, no matter what the obstacles, has inspired me. I rarely manage to get back to my seat following communion without a huge swell of emotion building up inside me and escaping as hot tears. I guess it is a bit like a valve releasing some of the pressure.
Just like my Dad used to say to my Mum who had been busy cooking at home whilst he took the seven of us off to Church, I say my usual "God Bless All Here" to Rolf who has been working hard finishing breakfast and getting the rooms in the B&B cleaned.
Becky arrived from BBC Radio Stoke and had a great time with Tilly in her bedroom making some recordings about Tilly's life and the many machines that she needs. I am so pleased that Tilly has grown so much in confidence and is able to manage these things without me. I did my recording bit with Becky and enjoyed a great chat about our visiting hedgehog and the badgers at school. Becky is such a delightful, interesting lady and Tilly thinks she's cool! I am looking forward to seeing more of her over the coming months, and it's great for the girls to have such positive role model.
The piano lessons went very well with Tilly being see-sawed on our portable ramp into the teacher's house. Candice is working towards Grade 3 and the teacher is about to make enquiries as to how Tilly can participate in the exam system. It's wonderful that they both enjoy and can play the piano, I really did believe that Tilly's only possible musical experience would be though singing.
Rolf treated us to a sumptuous Sunday roast pork dinner with all the trimmings. The evening's further highlight was us all snuggled up on the couch watching Strictly and X Factor. It is a rare treat for Tilly to leave her chair and a great opportunity for a her to have a cuddle with Daddy and for me to snuggle with Candice. Close, physical contact is difficult for Tilly to achieve whilst sitting in a twenty stone powered wheelchair, and she is unable to reach out and touch others. Tilly very often asks 'put my arms around you' which leaves me burying my face in her warm little neck and fighting back the tears.
Tilly's night was rather troubled by bad dreams and lots of secretions that needed to be removed with the suction unit from her mouth. No doubt, Tilly is anxious about going to have her pamidronate infusion after school tomorrow at the North Staffs Hospital. It involves putting a bone strengthening drug into her system via a cannula into her vein. Tilly knows that historically the Doctor has a great deal of trouble finding her vein and it can be incredibly painful to insert the needle for the cannula. It really does fill her with dread. I remember once when she had to have one in Wales following an aspirated pneumonia she said tearfully to the Doctor who was frantically looking for a vein "It's like brown bread - I don't really like it, but I know that it's good for me" The poor chap was crushed! Well, Tilly has grown to like brown bread very much, and may be she will be able to tolerate the needles one day? It certainly has not got any easier as time has gone on and my stomach is in a knot at the thought of what she will go through.
Monday morning was the usual organised chaos to get out of door ready for school by 0815. It was my day to look after the rooms at the B&B today whilst Rolf went out shopping for us. I rather enjoy 'doing the U Bends' as it is a chance to listen to the Beeb and organise my thoughts. I also love to stop and be with the poosies, Vienna and Venice, a mother and daughter who have decided to live with us, and have taken up residence in the garden. They have a lovely calming influence on me, and they are so beautiful. We all adore them and can't imagine life without them. They jump up onto the bench so that Tilly can stroke them too.
Managed a quick lunch with Rolf who is now busy doing the ironing. Before Tilly left this morning she said that she would not think at all about the infusion until she got to the hospital - I hope that she has managed this as I have not. I can't wait for it to be over for her. I must remember to take one of Tilly's monitors into hospital for servicing as it is not working very well. The hospital are brilliant at looking after Tilly and all her needs - we are very lucky.
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