Guiding Stars

I’ve just had a long hot bubble bath and find that at last I have some time to visit Blogsville which can mean only one thing – I’m at Treetops, the Donna Louise Hospice, on a respite break. The girls are downstairs immersed in all the fun of a supersonic sleepover, including a visit from Bertie, a Daschund from the Pets as Therapy, and I’m upstairs with sweet vermouth on ice with a slice of lime and a box of chox! Bliss!
The summer holidays are hurtling by and have been jam-packed with a myriad of activities and events, peppered with the odd days when the girls could chillax and enjoy ‘breakfast in pyjamas, in front of the box’. (I remember it well)!

Candice went on a Girlguiding Camp for a week with 1200 others in Shrugbrugh which was brilliant and a testament to the phenomenal organisational skills of the volunteers involved. Nana, Tilly and I spent a day with them and were all blown away with just how hard they’d worked to include Tilly in all the fun and practicalities. We were fortunate enough to have a special friend, and Girlguiding member, Sally, come along to support Tilly on the day. I was, as ever, humbled at the selfless commitment and enthusiasm of the leaders and we spent the day working out just how we’d manage getting Tilly to camp when her turn comes around. I can’t wait!
The Rudyard Sailability summer events calendar has been choc-o-bloc with a wide variety of visiting groups living with a wide range of disabilities. We used Tilly’s direct payments to support Tilly with Carers during these days which have been mostly very wet and exhausting, but always incredibly enjoyable and uplifting. I am always moved by the reactions of all who visit, and never fail to gain an insight into the world of disability, but I was particularly struck by the overwhelming devotion of the PHAB (Physically Handicapped and Able-Bodied) Camps who brought their young charges up to us from Birmingham during their week’s residential camp. Not only do these people give up their time to give these young people an unforgettable experience, they also spent the day in outrageous fancy dress. I salute them, and all who commit themselves to others in such a magnanimous way, but I am sure they would tell me that they are the ones who gain the most.
Tilly has had some wonderful sailing sessions, which has really tested her skill, confidence and the boat’s electronics, especially in ‘sideways’ rain, gusty conditions and a squall. Tilly loves it and even dreams she is sailing and can’t wait until the next time she is at the tiller. Here’s hoping that my ‘mummy-ometer’ is up to it, as my toes curl, my heart races and my blood runs cold every time Tilly takes to the water. I wonder if this will ever pass.
Following weeks of organisation with the Children and Airways Support Team Tilly welcomed her special friend Chloe for a double-night sleepover extra-ordinaire! Chloe is fully-dependent on her tracheotomy and twenty-four hour care. However, this beautiful little twelve year old will not let this situation prevent her from engaging in all and every activity that comes her way. Chloe has been blessed with an insatiable hunger for fun and is fully supported by a dedicated team of Carers from CAST who will work their socks off to make sure that Chloe is always ‘replete’.
This adventure started at Telford Ice Rink where the girls were joined by another friend, Dan, who lives in a similar situation, and were welcomed with open arms and special care by the exemplary Manager, Jason Griffiths. The three amigos whirled around the ice effortlessly, towing their shrieking ‘Bambis’ behind them. It was priceless and Tilly was especially impressed as her two pals were driving their chairs using head controls. I expect the other skaters who were visibly inspired and amazed will not forget the day in a hurry either. Tilly can’t wait for the next trip to the rink.
The trio finished the day at The Boat Inn, Cheddleton, where the welcoming Manager, Chris Massey, moved ‘hell and high water’ to accommodate the three diners in their rather large twenty-stone wheelchairs. My heart swelled in admiration as the indefatigable Chris would have been quite happy to completely remove the solid oak door from its ancient hinge; to relocate an ‘awkward’ table to the patio, and to render the restrooms inaccessible in an effort to seat his guests. Fortunately, with a bit of careful manoeuvring everyone had a great evening leaving this wonderful ‘olde worlde’ pub in one piece and, fortunately, access to all conveniences. Amazing what can be achieved with expert management.
With ace teamwork with the CAST team we got the girls into bed where they snuggled down with a box of chox and a DVD. I was blessed with Eileen to night-sit for Tilly, so I snook away at 10 pm and left them to it. It had been a truly unique time.
On the second day we all met up at the Lake and we were thrilled to see our new friends on the Lake onboard the wheelchair accessible safety boat. They both loved it, especially when Dennis pretended to run out of petrol of had one of the Parents and Carers woefully trying to paddle the rescue boat back to shore. We were howling! At Rudyard Sailability, we are aiming to have a specialised sailing boat that could be accessed by those preferring not to leave their wheelchairs. I can’t wait.
Tilly’s sleepover with Chloe was filled with all the usual ingredients of pizza, manicures, DVDs, midnight feasts, and Monopoly, but made all the more heart-warming as it was shared by very special friends who share a very similar perspective on life. As usual, I learnt a lot from two wise little girls and their mate Dan.
The holiday so far has been peppered with other sleepovers and trips out for everyone. Candice roller-coastered her way around Blackpool for the day with the Treetops sibling group and met up with the gang that went to the Children’s Adventure Farm Trust holiday last year. Candice also went with the Young Carers to Drayton Manor and topped up her roller-coaster-ometer and, once again, caught her with her ‘special’ friends. I am immensely heartened by such devotion to siblings of children living with disability.
The Caudwell Children have a slightly different approach and aim to provide a day out for all the family – “A Gift of a Day” – which is a precious gift indeed. We were invited to The National Space Centre, near Nottingham, and Rolf, the girls went along. Unfortunately, I had to stay home and attend to the B&B, but by great good fortune, our amazing friend Sally was free to go along in my place and a great time was had by all. It was especially good to see Rolf ‘out and about’ with the girls as he has been in charge of a lot of ‘U’ bends over the summer.
We did manage to send Rolf and the girls out to the cinema to see Toy Story 3 – Rolf came back destroyed! Apparently he was all right until the ‘hoppa’ scene! Rolf, like a lot of Daddies, gives the impression of being made of steel with a ‘bell on every tooth’, but underneath he is very sensitive and vulnerable.
We had a fabulous day at Rudyard Sailability with a sparkling family from the Wirral which was organised by Ben from the Caudwell Children. The Hughes family comprise of two daughters and two sons, and one of their daughters, Amy, lives with Cockayne Syndrome. It was so special to have some time together and share our stories. We paddled up the Lake in a 12 man canoe and indulged in a wonderful picnic that Jayne had brought along which included chocolate chip shortbread and fat juicy strawberries. The sun shone and we could have talked until the stars came out – I felt like I’d known them all my life.
We had a magical flying visit from two very special friends who were back in the UK following the death of their precious Daddy, Patrick Keyes. I have known Sarah and Mary for hundreds of years and it was a treat upon treat to have them make time to see us. Rolf was brilliant, and laid on sumptuous meals and picnics fit for Royalty. We managed a sailing expedition and a shopping op which was perfect. We all stayed up far too late; cried buckets; laughed like drains and caught up on all the news. It was just the tonic.
There are many people I’ve come across, some I’ve known forever and some just fleetingly that, unbeknown to them, serve as guiding stars. This summer alone the sky has been filled with them!

Balancing Act

It's always a good feeling to get home to Daddie after a week-end away, but to return home to the delicious aromas of a home-cooked Sunday roast, and the sight of a mountain of freshly ironed clothes make it all the more wonderful. Poor Daddie had to stay and 'hold the fort' (one more time with feeling) whilst us gels were revelling at the JTSMA Conference. This can't be easy and is definitely a hazard of the B&B trade that leads to a juggling act for Rolf to try to manage the business; household maintenance; sorting wasp nests; conquering the ironing mountain; wheelchair repair; creating delicious and nutritious home-cooked food and being head of entertainment - all without transport as we only have one car. This situation becomes ever more trying over the summer holidays when the car disappears with alarming regularity and Rolf is continually on the end of the "U" bend duties. I certainly need to be mindful of this before I keep agreeing to all and every offer of activities in order to strike a happy balance.

We also try and juggle the time for Candice and Tilly to make sure that they enjoy a balance of activities together and apart. Last week Tilly had the most wonderful contemporary dance session on the stage of Victoria Hall in Hanley, organised by the "Aiming High for Disabled Children" project. It was a super session and Tilly was blown away with actually dancing on a real stage; having a juice-break in a real Green Room and seeing inside a real dressing room 'with lights around the mirror'. Candice, who was on a shopping trip with Nana, had told Tilly about such delights when she was doing a Shakespearean workshop at this theatre.
Tilly was lucky to be supported at this dancing workshop by her own Personal Assistant, Kirsty, who was inspirational, and I was able to 'hide in the wings'. I did peep out at the final performance and was moved to tears with the show. Breathtaking! Tilly just can't wait to get on stage again and is going to incorporate her arm supports next time for greater effect.

I will try to remember to take my camera with me as Tilly does use them to very successfully in her ballet lessons.

Tilly's psychologist came over and had a great session with Tilly and Laura (another Personal Assistant) and had a good chat about 'making friends' as this is something that Tilly can struggle with. They concluded that Tilly should continue with making positive efforts to make the first move to engage with others in conversations rather then waiting to be approached for a chat. So far this technique has been very productive and has improved Tilly's self-esteem no end. Tilly is supported by adults most of her time, so it is a sensitive judgement to give Tilly space to have ‘girl-talk’ with her mates, whilst keeping her safe. It seems to me that as time goes on Tilly’s PA’s will very much be her mates?
Candice was scooped up by the local Young Carers' Group last week to be taken to one of her favourite places on the planet - Drayton Manor. This amazing group has looked after Candice's needs as a sibling of a child with a disability for many years, but to take this 'coaster queen' to a theme park was right up her street. It is great that such organisations exist and work so hard to make sure that these Young Carers get a special treat every now and then. We all know that they certainly deserve them as the journey of the siblings can be treacherous at times.
Meanwhile, Tilly was treated to the arrival of Lucy from the Children's Community Team who came to support Tilly for the whole day at the Lake whilst we welcomed a PHAB (Physically Handicapped and Able Bodied) Camp. Lucy has been supporting Tilly for years and it was a day that Tilly had been counting down to. Whilst I was out on the Lake, Tilly was having her nails done and playing Scrabble and Uno with Lucy and Nana as the weather was not fit for Tilly to take them out for a sail on the electrically-controlled boat that she uses. This PHAB day was a resounding success thanks mainly to a brilliant selection of volunteer carers (all in fancy dress) who not only gave 110 per cent of themselves at the Lake but had committed to a week's residential with the group! Where do these heroes come from? I was awe-struck by them all.


Tilly had yet another fantastic piano lesson with Fleur using her magical Neater-Easter arm supports. We are all still reeling at the resounding improvement in Tilly's progress thanks to this equipment. Fleur has adapted some of the exam pieces to accommodate Tilly’s abilities, but who'd have thought it possible way back at the time of diagnosis for Tilly to be preparing for her first piano exam? Not me, but obviously Tilly had other ideas!

Saturday was another balancing act as we waved Candice off to her long-awaited and much-planned Unity Guide Camp with one of the other parents whilst I took Tilly swimming and then off to the Leek Show to support Rudyard Sailability. Rudyard Sailability was for once in party-mode at this annual event, celebrating success with planning permission and launching it’s 'buy a brick' campaign. It was a fabulous fiesta-style day that served to thank all those who have supported the Charity on its seven year’s journey to this point and to engage with the public to join in with the actual building project. It was a marvellous occasion with people genuinely delighted with our long-awaited success and keen to be part of the Charity’s future. Tilly and her PA Kirsty were supreme in their efforts to draw crowds into our tent and get them to participate in the fund-raising, and they also had time to disappear with Nana and delight in all the fabulous activities that the Show had to offer.

Tilly snored until nearly lunchtime on Sunday following the hectic activities of the week that was, and I left her there until she woke as I figured that there always has to be a balance between work, rest and play, especially for such busy little girl like Tilly.