God's Always Listening

The Special Matters’ Support Group was especially welcome this month as we were treated to a visit by members of the Moorlands Therapists. This group volunteers their therapeutic skills to those living with disability, once a month, at a local ‘drop-in’ centre. How inspired is that? I enjoyed a ‘non-contact’ Reiki massage which seemed to help ease the emotional pressure that had been building up over the last few weeks. The therapist also concentrated on my lower back which is showing signs of starting to ‘give’, probably a result of recent stresses on my mind and body. As any carer will know, the threat of a back problem is a constant nightmare so I am actively working with exercise and anti-inflammatories to make sure my back improves. I could really do with trying to shoe-horn yoga back into my life.

Back issues aside, I’ve always said that it would be marvellous if someone would come around every now and then and throw the vacuum cleaner around our house and dust off the surfaces. I am, of course, fastidious about cleaning our Bed and Breakfast rooms when I am on ‘U’ bend patrol, but I’m afraid that our own accommodation often looks like we’re getting ready early for Halloween –complete with cobwebs! It’s not that I don’t care; it just that I can’t seem to find the opportunity and become overwhelmed with all the extras that a family such as ours has to deal with, and it can get you down. Amazingly, it seems that the Caudwell Children Charity has spotted this need and is offering a cleaning service to local hard-pressed families, staffed by volunteers. How inspired is that? I suppose I could be whizzing round the Hoover instead of writing this Blog!

The girls started back to Guides which was wonderful, especially as Tilly was able to take her best friend along and I was able to leave them there for the first time with Laura from the AMG Caring Agency. Now that Tilly’s Carers feel confident to use Tilly’s suction unit in the case of a choke I do not need to wait around ‘just in case’ which feels good and gives me a possible hour or so to attend to the housework!

It also felt good to welcome Eileen, from the Children’s Airways Support Team, to do a ‘night-sit’. This meant that I could sit up late with her and catch up on the news and then go and have an uninterrupted night’s sleep knowing that she was keeping an eye and an ear on Tilly. These, sometimes weekly visits, are a real tonic and seem to occur just when I need them most.

I enjoyed a joyous sail with a young girl from a local special school at one of Rudyard Sailability’s sessions. Although this little soul is non-verbal her smile and whoops of delight spoke volumes. I also had the great pleasure of sailing on the electronic boat with one of our Wheelies’ Sports Club members. His sailing skill and expertise using the finger-tip controls was phenomenal, and in spite of his considerable physical challenges we powered our way to the top of the Lake in record time. Although there was complete communion in the boat as we raced across the water, this young man relies upon sign language for communication and it made me realise that it was time for me to learn. Bang goes the dusting!

After a skiddingly hectic Saturday including swimming, rowing, sailing and piano it was an absolute delight to settle down with one of my friends from long ago who had kindly mountaineered up from Surrey for a catch-up. I feel so blessed to have such treasures of friends who have kept in touch over the years. We were treated to exquisite Champagne and Rolf served up the most delicious meal of chicken wrapped in pancetta. Good food, good wine and good company – all the classic ingredients of a perfect Saturday night. We managed to behave this time and not stay up all night slurping wine and chatting and actually felt half human the next morning which was most refreshing.

After a family brunch we waved a fond farewell and spent a chillaxing sort of Sunday, doing homework and filling the ‘Operation Christmas Child’ shoe boxes with presents ready to take to Harvest Festival next week. I even managed to throw the Hoover around before being treated to one of Daddie’s scrumptious beef brisket meals with Yorkshire pudding and catching up on the ‘X’ Factor.

After dropping the girls off to school on Monday, I whistled around the rooms taking care of the ‘u’ bends aiming to be ready before the arrival of our very special lunch guests – Ian and Mary Parker. We have enjoyed the Parker family’s friendship for some years now following being advised to go to one of Ian’s Exhibitions at the Victoria Hall, Hanley. We were charmed by Ian’s work and marvelled at his skill and ability of creating such magnificent art whilst holding the paintbrush in his mouth -to see more of Ian's work go to http://www.ianparkerart.co.uk/ Rolf and I were equally charmed with Ian’s twinkling personality and Mary’s genuine warmth and soon become firm friends, enjoying family days out with them and their two girls. Rolf served a scrumptious lunch in the dining room, basking in the splendour of Ian’s snowy 'The Bridge at Chatsworth’ which we are proud and privileged to display ‘for sale’ in our B&B.



Tilly, Laura (Tilly’s PA) and I motored down to Birmingham Children’s Hospital to have a consultation with Tilly’s bone density specialist. Tilly has been receiving regular infusions to reduce the risk of spontaneous fractures as brittle bones are one of the symptoms of Spinal Muscular Atrophy. Unfortunately for Tilly this process so far has been very traumatic and painful as the medical team find it almost impossible to locate a suitable vein. Tilly has been having a course of therapy from a wonderful Psychologist who has been working on ways of Tilly coping with this issue. Tilly was all revved up and ready to go yesterday, only to find that the infusion was not actually scheduled and it was only a consultation. This situation was met with a mixture of relief and disappointment on all sides, however the infusion and a bone scan will be scheduled during the half term holidays so that Tilly will not have to miss another day of school.

We got home from hospital to find my lovely friend from Melbourne who’d come to stay with her daughter and her friend and daughter. Quite amazing really as I’d been saying to Tilly over the summer how much I missed my girlfriends from days gone by and, it seems that the Lord was listening and has sent over a veritable wave of ‘old’ friends over the last few weeks, from all corners of the globe, to top up my ‘special friends-ometer’. This is obviously what can be called a real 'Godsend'!

The Power of Love

The luxuries of the summer holidays seem a faded memory as we settle back into the school routine. It is hard to get up at 0500 to make it out of the door by 0815, but at least we have the pleasure of Candice reading to us whilst we get ready. This reading opportunity is the most marvellous distraction for us all – Candice has read to us all of the Chronicles of Narnia and is now on the 4th in the ‘Potter ‘series – she is a gem!
We spent last Saturday helping out Rudyard Sailability who was hosting an “Aiming High for Disabled Children” session. This was the last of a long series of visits by this Government funded project and it was wonderful. Tilly rolled on to the wheelchair-accessible safety boat and helped out with rescue with her helper Jess; Candice took out two sailors and I helmed a bell boat with ten paddling passengers. The sun shone, probably for the first time for this group, which was an added bonus, as we have not been blessed with good weather and have lived in our waterproofs all season.

Still, the rain didn’t dampen anybody’s pleasure and the Charity has welcomed over two thousand visitors this season which is fantastic. We’ve just got to get through the next couple of weeks working with the local Special Schools before our current dilapidated boat store is demolished, as per the local Council’s Enforcement Order. Our stock will go into store, but we have plans to build a new ‘flagship’, fully-accessible boat store ready for a grand opening next Easter – we’re just short of the £400K needed to do so. All at Rudyard Sailability believe that we have the power overcome this significant barrier, and are willing to consider any suggestions – www.rudyardsailability.org.uk
The girls were back at the piano early Sunday morning with Fleur, their teacher, and were relieved that they hadn’t forgotten everything over the holidays. They are both at Chess Club, at the moment, and felt reluctant to go along convinced that they have forgotten how to play that too! It’s amazing how quickly we can feel unsure of ourselves. I’m sure they’ll be fine once they get going.
At Church we learnt about the Children’s Christmas Shoe Box Appeal http://www.operationchristmaschild.org.uk/ and have set about loading up shoeboxes with Christmas gifts ready to take to Harvest Festival which will then be sent off to Romania. Most children in our society have so much in excess of everything, it is hard to believe that there are so many thousands of children, not so very far away, who have so very little. We are certainly very privileged indeed, and I constantly thank God for all our blessings and remind the girls too on a regular basis.

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Daddie’s meals, ‘like a proper family for once’ were such a joy as the school term is so filled with activities that we rarely manage to eat together during the week, and they were flavoured also with the welcome return of family favourites Strictly Come Dancing and The X Factor

I’ve been in for a session with Simon from the Design Team of Caudwell Children to work on the last few items of Tilly’s book, Tilly Smiles. It seems that the finger is hovering above the ‘print’ button which is very exciting.

I attended the funeral of little Jack, aged six, who had drowned whilst on a holiday in Mexico. It was just as anyone would imagine it would be – heartbreaking and highly emotional. It seemed impossible to be able to celebrate the life of this beautiful little boy until his Daddy got up and told us little stories about his little lad’s character. Jack’s Mummy got up and told us what a happy little boy Jack had been, and how he’d made everyone else so happy too. Jack’s young sister (Tilly’s friend) got up and told us that she would never forget ‘her bro’ and would say hello to him every day. Jack’s amazing little spirit had given his family the power to lead the way and celebrate the life of their child, and they did him proud – a supreme tribute to a sparkling little boy. The rain hammered down outside from leaden skies, but inside, the Church was filled with a glorious outpouring of love that is almost too deep to describe.

Sometimes there are no words

The girls are settled back into school and I've found a little time to visit Blogsville again. The six weeks off were fabulous, but they certainly flew by.

One of the most amazing highlights was Tilly being invited into the Caudwell Children offices on the pretext of doing some routine PR work. Rolf was in on the surprise that Tilly was to be presented with her Soulscape that Louis Parsons had painted for this year's Butterfly Ball. This beautiful 5' by 4' masterpiece was purchased for a staggering £120,000 for the Caudwell Children to buy powered wheelchairs for children with mobility needs like Tilly. As the picture was carried into the room, the air was charged and the room fell silent. It is an awesome piece of artwork that commands attention and wonder. The owner believed that the artwork belongs with Tilly. This priceless act of generosity left me speechless - there can be no more precious a gift than a representation of your child's soul.

Tilly is thrilled and Candice thinks it is 'cool'. Daddie tried to rearrange the Hannah Montanna posters around Tilly's bedroom to accommodate the artwork there, but he eventually reorganised the dining room; allocated an empty wall; and now Tilly's Soulscape stands in pride of place for all to see. Our B&B guests can't believe their luck that they too get to enjoy such a remarkable piece of art.

On the way to 'Nana's' for our annual seaside holiday in Wales, we met up with a special friend and her five children, in the rain, at the Black Country Museum near Birmingham. In spite of the inclement weather, it was pure joy to meet up at such an interesting place and catch up on the news. Nix and I shared an extraordinary chapter, exactly twenty years ago, when as BA Cabin Crew we were both caught up in Saddam Husain's 'human shield' in Kuwait during the Gulf War. The events, traumas and experiences of those scorching days couldn't be more different from the challenges that we both face today, and although we did not mention our unique anniversary, the feelings and emotions that we shared were, and will always be, an unspoken, communal landscape for all our talks.

In steaming, saturated anoraks and with soggy sandals we battled on our way in the dark and swirling rain, through clouds of motorway spray, to visit my sister in the Cotswolds. We'd packed kitten-heels and sarongs and imagined that we'd 'click-clack' and float our way down, in the setting summer sun, to the local elegant hotel; climb upon a tall stool and 'chink' a glass of champers. Sue and I had been promising ourselves this moment for eighteen years. The elements had different ideas, so my wonderful sister recreated the glamour and glitz of The Lygon, in her own kitchen, and following hot baths and beautifying, the most magical and special evening was had by all. What can I say? Chin! Chin! To Sisters!


The next day dawned with unseasonal stormy conditions as we set off to the Costa del Bridgend. The highlight of the journey for the girls was their first crossing of the Severn Bridge. I wound the windows down and the gale-force wind filled the car with adrenhelin; took our breath away and and sent my hair up into a temporary beehive. The whole way across, us three girls 'yahooed' to outdo the noise of the howling wind and celebrate our arrival into Wales. It was very exhilarating, even Candice thought it was better than a roller-coaster ride. As we rolled along I noticed the astonished looks of the other drivers at our spontaneous outpouring. When we approached the barrier the kiosk attendant asked if I had anyone else in the car with me as they couldn't see anyone through the tinted glass! I cringed as I realised that I must have looked a proper Charlie without the solidarity of the girls yahooing alongside me! I'm surprised they let me in!


We arrived at my lovely Mum's, and spent the next hour getting all of Tilly's equipment moved in and in place. There really is an unbelievable amount to take along, even for a short break. With the weather against us we opted for trip to the local shops instead of the beach and Tilly was treated by Nana to a pair of silver high heels! There can be no greater joy for such a little girl! Tilly actually slept with them beside her and actually dreamt of them. A fair swap for her usual plastic splints that she needs to wear 24/7, and to be enjoyed only on high days and holidays.



We were then blessed with sunshine for the rest of the holiday and so we spent every day at the seaside complete with wind-breaks, all-terrain buggy, fish and chips, ice-creams, donkeys, sandy sandwiches, funfair, slot-machines, bingo, etc,etc. We were joined by various family members on different days, but sadly Daddie wasn't with us as he was left at home, as usual, holding the fort! Candice was a star and zoomed across the sand with Tilly, splashing through the waves and exploring the rocks.


We stayed at the beach until the sun went down and enjoyed lovely evenings with my brother and sisters catching up on all the family news. We were introduced to 'Millie', a ten week old golden Labrador and naturally, we all fell hopelessly in love and toyed with the idea of 'dognapping' her back to Staffordshire. My lovely Mum and Auntie Val worked tirelessly to ensure that we all the best summer holiday ever complete with picnics and faggots and peas!

During our holiday we received the harrowing message that a friend's little boy had been drowned whilst on holiday in a paradise resort in Mexico. There are no words to describe the impact of such news as I am sure that only time will bring any sort of recovery. We have put the family in touch with our local Hospice, Treetops, who have offered to help in whatever way that they can. I don't think that many people realise that most hospice's will do their best to help any family who has to endure the agony of the loss of a child, whatever the circumstances.



On another day we made an expedition through the valleys up the mountains where we hand-fed the wild sheep and scaled a mountain. It was majestic and so uplifting to see Tilly making it to the summit with the valiant strength and determination of her cousins who took charge of Tilly's buggy. Later that night, Tilly's choice of song in the shower was naturally, "You raise me up, so I can stand on mountains.." It was choking to hear how much Tilly appreciated her ascent and her words served as a timely reminder that we can all be 'lifted' in many different ways, when we need it most.


It was wonderful, however, to be home again with Daddie who had moved his own mountains sorting out the house, business and garden whilst we'd been away having fun. We all enjoyed a very special family day out to Treetops Has Talent, where Candice played the piano and Tilly sang, "What About Now?", by Westlife, alongside other brave souls who wowed us with their performances. This is definitely a top day out and a firm favourite with Tilly who plans on being a pop star one day and is working on her repertoire!

The girls have also enjoyed a training session with Rudyard Sailability and have made good progress towards their Royal Yachting Association, Stage 3, which is wonderful. We squealed our way through a very lively sailing session with Tilly's finger-tip controlled 'Barbie' Access dinghy coursing along on its side with her pony-tail dipped in the Lake. My heart was in my mouth! Tilly loved it, and is even more determined to become an Olympic competitor of the future - no doubt between recording contracts! I bow down to Tilly's incredible ambition.

The return to school with its early morning scrabble has been quite painless, but made a little more challenging with a 'sleep study' for Tilly for a routine check on her respiratory condition. We pitched up at Intensive Care bathed and in pyjamas at 8pm - got Tilly all 'hooked-up' by 9pm and then amazingly were on our way out of there by 0630 the next morning. Tilly's only regret was that she didn't get to spend more time with the Nurses whom she adores.


The week-end has arrived and it will soon be time to enjoy Daddie's fish and 'African potatoes' like a proper family for once. The time has arrived for a sweet vermouth on ice with a slice of lime. Need I say more?