Thursday, 9 December 2010


I have been hopelessly snowed under and unable to make a visit to Blogsville. I have felt like Bambi on ice, struggling to keep upright on such a slippery surface.

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!

The girls helped out at the Church Christmas Fair selling beautifully decorated ‘boxes of love’. They managed to sell all their consignment to many happy shoppers, except for one unhappy family who said that their box was empty. The girls explained that it was up to the purchaser to fill it with love, but they were not impressed with the concept until they received their £1 back. Interesting that love needs to be something that you can see or touch for some people.

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?

The Griffiths’ Ladies took part in the Annual Cheddleton Pudding Race for Cancer Research. It includes a very challenging two mile ‘Fun Run’ in which we have taken part over the past ten years in various guises and using a variety of different modes of transport from prams to push bikes to powerchair. In one event I actually felt like the pudding as I was well into my pregnancy with Tilly! This year Candice sped off at great speed and clocked up a PB, and Tilly donned her Snow Princess outfit and also made it in record time with Mummy Christmas hot on her wheels! It certainly the most picturesque of races with snow-clad fields and frozen hedgerows, but boy oh boy, it was cold. Once again Tilly’s little fingers became almost immobile in the arctic conditions and we were glad that we took along a hot water bottle to keep her going.

Tilly and her two friends spent hours practising singing and dancing to Miley Cyrus’ “The Climb” for a talent show at Guides. I was so impressed at their devotion to the task and thrilled to hear that they had won first prize! Tilly has since entered a Year 6 Talent Show audition at school and is eagerly waiting to hear if she has made it through to the sing-offs!

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.

A definite highlight of the past few weeks was being voted onto the Board of Trustees for the Caudwell Children. In swirling snow, Tilly, Laura and I mountaineered our way over to John Caudwell’s office so that I could attend my first meeting in my official capacity. It is an incredible honour to be invited to take on this role and I am immensely excited to see how I can help shape the future of a Charity that means so very much to us. The Caudwell Children has magically transformed so many families in so many ways and I would love to think that I could help continue to create magic for others.

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!

As it turned out, it was probably just as well that Tilly was unable to have the medication as the next day saw the onset of yet another cold. The school was closed anyway, so we spent the next couple of days staying cosy and getting the house ready for the Christmas visit of our beloved Nana, Auntie Chris (my beautiful big sister) and Uncle Dave. It was pure joy to see Tilly, thanks once again to the wonders of her amazing powerchair and arm support, decorating the tree and wrapping her presents. The difference that the right piece of equipment can make to a life never ceases to amaze me.

The family visit was glorious; Chris cracked a bottle of Champagne and we shared our presents. Rolf treated us to the most delicious traditional Christmas fayre, including Christmas crackers and a flaming Christmas pudding! Dave was in charge of board games and the girls entertained us with charades, piano playing, and ballet performances. The visit included a Griffiths Christmas tradition of watching Ross Kemp’s ‘Scrooge’ and we even had a visit from my lovely Daddy’s sister, Auntie Mary and Cousin Jean and husband Larry – perfection! We’ve always said that Christmas was a ‘moveable feast’.

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.

It was great to get Tilly back into school again. I must say that she did look very smart in her new military-style cape, only £6.00 from Primark, and so easy to get on and off. It’s just so pleasing when fashionable items are also accessible. She’s also thrilled with Primark’s £6 khaki leather finger-less gloves that might just keep her warm whilst she feels cool!

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......
 It really has been a time filled with amazing people, paid and unpaid, going out of their way, in spite of perilous and treacherous conditions, to serve others. I believe that all of them are heroes and it’s just wonderful to have the opportunity to commit to print how wonderful they are.

Wednesday, 17 November 2010

Growing Pains

I popped along to the Caudwell Children’s offices and was amazed at what I saw. The Applications’ Department was being manned expertly by five amazing Volunteers. The Managers had been called away unexpectedly for at least a week, and this team of willing helpers all stepped in together, upping their hours, to make sure that they kept the operation running. This selfless act meant that families working their way through the system would not be too inconvenienced at this unexpected loss of office staff. What stars!

Steve from the Charity drew my attention to some photos of Tilly taken during her recent “Go for it!” family fun day. Tilly is still talking about it and is so looking forward to getting another turn of such great activities such as Cheerleading, Boccia, Curling and Wheelchair football. Bring it on!

We enjoyed a visit from Rolf’s brother and wife – Uncle Frank and Auntie Pat – and Rolf treated us to some gastronomic delights whilst we reminisced over the amazing African Adventure that they had made possible for us whilst working overseas. I still marvel at the fact that we really were there, under Mount Kilimanjaro with all our attendant needs, and naturally, we could never have managed it without their support.

The Special Matters coffee morning was well attended and we were treated to a visit from Amanda from the Caudwell Children. It seems that there is a little pot of funding that needs spending on activities for children with disabilities so this seems like a golden opportunity for both organisations to work together. It’s wonderful that the supported ‘family day out’ is so valued by such agencies, as they certainly mean the world to families such as ours. Without such support there are many who would never get to the pantomime, theme parks, museums or the seaside, as the logistics, expense and stress factors would make it out of the question.

I also took the opportunity of sharing with everyone the success and joy that we are enjoying with the 'Emergency Transfer Sling' from which featured in the last Blog.  It was almost heartbreaking to see so many of the carers falling on such information, wondering where such equipment had been all their lives.  Just because our children grow it does not mean that they no longer wish to leave their wheelchairs to sit on the beach, or on a funfair ride, where specialist moving gear is not in place.  I think this sling is a godsend and has already transformed Tilly's swimming session.

Tilly had so much fun running the ‘Play Your Cards Right’ game with her best friend Rebecca at the School Christmas Fair. The best bit was the banter that she had with the customers as it gave her an opportunity to chat to other pupils that she would never normally engage with. The worst bit, however, was that “it was the first time that someone has ever been mean to me”, as one young punter thought it good sport to make fun of Tilly’s voice. I’d given Tilly the independence to run the stall without me, but that came at a cost of not being there to protect and defend her. I guess that is what ‘growing up’ entails, but it did make me sad, a sort of ‘end of innocence ‘moment, that there are people out there who would like to hurt her. The young person in question will be dealt with by the school, and I will continue to think of way to enrich the quality of Tilly’s rather ‘thin’ voice caused, no doubt, by muscle weakness in her throat?

I got lucky on the raffle and won six months’ membership of the local gym, and as much as I could really do with such a prize, in reality I know that it would be wasted on me. I had great pleasure, however, in passing it on to a very special friend who is able to make the most of it, proving that it is really much better to give rather than to receive as the 'feel-good factor' was ten times better than hours on the treadmill!

Whilst Candice was away at a regatta with the local Rowing Club, Tilly represented the Guides at the Remembrance Service at Church. It was a highly emotional gathering, made all the more poignant with a Bugler playing the Last Post and Reveille. Outside in the foggy November morning, the Bugler played once more, and those emotive words rang out, “At the going down of the sun and in the morning, we shall remember them.” Tilly joined others and laid a wreath at the Memorial. Like most present, I choked back tears. Tilly later revealed that she too had been moved to tears.

I think my little girl is growing up.

Monday, 8 November 2010

The Sky's the Limit

The 0500 alarm clock signalled the return to school routines following a busy half-term holiday. It is very black and quite chilly at this time of day, but my darling Mum has imparted the wisdom that you only need to get up the once, and this notion seems to help (a bit)!

Tilly seems to be over the chest infection that she picked up over the holidays and has finally finished the anti-biotics – the second lot already this season. However, I have noticed that Tilly seems actually at more risk of a choke towards the end of a cold, when I think that ‘we’re over the worst’. We’ve definitely had a few dodgy chokes and one serious aspiration when we’ve thought that Tilly was on the mend. At this point the secretions are particularly thick and sticky, and can present a problem when least expected. At least when Tilly is in full swing of an infection I’m ‘on the case’, suction unit at the ready and in almost constant use. Perhaps there is a false sense of security that develops that needs addressing?

Tilly is now into her winter respiratory routine which includes a daily dose of preventative anti-biotic, and a daily wobble on her “shaker-maker” or Hayek Oscillator which helps keep her chest as clear as possible. It is all very busy and sometimes rather stressful as we race against the clock, but Candice is a wonderful help, and is also reading Harry Potter to us which does bring about a sense of calm. I am hoping to use some of Tilly’s Direct Payments to have some help in the mornings which will certainly take the pressure off us all, and will hopefully buy enough time to get Tilly up on her feet in her standing frame again. I carry an enormous burden of guilt if Tilly is not accessing all the therapies that she could be.

We were invited to Westwood College this week to see how their adaptations project is going in readiness for Tilly’s admission in 2013. We were delighted and amazed to see how much thought and consideration had gone into ensuring that students who use wheelchairs will be able to move around the site. Fantastic and bravo to them!

Candice went to a Chess competition on Tuesday evening and was not back until way after 10.30 pm which was very late for the Griffiths’ household and had us all yawning for the rest of the week. Rolf took the time to start the Christmas shopping which has left us all in awe as this is a task usually reserved until the very last possible moment.

It was good to see Tilly back at ballet, and I am adding the link so that you can see just how Tilly manages to dance and access other things using her amazing arm supports. I just can’t imagine life without them now.

Another luxury that I cannot imagine managing without is the night-sitting service that we get from the Childrens Airway Support Team about three times a month. Sue was extra welcome this week as we were all running on fumes. I have such a good night’s sleep knowing that Tilly is being so carefully and lovingly monitored whilst I stack up the zeds.

I attended a meeting with Dennis from Rudyard Sailability and British Waterways to find a way forward in our endeavours to put in the concrete slipway for our new building, in the face of rising water levels. It was a very positive meeting and it is hoped that a dam will go into the bay of the Lake soon so that work can commence. The only trouble is that it has not stopped raining since, and we are concerned that we will miss this vital window of opportunity and our building project could be delayed for a whole year. Progress is really in the lap of the rainclouds.

During this meeting, however, I received a call from Ben from Caudwell Children, and within a twinkling of an eye, Tilly and I were doing a piece to camera for Sky News on the cuts to Children’s Services
It really is a funny old world when the most vulnerable of society appear to be the first to make the sacrifices. It is hard to imagine that such economies will actually lead to savings in the long run.

During this week’s Chess Club, Daddie was hard at it in the kitchen and garden in readiness for this year’s Griffiths Bonfire Night Party. It really was the best celebration yet, with a roaring fire, gluhwein, hot-dogs, stuffed jacket potatoes, parkin cake and a spectacular firework display. As an extra bonus, Tilly managed to stay outside with us for the whole time, braving the whizzes and bangs that normally send her for cover. The only sadness being that our camera is kaput!

Swimming this week was ever more manageable as we took along Tilly’s emergency transfer sling again. Where has it been all our lives – it’s brilliant. We’ve ordered the second one so that we can work with a dry one and wet one.

Saturday night was Daddie’s “Curry Nite” which was scrumptious. I think that Rolf’s cooking, along with his ironing and impressions are just three of his best qualities. Another one is his ambition for the future; “The best is yet to come” is his motto which I think is wonderful.

Rolf took the girls to their piano lesson with Fleur this week and is delighted that the new ramp to get Tilly into Fleur’s house works. Tilly came back full of joy because the Christmas songs actually sounded like they should as she is using her arm supports to play.

Tilly and I then had a fantastic time at a Family Fun Day which offered a range of sporting activities for those who live with disability. Tilly started with the Cheerleading and was thrilled to have made up a chant, as well as dance to one of her all time favourites, “Reach for the Stars.” Tilly then went on to have a go at table tennis, which to our complete amazement, and a bit of ingenuity with the arm supports, was brilliant. Tilly loved the football and as got her name down for the next football course. My only sadness was that the camera was not working to share Tilly’s smile with you.

This event was a fantastic opportunity for Tilly to break down the barriers and see how she could make sports work for her. The organiser and coordinator in Staffordshire, Mark Forsbrook, is a truly inspirational character who is determined to bring sport and achievement to all, including those who live with severe physical disability. Tilly had a magic time learning how to control the balls in Boccia (which is a bit like French boules) and then went on to beat one of the Volunteer helpers from the Caudwell Children. The winning streak did not stop here as Tilly went on to devise a unique way of delivering the ‘pucks’ in Curling, and much to everyone’s amazement, went on to beat her young male opponent . It looked like an awesome feeling for Tilly. I will certainly investigate the possibility of getting such equipment into school, and possibly Treetops. An opportunity like this would also be brilliant at the Jennifer Trust for Spinal Muscular Atrophy’s annual conference. Tilly has spoken of nothing else since!

Tuesday, 2 November 2010

The Sandbags and the Gladrags

Before half term I attended a radio interview at BBC Radio Stoke to speak on behalf of the North Staffs Orthotics Campaign ( which aims to improve the service of users needing appliances such as splints and spinal jackets, etc. The interview was to explain the importance of good Orthotics care and to encourage membership as the campaign has been put forward for consideration by the Parliamentary Health Select Committee, thanks to local MP Rob Flello. We did our best in the time considering that we were ‘gazumped’ by the breaking news story of the woman stuffing a cat into a wheelie bin! The Campaign leaders are meeting with the management team of the local service provider soon and Radio Stoke has kindly offered to follow this up.
Strangely enough, the next day Tilly had to go to Orthotics to collect the wrist splints that had been ordered back in August. Tilly wears these supports overnight to prevent her hands turning backwards as her little fingers look like they’d like to touch her forearm. We were treated promptly and greeted enthusiastically, but only to discover that the ordered splints were not fit for purpose. Thanks to the quick thinking of the Orthotist on duty, a perfect pair of wrist splints, that just happened to be sitting on the shelf, was offered. Tilly is so comfortable in them that she now also wears the left one during the day as well, offering increased support and function. Phew!
We then went on to the Caudwell Children offices to meet up with Simon from the Design Team and Tilly, complete with Happy Meal, was delighted to put the finishing touches to her book, Tilly Smiles, during a working lunch.
The Girlguiding Association never cease to amaze me with their selfless volunteering to provide their members with fantastic and fun opportunities. On 20.10.10 at 2010 the local groups of Rainbows, Brownies, Guides and Young Leaders all celebrated the 100 year anniversary of this remarkable organisation with a Glitz and Glamour Party at a local Hotel. Tilly danced herself dizzy, and as I peeped through the windows I saw her leading the conga and having a ball. What more can a Mummy ask?

We had a lovely meeting with Judy Reilly from Staffordshire Life who is doing a feature on the various folk from the Leek area. Judy was enchanting and enchanted with Tilly’s Book, especially the Forward from Bruce Forsythe, so hopefully we’ll see an article in this glossy magazine in the near future.
Tilly had her flu jab last week. It has to be said that she coped with it rather better than usual, and it was not until her little arm was revealed that she actually ‘lost it’. Poor little soul – she was so convinced that she was going to be ‘brave’ and felt so disappointed that I could have cried for her.
We were overjoyed to welcome Auntie Allie and Uncle Mikey (Rolf’s brother) for a night stop. They live over an hour and a half away so their visits are so precious. Uncle Mikey is a dream, and devotes every second to entertaining the girls, and Auntie Allie and I can chew the fat until well after the cows come home – very therapeutic. Rolf created the most delicious meal of chicken wrapped in pancetta – the perfect end to a perfect day. I always feel like I’ve been on holiday when we have such special visits.
Tilly, however, took a turn for the worst the next day and was overcome by one of her dreaded vertigo attacks which sent her whirling into a nauseous oblivion. Tilly was on my knee at the time it struck and all I could do was try and hold her steady over the next six hours as she looped the loop and howled in torment as her world turned upside down. There doesn’t seem to be anything else to do but ‘sit it out’ and pray that eventually it will subside, and eventually it did.

Tilly then slept on and off for the next forty eight hours and woke up ready to take on the world and be equal to one of Caudwell Children’s ‘Gift of a Day’ to Drayton Manor Theme Park, probably the last place that I would contemplate after such an episode. The rain hammered down, but we never stopped smiling as we leapt on and off the rides without the dreaded queues. Tilly’s highlight of the day was three rides on the Buffalo Roller-coaster that Rolf and I managed to man-handle her onto. We were also blessed with the support of a Caudwell Children Volunteer, Sam, who made such a difference to the smooth running of our magical day.
We were then treated to another day of family fun at Alton Towers Theme Park, made all the more exciting as we were trying out our new ‘manual transfer sling’ that I’d seen at The Jennifer Trust for Spinal Muscular Atrophy Conference this year. It was brilliant – and made transferring Tilly onto the rides so easy, using handles instead of grabbing Tilly’s body, and Tilly remarked how much more comfortable it was to be moved in this way. It makes me sob to think how much use we could have made of it over the years transferring Tilly from her powerchair to sledge, beach chair, hotel beds/baths, trains, aircraft seat, etc, etc. This “emergency transfer aid where the use of a hoists are not practical” from Silvalea, and supplied by is awesome, but it cannot be recommended by the ‘powers that be’ because it does actually constitute a ‘lift’ contravening Health and Safety regulations. We are now going to purchase a second one so that it can be used for swimming. It’s amazing how such a discovery can be so life-changing, and will keep us smiling until there are ceiling track hoists bolted into the sky.
More treats as we indulged ourselves in watching the update programme on Tilly on BBC’s Jeremy Kyle Show. It was lovely to have the opportunity to see such a touching ‘blast from the past’ and to hear what we thought of it all back then in the ‘mists of time’. Jeremy Kyle was clearly taken with the girls and their ballet dancing and I’ve heard from the show that there has been a landslide of positive feedback from the viewers. Let’s hope it helps.
The week-end was a whirl of swimming, raffle ticket selling, rowing and filling sandbags! An emergency call had gone out from Rudyard Sailability to help construct a dam by filling 5 ton of sand into bags, and transferring to the bay wall. One other Volunteer, Charlotte Atkins, (who had been the Labour MP for Staffordshire Moorlands) had heard the call and pitched up to help. Other volunteers had just popped to the Lake for a bacon butty and found themselves with a shovel in hand. It was a fantastic effort by all involved and I certainly used muscles that I didn’t know I had, but by Sunday afternoon it was ‘mission accomplished’, and represented another step closer to our proposed new boat store. My lovely Dad always said ‘nothing worth having comes easy!”

Meanwhile, Rolf and the girls did a fine job spookifying the house and carving the pumpkin ready for the Griffiths’ Halloween Spooktacular with the girls ‘witchy-godmother’ as special guest. The girls had created ghastly word searches; ‘hang-witch’ games; ‘pin the cat on the broom’; and then after one of Daddies’ frighteningly scrumptious roast dinners, we ‘bobbed for apples’ and Tilly teased us with the ‘chocolate on a string’ challenge. It was a horrifyingly wonderful night - but having just reviewed the photos, I must remember to take my mask off!

Monday, 18 October 2010

The Cold, The Trips and The Clicks

Tilly continued to battle with her tummy bug last week-end and so spent the week-end drifting and dozing, waking occasionally and, thankfully, showing slight signs of improvement. Jessica came and helped me bath and wash Tilly’s hair on Saturday morning, instead of helping with the swimming, and remarked how horrible it was to have Tilly so quiet. Candice, however, thanks to Daddie being able to hold the fort with Tilly, was able to carry on with her usual activities of Chess and rowing, and even brought home a trophy from the Staffordshire Chess Challenge as U14 Girls Winner. What a Star! It made me realise how exceptionally hard it must be for one parent families when one child is unwell – I guess that life can come to a standstill, especially if there is an additional need.

Rolf stayed with Tilly on Monday so that I could go along to the Treetops Carers’ Support Session which was great. I always love going to the Hospice and feel immediately enveloped in love, care and energy as soon as I step over the doorstep. It’s always a very mixed group of staff, volunteers and carers and the conversation is always vibrant, emotional and helpful. I was able to chat to a Mum going off on Caudwell Children’s Destination Dreams, and it was wonderful to relive the excitement and give advice on an experience that we shall treasure forever. I also learnt that a member of her family has a child recently diagnosed with Spinal Muscular Atrophy, and so we exchanged details with a view to me meeting up with them and seeing what I can do to help. My blood runs cold as I remember our experiences at Tilly’s diagnosis, so let’s hope that I can manage to bring comfort to them at this excruciating time.

Learning, of course, is an ongoing process, and I always learn something new when I talk to other parents and carers of children with disability, and love being able to occasionally pass on a 'gem' that will really make a difference. These days I love to hear the opinions and perspectives of young adults who live with disability as their unique and personal insight into living with disability can do so much to help us along our way. I appreciate that as much as I might try to really understand how Tilly feels, my views are only perceived ideas based on what Tilly says and does. As Tilly progresses, she might well be less likely to share her thoughts with me so I do appreciate and welcome the thoughts and feelings of others who have already 'been there, done that and got the t-shirt!' I also expect that Tilly will go her own sweet way, but every little helps when it comes to parenting.

Before getting back to Rolf and Tilly I gave a guided tour of Treetops to a GP in training and I felt very proud to show him around all the magnificent facilities on offer. He was certainly extremely impressed and remarked on the incredible sense of community and camaraderie he could feel. I think it is very often the case that people think that children’s hospices must always be very sad and tragic places, but this couldn’t be further from the truth at Treetops.

It was good to see that Tilly was very much on the mend and had spent the morning making flapjacks with Daddie. It was a great pleasure to send Tilly off to school on Tuesday morning and I was able to go along to the Caudwell Children’s offices and try and lend a hand with whatever was going on. I love being with the Caudwell Children Team, and always leave feeling really ‘charged up’ as they are so dynamic in their approach.

The ‘Airways’ Team came by and adjusted Tilly’s ventilator as a recent sleep study showed that more support was required when she ‘dipped’ in her oxygen levels overnight. I was then treated to a super night’s sleep Sue from the Team came and did a night sit.

It was wonderful to be able to accompany Tilly on a Geography Field Trip to Carsington Water, near Ashbourne. We travelled in the accessible mini-bus with a few other children and the majority of the classes went on a coach. It was cheaper to the travel this way as coach companies are entitled to charge a premium for their wheelchair accessible vehicles. I can’t believe that this is quite legal these days, but apparently it is, which is quite remarkable. The extra cost for Tilly to travel with the rest of her schoolmates on the coach would have been £90.00 on this occasion. In her First School there was an additional charge of £40 every time Tilly travelled on a coach.

However, we did have a super time pond-dipping, sketching, examining habitats, all of which was fully accessible for Tilly. The major challenge was the cold as Tilly’s hands became so cold that she couldn’t drive or hold a pencil. This is a constant winter problem as Tilly finds wearing gloves so difficult as her finger-tip controlled joy-stick is so sensitive. The closest we come is cotton, finger-less gloves which do help a bit, especially with those little sachets of hot crystals fixed to the palm of her hand.

It was great to see Tilly back in the pool again, but once again, Tilly struggled to stay warm as the water temperature was low. We’ve tried wet-suits but they do restrict Tilly’s limited movements, which in turn, doesn’t help stay warm. I’ll have to look into what’s available this season.

Tilly has pedalled for up to an hour nearly every day on her exercise machine which
is brilliant, as she is not only getting fit, but whizzing through her reading books.

Poor Candice got a shock at Church this week when she was called up, unexpectedly, to do the first reading which just happened to contain many difficult to pronounce place names. Normally we’ve practised the reading during the week, but for some reason, we had not noticed that it was Candice’s turn. Candice walked slowly to the lectern, skimming the words on the way, those who’d noticed she’d been caught short offered up a prayer and I held my breath. No need to worry – Candice read like a dream, and was heartily congratulated by all for her achievement. Bless her, and to think that Candice had received speech and language therapy in her early years to help manage a stammer.

The rest of the week-end was spent packing and preparing for Candice going off to Outdoor Pursuits Trip with School. Candice is so excited and I’m sure will get one hundred per cent of all the amazing activities on offer. Rolf and I are missing her already, and Tilly would like Candice to ring us every night and read us some Harry Potter!.

I so wish I was going along too, but I might just get a chance when it is Tilly’s turn as we did have some fun when we went on such a trip with the First School

Rudyard Sailability had some good news that out of a field of seven hundred entrants it has been chosen as one of three finalists for a national award from the Directory of Social Change. The winner will be decided by public vote, so I do hope that readers of this Blog will kindly consider voting for Rudyard Sailability and take a few moments to visit,9D3S,2LKRBY,QFOV,1

Many thanks,every click will help.

Friday, 8 October 2010

Time Will Tell

Last Sunday morning was D-day for Rudyard Sailability. A call had gone out to all Volunteers to come forward and move out the last of our stock from our dilapidated shed into a winter store, so that the building could be removed to comply with the local Council's Demolition Order. It is planned that we will build a fully-accessible boat store with changing facilities ready for next season. It is a tall order, but, time will tell if we're up to the challenge.

Through the 'monsoon' I could hardly believe my eyes when I saw the designer wellies and smart motors of two of our most hard-working Trustees, and their husbands, skidding through the liquid mud of the lakeside path. They could have been at home leisurely thumbing throuh the Sunday Press, but they had, instead, made their way to help. As it happened, they were the only two Volunteers that had heeded our call on the day. I stood in awe as they wrestled and hauled cobweb-infested bits of Club 'ullage' into their shiny cars. Charlotte Atkins and Anne Morris have worked 'in the background,' legally and politically, over the years for Rudyard Sailabilty - neither of them sail or have a family member who uses our facilities. Between them they have donated many hundreds of hours and many thousands of pounds worth of their expertise to our charity. They are remarkable; they sit on opposite ends of the political spectrum; and yet here they were, saturated shoulder to saturated shoulder giving of themselves to help others. There were no cameras there to capture their contribution and no campaigns to fight - just a job to do - a remarkable testament to their calibre and an astonishing testament to the power of Sailability.

On Monday, once I'd done the 'U' bends at the B&B, I spent most of the time creating a 'clothes mountain' on the bed as I tried to find an outfit that would carry me through my five minutes talk, as a Caudwell Children Ambassador, at the Irwin Mitchell Party Fringe Event at the Conservative Party Conference. Outfit chosen and laden with fortifying talisman, my big sister, Chris, sent an email with such words of love and encouragement that made me feel so 'charged' that I realised that it didn't really matter what I looked like, it was what I had to do that mattered.

Trudi Beswick, CEO, Caudwell Chldren and PR Manager, Ben Sutcliffe scooped me up and drove me to sunny, swishy Birmingham to take up the challenge. I had a strong message to deliver on behalf of Caudwell Children, with just five minutes to do it in. I had to influence the hearts and minds of the MPs present and inspire them to see the benefits of working with the Caudwell Children and to persuade them to see that in such precarious times there is a need for 'working together'.

The event took place in a seriously glamourous art gallery, Castle Fine Art, - not at all what I was expecting - with champagne and canpapes. It all seemed rather surreal. I could feel the tension beginning to mount as my slot drew nearer. I began to wonder if I was really equal to the job. Fortunatley, I engaged with a fabulous lady called George from Acorns Children's Hospice who, just like my big sister, filled me with belief that I could do it. The event was filling up and I was pleased to see that amongst the MPs present was our local MP,Karen Bradley, who immediately pledged her support for Caudwell Children.

The first speaker was Anne Milton MP, Parilamentary Under Secretary of State (Department of Health). We were really heartened by her speech, and encouraged to hear that she had been a nurse for twenty years before getting into politics.

Next up was David Strudley, CEO, Acorns Children's Hospice who clearly and carefully outlined the brilliant work of hospices and the need for continued Government support.

With my heart fighting to leave my chest; and my lips welded to my teeth, I took to the podium, wishing I'd written the speech down as I was now sure that I wouldn't get it right. I took a deep breath and, mercifully, all sense of nerves left me and I could hear my words filling the room and could see that they were being well received.

My presentation was based on the well-used "Welcome to Holland" 1987 piece of writing that comfortably and conveniently explains what it might be like to have a child with a disability. Basically, the metaphor suggests that planning to have a child is like planning a trip to Italy, but en route the family are informed that they must go to Holland instead. "Holland" is described as not being a bad place and all the family have to do is to get new guide books and make the most of this place which is really rather quite lovely - not "Italy", but not that bad. Families are informed that they will never get over the pain of not going to "Italy", but they have to live with it, as they will never make it to their original destination.

I have lived with this reassuring explanation for years, taking comfort from the notion that it is OK for us not to go to "Italy", and the audience were nodding with approval at the analogy.

Then I told them that earlier this year I shared the piece of writing with my husband and he said, "My plane crashed landed into Holland." The shock of Rolf's response made me revisit the whole concept that it is somehow acceptable that some famlies must settle for less of a life than others. During my talk I invited the audience to take look at the 'Arrivals Hall' into "Holland", which includes all people from all walks of life, feeling lost, afraid, confused, over-burdened by luggage that was never packed; horrified at the disappearance of a sibling; coping with the absence of a partner and the trying to make sense of the signs leading to Hospice Care, Surgery, Orthotics, etc rather than the usual expected fun-filled destinations. The room was very quiet as it seemed that a new vision of "Holland" was emerging and a myth was being evapourated.

I then told the true story of Tilly's remarkable dream - she was looking for Candice who had wandered off to Italy without her. I recounted how I'd gasped in sadness at this apparent mirroring of our life and then Tilly piped up, "so off I went to Italy and found her!" It was like a light coming on. I instantly realised that Tilly has received the support that she needs from Caudwell Children, Treetops, Home-Start, Rudyard Sailability, etc, etc and she has been re-routed and made it to "Italy".

Carrying on the metaphor, I explained that the Caudwell Children have been making their way into the "Arrivals Hall" and managing to get families such as ours to the Transit Lounge and then to the Departure Gate for "Italy". This is an expensive, and unnecessary diversion that needs managing, and is critical if families are to make it to "Italy". Caudwell Children's aim is to avoid these costly 'lay-overs' and arrange for a direct flight, with all the care and support needed, to faciliate a safe landing into "Italy".

I asked if anyone was prepared to join Caudwell Children in such a life-changing 'flightpath' and a resounding chorus of "Yes" filled the room.

The Charity does not yet have a date in the diary to meet with the Government to discuss future partnership work, but it is hoped that such a discussion will take place. Time will tell.

Since the giddy heights of the Party Conference I've come down to earth with a bump as Tilly has succombed to a nasty tummy bug. Poor little soul has tried so hard to get better in time for the vaious activites planned,such as a Chess Tournament, the School Disco, Swimming and Shopping. In spite of Tilly's best efforts she has spent the last four days in a darkened room, drifting and dozing in and out of consiousness, with the suction unit in constant use. Tilly's breathing does not seem to be affected, so hopefully it is just a matter of waiting until the virus passes. Time will tell.

Friday, 1 October 2010

Machine Magic

Tilly has now recovered from her first cold of the season, and it leaves us all quaking and feeling, “it’s that time of year again”. Tilly’s weak muscles result in an inability to cough which means that the slightest sniffle can result in an emergency admission to hospital for intravenous anti-biotics; intensive chest physiotherapy and possible intubated ventilation. Living with the threat of serious respiratory illness is constant, but greatly increased during the winter months. Tilly will take a daily dose of preventative oral anti-biotics throughout the season which, unfortunately, adds to the morning’s stresses as Tilly is rather reluctant to take medicine. These respiratory crises are very traumatic all round and so we do everything we can to avert such an episode.

The first thing we do is withdraw Tilly from school and all activities and start a course of anti-biotics which we keep in stock. Tilly has learnt to take them in tablet form which is better than the syrup, but is still a stressful challenge. I tend to sleep downstairs with Tilly whilst fighting off the lurgy as there is often and increased demand for oral suction and monitoring during the night. Since the age of three Tilly has slept using a night-time, non-invasive ventilator which bellows her lungs with air and helps keep them clear. The pressures on this machine can be increased during a chest infection to improve Tilly’s breathing capacity. I couldn’t believe the change in Tilly’s general health once she was put on this therapy and would thoroughly recommend it sooner rather than later.

Tilly’s heart rate and oxygen levels are also always monitored overnight by a toe probe and are a great indicator if things are starting to go wrong. An alarm will sound if Tilly’s levels are entering a danger zone.

Tilly will have daily sessions of chest physiotherapy starting with ventolin or a saline solution delivered by a nebuliser mask to loosen up unwanted secretions; a session on her Hayek oscillator or “Shaker- Maker” which, via a shell shaped piece of plastic strapped to Tilly’s chest, rattles up Tilly’s upper body and moves secretions up to throat and then delivers impressive compressions to achieve coughs.

Tilly then has an Emerson Cough Assist machine, which is forms a seal over her nose and mouth and blows air down her throat and then hoovers back any lurking ‘rubbish’. Tilly then expertly uses her suction unit to remove any remaining yak which could go on to cause pneumonia. Simples!

However, if all this section management fails and Tilly has difficulty in breathing then we do have a cylinder to deliver a limited supply of oxygen whilst calling the Emergency Services to rescue us. The local First Responders usually arrive before I’ve finished booking the call. Tilly has ‘Open Access’ to North Staffordshire Paediatric Intensive Care Unit and they have managed her care brilliantly over the years, but, as much as we love them, we do our level best not to make an emergency visit.

Whilst Tilly was fighting off this latest infection, Michele, Tilly and Candice’s Godmother, and I created a floral offering to place in the ‘children’s window’ at Church to celebrate Harvest Festival. Floral art is certainly not my forte so it was great to have Michele’s support. We placed a Christmas shoe box at the centre of the piece to remind everyone that this year we were supporting Operation Christmas Child. I think we got away with it!

We were treated to a visit from Grandma, Uncle Mike, cousin Amanda and Grace - the girls' cousin and God-daughter. Rolf's family live a couple of hours away so it was so magical to spend some special time with them, and Grace just lit up every room. It is such a shame that we live such distance away and don't get to spend more time with them.

It was with great excitement that Tilly took delivery of her new Medicotech exercise machine that has been generously funded by Muscular Dystrophy’s Joseph Patrick Trust. Primarily, this equipment will deliver a passive work-out for Tilly’s arms and legs and give her a good cardio-vascular work-out, as well as improving her circulation. However, the machine is designed so that Tilly can contribute and her input will be recorded and reported back to her at the end of the session. It is brilliant! We have already noticed that Tilly can bend her legs so much easier than before, as they had become rather stiff following surgery in May. The idea is that Tilly can drive into her machine and exercise her arms and legs as often as possible, even whilst watching Hannah Montana! It is quite transportable so I could even take it into school for Tilly to work on during ‘inaccessible ‘PE lessons.

Wouldn’t it be great to see such a machine in other settings such as leisure centres, care homes, day centres or hospices? The opportunities are quite endless as they can be adjusted for different users, and the rewards could be phenomenal.

We somehow made it into school for Tilly to have her ballet lesson with Miss Jeanette which left me brimming with tears. Tilly uses her arm support to dance which have now been adjusted so that Tilly can drive with them in place and it is just such a joyous sight to behold. Who’d have thought that Tilly would be working on her third British Ballet Organisation award? Just need to create an outfit for the exam which will probably involve Tilly’s faithful and creative Godmother and her sewing machine again!

Unfortunately, with all the early morning rush and trying to remember everything (suction unit, arm supports, school bag, lap top, dinner-money, reading book, splints, etc) I forgot Tilly’s boots which cover her splints! Tilly’s feet are encased in rigid plastic ‘ski-boots’ around the clock to try to slow down deformities which occur due to her muscle weakness. They are not the prettiest objects but they do a good job and normally Tilly would prefer them to be concealed beneath boots. Fortunately, it seems that Tilly is now so comfortable with herself at school that she didn’t mind spending the day showing off her pink butterfly splints. I think this might be a good sign?

This has been rather a hectic week with a whirl of extra activities to squash into the Griffiths' already busy schedule. Candice has been busy almost every evening with cross country, chess, netball, guides and ballet and has had to get up at 0600 to keep up with her homework.

Daddie has been busy looking after our B&B, including annual improvements, whilst keeping up with the ironing, shopping and creating the most delicious meals for us. He also went to a meeting at Westwood College where the girls will go next and was most impressed with all the work they have done to make it wheelchair accessible. Rolf has also had to 'hold the fort' whilst I attended my Governors' meeting which have kicked in for the new school year.

Rudyard Sailability has had a wonderful last week of the season with the local Special Schools and I was thrilled to be able to assist with their enjoyment. One more session to go before our dilapidated shed is emptied and pulled down. Work is starting on our new building very shortly, but we are still desperately seeking a secret millionaire to get the job done by next Easter. Anne, one of our Trustees and Legal Representative, put on a fashion show in support of the building fund and we glammed up and went along to help raise some pennies. The evening was a glittering success enjoyed by all. I was especially proud of Tilly who took the microphone and thanked Anne and all present for getting the Charity this far.

I spent some time with members of the Caudwell Children Team discussing the content of the five minutes talk that I, as an Ambassador of the Charity, will deliver at the Conservative Party Conference next week. I feel very honoured and privileged to be given this opportunity and am aware that I will be a very small cog in this giant political machine. We are hopeful that my presentation will have an impact on the audience and bring about new ways of supporting families of children with disabilities.

Five minutes isn’t very long, so perhaps I should politely request that Andrew Lansley, Secretary of State for Health, meets with the Caudwell Children to explore opportunities to refine the political machine so that it will run more smoothly and effectively to release and serve the families who have become crushed and jammed in the works?

Friday, 24 September 2010

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 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'!

Saturday, 18 September 2010

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 –
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 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.


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.

Friday, 10 September 2010

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?