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 http://www.movement2.co.uk/ 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.

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 http://www.youtube.com/watch?v=8HWgyVdcM3s 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

http://news.sky.com/skynews/Home/UK-News/Stoke-City-Council-Faces-33m-Cuts-To-Budget-With-700-Job-Losses-And-Closure-Of-Sure-Start-Centres/Article/201011115795957?lpos=UK_News_Second_Home_Page_Feature_Teaser_Region_0&lid=ARTICLE_15795957_Stoke_City_Council_Faces_%3F33m_Cuts_To_Budget_With_700_Job_Losses_And_Closure_Of_Sure_Start_Centres__
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!

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 (www.nsoc.org.uk) 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, www.silvalealtd.co.uk and supplied by www.movement2.co.uk 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!