Thursday, 29 April 2010

On A Roll

So much to tell you, feel like I'm at the centre of a whirlwind of wonderful, positive activity. The weekend was jam-packed with the anticipated rowing, sailing, shopping and trip with the Guides to Drayton Manor. One of the many high points was that Tilly came out sailing with me and felt really excited about it, even though we encountered some 'exciting' winds that left us both squealing!

Tilly had yet another brilliant session with Ruth, the Psychologist, and became quite engrossed in watching a DVD about someone giving blood! We've been reading the relaxation stories at bedtime which are fabulous, if only I could stay awake long enough to finish them. Tilly is snoozing away long before the end!

Tuesday was ace. I had a wonderful day at the Caudwell Children's office immersed in the hub-bub and preparation for the Ball! It is a great focus with Tilly's surgery imminent.

Tilly excelled herself at Horton Lodge and with the support of an ingenious 'Sarah-sytle' (Tilly's physio) Tilly actually swam independently on her tummy. Her smile was radiant, and even though she was unable to talk because the float was on her throat, her eyes shone like beacons.

Feeling so elated and riding on a crest of confidence, we joined in the training with Rudyard Sailability and Tilly decided that this was the time to get back behind the tiller! On a fabulous evening, with perfect sailing conditions, Tilly took the helm and set a course for her sailing adventures for this season. A great challenge after a long winter wondering if she was really equal to it. Tilly whooped and cheered with all turns and took some persuading to leave the water as the light was beginning to fade and Daddie had a home-cooked Shepherd's Pie lovingly prepared and waiting at home.

The joys of the week did a great job keeping Tilly bubbling over, but it was difficult for her to keep smiling yesterday as she went into hospital for the dreaded blood tests and pre-operative assessment. Lucy, a glorious Nurse from the community team met us in the ward and we all did our best to distract Tilly from the inevitable. Amazingly, and miraculously, it was decided that blood tests were not essential on this occasion and all needlework could be done 'on the table'! Tilly almost managed a back-flip in her powerchair! We met Tilly's Anaesthetist, who was wonderful and filled us with overflowing confidence.

Tilly's surgeon came next and he was equally awe-inspiring and left us both actually looking forward to getting the job done! Tilly thought that the fact she would have a huge scar over her knee was 'cool' - a bit like Harry Potters!

We actually danced out of the hospital and had a great evening packing the bags for admission, for Candice's camp at the weekend and going to Guides.

A special bonus was that Sue came for a night sit and I've slept very well and am now about to go and get Tilly up and ready for the 'off'! Naturally, I'm very apprehensive, but I think we're up for it!

Some heavenly inspiration arrived via the ether - I've seen Louis Parson's picture of Tilly's soulscape. It is breathtaking beautiful and filled with astonishing energy that I will draw from and take with us.

On a r

On a r

Friday, 23 April 2010

Back In the Swing of Things

The 0500 alarm on Monday morning signalled the return of the school run. Tilly kept her eyes tightly closed whilst I disconnected her overnight ventilator, took off her toe probe and removed her hand and foot splints. It was a real struggle, but once Tilly realised there was no snuggling back down under the covers, her beautiful green eyes flashed open brightly and it was ‘business as usual’!
During my ‘U’ bends duty I received a call saying that Ruth, Tilly’s Psychologist had managed to arrange a session that day at school to help to prepare her for her forthcoming surgery. It was a great session addressing Tilly’s fear of needles and Tilly reported that she was doing really well and had held a needle and had seen one poked into an orange. I’m so impressed with Ruth’s work and Tilly thinks she’s fab too.
It was great to get back, ‘suited and booted’ to the Caudwell Children’s office this week, although it was a departure from usual job of causing chaos in the Applications Department. The trouble is that they take time to train me on the various duties, but I go and forget it by the next time I volunteer! However, this week I went off to be filmed doing my ‘Talk’ which the Charity can then use in their disability awareness training programme. I was very pleased to have in the audience another Mum who has a child with profound disability, just to see, after all these years of delivering my ‘Talk’, if I’m still on the right track. Afterwards, we shared a precious deep and meaningful conversation that can only be had by two such mothers, and it seems that I’m still hitting home.
I loved being back in the warm waters of Horton Lodge for Tilly’s swimming session and to get Tilly to enjoy ‘swimming’ on her tummy, something she hasn’t done since her spinal rods were inserted in 2007. I cupped her chin in my hand and Tilly paddled her little hands and kicked her legs. We now need to explore different buoyancy supports that will take the place of my hands and she’ll be off!
After swimming we met up with Candice at the Lake where training sessions with Rudyard Sailability have recommenced for the season. It was really gusty evening with ‘rusty’ sailors of all abilities and disabilities squealing and yelping as the wind whirled them into places they didn’t want to go. Unfortunately, it was far too windy for Tilly’s electrically controlled boat, but as we had Pauline’s support, I was able to take my chances out on the water for the first time this season. I was lucky enough to have one of our highly experienced sailors sitting beside me and together we whooped and squealed and as I struggled to relearn the ropes. It was really exhilarating and it felt great to be back at the tiller. Next job is to get Tilly out as soon as possible.
We struggled again to get out the door even earlier for Tilly’s ballet lesson before school, but it was worth it as Tilly continues to make good progress using her newly found approach with her arm supports.
We had a cracking Special Matter support group meeting with speakers from the Common Assessment Framework team and the Aiming High project. These visitors were pounced on by the parents who seized the opportunity to question them on the services they represented, and the support that they aimed to offer. Families described how they were being constantly promised support that never arrived and they were on the point of crisis. A challenge went up for the visitors to take up the case of a one family in the room and they agreed. Parents went on to help and advise each other in a highly charged and motivated atmosphere and conversations were still raging on in the car park long after the meeting had closed. A real triumph and a thrill to be part of a support group in action.
Tilly crossed town to attend her modern dance class after school and then whizzed back her first school where, with the help of Lucy from the Children’s Team, Tilly got ready and had tea before her last ever Brownies meeting. Brown Owl and her team have done a brilliant job and Tilly has had a wonderful Brownie Adventure, being included in all the activities. However, Tilly was delighted to be going up to Guides and is thrilled to be embarking on this new chapter. At bedtime it was almost impossible to bring her down from her high as she marvelled at her new situation – “it’s so cool to be a Guide”, she kept saying and Tilly can’t wait for the next meeting.
I enjoyed a fantastic session with Borderlines at The New Vic Theatre discussing the creation of a work shop for Special Matters to present during a forthcoming Conference which can then be used as a training tool for the future. I adore being immersed in this world of possibilities and Sue, the Director of Borderlines, is quite simply a genius who can get right inside the souls of those who exist on the margins and is able to translate their experiences into unforgettable, thought provoking theatre. Ideas, emotions and feelings whirled around the room and, by the end, we were all charged with excitement as we discovered an outline for our workshop project. I can’t wait!
We had the honour of attending Elaine’s retirement party at Horton Lodge this week. Elaine was Tilly’s physiotherapist who, apart from excelling at the all the usual physical stuff, helped create Tilly’s first dancing frame. Elaine really is ‘one in a million’, who we were privileged to have work with us, a real godsend.
Tilly had another session with Ruth, the Psychologist, today, which apart from being unfortunately cut short, was effective. Tilly has now watched a DVD of someone having an injection – albeit through scrunched up eyes! Progress!
The girls have had Chess after school and we’re now at home ready for the week-end wind down! If we can call swimming, rowing, sailing, shopping and a Guide trip to Drayton Manor a wind-down! I suppose a change is as good as a rest?

Sunday, 18 April 2010

Holiday Magic

The Griffiths family were blessed with a wonderful trip to Chatsworth Farm this week, organised by Special Matters, a local support group for families with children with special needs. It was wonderful to see the animals up close, and so special to be in the company of other families just like ours. It was extra special for Tilly as she took along her friend Rebecca who would also staying for a sleepover.

Back home, whilst I rearranged Tilly's bedroom so that both little girls could sleep on the floor, the girls threw themselves into games of Monopoly, Uno and The Great British Game of Steam. After a favourite tea, they played on the Wii and eventually snuggled up on the couch with a mountain of Easter eggs and drifted and dozed through a DVD. Perfect! What made it even more perfect for me was the welcome arrival of Sue from the Children's Airway Support Team, who came to do a 'night sit', and would be in charge overnight. Sue had a very quiet shift as the girls hardly stirred at all.

Whilst the girls played the next morning I reassembled Tilly's room and tried my best to spring clean the house ready for the arrival of Uncle Frank and Auntie Pat, (Rolf's brother and wife). Fortunately they didn't arrive until late afternoon so I had plenty of time to unearth their bed that was buried under mountains of 'ullage' in the spare bedroom. I do prefer to live in a clean and ordered home, but housekeeping does seem to slip down my agenda which does leave me a bit sad.

However, we were pretty shipshape for their arrival and we all scampered off for a trip to the local carvery which was delicious and a great treat. Frank and Pat just marvelled at Tilly's arm support as she independently took care of her food.

The next day was glorious so Rolf took off with the gang for a splendid day at Shugborough and I stayed home and took care of the 'U' bends at the B&B. When finished I was able to polish off the article for Rudyard Sailability to submit to Geoff Holt which was a great relief. It should appear next month in Yachts and Yatching.

Whenever we have family visitors you can usually guarantee that Rolf will be called upon to do an evening meal for the B&B guests and this, of course, was no exception. Rolf and Frank trotted out and picked up supplies to cover this extra duty as well as a wonderful salmon meal for us. We got away with it and the girls weren't too late going to bed in preparation for the Saturday morning dash to swimming and rowing.

Uncle Frank and Auntie Pat were thrilled to see Tilly swimming on her back and were most impressed with the new float and Tilly's movement through the water. We got to the Lake on time to collect Candice from rowing and were pleased to hear that she'd done very well and appears to be a 'natural'. Bless her, she really does give 100 per cent to everything.

With the sun shining we took the opportunity of spending a couple of hours with Rudyard Sailability. Tilly was feeling a bit dizzy and 'vertigo-ish' so we took up shore duties (catching boats, holding ropes, talking to new members), Candice took out Auntie Pat in an Access dinghy and Uncle Frank assisted Richard out of his electric chair; into a manual chair; into a buoyancy aid; down to the pontoon; into a sling; onto a hoist and then into the boat. Then Richard took control of the boat and treated Frank to a glorious sail around Rudard Lake. The whole process was then repeated in reverse. Frank and Pat were impressed with the whole operation and charmed by the cameraderie, mutual support and ambience at the Lake. We all sat out and enjoyed lunch 'al fresco' followed by a slice of Richard's wife's amazing Bakewell tart. Life really doesn't get much better!

Rolf had had a very busy time at the B&B whilst we were away in the sunshine so he and his brother disappeared off to do a bit of shopping! Meanwhile, the girls played cards in the garden with Pat who enjoyed a pint of warm beer. An interesting juxtoposition of events which tickled me.

We finished off the day with yet another trip out for dinner which was lovely, except that I left Tilly's arm support and suction unit in the pub. Fortunately we were able to pick them up this morning from the Cleaning staff so my panic was over. I just couldn't imagine Tilly now without her magic arm!

After a hearty family Sunday brunch Rolf carried Tilly into Uncle Frank and Auntie Pat's new Motor home. It was fantastic. Guess what! Tilly now wants a holiday in one and is currently searching the internet for a wheelchair accessible version.

The relatives have now moved off up to Huddersfield to see Rolf's Mum and we're left with that 'end of the holidays' feeling - bigtime! It really has been a magical break and we're now getting ourselves organised to get back into the old routine. The girls have got their piano lessons this afternoon and then we're going to have one of Rolf's famous 'Roasts' for tea; catch up on the 'Dorothys' and have an early night.

Tuesday, 13 April 2010

The Human Touch

Great excitement last week when the girls went to the hairdressers. Tilly had a trial run for her Caudwell Ball "Holly Wibbly-Wobbly" hairstyle, and Candice went for a new 'Hannah Montana' look. They both looked fab. Mich (the girls' Godmother) and I spent the session in the tearooms opposite, so the girls felt very grown up and independent.

Candice went off for a birthday party and sleepover so Tilly spent the time working on a certificate for the 'Aiming High' visitors at Rudyard Sailability. Tilly was inspired by the poster created by Candice for the Charity's forthcoming Race Night and spent more than three hours creating her own masterpiece. I sat beside her and observed how she explored the screen and options, never giving up or getting cross, until she succeeded. I was most impressed at her tenacity. The children who received the certificates in recognition of their day at the Lake were delighted, as were all the Carers. It's lovely to see how the personal touch can make such a difference.

We spent a great evening watching Apollo 13 - the mission that didn't make it to the moon and had an epic return trip to earth, only surviving because of the genius of the team on the ground and their collective resilience. It is an amazing film, made all the more special for us because we actually met Buzz Aldrin at the Legends' Caudwell Ball a couple of years ago. Also we'd spent a lot of time marvelling at the space missions at the Science Museum in London during a recent visit. We always say that Tilly would make a brilliant astronaut because of the weightlessness of space, but after seeing this movie she is not so sure! Even more amazing, the next morning we listened to Jim Lovell's voice, the actual Flight Commander of this mission, on the radio, as it was the 40ieth anniversary of their trip! What a humble man he seems.

Saturday morning was given a little twist of the pressure valve as Candice now has to get to Rowing Club at the Lake at the same time as Tilly needs to be swimming; and then needs to be picked up just as we are finishing at the pool. Once again, we couldn't manage these logistics without a lot of support from friends and Crossroads (and pressing the 'fast-forward' switch)! We got away with it!

We didn't stay for long at the Lake as we were off for a special treat with Daddie - a picnic in Hanley Park in the sunshine and then on to Circus Starr ,the Circus with a Purpose! This year the funding will go to our treasured Donna Louise Hospice Trust, Treetops, so it made attending all the more important. We have been to this wonderful circus every spring for about ten years and it never fails to delight us with its unique troop of clowns, acrobats, jugglers, trapeze, etc Rolf usually needs a little recovery time after sitting ringside - so close to so many sequined, thonged-leotards and shapely fishnet-clad legs! He always says "There's something for everyone!" and he's right!

Monday's glorious weather was perfect for our twelve young people and carers that came along to Rudyard Sailability. They were never off the water, both paddling and sailing, or taking a ride in the safety boat which is accessible for wheelchair users. The mix of users and volunteers was vast and the atmosphere so buoyant, with everyone working flat out to ensure that these children had the time of their lives. Candice took out a lovely boy who was a 'natural' at sailing and who was really reluctant to leave - "I want to stay in this boat forever'! That's what it's all about.

I received a surprise phone call whilst we were wrapping up the day from that amazing sailor, Geoff Holt, whose book "Walking on Water" I've been raving about and retelling to the girls. I was so thrilled to have the opportunity to tell him personally that the story of his voyage through life with his spinal injury and then his sailing and life achievements afterwards have reduced me to a pulp, but have inspired me beyond belief. Geoff was very modest and very flattered but had rung to tell us that he'd like to feature Rudyard Sailability as his first 'Club of the Month' in his new post as Columnist on Yachts and Yacthing magazine. What a honour - I've now got to write 400 words by Friday! Best get busy!

Candice popped off again today with her friend for swimming and then a sleepover which was all very exciting. Tilly and I accompanied Dennis, Rudyard Sailability's Chairman, on a mission to 'meet the Sponsors'. What an absolute pleasure to meet the faces behind the logos on the boats and the businesses names that I've been typing for years in the various Minutes. To a man, they were all hard-working and hard-pushed, but with hearts the size of dustbin lids, eager to hear the latest Club news and asking if there was more they could do to help. It was so uplifting to see at first hand such warmth and generosity by such people helping out 'because they can', not for any personal gain.

Tilly has had another session with Ruth, the Children's Psychologist, to explore ways that Tilly might manage her fears for her forthcoming surgery, in particular, the needles and the general anaesthetic. Tilly is really enthusiastic and feels very at ease with the approach and very comfortable with Ruth, which is half the battle. We have got some relaxation and distraction techniques to work on. I am sure all this will be of help, although it is not easy to calm an intelligent ten year old at such times. I feel sick at the thought of it, but also dread that it may once again be cancelled!

There's so much to be said for the 'human touch'. I heard a broadcast on the radio about Mother Theresa in Calcutta who founded a special clinic for the dying. The staff collected these abandoned people and brought them into the hospital to die with dignity, respect and allowed them to feel the warmth of the 'human touch', if only for the first and last time in their lives. It was very moving.

This is something that I have come to notice with Tilly that will always fill me with emotion. Don't misunderstand me, Tilly is forever being hugged and kissed by us all, but forever she has always asked for me to put her arms around my neck, 'let me hug you', 'put my arms around you', etc. and it has never occurred to me until recently just how important it is for Tilly to be able to do this, to express her own human touch. The other evening, after tea, I put my head on the table and Tilly gave me the lightest and most delicate head massage, using her arm support to reach out to me.

How beautiful, and how lovely for Tilly to be able to reach out to touch another person. Something else that we might all take for granted? I know I did

Wednesday, 7 April 2010

Long lost friends

What a joy to be on holiday and not have to get up at the crack of sparrows and do the mad movies dash to get to school on time – it makes going to bed such a pleasure knowing that this pressure is off.
Following a lovely Good Friday Service, complete with hot cross buns, the girls and I turned our minds to the Easter Garden that we were charged with creating to decorate the Children’s window. Floral art is definitely not our forte, but amazingly we really got into it and with the help of some extra thick moss scraped off a stone wall; an upturned broken flower pot; an Easter egg shaped stone and an Easter bouquet from One-Stop our Easter garden emerged. Candice and I carefully transported it down to the Church and we managed not to roll it around the back of the vehicle as we did our ‘Harvest’ offering. Mission accomplished!
Tilly’s Saturday morning swimming lesson was a challenge as Tilly had lost her confidence to swim on her tummy as she had missed a couple of sessions. This is very often the case when Tilly has a break from an activity – we’re just wondering how she is going to be when she gets back into sailing. Last year it took weeks to get her back to sailing confidently again, but fingers crossed it will be easier for her this season. None of this is surprising as it must take such a great deal of courage to carry out such tasks when you are so vulnerable, Tilly’s bravery never ceases to amaze me.
We went straight from swimming into Hanley shopping centre where we enjoyed a jacket-potato lunch which was made all the more delicious with Tilly using her amazing arm support. We then signed in at M&S to help with a Caudwell Children bag pack in their food hall. This is always such a pleasure as the cashiers are so friendly and the customers are so grateful to be helped and so generous with their donations. Once again, this experience was all the more delightful because Tilly used her arm support and was able to help pack the bags. I’m sure that between us we made a veritable fortune for Caudwell Children judging by the weight of the collection tins.
Joy of joys! We found a ball gown for Tilly. This is a great weight off my mind and all we need do now is attach a bit of Tilly-bling to personalise it. I’m on the hunt for stick-on diamante for Tilly’s chair as Tilly is expecting great things on her powerchair when she wakes up after the proposed surgery at the end of the month. No pressure there then! The surgery is actually starting to take up a lot of Tilly’s thoughts these days, so I do hope that she is lucky enough to have it done this time and it can be put behind her.
The Easter Sunday service was extra special because Tilly came out of her chair and sat in the pew between me and Candice, all snugly and warm. The Church was filled with flowers and joy and our Easter Garden looked just fine – we got away with it!
We dashed home hoping that the Easter Bunny had been and left an Easter Egg Hunt for the girls to follow. Rolf had worked his magic and devised a tricky trail filled with mind-bending clues leading to a huge chocolate Staffordshire hoard. This year Tilly declared that there isn’t a real Easter Bunny, but the spirit of the Easter Bunny lives inside Daddie! I’ll settle for that as it’s actually quite true.
Candice and I swept up a mountain of leaves and chopped back loads of deadwood in the garden on Sunday afternoon which was very therapeutic, and made a huge difference to how we look. Tilly bobbed out a few times to join in, but we’ve yet to find a good way of including her into such jobs. I’m sure there will be opportunities when Daddie starts planting seeds ready for his veg plot as this will require a lighter touch.
Daddie created a mouth-watering roast turkey meal for Easter Sunday, rounded off with Easter Eggs, which was divine. We then all piled onto the settee to watch the hunt for Dorothy accompanied by yet more Easter eggs! Bliss!
We had a wonderful Bank Holiday Monday day out with friends to Blackbrook Zoological Gardens. It was certainly bracing, but very beautiful and we managed to find a bird ‘hide’ in which to hide from the cold wind and enjoy our picnic. The girls scampered along the wheelchair friendly pathways gathering up clues and ended up going home with yet more Easter eggs.
We got home to find that Rolf had spent the day sorting out the guest rooms, making lamb hot-pot for tea and scaling a mountain of ironing! Just love that man!
Candice had her friend to ‘sleepover’ with us, complete with DVD in bed and a midnight feast! Tilly is already planning her turn, but we did stay up late and watch one of the finals of Masterchef whilst the girls were upstairs in Candice’s room. We should definitely go for a bungalow for our next house – access all areas!
Tuesday was very chaotic with a full breakfast service for the guests; bacon butties for the girlies; Rolf needing to disappear promptly to deliver Tilly’s chair for its service; stores needing to be replenished; a room needing to be ready by mid-day and a visit from the man from the Council to measure up for Tilly’s proposed new roll-in shower! To add a bit of challenge to the mix Tilly’s back-up powered wheelchair had no power and refused to be charged so Tilly spent the first half of the day being pushed around in this monstrous machine which was tipping her forward as the ‘tilting space’ function is only possible with power. We transferred Tilly to the settee but this did little to help her get comfortable and her lower back started to ache. Daddie came back at lunchtime with a folding manual wheelchair that he’d purchased locally. This was greeted with great joy as Tilly has always wondered if she could self-propel. Tilly did manage a couple of inches back and forth, but generally thinks that battery is her best way forward!
We discussed how it felt not to be ‘independently mobile’, a phrase that we have so often used and now fully experienced. Tilly found that the day had not only been really uncomfortable, verging on painful without her chair, but also she felt as if she’d lost all her ‘power’. Daddie rushed off to collect Tilly’s serviced chair and it was certainly welcomed like a long lost best buddie. Tilly decided that her independent mobility ranks as one of the greatest gifts of all!
I welcomed back Pauline, Tilly’s helper from Crossroads, like a long lost friend after the Easter holiday. We washed Tilly’s hair in the bath and discussed the wonders that a new roll-in shower will bring one day.
As I snuggled down to snooze after this rather busy day there was another long lost friend to welcome as, once again, I’d forgotten to remember that Sue from the Children’s Airway Service was coming to sit with Tilly overnight! What a treat. We had our usual chin-wag and then I skipped up to bed and slept right through knowing that Sue was just outside Tilly’s door should she be needed.
Woke up with batteries once again fully charged and Candice and I made our way to the Lake to support an Aiming High for Disabled Children activity day with Rudyard Sailability. Tilly stayed home with Daddie as she had to be lunched and ready to roll for her new dance class in the afternoon. It was uplifting to see ten young people experiencing the wonders of Rudyard Lake – sailing, paddling and cruising. It was fabulous to see Candice seemingly so effortlessly leap back into a sailing boat and whirl out to explore the Lake with a young person onboard. Candice does this so selflessly and so graciously – I am so pleased with all that she does and I can see how enriching an experience it is for her.
Tilly has spent an enriching afternoon in a dance workshop at Regent Theatre. Dancing is one of Tilly’s passions and she has loved being part of this special monthly group. It’s so good to see Tilly dancing so independently using her powerchair and arm supports rather than her mobile hoist and sling which does require another person to move it around. I was invited to join in but Tilly has banished me to this outer chamber so that she can fully embrace the spirit of the dance without Mummy putting in her pennyworth! Wonderful – I wouldn’t want it any other way!