Wednesday, 28 October 2009

Blackpool Rocks!

With Tuesday's reasonable weather forecast and the electricians in the house for the day it seemed a golden opportunity to disappear off for a much anticipated visit to Blackpool to take in the famous "Illuminations". So much better than spending the day in Ward 107 getting ready for Tilly's spinal surgery!

Following an easy journey to the coast, the difficult job of finding the parking spot, we found ourselves enjoying fish and chips for lunch, in the sunshine,on the North Pier. It was glorious. The simultaneous assault on all senses reassured us that we'd arrived at the seaside.

Scaling the mighty Tower was our next challenge, but the guardians could not have made it easier. We were escorted via the staff lifts directly to the world famous Tower Ballroom, where "Strictly" is due to be filmed next week. It is truly magnificent. Our visit just happened to coincide with The Children's Ballet which included Abba routines, Irish dancing, Jazz and a fabulous rendition of the Les Miserables' "I had a dream". Who could ask for more?

From the sumptuous ballroom we were whisked up, like VIPs, via all sorts of back passages and secret doors, to the lifts to make our ascent. The wheelchair assistance was remarkable and we told our guide all about how the girls had raised £1.2 million for the Caudwell Children to buy similar wheelchairs for other children like Tilly. Rolf and Tilly were beginning to wonder if this was all such a good idea, as the ground fell away from them and we found ourselves 'on top of the world ma!'. The views were breath-taking. Candice and I spiralled our way even higher to the highest level and were shocked to learn that whilst we were away Tilly and Daddy had bumped into Trudi Beswick, CEO of the Caudwell Children, enjoying a day out with her husband and little boy! Talk about a small world!

We zoomed down the Tower and found ourselves in need of ice-cream, with the Central Pier beckoning. We snaked through the myriad of fascinating people; dodged the trams; ran the gauntlet through the thrills and spills of the funfair rides; and found ourselves right at the end of the pier with nothing between us and the sunset but a shimmering corridor of light on the sea. It was so surreal to find ourselves so far from 'the madding crowd.'

We tore ourselves away and felt compelled to get onto the beach as the tide was in, and we'd never been on the beach in the dark. Tilly had her socks peeled off, and made tracks in the sand as the donkeys made their last trail for the day. The waves crashed, the gulls cried, the darkness grew and then the lights came on! It was stupendous, cartoon-like, we didn't know which way to look, it was all so amazing.

Our evening meal of freshly prepared sizzling steak baguettes was delicious and enjoyed 'al fresco' sitting in amongst the throngs and excitement of the busy end of Central Pier. The atmosphere was palpable and so convivial.

We crawled along the Golden Mile in our vehicle, drinking in the spectacular displays and planning our next visit which would involve parking up the powerchair, and a ride on a tram and a trip on a horse and carriage.

The girls snoozed all the way home, happy as little sand girls! Blackpool rocks!

Cloud 9

For as long as I can remember I've dreamed of having a ride in a hot air balloon, and amazingly, on this cloudy Monday in October my dream was about to be realised! We had won two tickets at a raffle at the Jennifer Trust for Spinal Muscular Atrophy annual conference and Candice was up for being my flying companion. Rolf and Tilly were only too happy to be 'balloon chasers' - with heights not being high on their list of things to enjoy!

We had a stunning ride though the autumnal colours to the Showground in Bakewell and all joined in the task of getting the balloon ready for flight. We were all struck with the enormous size of the 'envelope' and the incredible noise of the flame as it heated the air that had been blown inside it. I have to confess to feeling a little heart wrench as we kissed and hugged Rolf and Tilly goodbye and scrambled into our seats inside the basket. It was rather emotional as we effortlessly drifted away, soaring high above the ground, with Rolf and Tilly becoming smaller and smaller.

The silence was actually golden in the seasonal light, with the sun setting slowly behind us, lighting up the October leaves. Over the highest ridge, Chatsworth came into view, and I felt as if I could cry What a privilege to be witnessing such splendour, taking part in such a unique activity, with my little girl's eyes shining bright in awestruck pleasure, her smile dazzling, and her little gloved hand tight in mine. I can't imagine being eleven and being up, up and away. I used to watch the 'Nimble' advert on television when I was eleven and wondered.....

Candice's 'best bit', however, was the landing. It was very, very exciting and filled with an anticipated 'rollover' of the basket! The pilot was brilliant. He descended to a suitable spot and the balloon bumped and dragged its load across the chosen field until we came to a stop at an angle of about forty-five degrees. Four strong volunteers were drafted out of the basket to anchor the balloon and stop it being blown onto the road. Once secure, we all scrambled out and began folding the balloon up into a long sausage shape ready to be repacked away. Astonishingly, I heard the pilot speaking to the balloon chasing team and he said that a blue vehicle was already at the gate - I looked up and saw Daddy and Tilly had already found us! Candice and I sprinted across the field and leapt the gate for big hugs and cuddles. It was wonderful to see them again after our lofty experience. Tilly said I must call the Blog 'Cloud 9' because it had been so exciting for everyone and Mummy and Candice actually had been on Cloud 9! Such a wise little girl!

We scooped up fish and chips for the girls which they ate at home with their favourite 'Aunties' from the Children and Airways Support Team. Tilly surprised us with a serious choke that required demobilising the cough assist machine and the suction unit. Sue and Eileen are both experts in respiratory health and it's so brilliant to have their help. Once recovered, all four girls went on to get ready for bed, have false nails applied and then play The Great British Game of Steam Trains. (Sue and Eileen are now hooked and are looking forward to the next game)! It's fantastic to hear the girls having such fun with such special 'family'.

Rolf and I caught up with the jobs and enjoyed a delicious supper of Coquilles St Jacques, with ice cold white wine. I wonder if there is a Cloud 9.5?

Monday, 26 October 2009

Jolly Hollidays

Saturday morning started with an early morning dash for piano lessons - the girls are practising Christmas carols! Candice and I worked on a verse for Standon Bowers, the Outdoor Education Centre that Tilly visited for our book "Tilly Smiles" whilst Tilly was tinkling away (we actually sit in the van during Tilly's lesson, ready with the suction unit in case it is needed).

The rest of Saturday morning the girls watched the premiere of The Wizards of Waverley Place whilst Rolf and I caught up with the jobs. Tilly thinks this is the best film she has ever seen, and I must say that the bits I caught looked gripping, a bit like Indiana Jones meets The Chronicles of Narnia!

We watched the final of Masterchef with lunch and all agreed that Steve was the worthy winner. We've all really enjoyed this series and Tilly does seem to have developed a taste for cooking. I've really enjoyed Rolf's impressions of Michel and Greg!

Saturday afternoon was topped off with all of us playing The Great Game of Britain (Steam Trains) which might sound rather heavy but was hilarious, and very exciting, and we kindly let Daddy win!

Tilly and Daddy cooked up a delicious salmon pasta and we watched "Strictly". Tilly used her 'arm-slings' to cook this time and was able to be even more involved.

Sunday morning saw a busy breakfast service. Two of our guests are the grand-parents of a local young child with a special needs. I passed on the Special Matters Newsletter and hope that we'll be able to welcome them along soon. It does take time, when you join this 'world of additonal needs' to be able to embrace it - for a long time we stayed outside of all the clubs, groups, organisations, etc, just wanting to stay in the world "BD" (Before Diagnosis).

Probably one of the only Sundays of the year that us girls are early for Church - when the clocks go back! May be this shows that families with 'extra jobs' could probably do with an extra hour to arrive at the same time as those who do not? However,we all enjoyed celebrating the Baptism of a beautiful baby boy, and the Church was comfortably full. There's talk of the girls helping to set up a Sunday School which should be interesting.

Big treat from The Mothers' Union on Sunday afternoon. They had paid for the members of Special Matters to go swimming in the gloriously warm waters of Shelton Pool. We were welcomed and helped by the Special Matters' Team and the staff at the pool were ace. The pool was filled with floats and inflatibles and the air was filled with shrieks of joy and laughter. We all agreed that we felt like we'd spent the afternoon in a tropical beach resort!

We returned home not only to find the house filled with the aromas of a delicious roast meal, but the fact that Rolf had managed to scale and conquer the mountain of ironing! (I must check him for wings)!

Our meal was divine, followed by us all collapsed on the settee for "X" Factor. This half term has certainly got us off to a very fine start to the jolly holidays!

Saturday, 24 October 2009

African Dreams

Thursday night was very busy with Candice and Tilly both needing attention. Candice feeling really rough with a cold and Tilly just generally unsettled. I was surprised that Candice felt well enough to go to school. Almost half of the school are off with coughs and colds and Candice seemed determined to keep going until the half-term holiday. Tilly's Teaching Assistant is also feeling unwell and her and Candice both resemble marathon runners on their twenty-sixth mile.

I stayed at school to arrange for Tilly to start having her ballet lesson with Candice at school after the half term (now that the spinal surgery has been cancelled). We'd like to have it on a Wednesday morning 0830 - 0900. All at school very accommodating, just need Miss Jeanette to provide her CRB details and Tilly can begin practising her ballet again.

The school have also arranged for the mini-bus that should be taking Tilly to swimming to come and check that Tilly's chair will actually fit in it. They really have been brilliant and are going out of their way to include Tilly in every respect.

Back at the B&B I immersed myself in the "U" bends and put my mind to the fifteen minute talk that I have been asked to give for the launch of the Children's Trust Parent Strategy. It is enormously curative to be given the chance to tell the 'Powers that Be' what it is really like to be a parent of a child with special needs; what it really feels like trying to make sense of it all; and how amazingly wonderful it can all be, if the right help is put in place. My only anxiety ever about giving 'my story' is that I am acutely aware that I am very lucky to have a 'happy ending' and that there are hundreds of families who never actually get the right help in place.

Lunch 4 2 Club was exceptional. Tricolore Salad on an Olive Oil toasted Crostini. I am sure that both Michel and Greg would have been proud and, of course, Rolf made sure that they put in an appearance!

Chess after school for the girls on a Friday means that I get an hour in the library to catch up on life through my laptop. Perfect peace, and I can uaually get loads done.

After Chess we move on to Tilly's private swimming lesson with Louise, a specially qualified Swimming Instructor. Louise took Candice through to gold and is committed to achieving the maximum level of swimming possible for Tilly. Tilly swims on her back with the aid of an inflatable neck collar. In spite of Tilly's recent illness, Louise encouraged Tilly to perform to the hightest standard. It was so wonderful to watch Tilly swim in a big cirlce, independently. Tilly's smile, as she battled the bumpy water, dodging the other swimmers, was dazzling.

Ellen, Tilly's Support Worker, arrived to help us get Tilly's hair washed in the showers, and ready for home in her pyjamas all ready for bed. It's great to kill two birds with one stone!

Daddy was waiting with the tea of fish and 'African' potatoes (fried potatoes that Uncle Frank had made for us whilst we were visiitng him in Nairobi). An exceptional adventure that we will certainly never forget, and could certainly never have experienced without the generosity and support of Rolf's brother and his wife. We visited the Sheldrick Elephant Orphanage as featured on TV's The Elephant Diaries, and the girls adoped babies that still keep in touch via an electronic newsletter. We stroked a wild cheetah in another orphanage and then went down to Sarvo National Park under the mighty Mount Kilamanjaro to see animals in the wild. Quite life-changing, if not a little scary at times as the threat of violence had reached quite a high by that time and it was necessary to live behind electric fences with armed guards. I can hardly believe that we were really there, and it is great to be safely home again and looking back at our escapades through photographs. Rolf's brother and his wife now live in Chichester, so we are hoping to visit them there too. We anticipate a much more serene experience, but who can say what dreams will be made of?

Friday, 23 October 2009


Thursday was the day for good news. The postponement of Tilly’s operation was a great relief. Then we heard that Tilly’s infusion, that she was to have intravenously every three months, over three days, lasting four hours has been changed to once every six months, lasting half an hour. I’m sure I saw Tilly’s chair leave the floor and her wheels click together in triumph! It will mean a train ride to Birmingham Children’s Hospital as a day patient, and then Tilly plans on ‘hitting those shops!” What a bargain! It is interesting psychology that Tilly had to endure the three day, four hour, quarterly infusions to be so thrilled at only having one for half an hour every six months!

The same sort of psychology applied on February 14th 2001 when were told that Tilly had Spinal Muscular Atrophy. Whilst waiting for two days to see the Consultant in Manchester to assess the severity of Tilly’s condition, Rolf and I were convinced that Tilly had the most severe form, Type 1, which came with a dire prognosis. We were destroyed. We simply collapsed physically and emotionally and my big brother Paul hitch-hiked from Wales to support us and get us to the appointment. We were dazed and confused with our heads down, when an unforgettable Irish voice said “Tilly’s a fine ‘Type 2’, so she is!” I remember being amazed and asked, “Can we keep her?” The same Irish brogue said, “Sure you can, and you’ll need a powered wheelchair for independent mobility and nothing less than mainstream education”.

Well, I don’t remember much else at that meeting except the unbelievable joy at the miracle of being able to ‘keep’ Tilly. What should have been devastating news, that our little girl had Type 2 SMA and would be seriously disabled all her life was like music, because we could keep her. Nothing else mattered. We danced out of there, holding tight on to our baby, honoured to be given the privilege of giving her and her sister the most magical lives possible. Two days earlier Rolf’s Valentine’s present was a small picture frame, and I’d written on the blank insert “We Can Do It!” Now, although I knew it would be challenging, I believed that we could.

Back to Thursday and Tilly’s wheel-clicking, and Ellen, Tilly’s Carer and Becky, BBC Radio Stoke’s Reporter arrived at 1600. It was great to have a catch-up. Candice had had a reprieve from hockey so she was home for a change on a Thursday and able to squash in a bit of homework before flying off to dancing lessons. The girls watched Masterchef, which has become a firm favourite for Tilly during her recent spell at home. Rolf does great impressions and so there is not a meal now that goes by without comments by ‘Michel Roux Jr' or 'Greg Wallace'.

Rolf and Candice came back from ballet with Candice looking full of cold. I can’t wait for the holiday for Candice to be able to recharge her batteries. The evening ended with ‘pizza on the couch’ and vague memories of Masterchef whilst I slipped into unconsciousness around 10pm.

Thursday, 22 October 2009


Wednesday morning, after dropping off the girls and Tilly's Teaching Assistant at school I went to the new development called The Meadows, a successful amalgamation of mainstream and special education, on the site of the Leek High School and Springfield Special School. Special Matters, a support group for families with children with special needs, were having a coffee morning in the 'Flat'. It is done out with a kitchen, bathroom and comfortable seating and just perfect for our needs, and can be used in many different ways by the school and community.

I had the great pleasure of meeting a remarkable young Mum who has just recently recieved a serious diagnosis for her daughter and was in the throes of trying to make sense of the new 'parallel universe' that she had found herself in. I instantly recognised the shock, pain, anger, guilt, disbelief, and frustration. Her tears flowed as she tried to explain how difficult family life has been, how confused she is about which school her daughter should attend; how incomprehensible the paperwork is; how she can't understand the progression of her daughter's condition; how she's afraid for what the future may hold; etc, etc It was choking, but so familiar. I don't think I've ever met a parent who did not share these same feelings. I only hope that I was able to offer the comfort advice and reassurance that was needed and was so pleased to see the Special Matters Parent Support Worker and the Parent Partnership Parent Support Worker already 'on the case'. It made me realise the vital role that Special Matters and other such support groups play. This was one cup of coffee that really made a difference.

Home in time for the Lunch 4 2 Club which was roasted winter vegetable soup! It was delicious - total 'spoilation'!

Rolf went out shopping and to collect the girls and I caught up on an unexpected "U" Bend requirement as one of the guests had finished his work and decided to go home a day early. Thought a lot about the Mum I'd met in the morning and revisited some of my early memories. I remember trying to sit Tilly, aged two, in a photo kiosk for her 'disabled parking badge'. The fact that Tilly was entitled to one seized me with grief as I'd only thought of the badge as being for the elderly, and Tilly was so tiny. Tilly was also very 'floppy', and the small circular seat inside the kiosk was very slippery so I had to stretch out my knee for her to sit on, support her body and her head, and stay outside of the curtain so that the photo could be taken. I then realised, from this contorted, twisted pose, muscles beginning to shake with strain, that I had to put the money in the slot! People were starting to stare at my wierd position as I was now trying to dig the coins out of my crumpled trouser pocket, and keep Tilly balanced and calm. Hot tears were welling up, when little four year old Candice came to my rescue! She could post in the coins and duck down when the camera flashed! Not only was Candice there to help me, she was also there to reassure Tilly and make her laugh! Nothing's changed!

Julie from the Pailliative Care Team arrived at 1600 to help get Tilly ready for Brownies. We put ourselves into 'overdrive' and Tilly was ready for tea at 1700 with Candice and her schoolfriend. Mercifully, Rolf did not have an evening meal this evening so he was free to do all the necessary ferrying that meant that Tilly got to Brownies, I got to my Governors' meeting, the girls got to Guides and eventually Rolf got us all home again!

Once the girls were safely tucked up, Rolf served Moules Marineres! "Spolified"!

Thursday morning, Tilly has swimming with the school and is scheduled to be picked up by taxi at 0845. The school has gone out of its way to ensure that Tilly is fully included and I am not needed to be part of the equation. However, the taxi did not arrive and fortunately I was able to whizz Tilly and her teachers up to teh swimming baths on time. Tilly's physiotherapist was there to ensure that Tilly's helpers could safetly transfer Tilly into the pool, and the county coach with a special interest in inclusion also happened to be present. Tilly's smile was dazzling as she criss-crossed the pool, arms and legs moving 'effortlessly' in the water. A joy to see, and I'm so grateful to everyone who worked so hard to make sure that Tilly would be included with her class.

I whizzed home, surprised to see that the postman had been. A letter from the hospital informed us that, due to unforseen circumstances, Tilly's spinal operation next week has been cancelled! I know that I should be disappointed as Tilly does need to have the procedure, and it will come around again, but I feel so elated. I feel that Tilly has been through enough just recently and I really want her to be able to enjoy all that the half-term holiday has to offer.

Lunch 4 2 Club was exquisite - crayfish tail and mango disc stack, piled high, with potato salad and warm bread roll. Should have had a photograph - almost too pretty to eat!

I spent the rest of the day doing "U" bends, with a smile from ear to ear, wondering what adventures we can have now that Tilly has a reprieve!

Wednesday, 21 October 2009

Brownie Points!

Apart from rather an unsettled night Tilly didn't seem to suffer any side-effects from her flu jab. She says she can now look forward to Christmas now that the flu jab is out of the way!

Popped into Caudwell Children Offices on the way to Tilly's hospital appointment and felt the surge of love and care envelop us which lifted our spirits no end. We picked up the Destination Dreams 2008 book that they have created that we would like to use as inspiration for the design of Tilly's book "Tilly Smiles". Tilly and I relived magical moments from our trip to Give Kids the World village, Florida last December, and feel so excited for the families that are getting ready to go this year. It really was a 'trip of a lifetime' that dreams are certainly made of.

We spent the hour and a half in the waiting room finishing "Clean Break", practising spellings and exploring the world in Tilly's atlas. Tilly is like a sponge and draws in so much information.

The consultation resulted in an appointment for an MRI scan. The doctor told Tilly that she may need a cannula to insert some dye into her system. Little did he know that he'd filled her with dread! Tilly's next surgical procedure is looming next week, so she already has enough to be anxious about!

Tilly was happy to be finished in time to join afternoon school and was scooped up by her Teaching Assistant looking like she didn't have a care in the world!

I picked Tilly up again, with swimming kit, and had a wonderful session at Horton Lodge. It was great to be back again with our friends, and to see Tilly swirling and swishing so effortlessly in the pool. Tilly loves to stand up and try walking in the water which is also fabulous to see.

At home it was lovely to see Candice who had been picked up by our helper, Ellen. Candice was radiant and jubilant in her cross-country endeavours. She has progressed so well that she has been invited to run for the school in a county competition. I'm so chuffed for her as she really does give it one hundred per cent.

We had a very special visit from one of the organisers of the forthcoming Brownie Camp. We we so thrilled that the Guilding Association had actually been to the proposed park and inspected all the facilities to ensure that Tilly's visit would be as easy as possible. Brown Owl came too, and we all sat around a super power-point presentation which made us all very excited. Fingers crossed that Tilly will stay well, and well done to the Guiding Association for taking such care!

Meanwhile Rolf served an evening meal to two delightful ladies who were so thrilled with the meal they described it as comlete "spoilation"!

Once the girls were safely tucked up in bed Rolf served up a fabulous nasi goreng, complete with fried egg! I must say that I feel very 'spoiled' to have such a lovely life.

Monday, 19 October 2009

An Inspector Calls

Sunday morning saw us see-sawing on the ramp into Fleur's house for piano lessons. Tilly's left hand took some time to regain it's dexterity following her recent illness, but by the end was back up to strength. We skidded late into Church, just in time for Candice to do her reading, which she did beautifully, in spite of the ancient Greek names included.

We raced to the Lake in time for Rudyard Sailability's annual inspection from the Royal Yachting Association. It felt great to be back at the Lake. Candice took out a new Member and Tilly sailed solo. The Inspector boarded the safety boat and observed Tilly sailing under Gary's expert instruction. They were brilliant. I never cease to be utterly amazed at Tilly's courage and skill in sailing. Tilly really does have an Olympic dream that could come true - and why not?

Sunday evening was glorious - hot baths, roast beef (like a proper family for once) and 'X' Factor.

The traumatic screams heard over Leek this morning at 0815 was Tilly having her flu jab! Our wonderful GP had arranged to do it before school this morning. With Tilly back to school I was back to "U" bends at the B&B which amazingly felt good - back to normal. As 'chambermaid' I can put my mind into 'auto' and clean the bedrooms, listen to the radio and generally mull life over. Mission accomplished, I attended my exclusive Lunch Club 4 2, where we dined on Indian delicacies left over from our Diwali celebration.

Rolf went out to collect the shopping and the girls and I had a go at cleaning our house, which was great, but like most people, I had a hundred other things I'd rather be doing! Rolf created spaghetti meatballs for tea and then had to whizz Candice down to Leek for a tap rehearsal. Had a super surpise visit from Brown Owl who called in to deliver some paperwork, just in case Tilly wasn't ready for Brownies this week. We hope Tilly will be and just need to do a bit of juggling to make sure that Candice and her friend also get to Guides and I can make the Governors meeting at the First School. It usually comes together in the end!

Saturday, 17 October 2009

Happy Diwali

A beautiful bright sunny day in Cheddleton and the luxury of knowing that we didn't have to be anywhere at any particular time. All previous engagements had been cancelled so that Tilly could catch her breath. Rolf took care of the guests and the rooms. Tilly watched the box and Candice and I worked on some homework together, discovering a critical fault in her French understanding that would have caused chaos if it hadn't been checked. Tres Bien!

Surprise visit from Annie - a special friend beyond compare who has been with us right from the start. Annie came bearing a bag filled with her unwanted clothing that sent the girls and me into a state of unparallelled delight. We were all treated to something heavenly out of Annie's bag, and so enjoyed having her company for the afternoon.

Tilly disappeared into the kitchen at 1815 to commence her duty as sous-chef! Donned in white cooking hat and striped pinny, Tilly worked hard with the Master Chef (Daddy) . They were preparing a meal in honour of the Hindu festival Diwali. The house was soon filled with delicious Indian aromas, twinkling candle-light, with the BBC Asian Network providing music, insight and atmosphere. It was good to see Tilly swapping her virtual world of cooking on her Nintendo with the real world of chopping, and stirring with Daddy. Tilly has already planned next Saturday's dish! Brilliant!

The meal was a triumph! A chicken tikka marsala 'like a proper family for once' with the added Brucie bonus of "Strictly". It certainly was a very happy Diwali for the Griffiths' Clan

Friday, 16 October 2009


It was great to be back at the First School for the Governors' meeting last night. I hitched a lift with a special friend (couldn't have gone otherwise) and we were warmly welcomed by the Head, and treated to the most delicious cookies ever! A definite bonus! I seriously consider it a privilege to be part of this amazing little school and will forever be in awe of how they rose to the challenge, against the odds, of including Tilly into their setting. They have been exemplary in their approach and ensured that all of Candice's needs were met and gave Tilly the most fabulous start to her educational journey.

The meeting went on until nearly eight o'clock, so I rolled out of a moving car to allow Ellen to get on home, and me to get Tilly ready for bed. Finger off the 'fast forward' at nine o'clock when Rolf and I sat down to enjoy our house speciality "pizza on the couch!"

I'm going to have to stop reading to Tilly as I keep bursting into tears! Friday morning saw me break down during Jacqueline Wilson's Break-up! (Grumpy Gran had sold her best china to treat them to a holiday in Spain)! I used to read a poem a day to the girls from "Read Me One," and this time of year, coming up to Remembrance Sunday was particularly challenging. I can't ever remember seeing my parent weep when I was a child, so I hope that I'm not doing the girls any harm?

Another uneventful afternoon for Tilly at school, followed by Chess Club. No secretion management needed at all today. I spent the afternoon in the Library, blessed with the company of the most delightful Librarian, and got on with heaps of work for Rudyard Sailability. Whizzed back home. Rolf had a delicious fish meal with 'African potatoes' waiting for us and the ironing done! (Must check for wings - he's obviously one of those earthly Angels)! Ellen arrived and made sure that Candice looked fantastic for her disco whilst Tilly finished her meal. Candice and I sped off to the school disco leaving Daddy and Ellen in charge of settling Tilly into bed.

The school disco was hot and loud, and there was some challenging behaviour that pushed the duty staff to their limits. No doubt their time was given voluntarily which must be applauded and valued. I was well within my comfort zone selling chocolate, crisps and water to the revellers and was amazed at the politeness of the customers and how much the stall made. Amongst this energetic fundraising team, I once again felt privileged that I was able to play an active part of an amazing school that has done so much to ensure the happiness of Candice and the successful inclusion of Tilly. This great feeling is only possible because I have the backup support of Rolf, professional carers, and special friends. There would be no chance of me engaging in any activities outside of regular school hours without this vital support. I consider this to be a great privilege.

Thursday, 15 October 2009

Fast Forward

Pure joy to get Tilly back to school yesterday afternoon. Tilly's slotted back into the classroom just like she'd never been away. I sat in the library with Tilly's cough machine standing by in case it was required. Tilly was shattered after school, and so missed her usual visit to Brownies, but instead had a lovely relaxing evening with her carer, Pauline, reading, eating Daddy's delicious pasta and watching the box. Candice was with her friend for tea and would go straight with her to Guides.

I went charging down to the Junior High for a Governors' meeting, where the buzz was that we all need to be ready for an expected OFSTED inspection. I then bid a hasty retreat and made my way to the Parish Church Council meeting, where we had an exercise to carry out to get inside the minds of the people that might come inside our Church. I then had to dash away to be back to settle Tilly with her overnight ventilation and say goodnight to the girls.

Wonderful Rolf had a meal ready with a glass of wine. We sat down and I took my finger off the 'fast forward' button and enjoyed our meal together. Things seem to be getting back to normal!

Debs came for coffee today. Debbie has a son, aged 10, with spinal muscular atrophy and she is one of the most treasured friends that I have. I can talk to Debbie knowing that she understands exactly what I mean, and experiences the full range of joy to sadness that I feel, although her journey is quite different.

Tilly had another super afternoon at school without the need for any respiratory rescue. She quite frightened me this morning with an unexpected choke on secretions that took some managing. So glad she was at home with all her equipment.

We've got Ellen with us this evening so we'll wash Tilly's hair and get her settled and ready for the evening before I disappear off to another Governors' meeting - this time at the First School. Rolf has gone to collect Candice from hockey and will go straight with her to dancing lessons, so Ellen and Tilly will be left holding the fort.

I am about to press the 'fast forward' button again, and can hear strains of the old Benny Hill theme tune ringing in my ears! It's great to be getting back to normal!

Wednesday, 14 October 2009

Vote of Thanks

Heartfelt thanks to all who kindly took time, effort and care to vote for Tilly in Britain's Kindest Kid competition, but, on this occasion, the prize has gone to another worthy winner. However, the wave of love and support that electronically surged into our lives as a result of this project was just the tonic we needed to sustain us on Tilly's road to recovery. I am deeply moved by how much people deeply care for my little girl.

A vote of thanks to our fabulous GP who reviewed Tilly yesterday afternoon. I felt insecure about the way forward and needed her professiononal advice and reassurance about Tilly's return to school. Tilly gave a vote of thanks that she had a temperature and was not considered fit enough for the flu jab! More anti-biotics were prescribed and a planned 'phased-return' to school. Tilly can't wait to get back and starting doing hockey again! I was just delighted to see Tilly outside again, it seems like ages.

A vote of thanks to Ellen who arrived and helped Tilly with some homework and gave her a lovely long bath and read to her. I got on with some work for the schools' governing bodies - there are some meetings coming up that I hope that I can attend.

We all enjoyed tea 'like a proper family for once' as there was no swimming or sailing, and then a huge vote of thanks to Sue, from the CAST team, who arrived at 10 pm to look after Tilly overnight. It was so fabulous to sleep in a bed and to know that Tilly was in safe and loving hands.

Tilly had a calm and settled night, and looks set for a visit back to school today. It is clear that we certainly have a lot to be thankful for.

Monday, 12 October 2009

The Prime Minister's New Clothes

Tilly continues to regain her sparkle. Great excitement as Tilly gets ready for Katie, who is coming to film Tilly for Central News. Tilly chose to wear the new "Primarni" outfit that she had chosen especially to visit Gordon Brown, but had been too ill to make the trip. It was great to see Tilly so interested again in her appearance. She looked lovely and spoke so beautifully to Katie. I was so impressed with the skilled, multi-tasking of Katie who, single-handed, managed the filming, sound, production and interviews. Katie exuded such enthusiasm and genuine interest in Tilly's story she quite lit up the room.

The sun streamed in through the windows as Rolf, Tilly and I spent the day ironing, doing homework and working on the laptop, in that particular order! I can't believe how much time I have had to devote to my 'laptop life 'with Tilly being so unwell. I've had a great day communicating electronically with folk I haven't managed to talk to for ages, which has been a bonus. I still haven't mastered the mysteries of 'Facebook' or 'Twitter', but I can remember wondering what 'e-mail' was all about, so I guess I will catch up one day.

Tilly had a sling assessment later this afternoon which proved how very difficult it is to provide a sling that will transfer one person from one place to another using an overhead ceiling track. Tilly's spinal surgery, head-control, vertigo, comfort, etc all have to be taken into account. We spent a lot of time with Tilly's Occupational Therapist and the Sling specialist and didn't manage to quite crack it, although we have a plan! The Sling specialist will go away and create a one-off, Tilly-sized, sling which should do the trick.

No clubs after school today, so Candice was home early. It was lovely to see her - but I fear she is looking a little wan and tired. Just praying she is not coming down with anything.

Daddy worked tirelessly in the kitchen on a 'labour-intensive' shepherds' pie - one meat/one veggie. Hard to describe how scrumptious they were! Tilly had her arm support on and ate it all by herself, which was great.

We saw the Chanel 5 News' coverage on the television about the trip to No. 10 that did not include Tilly, and we distinctly heard Mr Brown say that Tilly would be made most welcome when she was better. Tilly is thrilled and is already planning her trip to 'Primarni' to buy another set of 'Prime Minister's new clothes'. It's all part of the adventure!

Sunday, 11 October 2009

Tilly Smiles

Saturday morning started with a 'long shot' email to our wonderful GP because Tilly was due to have her flu jab. Should she or shouldn't she? Would it be harmful in her current state, or essential? Amazingly, seconds after pressing "send" our GP was on the phone advising that Tilly should remain at home to recover fully before having her shot. How about that for service! Our GP has played a key part in caring for Tilly, even before the official diagnosis. Dr Oxtoby was the first professional to really take me seriously, back in those dark days, when I was beginning to suspect a serious problem. From that moment to this, she and her colleagues, have been committed to providing us with key expert care and understanding. They even take part in Rudyard Sailability's annual Dragon Boat Race! I think they're amazing.

The postman brought the draft of a book that we are compiling called "Tilly Smiles". The Jennifer Trust for Spinal Muscular Atrophy have secured some funding to get it published, so we are all very excited at the prospect of seeing this project finished. It is hoped that the simple verses and photographs in the book will inspire other families to follow their 'stolen' dreams. It is very difficult at the point of diagnosis to imagine that your child will have a happy, fun-filled childhood. It is hard to imagine that you will ever smile again - but let's hope that he book will show that joy happiness can be in abundance, even when living with acute disability.

A planned trip in a hot air balloon was cancelled due to strong winds, so Saturday afternoon was quiet and calm with Tilly delighting us by spending most of the time eating! She really has some catching up to do! It was lovely, too, to see Candice having time to relax and recharge her batteries after a very hectic week at school. Rolf and Candice have had their flu jabs and show no after effects. Can't say I'm looking forward to taking Tilly along for hers, but at least they haven't got to find a vein.

A very special neighbour popped across with a beautiful pink, beaded angel to cheer Tilly, and Tilly has vowed it will be the first decoration on our Christmas Tree. Can I have mentioned the "C" word already? It's not really allowed in the Griffiths household until after Bonfire Night!

Tilly had a lovely long hot bath which was magic. She glided effortlessly along in her sling on the ceiling track hoist without a murmur. So different from when she was poorly, as the slightest movement led to traumatic distress. I read Michael Morpurgo's "Born to Run" to Tilly as she luxuriated in the bath and we both found ourselves struggling to hold back the tears as the story unfolded. He really is the most amazing writer. I'm still recovering from "The Butterfly Lion" and we are just wondering if we are strong enough to see the stage version of "The War Horse"!

Tilly did some walking movements in the air as she left the bath and said "Look at me walking," and then the knee-buckling words "I wish I could walk, Mummy" I wrapped my arm around her dripping body, nestled in the wet sling and said that I wished that she could too. With such a bright little girl, these feelings are to be expected, and I'm glad Tilly feels that she can share them with me. I always give an honest response to whatever she has asked. I feel inadequate in my reply. Mummy's are supposed to make it all better.

We were blessed to be able to enjoy the much missed, and dearly-yearned for "tea like a proper family for once" and viewing of 'Strictly' and a bit of 'X Factor'. The simple joys that mean so much to us.

I caught a brief glimpse of Robbie Williams on X Factor looking on fine and sparkling form. We were lucky enough to meet Robbie a few years ago at Treetops, an unbelievable experience that I shall never forget. Many might know that as Patron, Robbie has played an enormous part in the evolution of The Donna Louise Children's Hospice, but not many might know how instinctively sensitive and intuitive he is with families with children with special needs. During his surprise visit I had the privilege of witnessing how he gently stroked the little face of a poorly baby; offered comforting words to the baby's mother; shared blokes' jokes with the older lads; gave Candice a singing lesson; played footie with the lads and dads; chased Tilly around the garden (pretending not to catch her); carefully picked up the arm of a young man with with muscular dystrophy, put his hand in his to shake, and then deftly replaced the boy's arm back to his wheelchair control. The list is endless as Robbie ensured that he spent time with each and every person in the room, relating to them in a genuine, personal and considered manner that left me in awe. I had the opportunity to tell his mother of his remarkable visit and she said simply, "That's my Robert!" I feel uniquely privileged to have had a glimpse into the heart of this special man, a side of him that is not often recorded in the Press.

Sunday has been quiet. Rolf took care of the B&B, took Candice to piano and Tilly has been busy eating, playing on her computer and working on her secretion clearance. I had hoped that she would be well enough for school tomorrow, but unfortunately she is still heavily dependent on all her machines.

I have been contacting family and friends to vote for Tilly in Channel 5's Britain's Kindest Kid. We have until Tuesday at 1230, and the number for Tilly is 0844 8554541. Calls only cost 5p a time and the caller can make up to ten calls. Fingers crossed! We'll find out on Tuesday night, with the winner being filmed on Wednesday.

The good spin-off from such a Competition is that we have had calls from folk that we hadn't heard from in a while, such as the charismatic builder who created Tilly's ground floor extension, a treasured friend from Barcelona, and a friend with whom I was held hostage with in Kuwait many moons ago! I also spoke with Linda, Tilly's Home-Start Volunteer, who came into our lives at the very beginning of Tilly's diagnosis and had the most profound and lasting effect that shaped the very nature of our journey so far. I've had big chats on the phone with two of my sisters and am standing by to catch up with my big brother Paul. It really is 'good to talk', now that we are out of the grip of the 'unbearable longness of waiting' for Tilly to recover. Time seemed to stand still, and the thought of cheery conversations were distant.

Today, Tilly is sporting a bright pink headband, pink and black High School Musical Pyjamas, bright pink earrings, and black shiny shoes. She viewed her reflection in the mirror and smiled. Tilly is back.

Friday, 9 October 2009

Wheelie Good News

I fell asleep last night on the couch in the lounge, where I have been sleeping for the last week or so, under St Edward's First School's Disability Equality Scheme. Unfortunately, I hadn't turned that many pages, but will have another go tonight so that it is ready for the next Full Governors' Meeting. I am surprised at how much satisfaction I have achieved by being a Parent Governor, and how much I have learned.

Tilly had another very settled night. I am starting to feel vaguely human. Candice trooped off to school once we had located a school top, and supported her with her homework that could not be done the night before because she was at hockey and then ballet and tap.

The current guests are lovely. Room 1 are delighted with their room, their breakfast, the pub, and Rolf's suit that they need to borrow because the gentleman has left his in Wales! All part of the service!

Tilly spent the whole day in her wheelchair! This is music to my ears! Back up 'on her wheels again! ' Once back in her seat Tilly remarks at how wonderful it is to be able to move her own legs for herself. The day is spent with Tilly being "Tilly" punctuated with various rounds of secretion management. I cannot help but marvel at the amazing skill of this little girl in removing all the secretions from her chest - I don't think she'd manage without it.

The day was marked with culinary milestones for Tilly who has not really eaten since last Wednesday. Daddy's 'full Monty' for breakfast. A ham sandwich for lunch and then, joy of joys, "tea, like a proper family for once"! It is amazing how big a part the enjoyment and appreciation of food plays in the running of our little family. It is a real benchmark of how things are.

Tilly missed her first Year 5 disco at the Junior High School tonight which was a shame, but I guess that being able to attend all the acitivities is another indicator of how well Tilly is doing.

There was a surge of media activity this afternoon with Channel 5 News announcing that the phone lines are open for voting for Tilly as Britain's Kindest Kid, and Central News arranging to film Tilly on Monday morning at school. All very exciting! The local Press have also been very supportive of Tilly's latest adventure, just as they have been in the past.

All in all, a 'wheelie' good day. Just as well, it's the flu jab tomorrow!

Thursday, 8 October 2009

Pizza on the Couch

Tilly did a respiratory 'workout' at one o'clock in the morning and then we sat there like 'Talking Heads' discussing life and the universe and everything until we were sure that Tilly's anti-biotic had settled.

Snuggled Tilly into bed at 0130 and she slept like a dream until 0800 this morning. The best night sleep in days. I did one of my 'Hollywood Screams' during the night, which is I guess is like a night terror, when I wake up in a state of abject fear, my heart trying to escape and me just not quite knowing what it is I have done wrong, but believing that whatever it is it must be serious and life-threatening, and definitely all my fault. There is enormous relief when my conscious mind reassures me that it is just one of those horrible night-time experiences that happen every now and then.

On Thursday Tilly participated fully in all her secretion management programmes, as and when required, and then spent time listening to books, and then watching the box with Daddy. I am only just daring to hope that she might have turned a corner.

Ellen arrived at 4pm and Tilly had a bath and washed her hair. Candice arrived home after hockey and after ballet and tap and announced that Tilly looked a lot better.

Girls all settled by 2115. Rolf and I had "pizza on the couch." As Rolf and I always have this meal after all the busy events of Thursday evening, this meal could be a sign things are improving. The unbeareable longness of waiting for Tilly to get better might just be over - time will tell.

Wednesday, 7 October 2009

The Chequered Flag?

When Tilly's Support Worker, Ellen, arrived at 4pm yesterday afternoon Tilly was not looking good. The vertigo was still whirling and the chest infection had begun to take hold. Tilly's oxygen levels were starting to drop and we needed to get going on a full range of intensive 'secretion management'. We worked through the nebuliser, 'shaker-maker' (chest physio-machine), cough assist and suction unit. Tilly is quite brilliant to cooperate with these procedures, especially when feeling so vile, as she has to insert a tube into the back of her throat and literally hoover out the secretions that would have settled on her chest. There are many adults who could not contemplate this action, let along a young child, but it really has been the key to the successful outcome of so many serious infections in the past. We settled Tilly into bed early, where to our enormous relief, her oxygen readings had improved.

In the meantime, Candice had been picked up by Daddy from a Cross Country Meeting and was soaked to the skin, but wreathed in smiles. Candice hadn't won, but hadn't lost, but had loved being part of the muddy experience. Ellen sat with Tilly whilst we had 'tea for three'. Candice tried to explain "A Midsummer Night's Dream" to us whilst we enjoyed Daddy's pasta. During our flying days, Rolf once snoozed through an entire performance of this play in the Botanical Gardens, Sydney, whilst the possums ate the picnic he had lovingly prepared for us! He confessed that Shakespeare isn't really his thing, but he couldn't wait to see his beautiful daughter on stage. I just prayed that I would be able to too!

As part of Channel 5 News' "Britain's Kindest Kid", Tilly and I were supposed to be off to No. 10 Downing Street to meet the Prime Minister on Wednesday morning - leaving in a car at 0600, and returning to The Victoria Hall in time for Candice's performance. The trip to Downing Street had been cancelled due to Tilly's ill health, and now I was afraid that I would miss Candice's big moment. We'd left a message with the Children's Airways Support Team with a cry for help and Vicky was going to get back to us.

At 9pm Tilly looped the last loop on her vertigo roller-coaster and began to engage in conversation. She asked if her bed had some wood on it, and when I said yes, she replied, "Touch it then, because I'm going to say I think I feel better!"

At midnight we repeated the same respiratory routine as earlier with Tilly expertly shifting a lot of 'rubbish' off her chest that would certainly have given great problems if they'd been left to pool overnight.

It was great to get through another night shift without a crisis. Candice was on sparkling form this morning, all excited about her production. I just wished I could have reminded her to take the beautifully packed PE Kit that was perfectly parked by the front door! Candice is still young and still needs her own support to manage her busy life.

At 8 am Tilly goes through all her respiratory routine and even manages to eat a little of the old favourite 'dippy-egg'. Treetops Tracy rang and was thrilled to hear that Tilly was showing signs of progress. Tracy is hoping to see Tilly next when she is really up to playing, and reassured me that I need only ring if I felt we needed another visit sooner. They are amazing and so very encouraging.

Tilly was wondering if she would have any visitors today, so I scooped up Vienna, one of our two wildish pussies that live outside, and smuggled her in for a quick visit! I don't know who was more surprised Tilly or Vienna - but it was lovely to see Tilly smile.

Tilly spent most the day awake, the first time since last Wednesday, chatting and planning all that she will do when she is really better. Tilly and Daddy spent a couple of hours watching TV together in the afternoon. This was lovely for them, but I could also catch up on myself. Rolf and I both working at home with the B&B does certainly have advantages when dealing with our situation. I can't imagine for one minute how we'd cope if one of us worked nine to five, but there are so many other families that have to, and manage it brilliantly.

Later, when Rolf had popped out and things were about to go pear-shaped with Tilly needing help, the phone ringing and guests arriving - a wonderful lady from the Children's Palliative Care Team arrived, just like Mary Poppins, out of the blue. Naturally, it had all been arranged, but once again, within the hectic whirl, I had forgotten to remember (just like Candice' PE Kit)! Julie was great, and will now be visiting Tilly every other Wednesday for two hours after school which will be brilliant for getting ready for Brownies.

Wonderful news from the CAST Team - Sue has been able to rearrange her hours so that Rolf and I can both go and see Candice on stage. Fantastic! We left Tilly in Sue's expert care and then drove off in to the most beautiful sunset (literally) on our way to Hanley. It was breath-taking and equal to many an African sunset I'm sure, and certainly set us up for a fabulous evening.

The Shakespearean Festival was a success. An inspiring project to get young people gripped by Shakespeare's plays, and even relate them to their own lives. A terrific experience for all involved, and such a privilege to perform on a 'real' stage. Everyone excelled and, of course, Candice was our shining star! I am so glad that I was there to see her sparkle!

Tilly and Sue had spent a calm and relaxing evening together with lots of secretion management required. There are so few people that can look after Tilly in this way - we are so very lucky to have such fantastic people who can really improve the lives of all our family.

Tilly remarked that she thought she could see the "chequered flag to Well-Town". Well I consider that to be a fair swap for Downing Street! And I'm sure Mr Brown would agree.

Tuesday, 6 October 2009

A Cruel Twist of Vertigo

A better night for Tilly, although there is a hint of a chesty cough developing so will crack open the anti-biotics. Tuesday morning had an optimistic feel to it and Tilly was looking forward to the day. We heard the piece on BBC Radio Stoke announcing the start of the year's project and were thrilled to hear Tilly's voice sounding so well and confident. Rolf took care of the guests and Nick arrived to check out the electrics following the recent power failure. We're just not in the position to risk another break in supply. Candice tripped off to school, all excited about the dress rehearsal and cross country. I am so pleased she has such full and happy schedule.

Then the mood of the day changed. As if to add insult to injury, Tilly was delivered a punishing vertigo attack. Unless you've actually experienced one, or been close to a victim, it is hard to describe how perfectly putrid they are. Completely debilitating and rendering Tilly once again, pale, silent and motionless apart from the occasional panic-stricken squeal as she feels like she is being turned upside down on a runaway roller coaster.

Mercifully, Treetops Tracy and Gill arrived armed with 'talking books', comfort, love, advice and support. They both think, that in spite of the obvious vertigo symptoms, Tilly looks a lots better. Their words bring a soothing calm and strength and the reassurance that we are still moving in the right direction - albeit very slowly. It's very easy to let your mind carry you away to scary places when there seems little improvement. I think this is so for all parents - fearing the worst, terrified you might have missed something.

As Tilly settled, Rolf, Tracy and Gill encouraged me to keep an appointment to give a "Talk" to the Inner Wheel - Rotary's sister organisation made up of members' wives and supporters. This year's President is the wife of one of Rudyard Sailability's supreme supporters - Mike Dawson. Dennis, Chair, Rudyard Sailability, had offered to cover this presentation for me, but with Treetop's support and Rolf's blessing realised that I could share it with him. The Rotary and Mike Dawson are very important to us, supporting so many of the organisations that we need. I was pleased to go along and Tilly was happy to let Mummy go and to stay with Daddy, Tracy and Gill.

It really did feel good to smarten up and leave the house to join the 'outside world'. The Ladies at The Inner Wheel meeting were friendly and welcoming. I explained the situation and that I would 'talk and fly' to get back to Tilly. They all understood and I could feel their care and concern. I really enjoy sharing my experiences of our world of special needs with people who are obviously so interested and so committed to making a difference. Following my "Talk", I sensed a wave of energy rise up out of the group which carried me all the way home to Tilly. Tilly had remained stable with Tracy and Gill, and I am so grateful to them as I certainly could not have managed my little "sortie" without them.

A long and quiet afternoon just waiting for the vertigo to release its grip upon Tilly.

Monday, 5 October 2009

Parker Power

Although I'm not overly superstitious there seems to be a theme around 'luck' emerging. The most amazing phone call from Snowie Owl on Sunday evening made me feel very lucky indeed. In fact, I now understand how Scrooge felt when he realised that he hadn't missed Christmas Day after all, because Snowie Owl rang to tell me that Brownie Camp isn't actually until late November, and Tilly hadn't missed it at all! I am actually quite notorious for getting my dates mixed up, and what with all the stresses of recent weeks, I spotted the original date for the Camp in the diary and completely forget that another later date had subsequently been fixed! I then began to convulse with laughter at the thought of Tilly and me, all packed up and ready to go, complete with parrot on shoulder, bandana and eye patch in readiness for the Camp's Pirates theme, waiting at Leek Bus Station and wondering what had become of our "Shipmates"! Oooooh! Ahhhh! Jim Lad! I don't think Rolf will ever let me forget this one!

This news did much to raise the spirits of the Griffiths's household and Tilly did manage to watch a bit of "X" Factor though half-closed eyes. Luck? I smiled to myself at the end of the day as Mary, from Church, had told me that she would pray that Tilly would not miss Brownie Camp. Mary's prayers were answered with us marvelling at the Lord working in mysterious ways.

The night was rather unsettled again and Tilly's Monday morning was rather troubling as her heart rate was raised. However, there was a glimmer of "Tilly" around lunchtime, but generally she remains lifeless.

Another blessed and welcome visit from Treetops Tracy did much to brighten the afternoon, especially as Gill, The Community Family Support Worker from The Donna Louise Trust, came too. They are both so precious and can work such magic. Between us we gave Tilly a soothing hot bath, and foot massage. I don't suppose many people realise that the Hospice has this outreach work when there are problems in the home. Real lifesavers providing comfort, advice and practical help. They are set to return tomorrow morning, and hope that Tilly will be up to
a manicure and pedicure.

Candice and Daddy returned home with news that Lady Luck smiled on Candice, and she has been selected from the draw to go on the school's French Trip next May. "Bonne chance" for Candice, but sadness for those children not chosen.

We saw Chanel 5 News' item on Tilly for Britain's Kindest Kid. It was a lovely piece and so wonderful to see Tilly looking like "Tilly". I am longing to have her back again.

An unexpected ring at the door heralded the arrival of the most magnificent boquet of flowers and the most delicious looking box of chocolates. Nothing could have prepared Rolf and I for the discovery of the sender - who on earth would do this for us? It transpired that they were from our very special friends, Ian, Mary, Holly and Emilly Parker. Ian is a member of the Mouth and Foot Federation of Artists, and we are privileged to display one of his magnificent works in our diing room. We count Ian and his wonderful family as our dearest friends. The note says that they are thinking of us and keeping us in their prayers. Within moments, Tilly woke up and admired the bautiful flowers and wondered what was for tea - a real turning point. Tilly rallied for the first time in five days, held a conversation, and actually ate something Who needs luck when we have the power of prayer on our side? The Parker family have held us and nutured us with their prayers and carried us forward We are privileged and blessed to have such wonderful friends to look after us when we are too busy being afraid.

Sunday, 4 October 2009

See How Lucky We Are!

Good News from the Church. Our Harvest Basket has been resurrected and an 'Angel' from the Flower Arranging Team came round with the most glorious 'get well soon' basket of flowers for Tilly, complete with amazing butterfly. Each glorious little petal is a pure 'pick-me-up', which did much to carry me through these last few days.

Tilly had a horrible Thursday night, sickness prevailed, but she amazed me by starting to drink lots of water which was a great relief. It doesn't take long for a child to become dehydrated and need hospital intervention. We are very lucky, as Tilly has become older we are now able to explain why such things are important which helps so much in her care.

The very busy Thursday night shift took its toll on all of us and we were fit for nothing when Becky from BBC Radio Stoke arrived at 0800 for an insight into Tilly's typical morning routine. Little sparks of Tilly occasionally emerged, but it was clear that this was not a typical morning and that Tilly was not well enough to go to Brownie Camp. Passing the message on to Snowie Owl, I found my face collapsing with emotion - it somehow makes it worse when you have to say 'out loud' that your daughter is feeling wretched and how sorry you are after all the care taken to ensure that Tilly was included in the first place. It would be enough to put them off another time - but I know they are all made of stronger stuff!

Friday lunchtime, Rolf and I lifted Tilly carefully into her armchair and there she stayed, motionless and quiet. It was a great relief to see the distress leave her, but worrying to see Tilly so inert and lifeless. I keep reminding us that this will pass in time and I hold on to the images of Tilly 'full-on' and filling every minute with a thousand words. Rolf is tense and busy rescheduling the week-end's catering, seeing to the guests, arranging Tilly's power chair respray and collecting Candice from Chess.

A welcome miracle! "Treetops Tracy", Tilly's community nurse from The Donna Louise Trust arrived for the afternoon. Tracy has stepped in and given us 'a breathing space' on many occasions when we feel like we are not really winning the battle. This was no exception. Tracy's experience, skill and personal relationship with us means that we have every confidence to leave Tilly in her expert care. I bounded up the stairs with renewed energy for a "wash and brush up" and and emerged refreshed, recharged and ready for action. Tracy helped me carefully bathe Tilly and got her settled back to bed. We are so lucky, we couldn't have managed without Tracy, and her love and support was needed to get us through another 'night shift'. It always seems much worse overnight, so much scarier - probably because so many of Tilly's emergency admissions seem to have happened in the wee hours.

We were lucky enough to get away with another night at home with Tilly's Friday night being fairly settled, with her respiratory monitors giving me no cause for alarm. This does not stave off the doubts that we might have 'missed something' that it might be something nasty that should be seen by a doctor. Still waiting for the moment that Tilly wakes up as "Tilly" again. So far, we just get a few words, a few sips of water, then she slips back to wherever this horrible episode has taken her.

Saturday, the wind brought a bit of added chaos with the downing of a Beech bough onto the A520 and the break in our electricity supply! We have limited battery back-up for Tilly's many machines, but the implications of a long-term lack of power could be serious. The stress levels begin to gently ascend. Tilly remains life-less with the occasional request for a drink, and the highlight of this day - a bite of toasted solider and dippy egg! A definite improvement!

Great relief! The power was restored at teatime. We wheeled Tilly on her armchair into the lounge to join us for "Strictly" in the hope that it will somehow revive her. A small flicker as we describe the costumes to a sleeping beauty. Rolf and Candice have created a super meal for three - how I long to have tea "like a proper family for once!" That will be the sign that this agonising wait is over. Just got to keep believing.

As if to keep us on our toes, we are treated to one more little challenge! Just as we are going to bed, the power fails again - the earlier power failure has caused a surge and tripped the fuse and we are plunged into darkness. Rolf works feverishly to identify the fault, and by some miracle manages to restore power to Tilly's room. He is wonderful - I was just about at that "Beam me up, Scotty" point at the thought of a night with only battery back-up. I will definitely keep him on!

Tilly's Saturday night was another long one disrupted by sickness and tummy gripes. Rolf's was filled with nightmares and mine was filled with anxieties that Tilly might need expert help from the hospital. I rang the North Staffs Paediatric Intensive Care Unit for their advice and was so relived to have a supportive conversation with the senior consultant, familiar with Tilly's care. I was reassured that things were progressing as they should and felt a great sense of calm descend over me. This phone call was so special as it gave us the confidence we need to continue to cope at home, as well as the comfort of knowing that they are there for us and are 'in the loop'.

Amazingly, Rolf managed to serve breakfast with the use of extension cables from Tilly's room to the kitchen and Candice made it to piano lesson. Just like the swan, looking strong, beautiful and confident on the surface, but working like stink beneath. Rolf's show must go on.

Accepting that the electrics was one fault he could not manage, Rolf called upon the services of a faithful fellow "Daddy" , Ian, who has stepped in and helped us in the past. Within the hour this magician of an electrician had conjured up an expert to get us sorted, then he too, arrived to make sure that we were OK. The value of this support is immeasurable.

Tilly continues to sleep, but does look a little better each time she wakes. We are planning to give her a hot bath later, with the promise of Daddy's Sunday roast and The X Factor. The thought of being able to enjoy such simple family pleasures would make my heart sing, and makes me realise how much we can take for granted - like electricity for example! See how lucky we are to have Magic Ian to sort if out for us!

Saturday, 3 October 2009

Back Soon

Tilly struggling with the side effects of her medication.
Very sleepy and improving very slowly.

Thursday, 1 October 2009

Smile for the Camera

Miraculously, yesterday at 1030, Tilly woke up and felt reasonable. The sleep seemed to have done her good and she was keen to get up and be ready for the arrival of Channel 5 News camera crew. The trio, made of Producer/Presenter, Cameraman and Logistics Co-ordinator had come to film Tilly as part of the Britain's Kindest Kid Award. They a friendly crew who worked professionally and efficiently capturing film, recording interviews and gathering up lots of photos of Tilly's many and varied activities. Once again, Tilly immersed herself independently into the action and seemed to enjoy the visit.

My lovely Mum always says, "It's an ill wind...." I've never really known the rest of the quote, but understand that it means that sometimes out of the bad comes good - and so it was with Tilly yesterday operating her electronic arm-support button with her foot, as she could not use her hand because of the cannula. It was Daddy's bright idea and it now means that Tilly can use both arm-supports easily at the same time (usually one hand operates the movement switch). It may well open up many new avenues including the piano. The equipment is used mainly so that Tilly is able to feed herself - a very important step forward as she did not want to be fed at The Junior High! This amazing bit of equipment is designed by NeaterEater Solutions, a Company based in Buxton.

Tilly and I hurried off to the hospital, keen to get the last infusion of pamidronate over and done with, with the expectation of meeting up with the Channel 5 News Team for a last piece of filming. Unfortunately, the Ward Manager was unable to allow the crew in to film as Tilly's ward was very busy and there were no other quiet, suitable locations available. It was such a shame as it would have been a golden opportunity to tell the Channel 5 viewers what a great job they have done with Tilly. Tilly's vein held out and she completed the final dose of the bone-strengthening drug by 2100. We bade fond farewells, thanked all for their wonderful care and skipped out into the darkness, complete with Tilly's monitor that had been serviced over the last few days. Another great job done.

At home, at 2200, we were delighted with arrival of Sue from the CAST Team, who look after ventilated children in the community. It was a terrific moment, because although I knew she was coming, I had forgotten all about this special treat with all the drama of the day. I could have kissed her! To have Sue watch Tilly overnight whilst I slept was a gift beyond compare. Little did I know how critical her support would be.

Rolf seemed rather low. Neither of us had eaten and now it was too late to even think about it. It must be very stressful for Rolf at home when Tilly is in hospital. Candice had been dropped off by the school bus after her netball match, had tea, got ready for Guides, but didn't go as her lift didn't arrive. No doubt a crossed wire, but it seemed to have made Rolf very sad.

This morning's news was not good. Sue had had an exceptionally busy night with Tilly who had been most unwell with sickness, although her respiratory system appeared normal as all her readings were good. My heart sank. What next? Is Tilly suffering the side-effects of the infusion or is this the start of something nasty? A constant state of apprehension re-seizes my being. Tilly's settled 'sleeping' breathing fills the room and once again we wait to see which way this journey will take us.

I wake beautiful Candice and we have a huge hug on the side of her bed. She doesn't remember me going in to her last night for prayers, but knows now that I did. I hear all the news of the day before and the plans in store for the day. We agree that it was probably for the best to have missed Guides and have an early night as her life has been very busy too. Candice loved the workshop at The Victoria Hall and was doubly thrilled that it took place actually on the stage! I can't wait to see her production next week. After breakfast, I saw Candice off on the bus and we checked that she had all that she needed. We ran back up the path for her hockey stick laughing at what similar 'scatter-brains' we are, and then she returned a few minutes later, breathless from running as she had left her homework on the table! Candice reminds me so much of me! Just too many plates spinning at once!

Tilly woke at 0830 needing a hug! I got on a chair and clambered onto Tilly's bed beside her and held her little hand whilst she drifted and dozed a bit. It's very hard to 'snuggle in bed' with a little one who is flat on her back with a ventilator mask on, but that doesn't mean that Tilly doesn't need that contact every now and then. Most children find great comfort under the duvet with their parents, and Tilly is no exception.

I lifted Tilly out of her bed and onto her powered wheelchair at 0930. She didn't seem too bad and said that she felt very hungry. We even saw a little smile when the DVD that Daddy had ordered for her arrived in the post. We planned to have breakfast and watch the movie. It is now nearly 1500 and Tilly has barely moved. She had a couple of big drinks, refused her food, asked for her ventilator back on and the curtains closed. Apart from a few mumbles, Tilly has slept solidly all day. All the readings on her machines still look great - so once again - I am still hoping and praying that sleep will be the key and she will wake up feeling like "Tilly" again. The thought of taking her to Pontins on the Brownie Holiday seems very remote at the moment, but we will have to wait and see how she is when she awakes again.

I spent a bit of the morning putting together a floral offering for the Church's Harvest celebration. The girls and I have been offered the "Children's" window to decorate at various times of the year and it is something that we enjoy, but are woefully inexperienced at. We decided that we'd do a harvest basket and Rolf had already bought some fine gourds to decorate it. The Church reassured me that as Tilly was unwell that they would look after the window, but I decided it might be good therapy to get in the garden and create something lovely! My basket was filled with berried greenery, ivies, cut flowers, blackberries, fruit, home-made jam, etc. On my journey down to deliver this offering the whole blessed lot turned upside down. Upon arrival the jam rolled out and smashed on the road and as I stepped back I squashed the squash. I was about to throw the whole lot into the Council bin when I saw the funny side of it - I'm obviously trying too hard and not cut out for this flower-arranging lark and the Lord is gently trying to tell me! Undeterred, I gathered up the battered collection and delivered it to the back pew and the expert care of the real flower arrangers. They were so pleased to see me, and so lovingly concerned about Tilly that I realised that it was all worthwhile - just the boost I needed.

Tilly came to at about 1530 feeling ghastly and very sick. We've done our best to settle her again and now another angel has arrived to support us. Ellen has arrived and is reading Tilly Hannah Montana The Movie again. Tilly has just told Ellen off for not using enough expression - could this be a little sign that she is getting better.

Better keep smiling and believing!