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.


Anonymous said...

Hi I saw Tilly and the family on Jeremy Kyle today with my children aged 7 & 5 could not belive all she has been through and still a huge smile on her face. Could not belive what she wants to achieve in life and I wish her all the luck in the world. Would also like to say that I think her sister is a star she obviously thinks the world of her sister and she should be very proud of her self. We are just going to buy the book Tilly's Smile cant wait to read it. All the best to you as a family x

Shari Goldman said...

Well, what can I say?! You are truly inspirational. You have so much going for you and your determination and courage means you will have every success in your life. There needs to be more people like you, in the world. I, for one, wish I was more like you. Wow. x

Anonymous said...

Totally inspirational everything can be achieved with determination and faith well done xx

Anonymous said...

Hi Tilly - would love to be able to enclose a picture of my granddaughter who happens to be called Tilly Smiles. We are going to buy the book and show our Tilly as she gets older (she is only 2) how brave and couragious Tilly Smiles in the book is. Love to you all Lots of Love Tilly Smiles Nanny xxxxxxxxxxxxxxx

Tilly's House said...

Many thanks for the lovely comments which are such an encourgement. I am enchanted to hear that we have a little girl called Tilly Smiles! I bet she is just glorious.

Tilly's book is held up at the Printers just now, but we are hopeful to have a run ready for April.

Love and hugs to you all Jxxxxx