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!