I could definitely definitely get used to this! Each day for the last three or four days has been totally normal and therefore completely extraordinary. Waking up and going to bed night after night all under the same roof has been fabulous and something I swear never to take for granted again but I am sure I will. Each precious healing day takes us a little bit further away from the 24/7 awfulness of Rose's year and actually we marvel a little bit more each day about how awful it really was. The stuff that she and we were dealing with every day seems even more appalling from the safety of home than it did at the time and Rose is definitely slowly processing her experiences with us in a way she didn't while she was going through them. She has talked more about her time in hospital, the surgery, the threat to her leg than she has done all year and I'm hoping this is all A Good Thing and helping her get it all out.
God knows we are not properly qualified in any way to help Rose come to terms with her new life and we tiptoe carefully through the daily minefields that crop up - all as raw and sensitive as each other. From the shop assistant who asks what Rose 'has done to herself' or innocently mistakes her for a boy, to Rose sorting carefully through her cupboards and putting her ballet uniform and leotard to one side there is pain everywhere that has to be smoothed over for her. Lots of reassurances, no promises. And for one another all is still exposed nerve endings and super sensitivity - our love for her and protectiveness knows no boundaries any more and the need to fight her every battle is overwhelming. They used to say to us in hospital that post-chemo parents suffer terrible separation anxiety from their children - can't quite imagine being separated from her yet but it's definitely out there. I don't think she's going to want me going to school with her when she's ten but certainly for the next few weeks I am going to be the uninvited guest at the back of the classroom, the moving bush in the car park...
Every day still fighting the urge to start each sentence with 'If only she was walking...' - but this really is now the hardest part. Perhaps it always has been - we have brought a disabled child home and are still adjusting to our shrunken horizons. Everyday trips and treats have become logistical nightmares and we generally don't seem to realise our limitations until too late. Life is pretty much just about parking these days! Of course the jubilant moment of weight bearing last week hasn't been repeated yet (think she gave herself quite a scare and has no intention of rushing anything!) but we live in hope and are limping from physio to physio in the hope of a breakthrough... Had a long chat with Tracy her physio at Stanmore this morning who is convinced that more admissions up there is not the way forward at the moment for Rose. We have tried all standing over her telling her to put her weight down and it's not happening - definitely time for new tactics. Tracy is convinced that school and home are the way forward for now and I am more than happy to give that a go. Anything that means all being at home works for me.
But apart from physio she has done some more 'normal' stuff which is all fab - on Friday we took her to the UCH Christmas party. A great opportunity to see her peers from pre-surgery chemo and how they are all getting on (better than her, that's for sure!) and it was a bit of closure for Rose on her UCH days. We had under-estimated for us all what a shock it would be to move but months in Rose is finally happy and settled with her new surroundings and it was safe to take her back to UCH without worrying she would be unsettled all over again. She definitely wasn't but she was really pleased to see her old friends and more importantly Father Christmas. Apart from getting her crutch caught in a paper hat and falling on the way out it was a success! And on Saturday we had been given charity tickets from the Marsden to see Peter Pan - the kids loved it and between worrying about parking and access to the toilets Simon and I enjoyed it too. The children watched the pantomime, we watched the children - living in the moment our new way of life.
So we're adjusting - and hoping hoping hoping nothing stops us being home for Christmas. There is more Marsden at the end of this week to see her oncologist and to have some more baseline post-chemo tests but we will be really unlucky now not to be here next week. With Rose's history of infections we are going from day to day and we have had a couple of scares even this week - she still has a stomach feeding tube in and this became red and inflamed and sore at the beginning of the week. Aaaagghh here we go, we thought, the site of the next possible infection which would take us back in but a couple of days have passed and it has died down a bit. Who knows - if we have learned anything this year it's that we can't plan beyond today. And today is the new normal - a couple of hours at school this morning while Simon and I met with her headmistress to discuss Rose's future and everything that needs laying in place for her to have a slow re-entry into her class and physio this afternoon. We are loving the new normal - and long long long may it last.
