Some truly stop-you-in-your-tracks moments in the last few days which are only remarkable in how totally unremarkable they are - here are a few of my best ones. Rose, Felix, Simon and I in the kitchen on Monday morning - both children in uniform, Simon in a suit, me packing bookbags, EVERYBODY arguing. Rose walking downstairs using the bannister and no crutches. Slowly, unsteadily, bent in half, clinging to the bannister for dear life but doing it! Going swimming with both children on Sunday afternoon like any other family - bit of a palaver but basically just great fun. And there are more snapshots of normality sprinkled through the day that are getting more and more frequent and fabulous. Rose eating a Sunday roast - Rose eating anything actually is still cause for celebration all round but it's definitely beginning. Counting down (or up) the kilos until her stomach feeding tube can come out - very unreliable and she can still go the whole day entirely nil by mouth but after nearly a year of eating barely anything she is having lightbulb moments of remembering that food can be a pleasure - even when I've cooked it - and suddenly announcing that she is 'starving'. Decanting 500ml of Paedisure Plus every night and attaching it to a feeding tube in her stomach is not eating and I can't wait to get that last foreign body (barring the big one holding her leg together) out of her and take another step nearer normal.
Any kind of exercise or physio is still the greatest drag on earth and all she really wants is to be left in peace with her friends at school, safely on her bottom, so our relationship is doomed. Like the proverbial bad penny I keep walking through the classroom door and breaking up all her fun with physio and hydro appointments - she has just got to trust me that in the big scheme of things double art fades into insignificance compared to being a biped and that if she ever wants to get on that pirate ship she's got to do it my way. Life is pared down to home, physio and school for both of us by day and by night my dreams have been visited by bizarre x-ray versions of Rose running in the playground and sleeptalking mantras of physio instructions 'weight down, Rose, step it through' - so there's only Rose and no perspective but it's a million miles from the hell we've left behind us. She is a continual reminder of how adaptable we all are really - the daily grind of the hickman line, canulas, chemo drips, infections and fevers belongs to her past and the present is what reading level she is on, who she will choose to stay in at break time with her and how she will get out of doing her exercises. So that one has stayed with us...
New in the cast list of Rose's theatre is Rob the physio who in motivational terms alone is priceless and we need to bottle him and take him home with us - think young, lean, blond Australian brimming over with energy and enthusiasm - 'Rose you are rocking it out today' - takes no prisoners, makes her cry every time but despite this she is putty in his hands and has taken her first few tentative steps with him. He crawls along the floor gripping her knee in both his hands to give support and cheering her on - there's no time for thinking about it before she knows what she's doing she's putting weight down and 'rocking it out'... we're both captivated and come out on a physio high. Even when she's done almost nothing at all and has no intention of repeating what little she has done she tells everyone with a huge smile 'I did really well at physio today' - if we can turn physio into a leisure activity peopled with handsome young antipodeans the future could be looking a lot brighter for us both...
Actual tangible progress with walking is negligible so far but there is a bubble of optimisim in us both - even if rarely at the same time - and sometimes it really feels that this could be the end of one awful year and the beginning of a rosy future for her. Our expectations are so much lower than they were in June when she was operated on and we naively thought that after a couple of weeks she would start to hobble about - one by one I've knocked goals off a mental list not out of defeatism but out of a slowly dawning realisation that Rose will never get back to where she was physically. Not aiming for any kind of perfect now - just independence and a future. So quite a lot actually. She's got more hospital stuff looming in the next week or so which I wish I could protect us both from but I can't and she and I are going to have to get used to veering from show-and-tell to chest x rays in the same day. Rose however is guaranteed to take it all in her stride!
