Monday 26th July

The boys are back in London for the week for a cricket festival and Rose and I are taking it very easy on the island. Picnics on the beach with family staying nearby and lots of gentle playing with friends at the house - the pain and frustration for her of not being able to sail, cycle, trampoline and run around on the beach is mitigated by trolleys full of landfill from Tesco. We will need a trailer to get the dvds, toys and books back to London at the end of the summer - arts and crafts, baking and listening cds are the new thing and every mother in the neighbourhood is buying into it. It's still ok more than it's not and most of the time I'm in my depth - pain relief has stepped up but I'm still not sure she's ever free of it. Behind closed doors the bewilderment and fear is too much for her more often, her moods are understandably testing and there are no boundaries any more - I don't make her brush her teeth if she can't be bothered, there are no bedtimes, no mealtimes, no time away from each other and it makes the last two and a half years look like a walk in the park. I am exhausted and yet this is just the beginning of the next phase, the new normal.

When distracted from pain and immersed in something fun Rose is the same Rose she has always been. This shouldn't happen to anyone let alone any child but if ever there was a child that was going to grab life by the scruff of the neck and snog it senseless it's this one. In pain and on morphine Rose is still more fun than just about anyone else I know. Spectators on the sidelines of our life remark continually on how well she is doing and how much she is still getting out of every day but we are left with the fallout from pent-up pain and anger when the fun comes to an end or the morphine wears off.

Anyway today they won their cricket on the mainland and here on the island I drank lots of wine with a lovely neighbour watching the lights on the water and the sailing boats and all is well.