Tomorrow we go to Great Ormond Street.
We are going up in the morning, seeing the Junior Doctor and the Physio in the afternoon, staying overnight at the hospital and then seeing the Consultant on Thursday morning before coming home.
We both have very mixed feelings. GOS is the holy grail of children's hospitals; and if there is help to be found anywhere for N, it will be there. However, it is also the end of the road. If they can't help us, no-one can.
The uncertainty of it all comes up and whacks me again and again and again. I don't know how to deal with it except with rigorous compartmentalisation.
My day to day life is all about the laundry and the dishwasher and feeding children and chickens. It is talking to school, talking to the hospice, talking to the hospital. And then there is this, this dark patch in the corner of the room that is always there just out of sight, sliding away when I try and look at it directly. How long have we got? What is going to happen? How's it going to end? When's it going to end? What will we all do afterwards? Where will we live? How will L cope? What will I do?
What will I do?
Day to day, all we can do is put one foot in front of the other and deal with the issues as they come up. Return phone calls, keep appointments, do tube feeds, stretching exercises and nappy changes. But inside both B and myself, a part of us is screaming; and I have no idea how to deal with that, because it's always there and it's not going to to away until it's all over.