30th July: Onwards and upwards

Simon has been making significant progress over the last few weeks. It seems like we turned a corner at the 12 month mark, and despite all the pessimism emanating from the research data, his progress has accelerated markedly. Simon now walks regularly holding onto a fixed rail and can manage as much as 50 metres in an hour. The effort that this takes is equivalent to me walking around 5 kilometres, and as a consequence he is losing weight again. In the last two weeks, Simon has learned to stand up from his chair without holding onto the rail. He can stand and balance for around 3 minutes at a time. Once this skill is fully honed he will be able to try walking with a quad stick.

Even more progress has been made in speech therapy. While it is true that my ability to interpret is now very advanced, Simon has been able to hold detailed and complex conversations with his consultant (the wonderful Professor K) and to make and receive telephone calls. He spoke with Stephen Pantlin last week, they were both close to tears I think. Simon now regularly sends email independently, and has stepped up his ebay activity to the extent that we may need to buy a new house to store all the new CDs!

Professor K has suggested that Simon should begin planning his return to work, and recommended that he start by attending some research seminars at the University. We are hoping to arrange this soon.

Meanwhile, we continue to wait for the powered wheelchair. It has at least been ordered, but outrageously we are told that we may have to wait until Christmas for delivery. I know that it is possible to telephone the manufacturers in the USA and have the chair custom-built and shipped within two weeks, but government departments don't work like that. Ho hummm.... It would be pleasingly ironic if Simon were to be walking independently by the time his chair arrived.

We did get given a new powered bed for Simon - we can raise it up and down, lift the head rest to a near sitting position etc. This is much more comfortable for him, although a bit odd with both of us in adjoining single beds. I feel the cold without him. I have tried to persuade Skippy to sleep on my feet to warm them up, but he prefers to sleep on Simon's tummy.

Heard some rumour about Beckham joining West Ham. Oh yeah....

Love Marian x

July 5th: 365 days

We are exactly one year into Simon's journey. I take a deep breath and hold back some tears. I remember the terrible things that were happening that night a year ago, the confusion, darkness, pain, fear, hopelessness. What if I had lost him? When I saw him this time a year ago he was covered in tubes and wires and a priest was standing over him. We have come a long way.

Simon was at the rehab clinic today and I was at work so we did not get to mark the day, but tomorrow we will. Simon will have lunch with Jeremy from the Royal Society for the Blind - Jeremy helps Simon to find his way around the town in his wheelchair and they sneak into the pub quite often, I think. Tomorrow evening, my family are gathering at our house for a pizza extravaganza (take-away). We will celebrate Simon's survival and our future.

In the last year I have learned more than I was ever taught or self-taught, and come closer to Socratic truth than was comfortable. The one true thing that I know... I love Simon.

Love Marian xx