Sorry everybody, it’s been nearly two weeks since my last post again. This is in part due to technical failure of our Internet connection, in part due to being very busy with visitors and also the advancing of our crusade. I have lots to tell you and will have to do this over two or three posts but obviously I will link them together in the lyrical fashion with which you have all become so familiar.
Through our requests on the blog you have provided us with a number of avenues that we are pursuing to publicise our story and raise awareness of MND. We are working with the MND Association as well as seeking our own access to the various media formats. We are pleased to say that in the last fortnight we have had an interview and photographs for a piece in the Yorkshire Post, we will let you all know the date the article will run. The MND Association have also published a press release which we hope will generate further interest.
With the exception of being involved in the above, my principal pastime continues to be watching with delight my little boy as he explores the new found freedoms of walking and talking.
Unfortunately even the latter has been proving difficult over the last few days due to the fact that I have been considerably more tired than usual. Whether this is due to broken sleep, too much talking (which is to me as a hundred meter sprint is to you) or just the latest in a long line of extremely bitter disappointments this tortuous condition has brought to me, I do not know. That said I’m feeling slightly better already after having Oscar on my knee for his milk and my goodnight kiss.
Hoping I’m more awake tomorrow as I intend to write more, much love
It’s difficult for me to comment on this post, not because of anything particularly upsetting, but because I have a very patchy memory of this time. I can remember times of such awful things and feeling that we were running in a race against an Olympian of diseases. I have some lovely little pictures in my head too, largely due to Oscar, and I have great memories of laughing a lot with friends who gave up their holiday time to spend with us, the sort of friends you always think about but usually let life get in the way of seeing. But there are huge gaps in my memory of this time, as things started to become routine. The changes had slowed down because Neil had lost almost everything physically, and there was very little left to lose. Days started to blend into one another. I know Neil talks about this in a later post.
Exhaustion was starting to get to Neil. It took great effort for him to talk, but the more he felt the hands of time, the more he felt he had to say. Our local representative from the MND Association put us in touch with their communications manager who called to speak to us and then put together a press release for Neil. To give you an idea of how determined Neil was at this point, I have the email I sent to the journalist from the Yorkshire Post to arrange the interview, it reads:
"Early afternoon is a good time to get Neil as he’s up around noon and is exhausted by about three or four. I don’t know how much information Michelle has given you but Neil is in end stage and we have no way of knowing how long he has, due to the intervention of ventilation."
Reading this email back, I am amazed at how much more he managed to achieve with the time he had left, as this was his first interview.
There was some welcome normality caused by the monotony of routine. Neil would go to sleep around three or four, and then we would get him back up again for dinner with Oscar. When the equipment got too much for our not-so-little kitchen, we moved Oscar’s highchair into the living room and faced it towards Neil’s chair so they could interact with each other, then after Oscar’s bath he would get his milk and a story on Daddy’s knee. We still did this long after Neil no longer had the stamina to read the story himself. Oscar had a habit of playing with the hair on Neil’s arm, he would have his milk cup in one hand and be twiddling Neil’s arm hair with the other. I don’t know if this was painful or tickly for Neil, he did pull some faces, but he would never have discouraged it, he loved that little bit of touch; as he says, it made him feel better. – Louise (2013)