Hello to all our readers, families and friends on what seems to be a very chilly New Year’s Eve.

We hope that you have all had as warm and wonderful a Christmas as we had here at home. It was very quiet for us as I told you in my previous post. Quiet in that only parents and my brother joined, quiet that it was contemplative, but mainly quiet because it’s harder than you might think to drink all your alcohol through a straw!  To dispel another urban myth, it doesn’t appear to get you drunk any quicker at all!

This is a situation that I intended to remedy later on this evening as we all join together to welcome 2009.

I can understand that some of you may be wondering how we can get together for a night of celebration knowing, at least in part, what the future year holds.  I would like to try and explain my point of view, which may well be different from that of my wife and our families.  Firstly and most simply is that I did not expect for one second to be here.  I had hoped to be here for Oscar’s birthday, let alone four months later, and very grateful I am for that time.

With that gratitude has come some unexpected hopef that 2009 may hold something else in store for me.  I am not talking about miraculous cures being this hope, you will all have gathered by now that I am a realist.  I’m talking about my living on a little longer giving me the chance to impart more knowledge to not only the public through our campaign, but also let those people dear to me ask their questions.

The campaign has, almost, become my sole focus.  At the end of this campaign lies a cure, so how could I not use as much of my additional time as I can.  Similarly, how can my loved ones not be the centre of attention in every waking second.  The answer to this is of course is to allow one is to deny the other, a difficult balance you will agree.

I have the fortune of being in a position where I can do both.  My family, my wife and her family fully support our fight.  This means that I can spend the time I have left with the people that I love, fighting the disease which let me live through 2008.

The icing on my cake is that I get to see my son continue to develop, hear his new words, discover new things.  I am also overjoyed that I get to grow a little older with the woman I was meant to be with.  And that, my friends, is my toast to 2009.

I consider myself fortunate to have what I have, and if you’re half as happy as I am then you are doing all right.

All my love,
Neil

Neil was so appreciative to reach 2009, the year of his death and he knew it. He had reached another important date in the calendar, a date which has always signified a time of celebration, and I honestly think he didn’t feel any differently about the date that year.

Neil talks of his campaign and reflects upon achievements, just like any other year. I did support his campaign, but not only for the purposes of awareness and fundraising. As he says himself here, it gave him focus, and I saw that greatly improve his quality of life. Neil’s days would have been intolerable without something else to focus on other than myself and Oscar.

With such language as,

‘living on a little longer giving me the chance to impart more knowledge to not only the public through our campaign, but also let those people dear to me ask their questions,’

I was worried that his mix of strong painkillers were starting to go to his head, his language was bordering on deific! If he meant to sound that way it would have been with tongue firmly in cheek, but if he could physically speak to his computer and actively participate by giving interviews, he could do something useful. It was a struggle, but still within his capabilities. It was such a contrast to how he felt about contributing to family life. He would get very upset about not being able to help me and hated feeling like the cause of my exhaustion.

New Year’s Eve was now upon us and even in his current condition, Neil had arranged another gathering. Once again, he asked me to put the call out and demand the presence of his friends. Once again, the house was filled with support and laughter. I can’t think of another year of my life when good friends gathered together so often.

Life changes, the things we strive so hard for; work and commitments, babies and family, they can all take precedence over time spent with good friends, but not the year that Neil was living with motor neurone disease. It was the one prize for all the loss. – Louise (2013)