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)
December 2, 2008 at 11:13 pm
Night Night Sleepy in Starbeck – glad to hear about that publicity; also glad that you are enjoying Oscar’s flourishing! Love to you all from us down here x x x
December 3, 2008 at 6:35 pm
Glad to hear Yorkshire Post will run some publicity. Let us know when it is issued. Glad to see you back on-line too!
December 3, 2008 at 7:51 pm
Simon posted the Yorkshire Post story on Facebook and I’ve done the same to spread the word. I’ll post it on my blog and some message boards (we do talk about things other than Star Wars ). It’s good to know that people in the media are taking interest in what’s going on.
Gazzillions of our love to you all,
December 3, 2008 at 9:21 pm
Hi there sunshine
great news about the awareness, i’m going to look into raising some awareness at my end and i’ll have a chat when i see you (soon) oscars a little angel, I’ve only just met him as you know but you can see an aspiring little chappy who i know you are very proud of. You keep enjoying the little one progressing !!
sleep tight cous
ann and peter
December 3, 2008 at 11:14 pm
We have just found this website….we are definitely dinosaurs technologically speaking…I can type that because Peter isn’t here dn he would not like that term being applied to him.
I am not often lost for words but your words leave me speechless. You always have had a beautiful way of expressing yourself but this is exceptional! I think about you every day and have been very worried because I didn’t know what was happening with you. Now I do and although I find it desperately upsetting that we are so helpless, the Neil I know and love is still strong inside. You are so special Neil, I feel very privileged to know you. I have lots of memories of you over such a long time. Oscar is a delight…it was lovely to see him at his birthday party. We were so proud to have been invited to your wedding and really enjoyed the wonderful day.
If we can do anything at all please let us know. MND fund raising will now be high on our donation list now.
Keep smiling at Oscar!! and Louise……
Lots of love
December 4, 2008 at 11:38 am
Great news about the papers and wotnot and lovely to hear Ozbo is keeping you occupied:) hes a little sweetie. Thanks for calling yesterday, i know it was hard work but was fab to hear your voice – miss you loads.
Rest up dude and enjoy 007…
December 5, 2008 at 12:07 am
Hello my love
I too wanted to pop in and say another hello from Oz. Neil, I also have become an avid reader of your blog – you make me laugh, you make me cry, all in about 2 paragraphs but what I feel is privileged that you have shared this journey with us all and highlighted the need for further research into MND.
I particularly love the updated photos of you and oscar – how special – little boys always have a natural affinity with their dads as I well know with Marley and his dad – if I really knew how to use these blog things I would send you a photo of my little boy for they are the most precious things in the world. I am sure you and Louise have created a gorgeous boy with a love a life and sense of fun and big blob of cheekiness!!!
Take care and enjoy the special time with your family and friends at christmas.
Lots of love