Hi everybody, it’s Neil eventually. Sorry I've not added to the blog for ages, but I have been holding interviews to try and find a suitable secretary. This is a quick note following Oscar's massively successful First Birthday party last weekend. Louise, Oscar and I would like to say a heartfelt thank you to everybody for all their help, gifts and giggles, we had an amazing day. We would be grateful if you could send us any photographs you might have taken.
I hope to do another post over the weekend, so speak to you soon…
You can see from these photos the speed at which MND was ripping through Neil. If you look back to the photos at his own birthday, not two months before, the difference is frightening.
The palliative care ladies arranged to come in on a Saturday for us, to help get Neil ready for Oscar's party, and as I opened the door in the morning and saw one of them holding a big '1'-shaped balloon, she took a look at my face and said: "Come on, you can do it, you'll be fine." I think that was the first time I cried in front of them.
Friends and family made a huge effort to be there, many people came who had not seen us since we left London. By now we had a great core group of friends and family who knew exactly how to help, what to keep an eye out for, when to laugh and when to cry. I think most people must have been initially shocked to see the physical deterioration in Neil, but he soon let them know that his sense of humour had survived, thus far, intact.
For me, it was all going well until I realised we were going to have to sing Happy Birthday to Oscar. I couldn't even think about it without my eyes welling up. By now I was starting to hide some emotions from Neil, he hated seeing me upset and would feel responsible and helpless and ultimately get upset himself. I didn't want him to feel that way so I hid it. MND had found a way to break our communication.
I gathered my mum and a couple of good friends in the kitchen to confess that I thought I couldn't go ahead with singing Happy Birthday. They all understood and let me cry. We went through possible alternatives, other tunes that Oscar liked or just cutting the cake and taking it out. Thankfully just being able to talk about it and release a few tears gave me the strength to go ahead. If we hadn't sung Happy Birthday then memories of Oscar first birthday would have brought back nothing more than images of a living wake for Neil and I didn't want that for our little boy. I managed to get through it with only one tear falling.
Afterwards there were a lot of tears to dry, and I realised that it had been difficult for everybody there. But just as tears had given me strength earlier, tears seemed to be the release we all needed to get in the party mood. We had forgotten to organise music for the pass-the-parcel but it didn't stop us; friends gathered together to create a human jukebox of children's TV theme tunes, which strayed slightly towards the 1970s creating bemused looks from the children, but genuine laughs from the adults. Oscar got a huge haul of presents, he was a very happy little boy. A lovely memory. – Louise (2013)