One already!

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)


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commented 2013-04-11 15:47:31 +0100
Comments on Neil’s original blog post:

September 5, 2008 at 7:44 pm
Hi Neil, Glad you managed to recruit a good secretary. We had such a great time at the party – Megan especially loved having it large on the bouncy castle… I’ve just had some copies of our photos printed and will post them off to you tomorrow. Love from Sas x

Lisa & Rick Stefanski
September 6, 2008 at 1:47 pm
Hi Guys, What a lovely picture!

We had a fabulous time at Oscars party and it was wonderful to see you and Louise. We have missed you so much and we will do our very best to come and see you as soon as we can, minus the kids if possible.
We will send you some pictures. The pictures that we brought home of you and Oscar have pride of place on our fireplace.
Neil, you are doing brilliantly and as difficult as it is, you have retained your wicked sense of humour!!!

We will speak next week!

Lots and lots of love

Rick, Lula & Boys

The Nobles
September 6, 2008 at 6:43 pm
Hello Platts

Just to say thanks for the wonderful (and extremely well organised party) – it was really lovely to see you all smiling and this beautiful photo captures the ambience of the day perfectly.

Thank you also for giving me the opportunity to spend the week with you and let me help you guys out. I haven’t stopped thinking about you all since I left. Louise and Neil – I think you are coping brilliantly and I feel honoured to be part of your family.

Douglas is really looking forward to coming down next weekend and has promised to give you some Reiki Neil – make sure you work him hard, he needs it! Although, I have to say, the house was remarkably tidy when I got home….

Just one more thing Neil – what was wrong with my interview? I thought I would make quite a good secretary

Love you all lots,
Sara x x

Uncle Mel
September 9, 2008 at 10:27 am
Hi Louise, Neil and the big fella in the flat cap.

Sorry I missed Oscar’s first birthday. But I had been asked by the Portugese Government to try and reduce the whisky problems around the Albufeira region. A daunting task but, I think its solved now.
Of course Aunty what’s her name wasn’t too pleased, but a a man with a mission cannot be daunted, as you know.
I noticed you are drawing up lists for people to give Oscar guidance in certain activities in the future. I would like to put my name forward for the category of “Introduction to fine wines, ales and spirits, and their control”. Provided his mum gives him sufficient pocket money, I am sure it will go OK. Of course this will include the following:-
1) Controlling yours eyes when they are spinning in both directions
2) Knowing which way your head is spinning and going with it, not
against it.
3) How to get maximum measures for minimum outlay.
And last but not least.
4) How to do a floor roll after falling from a barstool without
hurting yourself, or looking a fool.

As you know I am a Featherstone Rovers supporter. Our nickname is
“THE FLATCAPPERS”. Can we include Neil and Oscar as supporters too.

As usual blogged to long.

See ya soon,

Luv Uncle Mel

Michelle Htun-Kay
September 14, 2008 at 8:42 am
Please post more photos! This one is awesome! I’m so sorry we were not able to come up from London. Kisses
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