I am lost for words... almost.

Ho–ho–ho and Merry Christmas to everyone,

This will be my last post for a day or two, unless I tire of all the frivolities in which case and I’ll pop back and rattle on to myself for a bit.

Oscars_first_Chrstmas_320.pngAs Louise and I sat down to dinner on Christmas Day of last year, I looked across at my wife and down at my little boy relishing every second as there was a very real possibility that it will be my last. I cannot begin to explain to you all just how much it means to me to be here this Christmas Day.

The circumstances are obviously somewhat different, but it’s surprising when certain traditions and rituals are unavailable to you how little you miss them. I do know for certain that I will miss the Boxing Day pint with the usual suspects (you know who you are)! I will miss not being able to travel the length and breadth of the country from London to Leeds to Edinburgh to see all those people I would not see too much of during the rest of the year. But one of the things I have missed most has been helping with the decorations – Louise and I used to go on a little mission into town to buy one special decoration which we would bring home and take a photograph sitting on the floor in front of our tree.

For the most part, I think I’ve discovered that much of what I associated with this time of year doesn’t mean very much at all. It’s not about presents, it’s about friends. It’s not how much you drink or eat, it’s about family (obviously it’s a bit about drinking and eating!). I know this sounds a bit cliché and preachy, but that is just how I feel today.

Some of you may know, some of you may not, but the amount of help Louise and I have required over the last nine months or so has been enormous. I would have hazarded a guess at there being at least 50 people involved in our professional care team for starters. I would like to thank every member of that team for taking such good care of me and with such dignity but also as a 34-year-old not an 84-year-old and so with some fun and laughter (you know who you are too).

Our family and friends know what their help and support means to us but I would like to tell everybody else how much you have done. Hundreds of miles have been travelled up and down the country, holiday time been used to come and look after me, all manner of food prepared and ready to eat has been delivered, DVDs bought and rented by the dozen, helping me with near enough every requirement from dawn till dusk, helping us rearrange our house (about 20 times to date I think and have been told they were all required — besides I always love the game of hunt the socks and towels afterwards! I love you R.W.).

The thing we had not counted on was the volume of support pouring over us through The Plattitude. Your response has been incredible. The way it makes me feel is that through the momentum our community is building you will all be instrumental in finding a solution to our particular problem. In the last three or four months your efforts, besides looking after me and providing support on here, have raised in excess of £4000! This is the best Christmas present I could ever wish for.

I would also like to say a special thank you to the elderly lady who visited house this evening. Mrs Kitching tracked us down through the Motor Neurone Disease Association to deliver a cheque for £1000. Unfortunately I was unable to meet Mrs Kitching but if you are reading this then I would be delighted to meet you in the New Year. I can think of anything to say, blimey I may actually be lost for words!

Oh, save for thank you from the bottom of my heart for everything, and
Merry Christmas and a blinding 2009!
Neil, Louise and Oscar xxx

My email to friends that night read, ‘I swear I just met Santa!’

It was already dark and very cold outside when the doorbell rang around five o’clock in the evening. I was busy and shouted to my Dad to answer the door. From the kitchen I heard a lady’s voice saying: ‘Is this the house with the man who has motor neurone disease?’ I dropped whatever I was doing and went to the door to find a lady, with white hair, wearing a red fleece sweater and holding a cheque, asking who to make it out to. Had she been a man with a beard, I would have thought him a practical joker on Christmas Eve.

I asked her to come in the house to warm up and say hello to Neil but she refused, said she had a head cold and didn’t want to pass it on; she just wanted to write the cheque and asked if I could give her something to lean on. I couldn’t believe it when she handed me a cheque for a thousand pounds. She explained that her brother had just died and left her a large sum of money in his will. She said: ‘Well what am I going to do with it at 87 years old? I saw you on the news and telephoned to get your address.’

Our house was not easy to find, hidden from the road down a single track at the side of the railway line. She had been driving around the neighbourhood but couldn’t find the address so she left her car and walked down the track to see if it led to a house. One very determined lady, she wouldn’t even let me drive her back to her car or let me walk beside her with a torch, she just left her cheque and walked off into the darkness, adding a lovely memory to the Christmas I will never forget. – Louise (2013)

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Showing 3 reactions

commented 2013-04-11 16:18:24 +0100
Comments on Neil’s original blog post:

Andy Ward
December 24, 2008 at 8:48 pm
Hi Neil,Louise and Oscar.
Just to wish you all the most wonderful Christmas, and let you know that when we go to the local church at Midnight for the Christmas mass, we will be remembering you all in our prayers.
We can only guess at how difficult the last year or so has been for you all, but we try to keep up to date with your blog as often as possible.Keep up the fantastic work that you are doing to help raise awareness of this cruel disease.”So shines a good deed in a wary world”.God bless.Merry Christmas.
Andy,Teresa,Rachel,Lauren and Andy Jr Ward,Sleaford

December 24, 2008 at 11:37 pm
always great to hear you waffle Neil:)

Merry Christmas xxx

Andrea Kler
December 25, 2008 at 12:42 am
Have a lovely day all of you.

Take care.

Love Andy xxxxx

December 25, 2008 at 8:24 am
Chin Chin, all.

paul ward
December 25, 2008 at 2:51 pm
hi neil it`s paul ward merry xmas to all the family, and just to let you know that we are thinking of you louise and oscar, how your mum? did matt tell you i spoke to him the other day, he sounds alot better than he did a few months ago. Is there any thing i can do for you or do you need anything for your self or the family. love paul and family

December 25, 2008 at 3:49 pm
Merry Merry Xmas, Neil,
Louise Oscar and helpers!
Love Bryce and Jane

December 25, 2008 at 6:32 pm
Thinking of you all. Well done for having the courage to raise awareness.

Danny Milner
December 25, 2008 at 11:21 pm
Hi Neil, I left a message on phone, but in case you don’t get it in time as Xmas day almost over, here’s wishing you have had a happy time so far with Oscar and Louise and hope you found much joy and happiness watching your gorgeous son opening his pressies. Mum has been reading all your blogs and has just found your ‘motorcycle’ one with the photos on, so wiil print some off, as I only had the ones we took at the ‘London Eye’ etc. though Linzi gave me a frame ‘n photo [off the site] today. Thinking of you with much love, and the best wishes in the world, and keep smiling,
from Danny and Mum Sue xx

Aly (Dobbie)
December 26, 2008 at 2:25 am
Hi Guys, merry Christmas. Thinking of you all.

All my love xxx

Brian, Jane, Kayleigh and Jennie
December 26, 2008 at 9:10 am
The sun has risen over the alps this morning. Thinking of you so much.

Smile at us, cuz we’re smiling at you.

December 26, 2008 at 11:50 am
Merry Christmas Platts.

You were in my thoughts in a big way yesterday. My mum also sends her love, as do Sandy and Alison.

With love,

commented 2013-04-05 21:20:29 +0100
There is goodness in the world even if sometimes you can’t see it, it pops up just when it’s needed.
@breathingfilm tweeted this page. 2013-04-05 18:04:51 +0100
Merry Christmas on The #Plattitude. A Christmas Louise will never forget... #MND #ALS http://www.iambreathingfilm.com/i_am_lost_for_words_almost?recruiter_id=2
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