“One Finger, One Thumb, Keep Moving...”

It’s 3 o'clock in the afternoon and I have managed to get both Oscar and Neil to have a nap. I have a baby monitor and a walkie talkie with me. I was reminded yesterday morning, of the many parallels between the two of them is, for want of a better word, their 'progression'. As I was feeding Oscar his morning Weetabix, he decided that I was being a bit slow, so worked out that he should just grab the spoon and feed himself. Two days before, Neil stopped struggling to hold his fork in his bad hand and lift it to his mouth with his good hand. The effort was just making him exhausted, and resulted in him losing his appetite.

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At the stage where Neil was able to walk with crutches, Oscar was just beginning to try to crawl and then when the wheelchair arrived, so did the baby walker. I also remember the day Neil and his brother Matt were learning how to use the hoist, Oscar was standing up holding the edge of his playpen for the first time, right next to them.

Oscar had been sleeping beautifully through the night, just as Neil’s time in bed became unbearably uncomfortable, so with just one of them having interrupted sleep we were able to cope. Unfortunately though, Oscar is a baby, and completely unpredictable!

My time is up… one of them is awake!


Reading this post brings me right back to the day I wrote it. It was a beautiful sunny day and I had managed to get the two of them down for a nap and hang the laundry out in the garden.  

A previous attempt at hanging the laundry out in the garden had not been so successful. I had been outside long enough for Neil to start panicking when I didn't reply to his call. It was one of those moments where he realised his vulnerability and his first reaction was anger in the wrong direction. But this day, we had discovered walkie talkies and they contributed hugely to our day.

I'm sure when we started using the walkie talkies we could speak to each other but before long he couldn't lift the radio to his mouth so he just pressed the call button. I would make sure it was in his hand before he fell asleep. They were great while he could still push that button, although I was in trouble a couple of times when I forgot to clip mine on to my jeans and left it in a different room. (I might have said something about it being knocked onto a different channel!) 

Neil being Neil though, liked his butler's bell a bit too much, and often I would go running down the hall to find a grin on his face. There was always a long list of chores but sometimes he would remind me that he wasn't dead yet, and I would benefit from spending more time with him. He was bored while I was busy. – Louise (2013)

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commented 2013-04-11 15:43:58 +0100
Comments on Louise’s original blog post:

Cash & Scoob
August 11, 2008 at 2:05 pm
We’re thinking of you guys all the time. I really wish we weren’t so far away.

All our love

A&R xxxx

Aunty Pau’s & Uncle Mel
August 12, 2008 at 12:53 pm
You are really doing well Louise, strength comes to you to keep managing and both Uncle Mel and I love you all the more for it.
We will see you all Wednesday evening, will try and get there a.s.a.p with Oscar’s card and presents.

Love and Kisses to you all.

Aunty Pau’s & Uncle Mel
xxxxxx

Sas
August 12, 2008 at 8:42 pm
We are thinking of you every day – what a mixed up bundle of emotions reading this… big love to you all and see you soon x x x

tbaker
August 13, 2008 at 6:40 am
Hi Neil and Louise

Neil, Ricky got in touch with me to tell me what was happening in your life and of course I just read your blog and I just wanted to drop you a line and say hello.

Well I see you got yourself a beautiful wife and gorgeous son which is unreal, I too have a 3 year old son called Marley who is the light of my life so I can just imagine how proud you both are – I also got myself a husband, so we are all terribly grown up these days.

Louise, I should explain that Ricky and Neil were once my saviours and party pals for a period I spent in England when I had to come back from Australia (where I live now). They were both amazing and looked after me and also showed me the best pubs and clubs along the Kings Road – we also did rather alot of dancing at the Ministry of Sounds.

So Neil I was really sad to hear of this terrible illness but in reading your blog, I see you seem to have approached it with the same upfront and honest attitude that you always had – you also always had a wicked sense of humour!!!

And I also see that you are surrounded by some amazing people and nothing in life can beat that.

Take care and keep in touch

Lots of love

Tonixxxx
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