50p spent

It’s been another day of parallels. I’ve held Oscar as he laughed then cried, and I’ve held Neil as he cried then laughed.

Oscar was at the National Railway Museum, which he loves. Neil was in the hospice, which he slightly less than loves. Oscar laughed as I put the 50 pence piece in the Thomas the Tank Engine ride, then cried when his turn was over and it belonged to someone else. Neil had a vision of his future and it made him cry as he felt his time was running out too. I held his hand and told him that it happens to everyone, and no matter how much he feels like it’s only happening to him, it will eventually be the turn of all of us, and he can cry all he wants. Then it was Oscar that made him laugh.

I’m so proud of both of them.

Neil has had, in his own words, ‘a less than average day’ and feels unable to write tonight. I’m sure he will, in his own words, ‘make up for it’ tomorrow.

Sleep well Neil,
Love you x


Oscar and I were having a rare a day out with all three grandparents while Neil was at the hospice. Oscar was going through his Thomas the Tank Engine phase, just like any other boy of his age, and from the second we arrived at the railway museum, he ran from train to train, occasionally stopping to reach up to a huge metal buffer or climb the steps of a viewing platform to point at all the dials and knobs in the driver’s cabin. He was in complete wonderment, it was lovely just to watch him and follow him wherever he wanted to run. I had managed to get through the afternoon with just one call to the pharmacist to re-order some of Neil's meds, the rest of the day had been all about Oscar. Then just as we reached the car park to go home, I got the phone call from the hospice.

I lived in constant fear of that phone call every time I was away from Neil. They assured me that he was OK but there had been an incident and he wanted us to come straight in. My parents took Oscar to the house and Neil's mum and I went straight to the hospice. We were at least half an hour’s drive away, and by the time we made it to Neil, he was in tears. They tears of relief at seeing us again.

Neil had been in his chair when his head had dropped forward and knocked the ventilator mask slightly, not sufficiently enough for the alarm to sound, but enough for him to panic. He hadn’t been able to lift his head back up again, and even though he had been on a baby monitor, he hadn’t been able to raise the alarm. He had been scared to try to shout for fear of making matters worse. He had thought he was going to die; without me, without his mum, and without saying all he had wanted to say. It had made things very clear for him, he was not yet ready to leave.

Once the fear had subsided, I took my camera from my jacket pocket and showed him the video I had taken of Oscar running from train to train. It was watching his boy running around with excitement that made him laugh. – Louise (2013)

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followed this page 2013-05-12 16:40:19 +0100
commented 2013-05-11 15:24:06 +0100
Comments on Louise’s original post:

Lula Stefanski
January 22, 2009 at 9:16 am
Morning Platts,

Thomas rides really need to be much longer don’t they!!!
Neil, we are all crying and laughing with you. Louise is right with everything that she said to you…and cry as much as you need to, as long as it doesn’t produce too much snot!!

It must be said to you Louise, we are all extremely proud of you too.

Looking forward to the weekend..more laughter, tears etc…

Love Lula x

Andrea Kler
January 22, 2009 at 10:07 am
Hiya Neil

On here, again!

Looking on web sites etc that we were talking about last night.

I just wanted to say that I think that you are the bravest man I know and I am so proud to be one of your friends.

You know if you need us for anything we are always here, even if it is for more Heinz Tomato Soup!!

Think of you all the time, love to you all and take care.

Love Andy and Family xxxx

Sara
January 22, 2009 at 11:22 am
Hi Louise

Just wanted to say that we are extremely proud of you and of Neil and Oscar of course. Your strength never ceases to amaze me and I feel very honoured to be your sister… (in-law).

Even though we are far away, we are with you every step of the way – through the tears and the laughter.

Love to you all from rainy Pittenweem,
Sara x x

Brian in Geneva
January 22, 2009 at 11:47 am
Hi Platts

Running off to the airport to put Kayleigh on a plane to Oslo for school. The sun is shining and I’m thinking of you guys. Need a beer?

bmc

Aunty Pau’s & Uncle Mel
January 22, 2009 at 12:51 pm
Hi both of you

Everything you said Louise is true it comes to us all in the end but it would be nice to be able to pick how we go. You are both so strong and I’m sure Neil will pick up again. I can understand how Oscar feels about Thomas the Tank ride I would be the same about Winnie the Pooh!
By the way Neil, Morrison’s must know how much you love Sport biscuits they are now doing them with 100% extra for free – so got you some.
See you Monday, hope you have a better day and good weekend.

Love to all
Aunty Pau’s & Uncle Mel
xxxxxx

Lorna
January 22, 2009 at 3:22 pm
Hi Louise,

I always worry when I leave a reply that it might sound a little twee or condescending as I am a stranger, but I really do mean it when I say that you are really such an inspirational couple and your strength as a wife and mother is amazing.

Thinking of you all every day.

Love Lorna xxx

Irem
January 22, 2009 at 4:36 pm
Louise, Neil,
You are the bravest couple, we are thinking of you.

On Monday 26th I am organising a coffee morning in the office to raise money for MND Association, two of my colleagues are helping me. We will run a ruffle as well, I will hang printouts from your blog and also we will distribute some printouts about MND.

I will keep you posted on the outcome.

Love to you all,
Irem

Gary Brown
January 22, 2009 at 8:20 pm
Hi Louise,

Everything I read about Neil, Oscar and you makes me feel so many emotions. Emily and I now have two wee boys (Howie and Murphy) so when I read about everything going on in your lives I think a million things which obviously include the fact that I have so much respect for the strength of character you all must have. Plattitude has no doubt inspired many people to look at themselves, their families and the world at large and got people thinking about trying to make life that bit better.

Gary

Sas
January 22, 2009 at 8:51 pm
As others have already said, we are so proud of you too Louise. And we are laughing and crying with you both as well…(Megan can relate to Oscar’s Thomas experience – she’s just the same!) xxxxxxxxxxxxxxxxx

Lu
January 23, 2009 at 12:51 am
Evening, Louise, Neil and adorable oscar , i am with you all in spirt and love every day. Keep on fighting, smiling and enjoying every moment together . You are a truly remarkable family.
Much much love lou xxx will keep reading and thank you so much Neil for the dairy, it keeps us all aware of this dreadful disease but how you are fantastic in your fight. Not only do you have to fight the disease but for a dignified existance due to lack of awaerness, even in the prefessional secotors
Night night god bless xxxx

Andrew
January 23, 2009 at 3:13 am
Hello from the Wet (West) Coast of Canada. Just thought I would drop a line to let you know that you are all in our thoughts and prayers. Keep up the good work.

A
@breathingfilm tweeted this page. 2013-05-11 15:19:11 +0100
A message from Louise to Neil in the hospice, filled with tears and laughter. #Plattitude #MND #ALS http://www.iambreathingfilm.com/50p_spent?recruiter_id=2
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