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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@ 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
THE THIN SPACE BETWEEN LIFE AND DEATH
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