Pot holes & hot holes

This is the first post from Neil where he discusses dying and thinking of Oscar in the future. You can tell how much having friends around lifted Neil's spirits, and perhaps this was why he felt able to bring it up. – Louise (2013)

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Hello again

I return as promised! Alas, much like Louise, I'm having difficulty in figuring out where to start as so much has changed since I last wrote (21st July).

Louise's most recent posts seem to cover the physical progression pretty well, and I don’t particularly feel the need to go into any more gory details. Given that I don’t know where to start, I'll start with yesterday:

We three and our friends Colin & Anita enjoyed a wonderful drive up into the Yorkshire Dales for a few blissful hours out of the house, with only the minute downside of a painful and quite warm backside. Remarkably this would be our first such jaunt since moving back to Yorkshire in April and reminded me greatly of my misspent youth walking and climbing etc etc.

It also reminded me of the things that I would love to have been able to do with Louise and Oscar and got me thinking about who would do these things with Oscar in my stead. You’ll be delighted to know that I made a list! Now, while not my last will and testament nor legally binding in any sense, please be advised that if the following persons do not discharge their duties as assigned I will be back to haunt you! Okay…

1. Rock climbing & abseiling: Uncle Matt
2. Orienteering: Uncle Simon
3. Hill running: Uncle Cash
4. Caving / pot holing: Uncle Paul
5. Canoeing / white water stuff: Uncle Stephen (because I would love to have seen you have a go)
6. Hang gliding: Uncle Colin
7. Castle exploring-type stuff: all the aunties.

There. That's that dealt with. I feel better already!

There’s no denying things have moved on some, for one thing the number of people coming and going has increased dramatically over the last few weeks. None of that increase is unwanted and it includes the amazing group of friends who have made my comfort foremost in their thoughts and actions. Sometimes I feel so overwhelmed with gratitude that words fail me altogether.

So, in case I forget to say so later – Thank you.

The level of professional care I am receiving has also intensified. With the addition of overnight care to the overall package, our lives, Louise's in particular, have been made considerably easier, it has freed up some precious hours for our small family to enjoy, and for this we are all so very grateful.

The nature of conversations I have with various medical professionals has changed. I have had the first really real discussion about how and where I would like to spend my remaining days. This was not as unpleasant or as complicated as you might think. In fact, I have been under more stress trying to place an order from Domino's in the past. You just kind of know, and once you’ve said so – that’s it.

The one thing I do spend a lot of time doing is thinking about Oscar and the questions he may one day have wanted to ask me. I find myself not worrying about these questions 'not being answered' in my absence as I honestly think that for any question he may have, one of my family or friends would know instinctively the answer I would give. However, just in case, another list will follow in a later post, just to let you all know what your category is.

I've enjoyed my protracted waffle very much and shall do so again when I can find someone who types as quick as Colin!

Much Love
Neil


After writing this post Neil realised that he could write his letter to Oscar the same way, with Colin at the keyboard. I think he felt he had the right relationship with Colin – it was not going to be an easy thing to do. His physical condition wouldn't let him have the privacy to write all he wanted to say to Oscar alone. – Louise (2013)

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commented 2013-04-11 15:49:09 +0100
Comments on Neil’s original blog post:

Lisa & Rick Stefanski
September 9, 2008 at 11:45 am
Hi Guys!

…You are so very brave Neil, and in all of this, you can still manage to add laughter to your situation.

…We are all well. Jenson has started school and Jake is back at nursery. There have been a few tears from the boys, but none from mummy surprisingly enough!!

We hope that you are all ok and we will call you this week at some point.

Take care & lots of love,

Lisa, rick, jenson & Jake xxxxx

Gill
September 24, 2008 at 6:00 pm
Hi Neil

On Brian’s behalf, I would like to volunteer him to introduce Oscar to Star Wars and Indiana Jones at an appropriate juncture. A critical part of every child’s development, I’m sure you’ll both agree…

It was good to see you at Oscar’s party, we hope to be down again before too long.

Gill
x
commented 2013-03-08 17:56:02 +0000
Neil would be so pleased to see how much love and support Oscar has from so many people, including especially Robin.
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This is the first #Plattitude post where Neil discusses dying and thinking of Oscar in the future. #MND #ALS http://www.iambreathingfilm.com/pot_holes_hot_holes?recruiter_id=2
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