Finding the time – and summoning the energy…

‘Was I just being a bit shit?’
‘Yeah, you were being a bit shit’.

This (perfectly good-natured) exchange occurred yesterday as a friend and I tried to work out how we hadn’t managed to meet up 3 years ago when he’d been in town. Or at least 30 minutes up the road.
3 years ago.
And prior to that I hadn’t seen him for, well, probably 10 years.
You’d think I’d have made the effort, right?

Prior to having Alex, I’d have agreed. Whilst never being known for being on time, I don’t think I’d been known for physically not turning up. I was always late, always tried to make time elastic, but I was there, roughly when I said I would be.

And I would make plans.

I loved to know what was coming down the track, who we’d be seeing and where we’d go.

And now… well, it’s a physical effort to put things in the diary. I just don’t know how all the moving parts of my family will be when the day comes around.

And the central cog is always my son.

Will Alex have slept enough – will he be in a good enough mood to be sociable?
Is the venue accessible?
Are we eating there? Is there as cafe or a restaurant? Do you reckon it’ll accommodate a wheelchair?
Will it be too noisy?
Will there be anywhere to change him?
Is it raining? If it’s raining and we’re supposed to be walking will it get muddy? Will the wheels get stuck? How to keep Alex dry? What to do with his wet things when he comes in from the dry?
How to even get the fucking wet things off?
Screw it, let’s not bother.

And so now when someone suggests something, my mind… well, it freezes.

I – me – I haven’t changed. I still love to see people, be part of a group, hear people’s news… just feel connected. I’m conscious of how much good it does me – the whole family – to get out there and do things in the real world. Not just our bubble.

But it is without doubt a monumental effort each time. And so I hate committing – pretty much right up until the last minute. I’m incredibly aware of how annoying this must be (sorry…).

And I understand that comprehending our life can be tricky because, well… how can you properly if you don’t live it? and that – ironically – just by seeing our family situation up close… people suddenly get it.
See the unpredictability.
Make allowances.

But in order to do that… I have to have been able to fit them into the diary first.
And not cancel…
And so the circle continues…
You see the conundrum.

So thank you to all of you for bearing with us and not dumping us as being a bit difficult.
For just taking my family as it is.
Not asking too many questions.
Just buying me an unnecessary glass of rose on a school night.

You need to know how much it’s appreciated.

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Mummy, you are silly, who wouldn’t want to hang out with me?