Moments…

The day is full of sunshine. It is warm.

Our car is full. Full mainly with Alex’s stuff… huge bed… wheelchair… 3 wheeler… seat to strap him into when we go out… and in among that is crammed everything else. Again the annual ‘really need a new car’ conversation.

We navigate driving on the wrong side of the road.

A favourite song comes on and we have our perfect soundtrack. And I think Ooh, is this a Moment? And it is.

Briefly.

Then Alex starts to cry… he is tired. And probably bored. We are all tired and bored but he is always the one who makes himself known. Emma – because she is a beautiful person – starts to read him a story. He stops briefly then, realising he’s been had, that the car is not stopping any time soon, starts up again.

Our summer holiday.

Moments…

The days are incredibly hot – 35 degrees hot, too hot for our English sensibility, and so we adopt the siesta. Well, 3 of us do, Emma just stays up watching TV as the rest of us doze but, as a result…

We are able to go out – as a family – and eat dinner. Eating at 8, 9 o’clock at home is unthinkable but here… it is normal. Alex, having slept, is energized. We giggle with the headiness of it.

Drink wine.

There is a swimming pool, and another pool and another – both inside and out. There is a whirlpool connecting the two. We find Alex a life jacket, look at each other nervously and… our family is pulled along… Alex, ever the water baby, just squeals, splashes delightedly.

There is a smaller pool where the wave machine makes the water lap at the edge. It’s shallow enough to sit down. Alex sits there, determinedly splashing. Emma, ever practical, dons goggles, splashes him back. An exclusion zone is – effectively – established… But Alex is older now, and I think it’s clearer that he’s not like the other kids so… the adults smile, they don’t mind and the children, they get it, and just work around him.

On sight seeing visits we come across accessibility everywhere we go… an old abbey has specially installed ramps that means there’s almost nowhere we can’t go… a chateau has a special avoid-the-steps disabled access door, complete with it’s own pull bell… In many restaurants waiters move chairs without being asked so Alex in his wheelchair comes up to the table… we are truly different, yet the same, and so we can all join in… do the same thing together. We are a family.

My constant fear is that this is the last year our holidays together will work… and so we take a trip via Euro Disney. I cannot say enough good things. We all loved it. There were enough scary rides for Emma, enough gentle rides for me and enough noise, lights, people for Alex that everyone, everyone enjoyed it.

And we met Spiderman.

There were not so good moments too, just so you know…

We take Alex on It’s a Smalls World – it’s a wheelchair accessible boat journey, what can go wrong? Alex – with his previously mentioned love of water – Has to Feel the Water. Longest 10 minutes of my life preventing him from getting out of the boat. Never again. After that, no more rides for him. Spectator only.

We are in a restaurant and the table we’ve been offered will not work for us, for Alex. It is tucked away in a corner, it is right up against a couple having a nice meal for two… Can we please have another table? This causes consternation, it will ruin their tables per waiter rota and as we stand there awkwardly waiting, waiting for the manager to come and be the voice of reason (and she is), Emma – who is in desperate need of food – bursts into tears, wants to know why we can’t just have One Normal Meal. She is right, we agree, and we talk about it. We know it’s difficult sometimes, but if we don’t try these things, we’ll never leave the house.

Another night, Alex and his Dad go home early and Emma and I… we have pudding… just the two of us. Quiet as you please.

This was a proper family holiday. Maybe because Alex is more mobile… he’s able to be much more a part of it… less passive… and whilst that can be… challenging… having to be properly thinking about the needs of both our children… well, that was good.

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Mummy, can we go back, I liked it there – there were croissants…

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?