Thursday, 5 October 2017

In which I grumble, and I don't.

Sometimes, it is all just too much. But rather than try and explain the absence, I'm going to just get on with it.  Unlike me, I know, but I'm trying to turn over a new leaf.  You know, more of the live and let live,  less of the grumbling.  Except I'm going to start by grumbling.  Well, kind of.  Bear with me.

We're lucky to be able to run two vehicles, but a couple of people have commented that they don't match.  Not match as in complementary colours, but match as in they don't seem like two vehicles that would be owned by the same family.  

The usual transportation is TheCar.  Electric car, boot big enough for the wheelchair, and great for sneaking up on people in when you're in a supermarket car park (seriously - people pushing trolleys laden with groceries rarely look over their shoulders before they veer gently off the pavement > over the road > towards their car - after all, they'd HEAR if there was anything coming, wouldn't they?  No.  Not necessarily).  So, electric car combined with the solar panels on the roof mean we get to feel righteous about the lack of fumes while keeping track of all the free-to-use 3 pin chargers in the city (which are disappearing every month, so we need to buy a lead - can you imagine?  Having to buy a new charger wire for your car 😯?)

There's TheVan, a pretty old, diesel powered thing, which fits all of us in (including the dogs, the wheelchair and shopping when necessary).  But it's a bugger to park, noisy to ride in, and hard work to lift Smiler in to.  He's 16 now, same height as me, and weighs about 65kg (10 stone plus a bit in old money), and lifting him in to TheVan is ... well, it isn't as easy as it was a few years ago, put it that way.
Nothing to do with TheCar or TheVan - this is Meg, our aging kitty cat

The theory behind needing the van isn't, as some may assume, to do with going on holiday (because we haven't done that in ...erm... roughly nine years.  It isn't even mainly about the distance that TheCar limits us to (though that could be interesting when it came to Smiler's six monthly hip checks at Southampton).  It's about it being a van.  A van which, if/as/when it becomes necessary, we could adapt to being able to push Smiler into via ramp or lift, if/as/when he is no longer able to walk.  You can see I'm covering all the bases there - that's because every couple of years there's a new health crisis that makes it appear that that is where we're heading.  In the very early days we were told he wouldn't walk, he wouldn't be capable of learning how.  Then came the seizures that lasted for hours, and meant he was constantly exhausted.  Then the almost organ failure.  Then he started taking steps - with the support of a walking frame and people moving his feet.   Then, by chance, we found out neither of his hips had any socket, and we were faced with him needing a stretcher bed as he wouldn't be able to sit, unless he had major surgery and it all went far better than everyone dared hope that it would.  After the surgery, rehab was a nightmare, and recovery took a long long time.  Then seizures again.  Then Smiler's physical skills began to decline, and no one knew why.  He could hardly walk, then couldn't walk, then couldn't stand.  Then more meds.  Which is why it still feels like tempting fate to believe he won't be a full time wheelchair user in years to come.  I need to be really clear here - I don't consider him being a full time wheelchair user to be the end of the world - I've known to many other young people and their families facing far worse to ever think that.   But it would be a change.  Right now, *whispers*  we don't even have a hoist in the house.  Because he's on his feet,  and so much more stable than two years ago, when he started to decline.  But we never know what is around the corner.  Which is why we still own our horribly polluting diesel TheVan.  Because getting rid of it would feel like tempting fate, like we were proclaiming "hey, look, we don't need a van, he can transfer, he can weightbear, he can walk.  No van here, just a car, like an ordinary family".

But back to TheVan and TheCar.