Monday, 20 November 2017

Goodbye Meg

Even though I can see you right now, laying in your basket, I miss you already.  You've been laid there for over a week now, showing no interest in what the dogs (or kids) are up to, which is such a change from your usual getting-in-the-middle-of-everything behaviour.  You won't even get out of that basket for food, and you are usually louder and more persistent than the dogs (or kids!) are when you believe it to be a mealtime.  I miss our chats, where you yowl at me and I answer back, only to be met with some more talking from you demanding answers - but I don't think you've spoken to me since you took to your basket.  We were hoping you were just a bit under the weather, and would perk up once you'd had a few days to rest and some highly prized tinned food.  But you aren't interested in the food.  Even when we bring it to you in your basket, you won't eat.  So earlier today we took you to the vet, who stroked you so gently as she examined you, murmuring to you how beautiful you are, then told us your heart has had enough, and that the kindest thing would be to put you to sleep.  It feels like a betrayal, looking at your sweet face, knowing that in a few hours you'll be gone.  I'm sorry, for every time I grumbled at you desperately crying to go outside, and every time you were outside desperately crying to come back in (usually 90 seconds after I'd let you out).  I'm sorry for every time I pushed you off of the book I was reading when clearly you were being completely reasonable, and just wanted a chin scratch (that is my job after all).  I'm sorry for every time I laughed, watching you and the dogs chasing one another in circles around the house like a cartoon (even though you definitely did your fair share of the chasing).  I'm sorry that I can't make this better, that I can't fix you and make everything okay.  All I can promise is that we won't forget you, and that you won't be alone.  Look at me, and I'll look at you, and tell you how brave you are, and how much we'll miss you.  Look at me, and I'll tell you how much you are loved.

Goodbye Meg


Thursday, 16 November 2017

An Ordinary Journey

For the past twelve months or so, Mr and I have been struggling with Smiler.  Not with his behaviour exactly, but with the level of support that he needs pretty much around the clock, and the never being able to switch off.  It's difficult to explain to anyone who hasn't been there, it's hard for them to understand just how draining the constant watchfulness, the always-on-edge-ness really is, combined with the physical demands of caring for him; the never-ending paperwork and appointments and admin involved; and the other world that you mentally move into when something actually does happen that means you need to be able to list the names, strengths and dosages of all the meds, as well as consultants, and details of every relevant aspect of his condition.  Knowing that at any moment he might have a fall or a fit or a bleed or a dislocation - even when he's at school we know that we might have to drop everything to meet his ambulance as it pulls into the Children's Hospital.  And when he is with us, we have to keep an ear out for him every second that he's not in sight, because this young man can go from completely fine to really, really not fine in seconds.  But as well as the psychological strain of this, it's the sheer physicality of being his parent - of dressing him, and feeding him, and doing up his seatbelt.  Brushing his teeth, and putting on his splints and shoes, and walking alongside him so he can hold on to your arm.  So many of the things that we do for him are tiny tasks in and of themselves - getting him a drink, putting on his deodorant, reading him a story, but when you add them all up it's exhausting, and there's no let up.  I believe that there's an ordinary route that you follow as a parent with your child, and though every child and every parent is different, and of course this influences their journey to a certain extent, they still walk the same general path.

As a parent, you start off with a baby that you do everything for.  You dress them, you feed them, you burp them - you spend every minute picking them up and putting them down, singing silly songs, reading about how to encourage language development and worrying about every temperature and rash and cough.

After a year or so, your baby is becoming a toddler, and now you reach out your arms as they stumble towards you, clapping as they use those chubby fingers to put the wooden square into the space on the board where it belongs, smiling as they babble at you, giggling when you realise they're trying their hardest to make the animal noises as you sing Old MacDonald at play group one day.

A year later they have all the lyrics of Old MacDonald down pat, as well as those of Row Row Row Your Boat, Incy Wincy Spider, and probably some completely inappropriate song like Blurred Lines or Uptown Funk that is played on the radio a hundred times a day.  And that other sound you hear a hundred times every day?  That is that little child of yours asking you why.

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. 

Monday, 20 February 2017

Smiler and the Very Specific Spectacles {part 2}

Smiler needed new glasses, but there's this.  Technically he needed new glasses five months ago, after an eye test showed his vision had changed a bit, but ... well, just but.  Or maybe because.

Partly because there's been a lot going on, but mainly because it's always such an ordeal for Smiler, being fiddled with and people having their hands around his head (which he hates with a passion) and puts him in a horrible mood for the rest of the day.  We are reminded all over again how difficult his are, how non-standard, how awkward it is to get frames which work for him.  And I'm in a horrible mood for the rest of the day too, because it's hard work maneuvering his wheelchair around an added-on bit of supermarket, and he's stressed and therefore distressed, and I feel massively guilty because I haven't challenged every assumption that was made about his understanding and his needs.

Complete aside to getting glasses:
You have to pick your battles when you're parenting a young person like Smiler, and you have to accept that you can't make everyone see the incredible smile and the great sense of humour and the twinkle of mostly harmless mischief in those eyes - some people will only ever notice the wheelchair and the jerky movements and the noises.  But every time someone looks at him with pity, it hurts.  Swift and silent and sharp, like a dagger through the ribs, it hurts as I see him dismissed and overlooked, but so often there's nothing I can do.  I can't make people see what I see.  But even recognising that hurts too - a duller pain, a tired ache that clouds my joy in him.  An endless source of parental guilt, feeling I should do more, why didn't I say this or that, why didn't I grab them and force them to acknowledge all the good stuff - all the marvelous jokes he's made, the hugs he's given, the awfulness he's had to deal with and has overcome, and with such grace...but they don't see that - they can't.  And I can't make them.

Back to the glasses. 
So we - I - had put it off.  But when his glasses were sat on (actually properly sat on.  By Smiler.  Don't ask me how - I have no clue) we had no choice.  It was time - it couldn't be put off any longer.  But really, how bad could it possibly be?

We visited Turners Opticians in Fishponds, and it turned out not to be bad at all - not at all!  A lovely lady directed us to her more experienced colleague, but sorted out some admin for us and chatted while we waited for a couple of minutes.  Lovely gentleman listened to the things we needed him to know about this, showed us a couple of pairs that might work -ish, then found some that ticked all the boxes - This has never happened I wanted to shout at him, but I thought that might make me look a bit peculiar.  We've never found a pair that weren't some sort of compromise before, in over ten years of glasses wearing.  He casually chatted to Smiler as he took the measurements he needed (involving nifty little rulers and things), and commented that he would switch out the stiff plastic nose pad bits with softer squishier plastic nose pad bits (there's a chance that might not be the technical term) so they would be more comfortable for Smiler to wear for long periods.  I should point out that by this time I was a tiny bit in love with the man,  A moment later I was certain I'd misheard when he said they should be ready to collect on Tuesday - we're used to that car mechanic type slow inhale and exhale followed by "well, it'll be three weeks I expect, since they're bifocals" - three days (two if you don't count Sunday) seemed ludicrous.  Lovely Man offered Smiler a high five, and we were done.

I did think afterwards that it all seemed a bit too good to be true - maybe my love had deafened me instead of blinding me, and he had meant three Tuesdays time?  Or that they would cost a mere one hundred of your finest English pounds?  Or that they would for Smiler perfectly if only he had that teeny bit of plastic surgery and moved his face two inches further around on his head?

Saturday, 11 February 2017

Smiler and the Very Specific Spectacles

Smiler has worn glasses for many years, and it's always a struggle.  Not in him keeping them on - when he first got them he didn't have the coordination to use his hands to take them off, and once he did I think he was used to them.  Or maybe the various strapping-the-glasses-to-his-head methods that we used actually did work.  But to be fair, those tactics weren't about trying to persuade Smiler that he wanted them on, but more about convincing this miracle of engineering that it actually belonged on his face.

As with pretty much everything when your child has the kind of needs Smiler has, it's all much more complicated than you'd think.  First, there's the eye test itself - Smiler can't tell you the letters on the line one up from the bottom, or if the circle looks darker on the red or the green, or if those letters are clearer with number one, or number two.  We're very lucky in that Smiler qualifies for the specialist team, who either see him (no pun intended) at school or else give us an appointment for the eye hospital.  Of course, once he's 18 he'll no longer be eligible for them, and will have to see an 'ordinary' optician - a prospect that made me feel like my stomach had been replaced by a swirling hole of nothingness when I first found out.  His vision isn't terrible, but his weirdly shaped eyeballs combined with weak eye muscles, epicanthal folds, sensitivity to people's hands being anywhere near his head, and intellectual challenges mean that getting an accurate assessment of his vision is never going to be straightforward.

Then the next step is getting new glasses.

Glasses - it's all about the eyes, right?

Unfortunately not.  A pair of glasses also needs to take into account your ears, nose and the shape of your head.  How bad can it possibly be? I rather optimistically thought to myself when Smiler first needed glasses.  Of course the answer was that it could be very very bad.

Now, I love this boy, really I do, but he has a weird head.  His neurologist once commented that Smiler has "a head that is not, by and large, head shaped; with a face that is not in the place you'd expect his face to be, by looking at his head".  Thinking back, the list of dysmorphic features that clinical staff wrote out when he was born included reference to the size and shape of his head; lack of symmetry of size, shape, location and orientation of his ears; size, shape and positioning of his eyes; and his lack of nasal bridge structure, so maybe I was more naive in those early days than I realise, if I didn't realise immediately just how tricky finding glasses was going to be!

Say you start off with a hundred pairs of frames...

The frames need to be made of metal in order to be able to make all the necessary unique adjustments to try and fit them to Smiler's head, so when you take off those not made of metal, you're left with 65.

Smiler needs bifocals, and so that there is a reasonable amount of glass of each prescription, the lens needs to be pretty large.  Not ridiculously massive, but on the big side.  That takes the 65 pairs down to 18.

As Smiler is under 16, he gets free glasses, to the value of the NHS voucher.  As his glasses need to be regularly fixed and replaced, we don't have the money to pay extra every time, so if we're only looking at NHS voucher priced ones.  That knocks off three quarters, leaving four.

The arms of the glasses need to curve far enough round his ears to have at least a bit of a chance of staying on, which takes the four down to two.

These glasses will be on and off of Smiler's face regularly through the day, so are going to have to cope with being squished by his safety helmet, licked by the dogs while they're licking his face, pulled off not-especially-gently, put back on not-especially-gently, and cleaned fairly regularly (how he gets bogies and gravy and glitter and finger paint on both sides of both lenses on a daily basis is completely beyond me).  They need to be strong enough the handle the handling - which rules out another one of the two.

This means we have a winner, ladies and gentlemen - one pair of frames to rule them all, and if they're luminous yellow or decorated with peacock feathers and look like a pair that Dame Edna discarded for being a bit much, they will still have to be Smiler's glasses.  What they look like is irrelevant, if they will keep the little bits of glass approximately in front of his eyes without driving him (or us) up the wall.

Course, once the frames have been picked out it takes another week or two for them to be made up, then we have to take him in to have them fitted.  Since having a difficult experience at a nearby independent opticians we had always chosen to go to a supermarket, knowing that parking and access are straightforward, even though it seemed sometimes that the people qualified to sign off on glasses for a person under 16 worked only within school hours, or only on Wednesdays during the first half of the year, or only between 10:17 and 11:41 on odd numbered days in months with the letter A in the name.  Anyway, although Smiler had a sight test at the eye hospital in August, I had (oh, the parental guilt) put off getting new glasses as his prescription hadn't changed much and there were always too many other things to do that were more important.  Up until his glasses came home last week twisted out of all recognition - they were kind of folded in half and then wrapped around on themselves, and I'm really still not sure quite how he managed it.  So there was no choice - it was time to go glasses hunting again.  Oh joy.  Rather than go to the supermarket (which is a different one now that we've moved) which were a nightmare with Noah's last month, we opted for a local independent opticians which had been mentioned way way back in August.  How bad could it possibly be, right?

This bad, is the answer, using the 1990's definition of bad, which meant good.
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