Sunday, 31 December 2017

Looking back at 2017

Sensible to look back and take stock before looking forward I guess, so here goes.

We lost Meg in November, and I still keep expecting her to jump up on to my lap and yowl for me to scratch her chin.  It was the first time we had been faced with making the decision about having a pet put to sleep, but as much as it hurts to think of her, I'm comfortable that we made the best choice at the right time.

Smiler has had a good year - no protracted hospital stays; and as the orthopaedic surgeon who operated on his hips back in 2009 retired this year, he's switching back to Bristol so that means two fewer day trips to Southampton each year from now on.  We know now that he won't be needing the daily growth hormone injections that were a real possibility this time last year, and he's so much more stable due to some medication changes and a great deal of hard work on his part.  School is going well, and while the EHCP process is a complete joke and Smiler has unfortunately been caught up in Bristol's poorly organised implementation, I'm assured things are changing.

The house is continuing to evolve - while the adaptations were completed last year, anyone who has made the kind of changes we did knows that it takes longer than that for everything to be finished off completely!  My glass house has progressed - it now has a window and door, as well as a floor!  The porch, hallways and stairs are the outliers - mainly because we've been trying to work out how to deal with the textured wallpaper!

Noah and Petal are growing up - I don't tend to mention them much on here now as they've reached an age where I don't feel it's appropriate for me to share things on their behalf.  They're incredible and (at times) frustrating young people, and I'm very very proud of them both.  Teenage years are not easy - for teens or their parents - and I believe they are handling them with grace.

Mr and I are still going strong - it was our sixteenth wedding anniversary this summer,  and I'm more in love with him now than I've ever been.  We've shared plenty of laughter this year, and I trust him more than I could have believed I would trust anyone.  Twenty years ago I would have literally laughed in your face if you told me I was going to have this, and I would simply not have been able to comprehend what you meant if you told me I'd believe I deserved it, but I know that I do. 

So that's it - 2017 is almost over, and 2018 is just around the corner.  Happy new year to you all, and I hope looking back over your own year gives you a sense of satisfaction, and a tingle of excitement for the twelve months to come.

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Friday, 1 December 2017

Festival of Lights at Longleat

Some years we go to Clearwell Caves, some years Westonbirt, but this year our family christmassy lights trip was to Longleat.  It might be best known for the safari, but every year Longleat build a lantern trail around a specific theme, and create huge illuminated sculptures to surround the paths.

This year the theme was Hans Christian Andersen's fairy tales, with each scene linking on to the next by using woodland creatures and vast trees.  Each scene had a panel which told you the name of the fairy tale and shared a quote from the text which was brought to life by the sculptures - handy, as my fairy tale knowledge is rusty and probably more Disney and Once Upon A Time based than I'd technically like it to be...

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.