And so we are here now

When I first started this blog, I was sitting in a small cottage on the cliff top above St Ives. Eight weeks previous Mr Mavis and I had sat, wine-fuelled, in our living room in south London and faced up to the inconvenient truth that since we now had an Orange, life had suddenly become a great unknown, that financially we were sinking fast and I had no idea if or when I could return to work. Our dream of moving our family to Cornwall was becoming more and more urgent, but we had no idea how or if we could do it. The only thing we did know is that we couldn’t stay in London.

Sitting in St Ives, the previous eight weeks had been a roller-coaster of emergency bathroom renovation, crumbling walls and dehumidifiers, actually painting over cracks (yes, I did this, sorry),  somehow selling our little house in the midst of the London riots and, for the first time, being told by a medical professional that there were ‘serious concerns’ about Orange followed by a whirlwind of tests but no answers. We were preparing to move to Surrey for a bit, as a stop gap, to gather our thoughts on how quickly we could move to Cornwall (a year, ten years?) given all the challenges involved with Orange’s health needs, work, finances and what then seemed like insurmountable commitments and difficulties.

It was a confusing, jumbled time of our lives, but through it we were able to gather a momentous window of clarity about where to take our lives. Driving back from St Ives that September, I remember saying to Mr Mavis ‘wouldn’t it be cool if next September when we holiday in St Ives, we didn’t actually have to drive back to the South East’. As if we could somehow swing it that within the space of a year we’d find a new house and be picking up the keys on the way back from holiday. Having dealt with all of the above.

Of course it didn’t quite work out like that, but we were only about a month off my fantasy schedule. After a year of hard work figuring out how to make the basics work for Orange down here (How good are the hospitals? Can we get Portage? Are there enough physios? What are the special schools like? Are there even any?), two failed attempts at buying houses from warring divorcees, and a gargantuan heap of family politicking that I really didn’t need while contemplating whether or not my youngest might or might not live to see his second birthday, I am sitting now in my new living room, about fifty yards from this…And it is totally amazing.

In true Orange style, he knew just how to make our move that bit more complicated by starting to have seizures on the day I was supposed to be heading down to pick up the keys. Not just any old seizures. Even an EEG during which he had a seizure, and one of England’s top neurologists couldn’t tell us what they are. All we know is that he stops breathing, goes a terrifying shade of blue and we never know whether he will come out of it himself or whether he will need resuscitation.
Four days in the High Dependency Unit when, at a number of times, we didn’t know if Orange would ever make it out of the hospital, and being let out only after having CPR training and a thorough briefing on what to do when he stops breathing, left us emotionally ragged, exhausted and completely unprepared for the move  (and you know how I like to be organised, right? Well, we really, really weren’t!) At this point I have to make a very loud shout out to Moss of Cornwall removers, the amazing cat courier for transporting our four furry babies, my mum for coordinating EVERYTHING down this end and Mr Mavis’s mum and dad for keeping us sane and fed during the whole operation. Without this brilliant, unflappable team around us I’m not sure we would have made it.
But the day came, the house was packed up, we ran round like headless chickens for a day getting the old rental place straight and then set off, weary but bursting with expectant excitement, with a fully laden Land Rover, away from our (frankly miserable and lonely but thankfully short lived) temporary existence in Surrey.
Honestly, I cannot fathom why that part of Surrey is such an inhospitable place but we were utterly depressed by it. The competitiveness. The aggression. The desire to acquire at all cost and then to show off about it. The maniacal bravado doing a slapdash cover up job of lives plagued by a lack of any real joy or fulfilment. False happiness fuelled by consumption. The casting aside of those who are less capable or who don’t fit a certain mould of behaviour. Most of all, the systematic exclusion of those with additional needs, be that a disabled child or an elderly person in need of care. Not an existence I can countenance, at least. Perhaps I took it all too seriously but I cannot tell you what a relief it is to be here in Cornwall.
Our journey down was eventful. Driving through the night with Mr Mavis in the back keeping a hand and an eye on Orange in case of seizures, little Beep riding up front with me under a blanket, wide eyed and brave in the face of a HUGE electric storm and driving rain so thick and fast we were down to 20mph a number of times, winding our way down a moonlit and slightly spooky A303. We arrived at my mum’s late at night, full of adrenalin from the day and the drive, and settled in for a much needed glass of wine and a good sleep before heading on over to our village to move into our new seaside home.
We have had the warmest of welcomes in our lovely new village. I’m not sure we’ve socialised this much since before we had children. Strikingly, I have encountered a gentle positivity about Orange. Within our first week, our new GP had told us the story of a lovely undiagnosed lad he knows who is sixteen now and doing just brilliantly, who has amazingly similar features to Orange, I met a young mum who lives in the village who has a little girl with Mosaic Down Syndrome who was like a breath of fresh air and has also kindly lent us a fabulous Makaton signing book for us to use with Orange, the pre-school and primary school have been nothing but warm and positive about having Orange join them at some point and applying for funding on his behalf and, perhaps most miraculously of all, every referral we needed to transfer for Orange is coming through without a hitch with information being provided whenever and wherever we need it from the authorities.
The contrast with our experience in Surrey is quite overwhelming. It’s not just that the services seem to be better organised and more accessible here, it’s the attitude. For the first time in the history of Orange, I feel supported in my role caring for him. And whenever I have a panicky moment, the calming influence of the sea is but a stone’s throw from my door. We have been to parties, hung out with our neighbours and, just last night, had the most fabulous dinner with new friends with unbelievably good food, free flowing wine, and some very entertaining stories about cat burglars, heated shell suits and a dish full of car keys (not what you think!) which are totally unsuitable for this blog. We are having a brilliant time.
I know there will be tough times ahead but, perhaps for the first time in my life, I feel like I’m in the right place and with the right people. Never have the two crossed paths before. And it feels like Home.

 

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  1. Lauren 25/01/2013 / 4:30 pm

    We are delighted to let you know that this post has been nominated in the 'Most Inspirational' post category of the SWAN UK Blog Post Awards (aka The 'SWANS')

    Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

    If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

    Good luck!

    http://www.undiagnosed.org.uk

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