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.

 

Rock pool therapy

Clammy wet sand underfoot, blustery salty air, the roar of the ocean and a warm blanket of sunlight seeping through the early morning sea mist. Hallmarks of a North Cornish beach in Spring. Comforting and invigorating, the seaside is a wonderful tonic. All senses sated, most of us come away from a day at the beach feeling calmer, happier, centred. 

For Orange, a North Cornish beach is about as close to perfect sensory therapy as it gets. Mashing a handful of wet sand granules between his little fingers, the constant roll and rumble of the waves on the shoreline ringing in his ears, the visual spectacle of marbled rock formations and steep, dark cliffs all around. He was particularly taken with this little rock pool. We splished and splashed in the warm sea water for at least half an hour. For a boy who cannot bear the feeling of anything at all on his feet, his willingness to let his little toes dangle in the water and dig into the wet sand was a sight to behold.

Calm and happy, it was wonderful to see him so at ease with himself. Orange often struggles to identify with where bits of his body are in space. This is a very hard concept to understand if you don’t suffer from it yourself, but that grounded feeling we get from gravity just isn’t the same for Orange. He feels unsteady, unsure of where his limbs are in relation to the rest of himself. But on the beach that day, toes squirming about in the salt water, bottom firmly planted on a rock, he felt steadier, with a stillness and confidence I haven’t seen anywhere else.

There isn’t much documented about the power of ‘beach therapy’ but given that it feels so darn good to be on one, I’m going to spend as much time as I can with the kids doing just what you see us doing here in this photos. Sitting, splashing, singing, squelching, sunbathing.

Generations of my family have played on this particular beach as young children. As fate would have it, it is one of the few beaches in the South West that you can actually just drive straight onto, park on the sand and walk across miles of flat, firm sand. Unlike many places, this beach will be accessible to Orange his whole life, whether he is in a buggy, walking frame or a wheelchair, I will be able to bring him here as often as we like. This is one of Orange’s therapies that we can all benefit from. It often feels like very hard work indeed, helping Orange with his daily needs, but this? I feel lucky to have an excuse to make ‘beach therapy’ a regular part of our lives. The Beep is pretty happy about it too…

 

Food unglorious food

Don’t get me wrong, Orange loves a good meal. Just like his parents 😉 But I often get asked by The Professionals how his feeding is going. And I don’t really know what to say.

When we first started weaning Orange, he enjoyed chewing on a banana and was very happy being spoonfed all manner of mashed vegetables, fruit (and quite a few Ella’s Kitchen pouches when I just couldn’t be bothered).

But it was always different feeding Orange than it had been with The Beep. It still is. He likes to hold a spoon while I feed him and, if I load it for him, he will usually get it somewhere in the direction of his mouth. But he’s very far indeed from feeding himself. He should be doing this by now but he’s just not bothered.

Finger food? Well. That might as well just not be there as far as he’s concerned. His little hand might, on a good day, reach out for something I’m holding, but it’s usually soon lost and forgotten, squashed and warm in the depths of his high chair.

I feel under huge pressure to get Orange feeding himself. Every mealtime my heart sinks as he just sits there like a baby bird opening and closing his mouth, waiting for me to spoon in pasta or casserole. Or not, as the case may be. He’s been rather difficult recently as his tastes have started to develop. I need to up my game on the cooking front. He’s a discerning diner, is Orange.

It’s extra hard, given he can still barely sit in a high chair and he struggles to chew and swallow. If I rush him even just a little too much, he chokes and vomits.

I know I should feel grateful, at this point, that he doesn’t need to be tube fed. There is always that possibility in his future. But instead I spend most mealtimes wishing he’s just participate a little bit more, or that I could hand him a piece of toast and he’d plough on in. It’s heartbreaking to watch him just dropping bits of food down next to him and, seemingly, not caring. The less he responds to finger food, the less opportunity I give him to get the hang of it. I just can’t bear watching him fail. Again.

I have a new plan, which is to offer him some finger food with one of his meals per day, for the next two weeks, without fail, and just to not care what he does with it. It is 12.05. Caribbean Chicken then Orange, followed by, er, corn snacks. Gotta start somewhere…

So we made an offer…

Friday was an interesting day indeed. To Cornwall and back in one day, a total of 10 hours driving with an Orange in the back. Eating, drinking and napping on the run. He was so good. Not even a hint of grizzle until we were an hour away from home on our return journey. Eating dinner propped up in his car seat in a rank Little Chef on the A303 was a particular lowlight. But he took it all in his stride.

It was worth the effort. House number one that we saw was absolute heaven. We offered, it was accepted, all on the drive home.

Oh how I so desperately hope that this all goes to plan. Orange needs to be in Cornwall. We need to be in Cornwall. Everything crossed please…

Orange turns one and Cornwall is one step closer

We have just returned from a week’s househunting in Cornwall. It was pretty intense. We saw a lot of houses and rode a bit of an emotional rollercoaster as we could see our dream within touching distance but still a long journey away. We have two more houses to see at the end of this week (cue an emergency trip there and back in a day, which I am dreading) and then I think we will make an offer on something. I don’t want to jinx it all by talking about it too much. So watch this space.

Orange had his first birthday while we were down there. It was a lovely day, mostly enjoyed by his sister who opened all his presents and ate all his cake. Orange was none the wiser but has done some absolutely brilliant play with two of the toys he got. One is a brightly coloured stacking ring set, which he got stuck in with straight away, taking each ring off the stack individually and waving them about, with no coaching from mummy . He also got a percussion play mat thing which he has been doing tummy time on to strengthen his arms. He has started actually pushing weight through his hands. This is nothing short of a miracle. Honestly, the tiniest things for him are huge.

And… I have come across the most wonderful guide written by Cornwall County Council for families of disabled children. It has absolutely every piece of information I could ever need for sorting out Orange’s community care, therapies and future schooling. I am now totally confident in making things work for him when we move west. It can’t come soon enough. When it all gets too much, this is where I will go…