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…

 

Limbo. But not dancing.

There is a thing that’s become a major theme in our lives over the last few months. It’s a thing that leaves the nerves a little frazzled and brings with it a very unsettling combination of emotions; a deep, unshakable inertia all ajumble with an unrelenting desire to fill the time with activity and distraction. This thing is called Uncertainty. We know the direction we are heading but are not yet in receipt of the exact coordinates.

It seems fitting that the uncertainty about Orange’s condition and the uncertainty of our move to Cornwall have been running in parallel. With each we await with gritted teeth, hopeful that this fractious state of limbo will soon reach an end.

In truth, the most difficult aspect of both predicaments is that, for now, we have done everything in our power to get us to the place where we need to be. It is down to others now to help us out of the No Mans Land and onto a path where life can start, properly, wherever and however that may be.

The boring detail is that we have managed to fall in love with a house that is being sold by a warring, divorcing couple. The whole process has pretty much ground to a halt. I have made a complete and utter nuisance of myself ringing the agent to eek out whatever nugget of information I can, or glean some hope that things might be moving forward. Tomorrow, I will call him again. Karl from Stratton Creber in Torpoint, I promise not to shoot the messenger, but please would you pull your finger out and figure out what’s going on? Our hearts are dangling on a precipice here.

In some ways it is helpful having this particular little nightmare to keep the mind from wandering back to the long wait for Orange’s results. I haven’t really even thought about how it might feel if the test results are positive. I have all but assumed they won’t be. But if they are then at least that gives us something to work with. Something to say to well-meaning strangers when they ask why he is so small or why he can’t sit up rather than muttering something unconvincing about developmental delay under my breath while trying to change the subject. It closes the door on the never ending spectrum of Other Worries. Sure, it would come with its own host of new ones but like anything, once you know what you are dealing with it becomes possible to find a way of doing it.

One way or another, we are moving to Cornwall. I hope beyond hopes that it’s to the house we have fallen in love with but need to prepare myself for the fact it might not be and start to look at other options.

And, one way or another, Orange will make his way in the world and we will help him as best we can to negotiate the challenges that come his way. He may get a diagnosis in 7 weeks. Or he may not. It won’t change his physical and cognitive difficulties. But it may help us to see what lies ahead and to navigate the right path for him. And us.

For now, we are hanging in suspension. Floating about with less purpose than makes me comfortable or happy. It feels like a waste to allow the time to slip by without putting it to good use however, so we are lining up some more challenges to fill the uncomfortable void. I am taking on more work (quietly terrified but I know once I get stuck in it will be just fine) and the Husband has decided we’re both going to torture ourselves with a Paleo challenge. More about the Paleo diet another time but to whet your appetites it mostly involves eating like a caveman. Neanderthal Nosh. Flintstone Fare. Those of you who know just how much I love pizza will be chuckling loudly right now I am sure. Wish me luck.

Do you work in medicine?

It’s about the fifth time I’ve been asked that question by a medical professional. Perhaps I’ve read too many academic reports and journals, but the geneticist asked me ‘are you in medicine?’ as I rattled off (yet again) the long list of strange, worrying and wonderful things about Orange. It’s strange though, because all the parents I speak to online who have children like Orange also spend a large chunk of their life researching conditions, tests and the latest research. It’s true when they say we are the best expert when it comes to our own child.

So the upshot of today’s genetics appointment is that Orange is being put forward to join the Deciphering Developmental Disorders study. This is a study involving experts in clinical, molecular and statistical genetics, as well as ethics and social science. They are aiming to collect DNA from 12,000 undiagnosed children with developmental disorders in the UK, and their parents, and will use the very latest array and sequencing techniques to try to reach diagnoses for the participants. It will take about two years to complete.

In the meantime, Orange’s geneticist will discuss his case with the team of geneticists who she works with and decide between them what specific tests they want to do of their own accord. She seemed to think we are looking for something that affects a single gene (yes, needle, haystack…) but was very positive that his development has, thus far, continued on an upward trajectory, albeit at his own pace.

Orange’s sister was an absolute doll through the whole, very lengthy, appointment. It’s hard for a three year old to be patient at the best of times, let alone in a roasting hot hospital with a bunch of grown ups talking gobbledegook. She did me proud today.

And the other bit of, rather good, news is that the geneticist says she has an excellent colleague in Cornwall who she will put us in touch with when we move, so Orange’s genetics care is sorted. Another piece of the puzzle for our new life has just clicked into place.


The Orange Revolution

Before Orange I never used to quite get it when some parents of children with special needs spoke in awe of how their lives had been changed for the better by their precious gift of a child. I wondered if it was a coping strategy or whether they were just completely in denial. Surely their lives couldn’t be better now with all the challenges that go with having a child with disabilities?

Now I think I understand a little better. Having Orange has forced us to re-evaluate every inch of our lives. We quickly realised that our high-stress, high-income, high-spending London life just wasn’t going to work anymore. We questioned the purpose of living a life of working and spending, working and spending… And Orange needing my full time care for therapies and hospital appointments meant I couldn’t return as planned to my well-paid freelance career. He forced our hand. London life was no longer sustainable. So we sold up and went, just like that.

But life is too precious to spend festering away in the suburbs. Orange has made us think deeply about all that is good in life. For us this is nature, sea, outdoors, big skies and the sound of the waves. We saw the way our previously inert little boy just came alive when we took him to Cornwall for the first time.

And so Cornwall it is. Not just for the four of us but also my mum and 93 year old grandma. Life will be infinitely happier and healthier there for all of us.

If it wasn’t for Orange, Cornwall would still be a distant pipedream unlikely to ever be pursued.

Having Orange in our lives enables us to think with greater clarity, feel what needs to be felt, say what needs to be said and do what needs to be done. Life is richer, more exciting and being his parent is awe inspiring really. He has no idea what he’s started, but it’s pretty big.