I realised this evening that, where this blog is concerned, I've been suffering from what is often gloomily referred to as 'writer's block'. Not for want of things to say but, I think, because so much has been happening in Orange's world that I haven't been able to mentally process it yet, let alone find something interesting or useful to say about it. I am pretty sure this is why I have shied away from the personal of late and bored you all to tears with such lacklustre prose about Rare Disease Day and NHS Change Day.
In truth, I suspect I've been having what a fellow blogging friend has recently referred to as an 'eclipse'. (Have a read of her post, it's very illuminating). In fact, I've probably had a whole series of eclipses (eclipsii?) in quick succession, with very little breathing room in between, but just enough for me to not really register that they've been happening.
When we first moved, back in October, we had a blissful few weeks where Orange had absolutely no appointments at all. Nothing. We had left behind the fear and terror of his first seizures, and really thinking he was going to die and not make it to Cornwall, in a house we no longer had to live in and a town we will never return to, and replaced it with the calming influence of the sea and hopeful anticipation of a new life. We had escaped all manner of misery and were riding high with the excitement of our dream finally becoming a reality. We were busy unpacking, settling in, making friends, socialising, madly planning which beach to visit each weekend, and cramming in as much as we could before Christmas. A bit of an extended holiday if you like, releasing the pressure valve of the past year and just being.
Since the New Year, a whirlwind of Orange Admin has screeched into full focus. We have been buffeted along between housing adaptation assessments, genetics appointments, 24 hour EEGs, blood tests, physio appointments, orthotics, occupational therapy, speech and language therapy, equipment assessments, the arrival of the scariest, mechanical looking beast of a chair, the standing frame, developmental assessments, kidney scans, Direct Payments assessments (for respite), Blue Badge applications, fundraising planning and various stilted conversations with The Professionals about Orange's lack of diagnosis or prognosis.
The workload has been heavy. The conversations have been tiring and repetitive. The travelling and waiting room hours have left the remainder of time feeling a little meagre and frantic. The dawning realisation about the sheer amount of money it is going to take to provide Orange with everything he needs in this next stage of his life is earth shattering. The resulting reports, referrals and forms that need reading, understanding, filling-in, filing and assembling have brought on a special kind of brain fug that only a SWAN mum will understand. The amount of support we are getting is mind boggling. It's wonderful but also tinged by the sad realisation that it certainly wouldn't be offered if there was any doubt that we actually really need it.
In the middle of all of that Orange turned two which was a bit of a mega-milestone, emotionally. The line between baby and child has been firmly crossed and with it I've had to make a huge mental leap from 'mother of a baby who needs help to learn stuff' to 'mother of a child who can't walk or talk'. I'm holding on to a positive outlook about what this means for our lives because there is simply no point in doing otherwise, but in truth I know the intensity of the last couple of months has scratched away at the happy, shiny surface and planted beneath it some seeds of doubt which is why I haven't been able to write with much warmth or cheerful observation about Orange of late. It's funny, because the cheerful observations have been very much there, every day, but for some reason I've found it harder to share them.
My energy has been depleted and I lost a little bit of hope, I suppose. I've been forced to really look ahead at what the future with Orange might actually be like, and to plan for what might be significant challenges. Basic things like getting him in and out of the house. Getting to the car. Bathing him.
But somehow, the hope has to come bouncing back because without it there is no way I can find the energy each day to get on with trying to help Orange learn and achieve. If I let myself believe that Orange won't ever be able to do anything, what would be the point in trying to help him?
The good thing about eclipses is that they pass. Thankfully the sun is back in full view and all pistons are firing again.
In response, Orange is doing his level best to act out like a typical two year old. He has developed a new blackboard+fingernails quality whinge, is snatching iPhones left, right and centre and creating oceanic tidal waves with his splashing in the bath. He's also making a mighty fine effort at sitting himself up, watching and learning the rules of rugby, and keeping everyone in the room firmly under his governorship with his raucous roaring and loud boyishness. And I do believe he may even be trying to talk... I daren't wish too stridently but Orange seems to have at least one word in his vocabulary. Car. Pretty cool, huh?
So no more dry, news-agenda related stuff from us for a while, I hope. Just a little more Orange, instead. And if you see any of that drivel again in the future, at least you'll know why, and you'll know it will pass :) xx