Sunday, 19 April 2015

A blanket of words

Currently most evenings and for a couple of hours on my days off each week, I find myself with a blank document or notepad in front of me, trying to breathe life into a new story for my Genies and The Treehouse At Number 9.  In addition to this I have been feeling rather blue over the last month, which, when it really takes hold, removes the words and writing and leaves me blank.

These two statements show that I am not entirely achieving what I would like to, and words are not currently my solace as they have so often been.

So instead I have been reading and reading - books, magazines, blogs, articles, scripts, trying to warm up again from the inside out.

I have been reminded of a meeting I had a couple of months ago with a father who via his sweet young baby has joined the Ch18 family.  In the course of our chat I walked myself back to methods and choices I made when our news was new and things were hospital-tastic; about how I talked and expressed our situation.

We discussed how I explained things at the start and communicated with different people - the family, the outer circle, friends, within our marriage, to doctors and nurses and people who cared and did so sat in waiting rooms, clinic chairs and round our kitchen table.

What strikes me is both the power and frustration of language, how it can fail you when you are learning new words and coping with the feelings behind them, but how it strengthens you as you master your new script.  Mainly I've been noticing how we all do it in our own way.

Within the swanky day job, I am now at the happy point of reading series outlines and scripts for a gorgeous series we are making about a family entering the world of "special". The drama will come as much from the family's (in)ability to communicate as it will the diagnosis, and with every sentence I read by the amazing writer, I can't help but compare those characters to me.

Rather than denial and rejection of labels, I have often described myself as having had a tourettes-like urge in those early years to tell anyone looking at my gorgeous baby about his special genes, his rare disorder, the strange chromosomes...."do you know anything about genetics?"

With every conversation I had like this, I know now that I was controlling my own words, learning how to talk about him, how to describe us, how to own this shitty confusing horrible time with my own language and not the well meaning or unclear words of those around us.

I spent my time taking our new label and drawing my own words and pictures on it, slowly obscuring the letters and numbers that other people had put there.

I still have to control my words when around friends, who look at my amazing boy and wonder what about us is atypical.  One such conversation has occurred a couple of times with a neighbourhood friend, dog owner and father of a football mad son who is friends with ours. He has asked what it is that makes me concerned about my boy, because he struggles to see anything at all.  It's a familiar refrain, which of course is better than the head-tilting "poor you with your disabled child" option which is thankfully not the case... but still one that I bristle at.

The last time we talked like this, while looking at our boys play football in the sun that day, I told my friend that he's asked this before and questioned if he was aware of that. I told him I remember very clearly feeling hurt and defensive as I answered him before, because at the time life was very tough and I linked his question to my latest blogpost which was one of the early vulnerable ones.
At the time I think I even said don't read it if you don't understand what I'm moaning about.
Although maybe I just said that in my head...

Nowadays while things are generally calm and clear, I can explain undramatically to well-meaning friends that I parent as I need but that we're not all that meets the eye.  Also that a lot of my boy's success is down to me being able to power on in those early years and not collapse under the medical confusion and lack of information of my very ill baby.

People now don't know what appointments,  challenges or extra curricular stuff goes into mothering,  because I don't choose to show them.  And that is a subtle difference from those early days when I couldn't let anyone see how hard I was finding it.  Yet even then, I found I could always blog and write that pain with ease.

I won't ever forget the early tough stuff, but it doesn't stop me seeing the amazing boy in front of me today.  I parent both my boys with my retractable metal filing cabinet residing in my brain, there to be rifled through and sometimes popping out at a file all by itself for me to notice.
Right now the files open are dentist, optician and, following a very thorough neuromuscular exam, the one that leads into the school building that is getting more input every day.

As I've said before, knowing my boy doesn't stand out as different 99% of the time, but also knows to be proud of any differences he carry, is about as good as I've ever hoped it can be.
I have and will continue blogging, writing, forming, thinking, sharing because that way sanity lies for me, and because of this journey into language, I am able most of the time to give a non-defensive glimpse into the parenting that lies behind our appearance of typicality.

Returning to these new members of our Ch18 family, a family they didn't ask to join, I want them to know how amazingly they are coping, able to see things clearly as parents but also hoping and trying simultaneously to live life day to day.

When I first speak to people new to diagnoses, I realise that my questions hedge around what they know, how they speak about it, what family around them knows, how they explain to outsiders, how they talk to doctors.  Language questions every one, because, of course, words are where I found sanctuary, and somewhere I think I always will. If not on this blog, or in my stories, then in the conversations I have with strangers and friends every hour of every day.

In our family, thanks to my funny clever husband who has come up with most of the funny titles of the stories I have written over the years, we have rhymes to ease the nagging that comes at mealtimes from the subtle issues with low muscle tone, oral weakness and neurological every meal, on and on, day by day, you can hear us all repeat...

Sit wholly over the bowly.
Sit straight over the plate.
Sit squarely on the chairly


And then there are the mantras, there to lighten the dark patches...

I can do it.
I am brave and I can do it.
I am kind and clever.
We are very lucky.

Words and language sewn into our daily routines, consciously there to help make things better.

This is a blog post that has been paused for weeks on end, but finally I know why I kept it.  Despite the colour blue tinging my present, and the frustration around a lack of balance and head space for all the things I want to do, words are part of my fabric and always will be.

From the words that go around my head too dangerous to be spoken; the chats with strangers that I pass by each day, the stories these strangers come to tell me; the poems and stories I write; the school sessions that help the children to trust their brains so jam packed with brilliant words and thoughts; the scripts I read and the encouragement I give.

I am steeped in words and instincts and they never fail me, even when they spend more time within me than out.

It's nice to be out tonight.  See you here again soon