Tuesday, 15 July 2014

Musings of a Cheese and Ham Sandwich

Perspective is an overused word in my little world at the moment.  Admittedly, mostly by me.  But it’s an unfailingly relevant one when you have a disabled child with an uncertain future.  I mean, of course the world shifts to a new degree of perspective.  Getting stuck on a non moving train is really not justification for the phrase, ‘worst day ever.’  Spilling coffee down my white top is no longer an event of biblical proportions.  The thought of driving through Central London in rush hour no longer breaks me out in a cold sweat (sh*t scary got somewhat redefined around 2012). 

But where this becomes a real challenge is in relating to other people who don’t quite share your cosmological viewpoint.  (yeah, I know, I went a bit GSCE philosophy there). Personally, my view on this is particularly skewed as Little J is an only child.  But I often need to give my life-axis a quick shove and re-align it.  Because it is not tracking the same line as the vast majority of people I speak to.  I need to be able to relate to people for who SATs are important exams for small people, not oxygen saturation levels and sensory development means those fun baby classes with ribbons and stuff, not the touch-my-hands-again-and-it’ll-be-the-last-thing-you-do stare of a child with sensory processing difficulties.  But, I have made myself a promise not to let that isolate me, or to stop caring about the things that others do.  I admit to sometimes being a work in progress – but don’t give up on me quite yet.

That said, there is one environment where my perspective really struggles to fit. I have realised that coffee shops are like a parenting sociology experiment.  They are essentially a safe haven with caffeine filled rewards for general survival.  The one place where children are totally allowed, but they cannot partake in the main attraction. And so you see all sorts of parents in this envirmonment, the showcasing parent talking to their child at top volume, the embarrassed parent (keeping a good distance from their child who is poking their finger in a neighbouring table’s panini), the exhausted caffeine dependent new parent in the corner who just wants to be invisible.  It makes for an interesting people watching experience.

There was one recent coffee shop experience that really brought home my differing sense of perspective and forced me to keep it in check.  That day, the competitive post school crowd we out in force.  We are talking the type of parents who favour a top volume ‘so what group is your son in for maths again?’ (with a fearful look that it might be higher than the bored offspring sat next to them who is currently pouring the contents of sugar packets onto the table and couldn’t care less about algebra.)  Quickly followed by some exam related comment or a wider statement about the state of schools in the area (child now licking the table).  Whilst my perspective axis gets wobbly listening to these things, I want to be clear that I am not judging.  I have no idea what kind of parent I would be if Little J was not…well, the complex boy I know and love.  Who knows what things I would have said or what would have mattered to me.  But, as things stand, I’m coming firmly down on the side of the kids.   You enjoy your moment of saccharine filled freedom before someone shoves a pen in your hand or sellotapes you to a piano.

On this particular day, it was the words of one of the littlest members of this group that got me thinking.  There is something about speaking to a child around Little Js age with adult terminology that I don’t really get. But on this occasion it got a response that was delivered with perfect unintentional deadpan.

The conversation went like this:

Mother: 'Darling, do you want a croque monsieur?'

Small child:  'Mummy…It’s a cheese and ham sandwich.'
I couldn’t help laugh at his extremely valid point.  But it also got me thinking. Looking at the mother in her gorgeous heels and checking her phone for e-mails.  I just felt a bit.  Well…cheese and ham sandwich.

How about just a cheese sandwich?
Don’t get me wrong, I have zero delusions of grandeur.  I am far more frothy milk than babycinno and have no desire to be anything else. But ambition, achievement…they are things that I am struggling to find a space for in life. I know that every mother has the post baby ergh phase.  The one where you realise that your own dreams are well and truly on hold.  It doesn’t matter what they are.  It could be work, exercise, going out with friends…it’s all put to one side for now.  And sometimes there is that little pang of want.

Only here’s the thing when your child has incredibly complex needs.  It’s not put to one side for now.  It’s put to one side for the long run.
Now I don’t blame you if you are reading this and muttering ‘selfish <insert word of choice>’. So I want to be clear, this isn’t a whinge, it’s just our new normal (I don’t blame you if you want to punch me in the face a little for this post though.…its ok, I kinda do too).  

Let me be clear that I would happily give up every single thing I have for my son.  He is the biggest, brightest, part of the tapestry that makes up our lives. 

But that brightness can’t be fully appreciated without a wider context.  There have to be other threads that run through it.  Threads that intertwine and create a larger picture.  It is their subtle shades that creates the contrast.  They highlight the central part, the most important part.

And finding those threads, identifying what those threads are and how to bring them together is a surprisingly challenging task.

In thinking about all of this, I came to a realisation.  I thought I had reached a degree of acceptance over the last two years.  I haven’t.  I accept my lovely boy for all that he is.  I have always made a conscious decision to do this.  To not be sad.  He is fabulous.  He always will be fabulous.  No matter where this journey takes us.  But along the way I forgot to do something.  I forgot to accept me.

You see, I am different.  Well, no I’m not.  But what I thought was my eventual destination is different.  I am never going to be a sandwich of the bubbly cheese variety.  No garnish here.  Yes, yes, you can tell me anything possible as much as you want, but…seriously.  All of the plans I had are shelved.  And getting pretty dusty.   I’m not talking the big stuff.  Yes, of course that is there too.  My career is limited.  I want to believe that all doors are open, but really.  I can’t change the care and social system. I don’t think we will ever have a reliable level of care to enable me to work proper hours.  I can be honest about that, I am open about that.  I couldn’t realistically aspire to any degree of seniority, even in the long term future.  There are no glass ceilings here.  They are the fully visible metal smack-you-in-the-head kind.

But it is so much more than that. I feel my social life change and friends slowly slip away as I fail to show up to yet another event. I used to exercise regularly.  A rarity now.  I feel my fitness and health tailing off.  I used to think that we would eventually get to where we needed to be financially, move to the house we wanted.  Not going to happen.  I used to think that Little J would have siblings in his life.  Not without a diagnosis.  Even those crazy little aspirations that were in the corner of my mind.  That country we always said we would visit ‘one day’.  Well even if we were to eventually find the money, they had better have wheelchair access, an adequate medical system and a flight that isn’t too long.

You see, I can’t have any long term goals.  Everything is in constant flux.

For someone who is a borderline control freak likes to plan, that’s a strange place to be.   And it’s often a challenging place to be.  I need goals in my life that don’t revolve around Little J.  Not just for me, for him.  It simply isn’t healthy for all my objectives in life to be tied to him (he firmly agrees - he remembers the physio spreadsheets).

So I have come to realise, that part of the problem is, well…me.  I need to stop trying to create a tapestry in the wrong frame.  I’m not giving up on my dreams, but they need to shift a little….the threads need to get a bit shorter or they will never fit.  I will be eternally frustrated as I try to reach the impossible. There will be a perpetual undercurrent of failure.

I don’t actually have any answers to all of this.  I haven’t figured out what those goals are.  I can’t quite work out where I am trying to get to – there is no plan.  But, for now, I am determined to take a tiny step.  To make time for something.  Just one thing, every few months that is a little achievement just for me.   For now, I have ‘Photography for Dummies’ on order.  And I am going to read it and learn from it (don’t actually have a camera yet, but hey, details).  Even if it means that we drop that third round of therapy on a Wednesday afternoon and Little J gets a bit of (ssh) CBeebies instead.  Because, you see, he’s at his happiest when I am at mine.  He doesn’t need me to be the best, or hit the big achievements.  He just needs me to be happy, right now.

And so, that was my momentary musing in the middle of the world’s most competitive coffee shop.  And it led me to realise what I need to do.

Because when that little boy turned to his mother and offered up his observation on that lovely looking French sandwich…he didn’t do it with derision.  He did it with a smile.

Because right now, a cheese and ham sandwich is all he really needs.