Monday, 1 April 2013

An Uncomfortable Question: What Makes us who we are?

There is a boy.  A boy I once thought of often.  When Little J first began to show symptoms, I would often picture him.  I would think about him from our hospital ward, as I tried to fall asleep amidst the out-of-time rhythmical beeping of different machines and the strangely comforting chatter of the nurses.  

The boy I would think of looked just like Little J, but he was a little bit older. His life was much easier.  His arms moved smoothly, his hands meeting their target with ease.  He pushed the buttons of his brightly coloured toys without hesitation and laughed at the unfailingly irritating noises that they offered up in return.  He was the boy that would run towards me with a big smile of recognition on his face.  He would stretch out his arms to me, saying ‘mummy’ and collapse in giggles as I picked him up.  He was the version of life that we expected.  The version that I was hoping would happen, as if by thinking about it, I could make it become true. 

I would be lying if I said that I never think about that version of life, but I don’t mentally picture it any more.  I no longer feel a guttural emotional pull to that ‘other’ child.  I am not drawn to him because the gap between him and my Little J has grown to such an extent that it cannot be reconciled.  That child, the ‘normal’, healthy child does not elicit a maternal response from me anymore.  This is because he is quite simply not the child that I love and adore. I am not drawn to him - because he is not my son.

This is in part because I have come to understand more about Little J’s condition.  The unnamed syndrome that now defines so much of our lives.  I have come to understand the role that genetics play in determining who each and every one of us is.  I did not see this before.  I thought in polar opposites.  I saw ‘unwell’ and ‘well’, not the immensely complex area in between.  Back then, this unknown condition was the beast that stalked us, dragging us further from the subjective notion of ‘normality.’  I remember on one particularly bad day, watching Little J totally unable to control his own muscles, struggling to stay in my arms.  I remember thinking how I hated this condition.  How I needed to know what it was called so that we could learn how to fight it.  I remember begging. whispering to the unknown; asking it to ‘just leave him alone.’  I didn’t understand.  I didn’t see what I see now.  It isn’t a separate entity.   It is caused by genetics.  It is governed by a quirk somewhere in our little boys DNA, which could also affect countless other things about who he is.  It is not our enemy.  It is part and parcel of the child that we love.

I am slightly ashamed to say that whilst I have attempted to make this sound like a life affirming revelation born from deep thinking; it actually started with the completely superficial.  The first time that a doctor commented on Little J’s super soft skin I thought, ‘why thank you very much, what a lovely thing to say.’  By doctor number three I was starting to realise that there may be more to this.  I have since come to understand a little about ‘genetic indicators’ and realised this unknown gene may have influenced many things about his appearance.  That shock of super blond hair, with rogue little curls that are a completely different length to the rest.  Those impossibly blue eyes with a star like pattern that winds hypnotically out from the pupil.  Would they be the same without this genetic oddity?  Who can say?  But wondering about this changed how I felt about that other version of life.  Because that other version of Little J?  Well he became a bit hazy.  When he ran towards me I didn’t really see his face anymore.  I couldn’t see it, because I no longer had the faintest idea what he looked like.

But the big one.  The realisation that really changed things for me was personality based.  You see, Little J is happy.   He is very happy.  Don’t get me wrong, we have plenty of tears and challenges, due in part to frustration at the things he cannot do.  But in general he is a very smiley, giggly child.  In this respect, we are very lucky. Even when he is suffering with pain, or faced by yet another invasive test, if you are willing to dance and sing manically like a CBeebies presenter on a pub crawl, he will reward you for it.  He regularly collapses into deep belly laughs, completely unable to stop.  It is a wonderful, beautiful part of who he is.  And I am starting to realise that it is not entirely typical for a child of his age, or even his developmental age.  What really brings this home to me is when I take him to any activities which involve songs or music.  Other children may offer up a brief laugh, or a smile here and there.  But for Little J, a round of ‘Wind the Bobbin Up’ is worth so much more.  It is, in his little world, the BEST THING EVER.  On more than one occasion I have had to momentarily pull Little J away from a group song in order to ensure that he remembers the importance of breathing amidst the hysterical laughter. 

I used to think that was just what young children do.  Now I’m not so sure.  The older he gets, the more I see that this demeanour and his indiscriminate affection for everyone he meets is not in line with most young children. I have never seen him deny a hug to anyone (ensuring ego-boosting extra squeezes for mummy and daddy).  And so I realised that I didn’t even know about the personality of that ‘other ‘ Little J.  The ‘normal’ child that I used to think of.  Would he be smiling quite so much as he ran towards me? Would he be as affectionate, or collapse in giggles as I picked him up?  I realised that I didn’t know the first thing about who that child was. 

And so that is how I came not to really care about that other version of our lives.  That alternate reality where life is so much easier, but that little bit emptier. 

It has also really made me think differently about disability.  Don’t get me wrong – I know that this is in no way the case with every genetic condition.  Children can be affected in countless ways and my feelings may not remotely echo those of other families.  However, for the reasons above, I can’t help but feel that the impact of this genetic quirk extends far beyond the medical for our little boy.  I imagine that to the casual observer, the assumption would be made that we are desperate to ‘fix’ Little J.  To make him ‘better’.  If I am really honest with myself, I would probably have thought the same.  I am not naïve about the complexities that the future will bring and there are days that I would give anything to make his life easier.  But the waters are now very muddy indeed. I recently read two very interesting newspaper articles.  Both were by parents of disabled children.  One felt strongly that his daughter’s disability was part of who she was.  It was not something that anyone should feel ‘sorry’ about.  The other challenged this approach and an ‘idealistic’ view of having a child with special needs.  She would take away her child’s disability in a heartbeat, no hesitation.  I read both.  I empathised with both. It made me ask myself the question at the heart of both articles and I really don’t know where I stand.  If I somehow had the choice, if I could ‘fix’ that little genetic quirk and the risk of changing who my son is, would I?  There was a time I would have thought this was the easiest question in the world.  How wrong I was.

My instinctive response to even thinking about this is to mentally scream no.  To shut the curtains and hold him close in case some unknown force were to whisk him away.  It makes me think that the problem is not his.  The problem is society’s attitude to that which it perceives as ‘different.’  Why should he change for anyone?  I think about how his pain is greatly improved and I genuinely believe that we will soon have it completely under control.  His life is happy and fulfilled.  We will do whatever it takes to keep it that way.  We will strive to achieve in our own way - and achieve we will, together.  We will always have our little moments of grief, wishing things could be easier for him.  We will have our moments of fear.  But we do not spend our days consumed by sadness.  We are immensely proud of our son.

But then logic starts to scream just as loudly.  It tells me to stop with the hippy crap and face reality.  The world is the way it is and it will remain that way.  It reminds me that life with a complex disability is unbelievably hard. It reminds me that we don’t know what the future holds or what level of independence he will have.  It tells me that one day we will be too old to care for him and he could be at the mercy of an underfunded, often frightening state system.  It reminds me how frustratingly trapped we are – financially impacted by his condition, but needing huge amounts of money to give him all that he needs.  The alternative is independence, a life, maybe a family of his own.  What kind of mother would not instantly consider that the better option?

Would I really choose for our lives to be this hard? For us to have to fight for everything?  Would I not choose to make his future secure and keep him safe?   Would I not ensure that he never has to face abuse and prejudice due to disability?  Would I not remove him from one of the most consistently marginalised groups in our society?  Would I not want for him to be free, to be mobile and to live a ‘normal’ life?
Would I change all this if it meant saying goodbye to the child that I know and love?

Would I? I genuinely don’t know. 
Can I? No.

So I guess none of this really matters, does it?

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