That ONE thing

Irony just when you don’t want it.

Mid week and I was mid blog – a contentious blog, a ranty, confronting, awkward blog.

The sort of blog that sees me potentially unfriended, unfollowed, un “liked”

I was writing about the ONE thing I never want to hear again as a parent of a person with special needs. The ONE thing that I still can’t believe gets regularly said to me, that pisses me off the most and I just don’t ever want to hear again.

And then I get an e mail alerting me to a new comment in response to a previous blog.

And there it is.

Well done and a great read……Fiona ,God only choose special people and families to have these wonderful special ordinary people. I take my hat and hair off to you all, Claudia is so lucky to have such a wonderful family.

Keep up the writing its fantastic.”

Goddam it! God? Really?!

I now had to park this blog because it’s not polite to continue – it might offend the person who said it.

Because it was a compliment (of course) – with the best will in the world (always) and with only kindness and compassion as its motivation (as per usual).  Bugger!

This ruined my day for several hours until Steve’s blunt response

“So you are never going to say the very sort of thing you wanted to be able to say in this blog? “

That’s right. I am going to continue to smile and thank people for words that offend me.

Hypocrite”

Ouch. And I was annoyed – not with her for saying it, but with myself for immediately retreating to that place of sucking it up.

So I e-mailed her, explaining the strange circumstances of her comment and its timing – she was amazing and cleared the way (in my own head) for me to continue. So I will.

Here’s my position.

In the first place god isn’t responsible for “giving” me Claudia.

That person would be Mrs Samarakodi, a surgeon with infinitely skillful and tiny hands. She and her team went straight to work on my tiny premature baby, repairing her blocked duodenum and enabling her to live.

She, other medical specialists and the incredible nurses in the neonatal intensive care unit provided Claudia everything she need to be alive.

The version of Claudia god “sent” was so broken she would not have stayed alive

so to credit him with her life is hugely insulting to all those medical professionals, their years and years of diligent work and effort.

Claudia is alive thanks only to human expertise and intervention

(As an aside in those very early days I overheard my Father sidle up to a senior Dr and say “I hope you’re not giving my daughter a life sentence.”

I thought this was really harsh, but pretended not to have heard.

Over the years I’ve thought about this often and he was absolutely right.

It is a life sentence. And clearly Dad was never under any illusions as to who was providing that life to Claudia.

The closest he ever got to an attempt at spiritual comfort was

Well Honey, in my experience we rarely get dealt something in life we cannot handle”- which has had the dual effect of comforting me and galvanizing me when times have been tough)

And secondly when people tell me we must be special for god to have chosen us for this is – what is actually being said to me is this ;

You Have Got Exactly What You Deserve”

The idea that a god has selected this life for Steve and me and Claudia is just horrible.

Her difficult life which impacts also on her siblings and our wider family was given to us on purpose.

That this life of frustration, pain and struggle is just what he intended.

For US. And for HER

The notion that we have been especially chosen does not endear your god to me.

You might just as usefully tell me

oh you must have been crap in a previous life – this is karma”

or

I guess you have to work your way up through all your life lessons , you ignorant human”

or

cut the head off this rooster, stick pins into this doll and shout “ylangylang!” at the moon while spinning counter-clockwise. That might change something. Or not”

For me, the notion of being chosen by an omnipresent god is not only a nonsense but an offensive nonsense.

This paternalistic god of omnipresence and judgement, tricks and temptation, who demands obedience, reverence and worship while at the same time sending floods or plagues or turning us to salt is not a god of goodness and mercy.

For me, this is not real and nothing to respect, let alone feel special for having been divinely chosen by him.

It’s hard for me to not go off on a big ranty rant here about religion generally.

But I wont because the point here is just that I don’t like being told this thing.

It makes no difference if you are a truly religious person who believes we are blessed (which does happen) or someone who says it as a mere platitude, an acceptable “something to say” in response to our lot – (much more usual)

I know there are some parents who do feel blessed, honored, specially chosen to guide their child’s journey. That thought gives them comfort and peace.

But I’m not one of them.

Steve isn’t one of them.

So please don’t say it. Not to us. Not any more. We none of us deserve it.

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3 thoughts on “That ONE thing

  1. Something that is written from the perspective of experience and is thoughtful, thought provoking and enlightening is never a rant. I admire your tremendous patience, both with Claudia and the rest of society. I am dismayed that there is so little support for your family. Claudia is lucky she has you in her corner, fighting for her, when you shouldn’t have to. xxxx

    Liked by 1 person

  2. Yes Fiona, your father was right, it is a life sentence. I have seen that for you and your family and for other families with children with disabilities. It is definitely not something that anyone wishes for nor deserves. The platitudes must be irksome. Your honesty is refreshing and I would not want to be in your shoes.

    Like

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