Monday, 18 June 2012

The proof, the whole proof and nothing but the proof.

We finally had our genetics appointment.  Four months waiting, expecting that all-important proof, expecting to see something on paper that leveled us out, stopped us spinning, gave us direction.

Instead we got more of the same shit, different day.

I really am beyond flabbergasted and haven't had the heart to report back.  My faith in human decency is officially in shreds.  I don't want to be hard but...well, it's getting too hard NOT to be.

So no proof, but what did we get?  A first question of 'how did you reach this point?'  Delivered with a false smile and a hefty dollop of full-fat pity.

Um, if you don't know I'd really like to have my morning and our four month wait back; we have better things to do than dilly dally with you when you clearly do not give enough of a toss about us to have done a little research.

She gave us much more nothing.

The offer to view a chromosome map but not that of our son.  The patronizing instruction to 'just keep loving  him and caring for him like any other child'.  The look down her nose when we expressed our optimism that Rukai would be breaking boundaries, exceeding expectations.  'You poor, deluded, sad bastards,' she was thinking.  We both felt it.  Felt it hard. 

I wanted to clump her.  I raised an eyebrow, smashed my lips together, crossed my legs and folded my hands in my lap instead.

I asked her how many of his cells they tested, wondering if they could have realistically ruled out Mosaic (no, in case you're wondering).  I asked where the proof was.  She handed me the single sheet of paper we'd seen before that contained little more than a line of text summarizing the actual evidentiary test result.  It was like being told you need a hip replacement and not being shown the MRI because 'you wouldn't understand what you're seeing anyway, you're just an ordinary person and we are doctors practicing medicine.'

Indeed you are.

One lousy line of text, shorter than the entirety of this post, to define the condition which will shape our son's life.  She told us they probably don't keep these records because 'the doctors wouldn't find much use for them.'

What part of 'it-isn't-about-the-fucking-doctors'-needs-it-is-about-the patient's' are they still not getting?  I can not believe she used this as an excuse for discarding a test result which - on any plane of existence - should be made available to the person on whom the test was done.  How is this unreasonable?  I despair.

'They may not have found any use for it, but we would have wanted to have it,' says I.

'Most parents don't ask for it,' says she.

I couldn't even say 'but we are not MOST parents.'  I couldn't say it because at that point I realized that the true path we are on now cannot be shown to us by someone who's read a lot of books and hung a certificate on the wall.  Rukai will show us the way.  There is no other.

So instead I chose to walk away.  In my head we'd already left but still we kept conversing with her.  Still we finished up the meeting.  Still we left with a cordial goodbye and that lousy line of text.

She promised to ask the lab if they happened to keep the records so we could get a copy.  I won't hold my breath.

She asked if we had any further questions and T summarized the situation so perfectly: 'the only questions we still have can't be answered.'  Time is the only thing with answers and for it, we must wait.  And chase.  And hope.  And live.

Tick tock.

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