Monday, 30 April 2012

Reality bites.

We're visiting with the DSA advice service today.  Which feels very bizarre considering that every day our Rukai looks and behaves more and more like an unaffected child so why are we even thinking about it?

Perhaps that will be my first question.  Maybe she's seen many others in a similar position.  Perhaps that's my second.

My third?  That's for when we get home and will be either something like: 'can you grab me a beer?' or 'are those chicken livers thawed out yet?'  Although depending on how long it's been since we did a nappy change it may be more along the lines of: 'what is that SMELL?'

I'm not really sure how to approach the whole Down's thing, particularly because Rukai is ridiculously strong and doesn't show any features.  Plus, after 11 weeks we STILL have yet to be given any lab reports, etc. to prove it.  Sorry, but transcribed notes from a doctor we do not trust and who tits-ed up giving us the diagnosis are just not enough - notes which contain some other factual errors (like I delivered by section and he's written about induced labor).  It's like ordering filet mignon and champagne and being handed a Hungry Man dinner and a juice box.  Show me the money or you're fired.

So that 'how to raise an infant with DS' gem of 'treat your child like a normal baby' really hasn't been the least bit difficult for us.  For that, we consider ourselves very lucky.  If things change in the future - and I do mean IF, because that's the kind of cockeyed optimist I am - we will take one day at a time.  The difficulty in the meantime is fending off the health service pushing intervention on us before it is required (if it ever will be).  How can you say 'treat him like a normal baby' while saying out of the other corner of your mouth 'see this specialist and undergo this therapy'.  Especially when it is not currently necessary.  To tick a box?

I'll tick your box, you keep that shit up.

As it stands, we expect his heart defect to have resolved itself by the time we have the follow up scan (based on the absence of the murmur last check) and there is nothing else wrong with his health as far as we or any doctor can currently tell.  So despite all the higher risk and stats (and we know how I feel about these) we consider the possibility Rukai will contract some other health issue the same as any. other. normal. kid.

Normal.  What a gargantuan, important word.  Abnormal.  That one even more so.  But I thought 'abs' were nice things on hardbody twentysomethings in the gym.  Why add 'ab' to a word and make it now a shitty word?  It's just wrong.  I'm going to leave it off and just go with 'normal'.  Because what is normal, really?

We always thought we'd win the lottery but sort of expected the prize to be money.  Instead we got our Rukai.  I guess you could call this a reverse jackpot, since you may as well burn piles of cash with all the spending-on-kid-stuff already done and that still to follow.  But in our world, which is not even remotely what 'most' people would call 'normal', our Rukai is as normal as they come.

And he IS our world.

T21, Down's Syndrome, designer genes, chromosomal abnormality, birth defect, whatever the hell you call it, he may have it but it will never have him.

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