Saturday, 19 May 2012

See you on the other side of the status quo.

If you've seen the movie Cast Away you'll know how we felt going to Rukai's follow up heart scan yesterday.

The scene where Tom Hanks finally escapes from the island.  Frantically paddling, eyes akimbo, screaming over the wind 'hold on, Wilson! Hold on!', then in goes a deep breath, up goes the makeshift sail and at last he clears the monster wave that kept him captive for so long.

We cleared the monster wave, and pretty bloody early thanksbetogod.  Rukai got a clean bill of health and we came out on the other side.  Our boy currently has no health problems.  Aside from that pesky third chromosome 21 but that, my dears, is on paper.  That is speculation until manifestation.  That is theory.  We work in fact.

Rukai is healthy today.

Of the two holes in his heart visible at birth, one has closed completely, the other is too small to cause a problem.  The specialist - a very strong and healthy man by all appearances - told us he has one to this day.  Joking about how much he may have grown were it not there.  Commenting how unusual it was to see the other one of Rukai's close so quickly.

Speaking to my NCT pals yesterday afternoon, I noted how many times in the past three months we've heard that kind of thing with regard to our son: 'that's uncommon' and 'I've never seen that before' and with each I am lifted. 

Our little warrior.

So minus one VSD and half a PFO, home we go via TFL for some B-U-B-B-L-Y.

I remain a novice but am already read enough to know that Down's syndrome is not a disease.  It is not like a cancer, all of which operate pretty much in the same way, just in different parts of the body.  In cancer, dodgy cells multiply and destroy good cells.  Sometimes they can be stopped, sometimes they can't, but the basic way a cancer behaves doesn't really vary.  Stats about cancer are far more realistic.

Down's syndrome is about as far from this as anything about which I have ever read.  I believe in stats about Down's about as much as I believe politicians in an election year.  And when you stop and peel this banana to get a good look at what DS really IS, it's really not that bad.

I'll repeat that one because it's a ridiculously important means of looking at something that is usually tagged as a monster under the bed or fate worse than death.

It's. Really. Not. That. Bad.

Mind you I am coming from the viewpoint of someone whose child has avoided many of the most problematic congenital health problems - and for this we are and always will be eternally grateful to mother Fate - but this is really to say there IS another side to the coin; a side of which most people are blissfully unaware.

Bottom line is, Down's is mostly a learning disability with a huge range of 'symptoms' - or related health conditions - and physical features which may or may not appear.  In as much as every individual with the condition is unique, the manner in which he or she will be affected by it will also vary hugely.  No research has yet identified why.  To top it off, the IQ range of individuals with Down's actually OVERLAPS with the range in the (and here's that word again) 'normal' population.

That said, I suspect Rukai's intellect will certainly surpass the entire casts of Jersey Shore, The Only Way is Essex and every other reality television program, so what is so bad?  Now with a clean bill of health until - IF - anything materializes later in his life, the answer is: nothing.

It is there we find our greatest hope and the greatest possibility.

When it comes to a condition that likes to play chameleon, no amount of research on other people will predict its affect on our son.  Tell me all the 'MOST have higher risk of A' and 'MANY face a greater likelihood of B' you want but until I hear about a proven 'ALL' it is only theory.  Our son is healthy and behaves like any other child without a label.

It is called 'practicing medicine' for a reason.  We are not about to practice life.

See you on the other side of the status quo.


  1. Highlights for me while reading this:

    "Rukai is healthy today."
    "Down's syndrome is not a disease."
    "It's. Really. Not. That. Bad."

    These statements made me a bit teary-eyed - in a VERY good way!! ♥

  2. ♥ the hearts! You are hereby officially elected president of the Rukai appreciation society. Thanks for following us on our journey!! x