From Captain Crap to the Baron of Belch.

I seem to have given birth to a frat boy.  This child can burp like a champion.  He gave the best demo to date to T's boss yesterday - imagine:

'Hey what a cute--'
'Braaaaaaaappppp!'
'Apple doesn't fall far, eh?'
'Blame mummy's side, we don't roll like that.'

That's mah boy!

At least it comes out.  Thank God it comes out.  I shudder to think if those stayed in, the volume of screaming we'd be hearing.

Also.

I thought babies were supposed to have a nice 'baby smell'.  Mine seems to consistently smell like spit up, what he expels from the other end, and Oilatum.  At least he's not so much Crusty Booboo anymore.  More of Stinky Poopoo.  Poocasso.  Squidge.  The latter not only a moniker but also a nappy change alarm.

And.

Grandpa's gone back home and it was safe sailing until Man Flu arrived.  So much for my bank holiday weekend lie in.  Only consolation is today's hair appointment in town.  On my way back, I'll have to accidentally forget to change trains at Stratford and take a wrong turn into Westfield.  There I will of course pick up some Man Flu armor (read: medicine) and maybe a new top for next week's girl's night.  One not covered in spit up.  And definitely not yellow.

If love could cure 'syndromes'.

Every time I talk to a medical person about an appointment Rukai needs due to DS I want to glue my ears shut with chewing gum.

It's innocuous I'm sure.  They mean nothing by it, I'm sure.  But this one referred to the doctor who leads the 'syndromes clinic'.

Good lord, that word is so negative.  It's so ugly.  It's so limiting and smacks of low expectations.  It just makes me want to jump in the shower and scrub it off.  Is this how I'm going to react every time?

How many other words will I add to that list before he's a year old?  How many lumps in my throat will I have to choke back?  How many tears will escape anyway?  How will I ever be strong for him when some days I find it so hard to be strong for myself?

I want to pound my fists.  I want to throttle someone.  I want to curl up in a ball.  I want to go back to before he was born, when we didn't know.  When everything was still ok. 

And then I look at him sleeping off his breakfast.

Just nestled in like any normal baby.  Just snoring away like mama.  My little angel boy.  My squidge.

Damn this is hard.  If love could cure 'syndromes'.  If only.

That voice in my head.

I'm sure I'm not the first, nor will I be the last mother to wonder if I actually suck at this.

Am I playing with him enough?  Am I feeding him the right amount?  Does that face mean he's still hungry or is he just remembering what it's like to eat?  Am I dressing him comfortably?  Should I put him to bed earlier?  Is this fabric softener causing his skin to dry out?  Will I ever sleep soundly again?

I answer the voice in my head:  "I think so, now please piss off because you're stressing me out."

I mean, if I'm getting this wrong, he'd be screaming persistently or failing to thrive or calling Bob Crow or Jimmy Hoffa or whoever runs the squidgy boy union or something, right?  But I get babble, coo, smile, cuddle, poo, short-scream-resolved-with-bottle.  (The last bit works on adults too.) These would seem to indicate a happy, content little man.  So I guess we're doing ok for now.  Guess I'll have to pack that voice in a box and ship it off to Timbuktu.  Or Boise, Idaho.  Or Mitt Romney's house.

And.

I was also recently wondering when to anticipate the return of Aunt Flo.  Upon Googling I learned that breastfeeding can delay this indefinitely.  I may just have to keep expressing through menopause.

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.

Only got four minutes.

I'm wondering if I'll ever be able to sit down again.

Having given birth by caesarean, this wonder is not actually due to stitches in regions one isn't usually supposed to be stitched, but instead only because of the need to time everything I do around Rukai maintenance.

Although being gestational diabetic gave me a jump start on running my life around mealtimes (bloody strange blessing in disguise, let me tell you) it remains a bit tricky when you are combination feeding bubba.  So a bottle every three hours or so is followed by an hour dealing with expressing what breast milk I can and time between is slim at best.

(Now for the mathematics, and because I am absolutely shite with numbers this is a small victory - celebrate with me or look away now!)

So every three hours we go: settle thrashing baby / feed baby / burp baby / change very full and leaking nappy / oops-baby-just-put-foot-inside-nappy-clean-shit-off-baby / change-baby's-shit-covered-clothes-while-trying-to-avoid-getting-more-shit-on-baby / oops-got-more-shit-on-baby-clean-him-off-again during every feed, figure it takes at least 90 minutes start to finish.  Followed by an hour to pump.

I may just have to start dressing him in bin bags and hosing him down every time I change him.  I'd use the bath but he'd probably shit in that too if timed anywhere near a feed.  This kid is a MACHINE.  I may have predicted this all when they said he pooed meconium in the womb and wee'd when they only had him pulled halfway out.  A machine, I tell you.

Anyway, that essentially leaves me a mere 30 minutes every three hours to shower / eat / brush teeth / wash bottles / sterilize bottles / play with baby / go shopping / do laundry / exercise / wee / take baby to appointments / answer Skype / curse Skype / burn shit stained clothes / post here / anything else that may represent normal life.

Ah, but this IS normal life now.  Dandy!  Super!

Add to the above all the recent rain, insert 'look around house for one of ten brollies we own and find none' and 'wipe rain off pram before parking in corner' and 'pick myself up out of the corner and just leave the pram there' and 'change clothes because none of the brollies revealed themselves and now I'm fricking soaked'.

What's that down to then?  Eight minutes every three hours?  Four?  If that's the case, I don't think I can ever go back to work.  That is, unless they want a gummy grinning little squidgy boy on the payroll.  Although admittedly I don't know that there is a job opening for 'Chief Crapping Officer' though he'd be a shoe in if there were.

I'd write more but my four minutes are up.  Must dash.

And it was all yellow.

It is no small coincidence that the yellow color used in baby clothes is exactly the same shade as shit.

I discovered this today when little mister decided to paint the inner leg of his babygro for me yet again.  Bless.  How thoughtful of my little Poocasso!  Today's artwork was created on a suit with different animals dotted across the fabric, and one - a lion - is that perfect shade of yellow.  Of course this made it nearly impossible to detect which was shit and which was lion until I realized the lions were not actually stuck to his thigh.  As for the solid yellow bodysuit he had on underneath?  Can't even see the stains.

So that settles it.  If we ever have another kid, I'm only buying yellow clothes.

It really started in 1971.

But you don't want to know about me, so I'll only go back to February 13th, 2012.

First baby!  It's a boy!  He's got T21!

Damn.  That's Down's Syndrome to you and me, but really who gives a rat's ass - he is our boy.  He is brilliant.  He is a mystery wrapped in an enigma, bundled up in a pooey nappy and what is lovingly called a 'babygro' which, on an alternate plane of existence, is sometimes called 'footie pajamas'.

He has a gummy grin, a piggy grunt and a knack for waking up at 3 am, still at ten weeks old.  He has my heart in his pocket and my finger in his baby grip.  He has Daddy's undivided attention and the love of everyone who's ever set eyes on him.

Here I will write about him, when he gives me the time.  Here we will travel together to the magical world that lives in our house called the Dirty Water Pool.  Don't ask what that means, I'll tell you later.  Just get a tetanus shot before you jump in.  Or pour a drink.  (It's a fun place after all.)

Since I've been writing the chronicles of what it's like to be his mum / mom / milkman, I've taken liberties to transfer them over here from Facebook.  That too will give me a pretty substantial post list out of the blocks.  Because, when you stop and look at it, we all want to be overachievers - even young firstborn sons with T21.

Let that T stand for Terminator.  Beware all the doubters, cos this kid is gonna FLY.

And with that...

I'll be back.