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.

Sunday, 29 April 2012

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.

Friday, 27 April 2012

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.

Thursday, 26 April 2012

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.

I am mama.

25 April 2012

Every bride gets to enjoy that 'center of the universe' feeling that goes with the special day. All eyes are on you, you're the most important person at the party. So it's a pretty substantial let down when the wedding day ends. I thought there would never be anything similar in my life again, but then I had a baby.

No one else comforts my son like I can. Sure, Daddy has his way but I am Mama and there is no other. No one has that same 'conversation', gets that same smile, that same cuddle. Every bottle I fix, every poo nappy I change, every bath I draw makes it more so. My son is only 10 weeks old and we already have such a strong bond. I cannot wait to watch him grow and can only hope my heart doesn't burst with all the love and pride that will grow with him.

There is no more important discovery I have had than this - this is total bliss.

Of bing bong songs and Sharpies.

21 April 2012

It only takes three uses before you start humming the bing bong song that lives in the bouncy chair. This will be your new favorite tune because it puts little monster babies to sleep and lets mommies go get a glass of wine. Er I mean a cup of coffee.

Better yet, invest in an iPod dock and download some of these: At least then you can sing along and your kid will grow up rocking out instead of loving Barney and Tinky Winky and other ilk of that persuasion.


Despite having purchased said chair and many other things-to-distract-bubba-from-freaking-out, the most interesting to him are a series of black and white patterns drawn in a long ago art class and casually taped above the changing pad. This is the infant equivalent of 'to hell with the toy, I'm playing in the BOX'. Save your money and buy a Sharpie.

The milkaholic, or 'mommy, you SUCK!'

17 April 2012

Despite evidence to the contrary, there actually IS someone on this planet whom I will allow to cough in my face. He's about 54 cm, 8-1/2 pounds, looks like a little cherub and is a raging milkaholic.

These milkaholic babies give pretty good hunger cues. Ours has three stages - 1) lick lips a bit while making piggy grunting sounds and kicking legs cheerfully; 2) suck on an imaginary bottle (which is about the funniest thing I've ever seen in my life); 3) full scale meltdown because the parent people have missed cues 1 and 2. The full out thermonuclear will also occur if the parent people stop feeding the little billy goat before he is officially full. I got this last night and my ears are still ringing. He seemed to be doubly pissed off because I rarely miss the early cues. It was like he was saying 'you KNOW I'm hungry! Why are you not LISTENING to me?!? You SUCK! I want my MOMMY! Oh damn, you ARE my mommy! But you're not LISTENING to me!!' Poor chicken. Poor Rukai too ;)

At any rate, as young son is exploding, I actually heard myself shouting to T - in reference to the formula - 'cool it down FASTER!!' as if he actually could do that. But our intrepid hero proved himself a genius by scooping Rukai out of my arms and getting under some dim lights. Then using the magic daddy touch and a load of rocking he cooled Rukai down instead. For so long in fact that he conked out and we had to warm the milk back up again.

I feel a bit like the Keystone Cops. Or the Harlem Globetrotters. Or the Three Stooges. Nyuk nyuk nyuk.

Milktender, another round please!!

The wafting stank of poo.

13 April 2012

Family visits en masse turn sweet angelic boys into demon babies for days afterwards because - in the absence of Skype - everyone thinks it's ok and/or humane to play pass the parcel (aka hot potato) with them. To dull the shine, one can provide a strategically timed pre-feed to ensure the wafting stank of poo greets each passee. I am strangely looking forward to the teething days because at least then they'll put him down.


It is necessary to make a packing list and add 2 hours prep time for an overnight visit to London granny's house. In the future I will buy ten of everything and make supply drops in advance. Kind of like hiking the Pacific Crest Trail. Unfortunately the only mountains and streams we'll get are made of nappies and wee.


I think we need a bigger car. Or a pack mule. Or a carrier pterodactyl. Or something.


12 April 2012

Just when I thought having an 8 week old in the house had redefined high maintenance, I've gone and added a parental houseguest with a dodgy hip. Instead of requests beginning with 'waaaaaaaah', those from parent person are of the 'can you just...', 'do me a favor and...' or 'I need to...' (read: YOU need to) persuasion. Of course I can just, but please first pass me another Corona.


I have concluded that Skype is really an evil mirror belonging to the Wicked Witch of Timeus Stealus Interruptus, programmed to fire off that uber jolly ringadingding just as high maintenance persons are requiring said maintenance. I am convinced that Skype was invented by my employer to a) get me to want to go back to work and b) make those small office interruptions pale in comparison.

That said, I have now already reached Skype overload and would rather answer the call of very-pooey-nappy than ringadingding. All. Day. Long.

Squeam part 2: Shitstorm.

3 April 2012

Check your squeam at the door or look away now.

Pricey bottles and looser nappies help gassy babies deflate and eat without incident. Usually.

But nappies which are applied too loosely result in said baby filling one. entire. leg. of his babygro with shit. And still smiling, the little stinker.

The smart mother will smell the deposit mid feed and subtly hand off baby to daddy. This tactic fails miserably however, because although daddy gets babygro clean out duty, someone has to dangle bubs in the sink to remove the offending paste.

Don't let this happen to you. If it HAS happened to you, the wine's on me. If it has not, consider yourself warned.

Bottoms up!

Babble and coo.

31 March 2012

The 5 am feed is far more excrutiating when preceded by sambuca and followed by a very alert infant seeking stimulation.

Must dash, I am off to babble and coo. Even more than when I got in last night.

Parenthood is the Matrix.

29 March 2012

The phone is not 'suddenly always ringing right when I'm in the middle of something'. I am just no longer ever NOT right in the middle of something.


Once there is a baby in the house, said baby is the only one to have a regular mani, pedi and facial. Adults now get the two-minute-shower-while-eating-a-sandwich-and-loading-the-dishwasher combo.

This requires being in three places at the same time, which is a newly acquired skill, learned in a ridiculously short span of time.

Therefore, parenthood is the Matrix. You may call me Trinity.


28 March 2012


Take all the spare time you thought you had before, add one baby, subtract ten gallons of dish soap and 4 of laundry detergent. Then multiply by infinite sleepless nights and an even bigger need for a big night out.

Stir. Hell, shake if you're James Bond. It won't change the flavor.

You'll still end up with bags under your eyes and a love affair with a little squidgy, squeaking, grunting bundle of wonderful.

And a whale of a sore back.


There is a reason some bottles are cheap and some cost a fiver apiece. You learn the difference during one of said sleepless nights. It suddenly ends with a content, full, sleeping bubba and much less spit up on your shoulder.

But then too, so does a successful 'big night out'.


23 March 2012

Today's subject is amazement.

There is little in the world better than hearing your husband say 'my mum said the other day she thinks you look after the baby well'. Peel me from the clouds, since I am surely blessed to have her.

Also close to the top of that list is to see the faces of your ancestors in your child when he 'does that thing with his lips' or 'scrunches his nose like that'. Of course we'd also have to include on that list the dazed expression and pot belly from drinking a bit too much, milk.

Squeam part 1: Crusty Booboo.

21 March 2012

Despite the amount of anticipated 'squeam', once you get spit up on for the first time, all squeamishness goes out the window. To that end, it helps to have on hand plenty of the previously mentioned muslin cloths and enough baby wipes to paper a room.

And speaking of squeam...

It is quite certainly a gnarly sight to see an entire layer of your baby's skin shedding. To combat any negativity, we continuously rub him down with olive oil and have given him the contrastingly cute nickname 'Crusty Boo Boo'. Not sure how he feels about the latter, but we nearly pee ourselves laughing every time we say it :-)

All this and a baby too.

19 March 2012

Although it may seem extortionate, there is a bloody good reason muslin cloths cost upwards of £1 each. Try baby maintenance without them and suffer the consequences.

And -

Blocked ducts fricking HURT, particularly when the cure is to keep prodding them. Wasn't the pain meant to stop at the birth?!

And -

Every journey time estimate requires an additional 30 minute 'oops cushion'. For example: oops-I-haven't-brushed-my-teeth-yet, oops-still-need-to-pump, and the piece de resistance, oops-the-baby-just-shat-on-me-I-have-to-change-now.

Measurement schmeasurement.

17 March 2012

It is impossible to tell just how much a baby eats because they always pour half of it down their face.

Hitherto, the dual nappie / wardrobe change maneuver is an essential part of the night time regime.

Sleep? What's sleep?

10 March 2012

It is advised by many to 'sleep when the baby sleeps'. Which is all fair and good, but all the faffing around to get the baby quiet enough to sleep just keeps waking me up.

What it really should say is 'when the baby wakes up, take a sleeping pill. It should kick in when you finally get him to sleep'.

THAT, I'd believe.

The need for speed.

9 March 2012

I now totally understand why friends with kids do everything in turbo speed. If I didn't do everything in turbo speed when Rukai is asleep, he'd be awake too soon for me to do anything. I think that makes sense but I've only had rolling 2:30 spurts of sleep for three weeks. Which brings me to discovery 2:

I always wondered if I could awaken quickly on an airplane if I was fast asleep and there was an emergency. Rukai has now run the 'baby bleating at 3 am' test for me repeatedly and I am officially zero to cribside in an eighth of a second. Case closed.

Tune in tomorrow for the next episode...