Kid with a thing

You might already know, but we have a kid with a thing.  The thing is rare and has a long name, so Nurses write it on the backs of their hands, in order to google it later.  Doctors nod intelligently and memorise it, in order to google it later.  The thing is called Pyruvate Kinase Deficiency, and even I sometimes worry I’ve spelt it wrong.  Even though I have been well acquainted with PKD for seven years now.

This rare thing can mean nothing very much at all, and some people don’t even know they have it until they get a bit stressed, run a bit of a fever and get a bit anaemic, and it is found out, almost incidentally.  This rare thing can also mean a whole lot of drama, with operations and gall stones and blood transfusions and a compromised immune system.

We found out about this very rare thing, that was hanging out on Chromosome Number Two, when Coco was just two months old.  She had turned a vibrant shade of yellow a few hours after her birth, which calmed down with copious breast milk and UV lights.  At two months of age, the yellow came back, but this time it didn’t feel quite so jaunty.  This time it felt vile.  Or violent.  Either way, the secret part of my brain that knows things, knew it wasn’t good and started to thump.  In fact, that secret part had been whispering, “she isn’t quite right, you know” all along, but I had dug a nice little hole and buried that thought snug and safe for two whole months.  Until it came clawing to the surface like something out of Pet Semetary.

I was told that Coco has a “severe form of PKD, that we think, at this stage, is compatible with life.  She will require monthly transfusions and surgery as soon as she is strong enough”.  I buried that thought in the hole where the other one had been, and this time I stamped it right down with my boots.  Just to be sure.  I didn’t tell anyone the whole story.  Just the PKD bit, which of course, is the easy bit.  As time wore on, I let little bits of the story creep up to the surface where I could have a peep at them, one piece at a time.  I would talk to Nath, or Hayls about the bits, and then I would pack them carefully back down again.

This is Coco’s seventh year of living with PKD, and so far she has surpassed all expectations.  The only operation has been to repair the tooth enamel that her bilirubin destroys, and so far (fingers and toes and eyes and legs and arms crossed) she still has her spleen and her gall bladder, and only gets blood every three to four months.  Which is a surprise better than anything that comes in one of those special little aqua boxes.  I am now told, “She still has a severe form, and will be transfusion dependent for life, but she is coping better than anticipated.  Can we take her spleen out now please?”   I just smile and say, “Maybe soon”.  And then I get out the ol’ shovel again.  Burying, burying.

This week she is getting close to needing blood.  Already there have been tears over things small and slight, and then there have been hardly any tears over bruises large.  She is more needy of me, and wants me close, and I can hear her cough at night.  This cough will last until the day-after transfusion day, perhaps.  When I’m trying to do a neat plait in the mornings her head wobbles like one of those dashboard dogs, and we need to stop several times on the way back to the car after school for legs and heart muscles that need rest.

People at the shops will stare when they think I’m not looking, at her pale jaundice, and someone might ask, “What’s wrong with her?”  There will be tantrums over unsuitably cut up toast, or not enough carrot.  There will be challenges in getting homework done, and whinging over getting dressed.  Or undressed.  Or, anything.  I will say, “I think you’re a bit tired,” and she will scream back that she isn’t.  For tired is a sign that hospital is close.

I will have to remind myself to go easy, to relax, if we are a bit late for school or swimming, to let her know that if she feels fractious she needs to voice that in a reasonable way, rather than lash out at those who love her most.  I will have to bend a little, and she will have to flex a little, and we will get through these next two weeks or so with our hearts and tempers intact.

The countdown is on.

Are you a blood donor?  If you aren’t, please consider it.  Call 13 14 95 or click here.

Coco might just get  your claret…

…From The Ashers xx

So the kid has gone away to camp and I’m spending my day moping around the house like he’s moved out of home to go to university or worse.  I’ve been into his bedroom three times, ostensibly to put things away, I’ve re-read the book he’s writing about Minecraft (that I only slightly comprehend- it requires specific MC knowledge), just to try and get a sense of what he might be doing at camp.  What he might be feeling.  What adventures he is having.

I said this morning, “Quick. Photo opportunity.  Let me capture you in the Before.”  Usually he would try to spirit away, ’til eventually being forced into a grimace for my lens.

Instead he got very still and said, “Yes, that’s probably a good idea, because I’ll probably come back changed.”  I asked him how he would be changed.  “I’m not sure, and you might not be able to see it in a photo, but I’ll know.  I’ll probably be braver and stronger, you know, from the challenges, like, the giant swing, and stuff.  I’ll have to face the fear to get the exhilaration.”

What a weird kid.

But he’s right, on every count.  He can be a bit of a scaredy-cat with some things (like crazy rides).  And then mature and brave beyond his years with others (insights, being independent and self-determined, patiently waiting in all of the reception rooms with his sister for years, patiently waiting for puberty…)

So we took some pics.

A kid, ready for change

Now he’s gone and I’m sitting here in his bedroom that is so full of the empty, wondering how parents do this.  How do they send their children off into the world, to uni, to share houses, to the world?  Perhaps that’s what the teenage years are for, so they shit you so much that you can’t wait for them to leave.

Until they do leave.  And then you are left with a bedroom that finally smells better, but is full of dusty drum kits, fading Hot Wheels posters that are curling at the corners, and memories.  All of the memories.  Of sprained ankles and chipped teeth, muddy footy boots and magic shows, home rock concerts and errant bits of Lego, solar powered creations and tennis rackets and spy books and iPods and too-loud music and shrieking clarinets and pounding drums and dirty-guitar feedback and sandy floors and grotty science experiments.

The noise and the mess and the exploration of childhood. The fun and the joy and the laughter and the boredom and the exasperation and the explanations and the boundaries to be set, and then tested, and tested again.  The bedlam that fills your parental life and your heart so full that it might split it’s skin.  Until they leave, and it all drains away in that very next heartbeat, and you are left with a room.  Just a room after all.

This time, he will be back soon, before I even know it really, and I will take another photograph…this time.

We will examine that photo closely, he and I, heads bent together, short-sighted brown eyes squinting slightly, to see if we can see the markings of how he has changed.  For he will have changed, a little or a lot, and I wonder what our eyes will see.

Do you have kids that are growing up too fast?  Or not fast enough?

…From The Ashers xx

Last night was the coldest night ever invented.  Or something.  Which meant there must have been no clouds.  And around these parts that means one thing: beach day.  So we let these two Evil Geniuses prolong our mini-break (more about that later this week), and have a wellness day.  Some people just call it wagging of course.

We went to Asher Cove.  It is called Asher Cove because I named it, and then wrote this sign, so yeah.  Naming rights.

Asher Cove is “quite pretty”, so I took a pic to show you:

One day when I can be bothered I’m going to do that thing where you buy land in Scotland, and then you can call yourself Lady or Lord, by legally changing your name.  When I do, this cove will be my Kingdom (Ladydom?  Clearly there will be some brushing up on my lax terminology prior to this).

But I digress.

The Geniuses found a long flat rock that they decided was their investigation bench, and went about finding “interesting and investigatable things to investigate”.  So, as we are being a little loose with our terminology here, I suppose that is just what they did.  The “interesting things” were mainly shells, a feather or two and a tiny polystyrene ball.  The “investigating” involved them lining them up on the rock bench.  Best of all was when they found this “fossil”.  Liam was quite excited, and thought he might sell it to a museum for “heaps of money, maybe millions, enough to get a GoPro anyway.”

Check it out here, for free, while you still can:

The Fossil

So, yeah, clearly a fossil.  It became something quite precious to these intrepid investigators.  Coco did this “diagram” of what the organism would have looked like prior to it being fossilised:

Scientific fossil diagram

Clearly we have two future palaeontologists or scientists growing up in our home, such is their discerning and superior skill in rigorous methodology.  Especially useful is their ability to extrapolate simple findings to create complex ideas.  I’m sure you can tell by now I didn’t use the word “genius” flippantly before.  (I began to doubt the wisdom of us letting them have a day off from actual learning, as clearly they need every bit they can get.)

By and by, they had enough of their endeavours, had a fight over the fossil, lost it in the sand, and had to be separated before anyone got punched in the guts or nuts.  I know what you’re thinking: Parenting Geniuses.  And yes, I use the term loosely.

Don’t worry, it’s school tomorrow.

How was your day?  Cold?

Are you too raising Geniuses?

…From The Ashers xx

So we have a cat: Woofa Butterball Popsicle Asher.

(Not taken today)

We got her at a time when I maybe wasn’t going so well.

When you have a kid with a “thing” sometimes you can be a bit of a mental as you chisel away the entrenched stone of your heart that is made up of all the ridiculous notions of perfection you had, and sculpt yourself a new shape.  One that encompasses the reality of loving the kid you have.  I say “you”, but I mean “me”.  It was ME who was a bit of a mental.  I guess I was working my way through the stages of grief, but not of a loss of something tangible, but of a potential.  A potential life for our daughter that existed only in my imagination.

There was also the sense of loss in knowing that I would have no more children, for I couldn’t, once I knew that we both carried secret mutations on a precise spot on a particular chromosome that when coupled, would make a kid with a thing, one out of every four times.  Again, a loss of potential, a fleeting wisp of an idea of a baby that I allowed only to exist in my peripheral vision.

So when I saw that Ragdoll and her deep blue eyes- kind of like the eyes of a kid I know- I had to have her, even though it wasn’t the best time for me to be looking after another life.

And if you could see that kid with a thing cuddling that cat, pushing it in a pram or touching noses together, you’d probably agree it was a good choice.  Even if you think cats are a bit shit.

Her name was Popsicle when we got her, but we wanted to name her ourselves.  I wanted to call her Johnno or Chairman Miaow.  Liam wanted to call her Fooey Fooey Meow Meow, and Nath didn’t give a toss ‘cos he hates cats.  But Coco wanted to call her Woofa, so of course that is what she was named.

Woofa is the laziest cat in the known world, and usually comes in around 5pm on a big day.  Today she didn’t.  And then tonight she didn’t and then late this evening she didn’t.  And even though I profess not to like that cat, I started to feel sick at the thought of what we might be scraping from David Low Way tomorrow before the kids got up.  I called her one more time tonight before bed, even doing the silly “pusspusspussPUSS” thing that no self respecting cat has ever heeded.

And she came.  She came all wobbly and miaaaoww-ing and strange.  I couldn’t tell immediately what was wrong although I knew it was something.

It’s her eye.  The entire thing is full of blood, so much so that at first when I held my breath and prised the lids open I thought there was no eye, just a dead red socket of eyelessness.  I’ve looked three times and taken a photo and sent it to the vet, and I’m still not convinced that what I’m seeing is her eye.  Her azure is crimson.  I want to quote Lady Macbeth and say “The multitudinous seas incarnadine, making the blue (sic) one red”.  Or something.  A bit melodramatic, but it’s her eye.  Or not an eye.  I can’t decide and I can’t sleep yet until I look one more time and be sure that someone hasn’t just done a King Lear and an “Out vile jelly” to it, like I first thought.

Seems I’ve read too much Shakespeare and Stephen King (the World’s two greatest storytellers, by the way) for sleep to come easily tonight. (But of course the bloody cat is asleep next to me on the Time Capsule, dreaming the dreams of the innocent.)

I guess you don’t see with your eyes when you dream.

Do you want to see the eye photo? (You know you do)

What are you, lovely readers, Team Dog or Pussy Lover?

…From The Ashers xxx

Look, I know it’s the maximum in indulgence, but I guess this is my blog after all, and I really want to share some of the gorgeous pics that beautiful, patient and talented Mazzy Fine Photography took for us last week (you may recall it was our ten year anniversary…or not, it’s not like I’ve mentioned it very often.)

The Scene:

7am, hot, very bright and sunny, two* reluctant adults, two hungry kids who had been bribed with breakfast at their favourite restaurant (Bistro C) if only they would get “just one more photo, smiling at the camera, don’t do that silly arm movement thing, yes I know your eyes are burning, smile Liam and don’t hit your sister, look up Coco.”  Oh, and randoms who were just trying to get on with their day and didn’t want to be obstructed with people promenading and taking photos on the boardwalk.

So yeah, Mazzy is one patient lady.  In the short time available she managed to get some rippers, all actually better than our original wedding photos. Wish we had Mazzy back in the day, as the young people say.

Feast your peepers on these babies:

Then and now

Ten years later

All looking out, in the same direction…
Team Asher

Some children are just ratbags

Okay, that’ll do I guess. Let me know if you want Mazzy’s details (she is too slack to have a website yet).

Before I go, I want to share with you the best comment of the day, by a lady we haven’t seen in, well, about ten years (her husband worked with Nath way back then, and they came to our “Wedding After Party” which we had back up here on the coast after our honeymoon), she was walking past, saw us and exclaimed, “Nathan, Alison, oh my god I was just thinking it looked like you, I came to your wedding after-party, you both look exactly the same, well pretty much exactly the same, I haven’t got my glasses on, but pretty much the same, other than you Nath, you’ve just got a bit more snow on the roof.”

So, in this, the final anniversary post: Happy Anniversary Wrinkly, Happy Anniversary Snowy. I look forward to walking along the next ten years worth of beaches.

Maybe to this: Our Wedding Song  (We learnt a Foxtrot to it… I couldn’t do it then, and I can’t do it now, but bloody hell, that music makes my heart do a little dance.)

Where-ever the path may lead….

* That’s clearly a lie, only one was reluctant and I guess you know that was me, as I’m so shy are retiring, like.

Special thanks to Amber for all the pinterest-y research and sharing the of photo styling ideas. Mwah.

How good is Noosa Main Beach looking?

Have you ever been to Bunnings?

I seriously hate that joint.  With serious and hate.

Why do the aisles not line up?  Why is the coffee so awful?  Why does it smell so bad?  And what scorcery is it, that allows adults, dressed in bright red, to be so camouflaged by a bunch of tools, when their service is required?

I am alone in my Bunning hatred over her at The Asher House. On any given weekend, at least one person will say “Let’s go to Bunnings”.  The kids love to play there, Nath loves the rows and rows of tools that I won’t allow him to buy, and me?  Well I don’t love one single thing.

In fact, on a lazy Saturday, the husband thinks Bunnings ticks all of the parenting boxes.

• Exercise for children, by playing in a “park”? Tick
• Creative stimulation for children, by doing craft? Tick
• Purchase of some thing or other for home improvement, in the hope of getting laid? Tick
• “Healthy” lunch from sausage sizzle? Tick
• Donation to charity via said sausage sizzle? Tick

Apparently everybody wins.  As long as I don’t have to go, that is.

So tonight was Halloween, and I was working until about 8.30pm, so ‘weening was up to Nath and Coco, (Liam is at school camp: my heart lives outside my body right now, but more of that another day when I can breathe again).  Those two little blue-eyes colluded together and chose what they would get up to.  They spoke in whispered tones and made their intricate plans, before announcing to me, “We’re going to Bunnings.”

WHAT?

Yep, apparently that cesspit of failed home improvement attempts also does celebrations: Easter, Christmas, Halloween.

So they went off at 5pm, excited and costumed. Things looked at little like this:

They arrived home well after 8pm.  Coco usually goes to bed at 6.30pm.  So I’m guessing they had some fun.  There was face-painting, craft, a jumping castle, billions of kids and a free sausage sizzle.  At the hardware store.

When I was tucking that strange li’l punkin-fairy-thingy up in bed, I asked her if she had a fun Halloween.  “Oh Mummy”, she said, “it was the best Halloween ever.  I love Bunnings Warehouse. The lowest prices really are only just the beginning.”

So there you have it.

Maybe the joint aint all bad.

(And who says my kids watch too much telly?)

Do you do Halloween?  

What did you go as?