Sometimes life is just about perspective: how you look at it.  Something you dread, can become something to covet, if you just look at it from another direction.  Perhaps.

This week our youngest kid will be getting a transfusion.  If you are a RR here, you will know all about it- that she has a rare type of anaemia that requires a few transfusions per year.  When she was younger I would approach this week firstly with denial or anger, then fear and vulnerability.

These days we have a better handle on the whole thing.  We are accustomed to the process, and we feel we have a lot more input over how it all goes.  We get to choose the transfusion day, so we can plan our lives a little better.  We have a home test kit so we can keep an eye on her, and we don’t have to be too worried about plummeting haemoglobin.  I can’t yet say we can’t wait for transfusion day, not really, but in some strange and wonderful way, we sort of look forward to it.

We have already been shopping for a new outfit for her to wear on the day (because shopping heals most things that ail you), we have chosen what books and craft we will take in with us for the long day, and we have something special planned for the days that follow, where she will be in the very pink of health, and back to her normal self.

And then, for me, there is the lure of relief.

The moment that the car parking ticket gets fed into the machine is probably the best moment of my year, every time it happens.  I know as I push that little white slip onto the lurid yellow slot and the barrier comes up, I won’t have to think about red blood cells and jaundice and liver function and bilirubin and haemoglobin and erythropoiesis and fevers and immune system compromise and all of that for another two and a half months.  And that is something to savour.

It’s kind of like we get a New Year every three months.  There is a sense of relief and relaxation of a job completed, as well as a feeling of rejuvenation.

It’s like we get to start over.

In the car on the way home we will chat about all the things that we will do,  now that she is full again.  She will have aspirations of cartwheels and tennis and holding her violin up high, just like the other kids.  She will admire herself in the mirror and see a healthy, pinkish tone, just like the other kids.  She will laugh and cry and be sweet and kind or have tantrums, just like the other kids.  She will maybe stay up a little late, or get up early, and we won’t be so nervy about it all, just like the other families.  And I will hug my girl and appreciate her for who she is, just like the other Mums.

…From The Ashers xx

Today we celebrated the Winter Solstice.  Yes, yes, I know that technically it was on Saturday, but I was working, so shhh, the kids don’t know that.  It was TODAY, okay?

As you may have guessed, we have a programme, and here it is:

1. Watch the sun rise at Sunrise Beach.  Yes, this was early.  And cloudy.  So we climbed on the seats instead, and yelled a bit, because there was a campervan that looked all tucked up right near us.  I suspect free campers at MY beach access.  Hippies.

2.  Go out for breakfast at Bistro C (which looks onto Noosa Main Beach).  This was much more my style.

3.  Wear something yellow.  I wore a hair clip of Coco’s as a brooch.  And I forced certain family members to wear fake sunflowers in their hair for a few minutes. That counts.  Never let it be said I don’t go all out for this stuff.

4.  Listen to our Solstice CD, which has contains classic songs like “You Are My Sunshine”.  We all sighed with relief when it was finished.  All thirteen tracks.  Who thought of this tradition?

5.  Bake sunflower seed biccies and decorate the house with plastic sunflowers.  Box up said biccies and give them out to unsuspecting others, because frankly, they are a bit shit.

6.  Watch the sun set.  The highlight.  Hands down.

This year we had an added bonus of sharing a lovely lunch cooked by one of my gorgeous friends who reports that she “loves cooking and entertaining”.  So clearly, she is a complete idiot, but man she can cook.  We had delish food, wine, more than a few laughs and two beautiful surprise guests.

The winter solstice has well and truly ended here.  Everyone is abed- the kids exhausted, and Nath with what could quite possibly be a terminal case of Man-flu, leaving me with some repeats of Black Adder and a Hot Toddy.  Winter, generally you suck, but today, you weren’t all bad.  The 23degrees didn’t

Roll on Summer, roll on.

Do you celebrate the solstice (because it means Summer is on its way)?

…From The Ashers xx

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