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Blood.

It is our life force.  It is a clever fluid that carries oxygen to our cells.  It takes our every breath, to every part of our bodies.  And then it lets us breathe out again.  In.  And out.  In.  And out.   And repeat.

Without it our cells would be gasping, asphyxiated.

And we would die.

Blood.

It looks alarming when we see it outside the precious tubes of our arterial network.  It is so bright, so vivid, and so shiny that it almost seems to have a life all of its own.  If you look at a drop of blood closely it seems somehow thick with vibrancy and hope.  A crimson lustre, full of promise and potential.

It scarlet-shouts at us: lookatme lookatme lookatme.  Full of its own importance, for it knows: without it, we would die.

Blood.

Most of us don’t think much about it.

From time to time some of it may leak out of us, in scratches and cuts and scrapes, and we wipe it efficiently away- red blots on white tissues- and discard it without a mind, for we know our clever bodies will make more and more and more.  And repeat as required.

For without it, we would die.

But sometimes people can lose more than they can make.

And sometimes, some bodies have diseases that break down the blood too quickly.

And some other people, through no fault nor folly of their own, make thousands and thousands of the ruby red discs, but those bloody little frisbees are left wanting: wrong shape, fuzzy edges or missing some parts, so the intelligence of the body sends them to the liver.  For termination.

And yet, without these biconcave saucers: they will die.

This child is one of those.

Thankfully, she doesn’t need your blood this week, but one day soon, she will.

Please, roll up your sleeve, and share some of your carmine elixir of life.  You’ll make some more, I promise.  In fact, you’ll do it without even knowing.

She, however, simply can not.

Blood stores are at a critically low level at present, so you will be hearing me parp on about this all week.

Please call 139596 to make an appointment, or visit the Red Cross Website to find a location, check your eligibility, or share this information with your friends.  

Not everyone CAN donate, so those of us who are able to, have the ability to SAVE A LIFE… I think that’s a super-power.

…Thanks and Love, From The Ashers xx

If you heard a really loud bang / gunshot / thunderclap sound this morning, don’t be alarmed, it was just me.  Patting myself on the back.

You see, we still have baby monitors in the children’s rooms (Because: mental), and so, as they were getting ready for school this morning, I could hear some lovely singing coming from their rooms.  They were harmonising together in a lovely unison, that can only be achieved with the voices of siblings (Think: Jack and Meg White, Vicka and Linda Bull.. You get my drift.)

The reason for my back-patting-ness, was that they were singing The ABC song.  You know the one, that ends with “Now I know my A-B-Cs, next time won’t you sing with me.”  I was thinking to myself how lovely it was, in this day and age, that they had managed to maintain their innocence in such a world.

I felt like had achieved the trifecta this very day:

1. Children that were independent enough to be getting themselves ready for school.

2. Children that were naive and shielded enough from the horrors of the world that they would sing such a lovely little litany.

3. Children who enjoyed each other’s company so much that they would sing sweetly to together, whilst happily getting ready.

So I gave myself a big pat.  A really big one.  I wondered if anyone else was as good a parent as me.  I mean “Us”.  (Of course.)

They got to the end of the song, and where I expected to hear the familiar lyrics, they sang something else.  The quality of the baby monitor wasn’t sufficient to pick up the exact words, so I went in to see what they were singing.  It went a little like this:

“Now I know my ABCs, 

Gummy Bears are after me,

One is red,

One is blue,

One is peeing in my shoe.

One of them has got a knife,

Now I’m running for my life.”

As Liam mimed something that would have put the shower scene from Psycho to shame.

Nothing wrong with my our parenting.

Are your kids also psycho?  C’mon, tell me they are.

…From The Ashers

Does the Mumma Guilt ever go away?

Are there any who walk among us who have slain the guilt dragon?

And if it wasn’t Mumma Guilt, would I have some other type of guilt: too fat, too slim, too lazy, too poor, too unfit, too ______ (insert your own negative concept here).

It’s the last day of the school holidays here, and we’ve had a blast.  Lots of laughs, lots of hugs, lots of jostling for attention and figuring out where we fit in the scheme of things (because yes, in my world, even sibling fights and annoying your parents and pushing boundaries are imperative to whole person development- and that’s just for me), lots of busy days and lazy days.  We have been out all day, and also stayed in our pyjamas.  We have gotten Coco a transfusion, been to the city, flown down to Newcastle, tended herb gardens, played in the sunshine on the beach, at the parks, in the trees.  We have defied gravity riding skate-boards down hills, ridden bikes, shot for goals, danced to new music, seen movies, visited cafes, had friends over, sat by open fires, toasted marshies, and sat staring at the water.  We have watched sunrises and sunsets, baked sweet treats, been to the shops together, written diaries (or blogs), read books together on the couch and played board games (yes, even frigging Pokemon).  We have laughed and sometimes cried when we drank Cherry Beers and wished our friend was still alive.  Hell, we have even done some craft (‘Thanks a lot” for this book from the the gates of Hell, Lara).

189 pages of unmitigated pain right there. I suspect this “text of the devil” deserves its own post…

Even with all of that, I have a strange feeling of unease, because I really, really need to get something done here at home today, and so we have decided to have a day at home, for this last day of the holidays.  So the kids will mainly amuse themselves.  Which will mean gaming.  Sure, they will also read a bit, eat a bit and run around a bit outside, but mainly, I know from experience, they will be “joining game”.  That means Minecraft.

As I (neglectfully) type they are in a room together, laughing like loons, at two Minecraft puppies named Chocolate and Cookies who are apparently jumping all over the mushrooms houses.  Or something.  They came out a moment ago, pissing themselves, garbled some unintelligible computery sounding phrases to me, and ran off, giggling.  Apparently there is a new update for Minecraft PE (Pocket Edition) and it is the best ever update.  Ever.  Something something, flowers, something, mushroom houses, something.

Apparently this is good fun..?

The laughing warms my heart.  Assuages some of the guilt, but not all.  Something, somewhere is telling me that I shouldn’t be allowing so much screen time.  That they should be doing something… else. Creative? Meaningful? Outside?

I remember as a kid my Mum had a friend who was always interrupting me from my love of reading and ushering me outside to “get some fresh air”, as if sitting quietly, independently amusing myself with my book friends, and not getting into any trouble was somehow shameful.  Something to be reviled not revelled in.

Some guilts go deep I guess.

So excuse me, whilst I open the doors and let in some ‘fresh air’.

Mine away kids, Craft away little ones.  I’ll deal with the guilt.

And if you need me, I’ll be right here.

Not.Moving.
(Except to get cups of tea to sustain me)

Do you too have “The Guilt”?

What about? And do you know how to make it go away?

…From The Ashers xx

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