A thing happened today on Twitter.

I found out that a lady who I have been reading for the last year or so, has had a tragic suicide in her family.  I don’t know this woman, not really, not IRL.  But I have been following her life for over a year, both on her blog and in her tweets, and so I feel like I know her.  I’ve watched her travel, seen her grieve, been sad happy glad scared relieved, as her life has been laid out before me.  I have laughed and cheered and cried right along with her for quite a while now.  In fact, I suppose I feel like I’ve shared more of her life than some of my IRL friends.  I even know things about her past.  Her wedding day.  Her childhood.

We have corresponded a few times in the comments section of her blog, and then via email.  Not much, really, but I feel like I get her.  And so when my friend Hayley died, I made sure I told her.  Because I feel like she gets me.  And she did.  She said exactly the right things (typed exactly the right things).  Just like I knew she would.  She cared about the right bits.

Today I’m so sad for this person I’ve never even met in the skin.  I want to make it better for her, disappear some of her pain, just like I would for a flesh-friend.

I suppose she’s like a pen-pal in days gone by, but accelerated due to the immediacy of our post.  We can get to know one another so quickly, in 140 characters, click, send.

Today has reminded me of the power of the written word, in the ways that it can touch our hearts and make us feel.  Transform us even.  Make us laugh.  Or cry.  Wring us out.

Letters, books, emails, posts, tweets and texts.  Somehow we can get a sense of knowing someone that we’ve never met, not in real life.

It’s a strange thing, this brave new world we’re in now.  Strange days indeed. Most peculiar. (John Lennon: prescience?)

Vale Eden’s Brother.

Today was transfusion day.

My Girl

By the time you read this it will all be over, and my girl, will be tucked up tight in bed, dreaming of who knows what.  She usually stirs quite a bit, this night.  If sleep is the subconscious downloading, then I guess she has loads to down.

When she was a bub, we would have fractious nights in the lead up to a transfusion, but the night after was always the worst for me.  Leaving the hospital that night was always wonderful.  I’d sink into the seat of the car, Coco all bundled into her capsule, and I’d just sit.  I would bask.  In the relief and the relief and the relief.  There was no other time in my month-or-so quite like it.  In that car, at that moment, we were as far away from the next transfusion as we could possibly be.  Every second from then on moved us closer to the next one.  So I would bask.  I would waste some of those precious moments, allowing the soothing to trickle over me, knowing that the night ahead would be long and strange.  That she would wake and cry and stir and wake.  She would need feed on top of feed to try and rehydrate after the mid-transfusion diuretic.  Nappies soaking.  Mind churning.

Things are easier now of course.  We have grown used to the process, and the procedures.  She told me today that if she looks at the cannula before it goes in she feels “all funny in her tummy” and that even though she can’t feel the blood actually going in, it hurts if we move the tubing too much.  These are things I haven’t known before.  So perhaps it will get easier still.

She has a good memory, my girl.  She recalls all the parts of these two days.

On the first day we get the blood taken for cross-matching, and she remembers the time her skin got pinched and drawn into the tourniquet and had to be pulled out.  She remembers the time blood went spurting everywhere.  And she remembers all the times, like yesterday, when it takes one or two or three attempts to get that sample out.  So sometimes she might cry when it doesn’t seem necessary.  Because she remembers well.

On the second day we receive the blood.  We present to the hospital and we wait until hand-over is done and rounds are completed and then, at last, it is our turn.  She is on edge until then, my girl.  She knows what is coming, and that no amount of playing in the little park, or watching the fish in their tank will blunt that feeling of foreboding, or the feeling of that needle piecing the plump baby flesh, just near her dimpled knuckles.

She remembers well, my girl, so she tells the doctor that her right hand is the best one for puncture.  “This vein, right here”,  she says, tracing the blue feint on the dorsum of her hand.  They hear but don’t listen, so the left hand is tried first.  Then back to the right.  Usually she starts crying at a reasonable volume, well before they take the first stab.  I lie on top of her, and hold her arm firm at the shoulder, to make sure she doesn’t move, but she never does.  Even as an infant, when they wanted to wrap her up like a cat in case of writhing, she never did.  I know without looking when the needle goes in, and then, when they blow that first vein, as her screams spike and spike.  He eyes widen, as big as the moon, as if she is surprised, still, at how it feels.

This day, it was different.

Earlier on, the music therapist had spent some time with us, singing to Coco, playing and showing her instruments.  Calming her.  She asked Coco’s favourite song, and I said: The Lion Sleeps Tonight, regretting it instantly, as the therapist played that stupid song over and over, those wimmewehs scratching on the blackboard of my jangled nerves.  But it soothed my girl.  She snuggled into my arms, and as that beautiful hippy played and played, and it was true that music is a salve for the soul.

When we went into the treatment room we played the wimmewehs on the iPod, and as that first vein was blown, she cried, but perhaps not as much as she used to.  Calmer or not, there’s only so much sleeping one lion can do, so we changed to Green Spandex.  The funeral song, from the when that feels like yesterday.  We stared into each other’s eyes, my girl and I.  I think she was expecting me to cry, and I know I was expecting her to, both for different reasons.   Blue eyes locking onto brown.  We couldn’t be more different sometimes, my girl and I, but we held our eyes, and we held our strength.  I’m sure we both felt like weeping, for some reasons different, and some the same, but we didn’t.  We breathed deeply and we held each other and we waited for the pain to pass.  It hurt.  But we got through another little bit.

Sometimes we couldn’t be more alike, my girl and I.

Blue eyes and brown

If you have already donated blood in the last 3 months, Thank you, From The Ashers.

If you haven’t, you could call 13 95 96 to find out how.

A little thing with a little thing…

We have a little girl who has a rare little thing called Pyruvate Kinase Deficiency.  It doesn’t sound like such a big thing, just a little deficiency, but it turns out pyruvate kinase is kind of important.  It turns out that if you have red blood cells without it, your spleen breaks them down, and if it breaks down enough of them, you end up anaemic.  So every three or four months or so, our rare little girl, with her rare little thing needs a bit of a top up.  With blood.  Maybe blood from you.

She always says she’s fine, and that she doesn’t need a transfusion, but sometimes when you’re six years old, the fear of the needles just might sway your thinking.  We always ask her if she thinks she’s ready for a transfusion, knowing full well she is, hoping that the day will come when she is able to weigh up the advantages and realise that she does need the blood.

We haven’t gotten there yet.

So this morning we made the decision.  The thing that parents all over the world have to do every day.  To make a choice that your kid will cry and sob and plead for you to change your mind about, but one, that as the parent you know is in your kid’s best interests.  It might be about getting some kind of surgery or medical procedure, it might be about eating vegetables, being home before dark, going to bed at a reasonable time.

Sometimes being parent is fun and easy and things just seem to flow along without incident.

And then sometimes it can be a bit hard.

Sometimes your little girl will look at you with her big blue eyes, her sclera all yellowy-green from the jaundice that heralds the end of this cycle of blood, with tears running down her golden little cheeks, and say, “Please Mummy, can I go to school today? I don’t want to go and get the blood cross-matched.  My haemoglobins are fine.”

And your heart breaks open just a little bit.  Partly because you know you can’t grant her wish of going to school today, like all the other carefree children her age, who right now, might have as their biggest worry whether to take the red or the green handball to play with at little-lunch, but also partly because you know she already knows too much about the workings of a hospital.

But mostly because you know that this is not the last time she will have a transfusion.  She will have them again and again and again.

Hopefully one day it won’t be this hard.

The Red Cross ALWAYS needs blood. They don’t need it one day.  

WE need it today.  

You can call 13 95 96 to make an appointment.

Today I had a day off.

No, I mean I really had a day off.  I slept in a little (for Queensland that is… it was 7am, but that’s a sleep in up here), I had coffee, the husband cooked bacon and eggs on the barbie, we spammed about, read the papers, weeded and cleaned up the garden, did a few loads of washing (it was a shit-hot wash and dry day today), swam in the pool, played in the cubby, sat together on the couch.

I did the food shopping online, cooked tomorrow night’s dinner, baked one batch of biccies, watched some Elementary and read a bit of a novel I’ve been meaning to read for ages. That’s it.

Didn’t even leave the compound.

Looked at the phone twice.  Didn’t tweet at all.  Did one FB post and liked one other.

The days are so long and so languid and just so lovely when you really have a day off.

My brain usually doesn’t work that way.  Even when I’m sitting still I’m planning my next move, or the most efficient way to complete a series of tasks.  Or I’m thinking of a new blog post, a funny tweet, something to do tomorrow, something I should’ve done yesterday.

But today I was still.  My head was empty.

Tomorrow it will be full again.  There will be calls to make, appointments to organise, blood to be given and then received.

It was nice to be still.  I might try it again one day.

What did you do this weekend?

Here it is, the moment you’ve all been waiting for, the hits of the week:

1.  My new stubby holder.  I don’t mind a cleansing ale on the odd occasion, but I do NOT like drinking them nude.  This baby has everything I want in a stubby holder: pretty colour: check, skinny, so it can fit in a Corona without slipping out: check, some kind of advertising from some shit tourist attraction: check, and most of all, it has my name on it.  The line “This drink has my name on it” will be trotted out for years to come.  My Friend said it has Nathan’s name on it too, but I’m ignoring that joke.  I won’t be out-joked when it comes to my drinking accessories.

 2. And whilst we are on the subject of beer, I think “My Wife’s Bitter” deserves a mention. Delicious, and yes, another hilarious joke name.  If Nathan had’ve purchased it, the “Cats of Australia” might have come out, but seeing as I did, it was funny.  And mine.

A perfect accompaniment to our lazy Tuesday dinner of beef burritos (no beans) from Taco Boy at Noosa Junction. Mmmmmm.

3.  Okay, so it appears there is an alcohol theme going on here, I blame Friday night and being forced to watch Better Homes and Gardens whilst I wait for my dinner to be delivered to the table.  But check OUT this Cosmo.  Served up to me sitting on the deck at Angourie Rainforest Retreat after a gruelling week.  What more could a lady such as myself want?

4.  Tim.  I don’t know why, but this bugger Tim just makes me laugh.

5.  Home.  Glad to be back.

Do you go all “Cats of Australia” if your husband shits you?  

“The Cats of Australia have made their choice.. Snappy Tom, Snappy To-om”

PS And WHAT ABOUT the movie Jaws 2?  It’s on the telly right now, and my GOD that shark is relentless. Kids are copping it all over the place.  I may never swim in the open water again.

Hi there y’all.  I’ve had a bit of a big day* and don’t have the time or the energy to get you a well constructed, hilarious, heart-wrenching or warming post sorted out.

So in lieu of a blog, I give you This . Someone else who had a big day.

May your intestines flow freely and your Friday be happy.

*A big day from work,  not from pooing. Just work.

Ever overflowed your toilet?

Thanks to  AmosKeeto for the link