A brave kid in her Brave shirt

Some people measure time by the seasons, others by the phases of the moon. Some tick off numbered squares on a glossy calendar from The Courier Mail, or on the flick of an iPhone screen. I measure it by the cycle of the anaemic vampire child.

The new blood brings a thrilling energy of high-pitched hysterical laughter and cartwheels into somersaults into squealing Whip Nae Nae dance-offs. Those fresh red cells stretch the length of our days, where I can ignore the trauma of the tick tick tick, and we can listen to the rhythm of our bodies of when we wish to eat, sleep or sing, rather than clock watching to avoid fun stepping off its narrow tightrope into the abyss of hyper-fatigue.

The middle blood is just that. It’s the average that most people take for granted and that I sometimes crave like chocolate. It’s the time when the kid is like all the other kids, in the ups and downs of life and living. It’s made up of moments that are mundane and magical, boring and beautiful, and nothing means any more or any less than what it is in the moment. If she scrapes her knee skateboarding, I don’t rush to stop the bleeding like a loon, imagining that each lost drop is dragging us, minute by minute, closer to a transfusion. If she cries over an overcooked egg that just isn’t dippy enough, I know it’s because she is being bratty, not that she just can’t cope with one.more.thing.

Then the middle makes way for the end, and the weights start to settle on my shoulders. I study changes in the cadence of her breath like a crow at the beach-bins waiting for a stray prawn shell. I stare at the whites of her eyes being stained yellow with the bilirubin, drop by drop. I look for the underlying pallor in her cheeks, as gold replaces pink. I pull down her eyelids and watch, as the red fades like Nan’s curtains, whilst the oxygen skitters away to more important parts of her body.

The end part knows his stay is brief but impactful, so he makes his mark on the furrow of my brow, the skin of my face, the shadows in my collarbones and the pigment of my hair. He sucks away my vivacity as I try to wrest it back, night by night by night. He tries to leave as big an imprint as he can, perhaps to provide balance or understanding or compassion or expansion (which is what I say on my lighter days), or perhaps he’s just a prick.

Eventually the eventual happens and we start the process of transfusing. I make calls and wait for replies. We get blood taken to be tested and matched and mixed for her veins. We wait for a bed and then we wait for a successful puncture and we wait for the delivery of the donated ruby red cells. Then we watch and watch and watch like the 2am bourbon-fuelled blokes at the Rolling Rock, looking for any perceptible signs of things awry, ready and waiting to pounce.

After a time there is no need for pouncing. No more checking. No more waiting.

The blood flows and flows until the bags are deflated and her body is plump with the excess fluid, and the pressing on my shoulders and my mind grows wings or dissolves or something, and I won’t give Pyruvate Kinase Deficiency another thought for at least a month.

As the doors of the hospital puff shut behind us, we step into the fecund, humid air of freedom and Sunshine Coast sugarcane, leaving our baggage behind.

And we start our whirling dance of life. Like dervishes.

With abandonment. And redemption.

DONE

…From The Ashers

If you would like to help a kid like Coco, and a Mum like me, please consider giving the gift of blood.

Call http://www.donateblood.com.au on 131495 to book an appointment.

Thanks!

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.