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!

I didn’t get around to wrapping up the week with the Hitwave this week. The Apple was being a little tetchy, and quite frankly, I didn’t have the mindset to sort it out. You see, when we have a transfusion looming, there is an undercurrent of stress in my life that doesn’t properly surface until that cannula is finally in place and the ‘danger period’ of the first bag of blood is over. It’s only then that it comes frothing to the top, and I almost cry with the relief and the gratitude of making it through. And that’s when I exhale. When I know we haven’t drowned.

In the week or so leading up to transfusion day, the only times I really stop flipping the scenarios over and over in my mind are when I’m at work, or when I’m tapping away on these keys.

Blogging as therapy? Say yessir. Work as an escape? You betcha sweet corpuscles. And so in these weeks- the ones at the pointy end of the quarter- I am even more grateful than ever to have such wonderful things in my life. Places where I can be in the moment, focussed, and in flow.

I’m pretty lucky to have these two domains, these things that I see as my life’s work.

It’s been a big day for my little girl and I. If you follow my spamming on any of the Socials, you would have seen some of the details. You might know that they couldn’t get the cannula to pierce a vein cleanly: not the first, the second or the third time. It took four punctures, a new doctor, my insistence of using the Accuvein (the infrared vein finder) and a smaller cannula, to finally get the sucker in.

Coco is only seven years old. I think that is a lot for a kid to go through.

Showing off the new blood

So today, I have two hits:

1. I am insanely grateful to the wonderful Cass, who played and played and sang her heart out during all of this.

Cass is the music therapy chick at the hospital. She is sweet and gentle and kind, and a bit of a hippy. If I am to be honest here (and what is the use of this blog if I’m not?) I thought she was a dickhead when I first met her. She came into our room, at a particularly harrowing moment, espousing the benefits of music for kids undergoing procedures.

I wanted to tell her to fuck off.

We were right IN something. Something BIG. Bloody pop tunes weren’t going to help our situation. I gritted my teeth and said, sure, play if you want (and in my head I probably called her a few names).
And so she played.

And it made all the difference. She has a voice of an angel and an energy to match, and Coco resonated with her immediately, and the beauty of Cass calmed her, in a beat.

So now I am in love with Cass and her presence. Today she played everything Coco requested (except that song from Frozen, but ain’t nobody got time fo’ dat): Riptide, Happy, Eye Of The Tiger…. Plus an improv of her own about Coco’s favourite things, where we yelled out stuff, and she made it all into a song.

Cass, I don’t even know if you are real, or if I dreamt you up, but bloody hell, you ROCK.

2.  Blood donors.

Of course.

I wish you could all see the change in our kid today. She is strong and brave and tolerant, and so if you met her earlier this week you would think that she’s just a normal kid. You might not realise that she really was just going through the motions, at times. The motions of breathing and walking and eating. Sure, she still laughed, she still had fun, she still raced to watch Family Feud every night, but tonight? Oh man, that kid is ALIVE.

She is drunk on life and energy and joy. I wish you could hear that laugh of hers that is ringing out over Sunrise Beach tonight, because it truly is an elixir for the soul.

Perhaps if you close your eyes you might hear her at your place? I can tell you right now, it’s worth a try.

I couldn’t get a good pic- there was “too much” laughing!

…From The Ashers xx

As you RRs can tell, I’ve devoted this week to posts about transfusions and all things bloody.

The reason of course is that blood stores are at critically low levels this week, and as a mother of a vampire who drains these stores every three months, I have found myself in a strange situation where I am, by proxy, an advocate for the Blood Bank.  Of course Nath and I give blood ourselves every three months, so we give back the amount that Coco withdraws.  But still, not everyone has the luxury of being able to do that.  And so there is a deficit.

We do what we can to spread the word: we give talks at Thank You functions, we appear in the Blood Bank magazine, we go in the paper whenever they ask us, acting as part of the propaganda machine that runs these kinds of things.  And hopefully, now and again, we touch your hearts in such a way that you will be motivated enough to take an hour or so out of your day to donate 300mls of your most precious of fluids.

So here is another post from the vault, a more recent one, about Adaptation.

And remember, blood stores are critically low at present.  If you can donate, please do.

This week.  

Call 131495 to save three lives.

…From The Ashers xx

The blog today is one from the vault: A story about blood and transfusions and little enzymes.

Click here for Just a Little Thing.

And by the way, Coco isn’t getting her transfusion for a few more weeks, but given the critically low levels of blood stores this week, I thought it was worth remembering how a little thing like a giving blood can mean so much to a little person.  Coco might not like getting transfusions, but she definitely loves how she feels afterwards.

If you are able to donate, please consider doing so this week. 

…From The Ashers xx

Some days, when you have a kid who has a thing, and when the thing gets too much, she can cry because your extra sensory perception wasn’t working properly, and you gave her porridge instead of corn flakes, or too much honey, or not enough honey, or the wrong coloured straw to drink her smoothie (that you really want her to drink, because she needs every bit of help she can get right now), or you are helping her to get dressed because she is so damn tired, and you choose the mauve knickers instead of the pink, all before your morning shower.  These are the days that you know you have to tell her.  It’s time to tell her.  Really, it’s unfair not to tell her, that today will be the day when she gets the blood taken for a cross-match.  But still you waver.

These are the days that when all the other kids are jostling around, and straggly lining-up to go into class to start the last day of school, you will be sitting in the school car-park after dropping the big one off, applying Emla to the tender skin of the inner arm.  Looking at the those thin blue streaks and hoping one of them will be plump enough to puncture.

These are the days when all the other kids are sitting on the mat in a circle, perhaps thinking about who they will play with at little lunch.  Your kid is sitting in a hospital waiting-room that smells of chlorhexidine and the ghost of urine, hopefully also thinking of who she will play with at little lunch, but more likely thinking about nurses and tourniquets and things that pierce vulnerable flesh to get to the life blood beneath.

So these days are the some days when you think it could all go pear-shaped.

And then it doesn’t.

You tell her that it’s today, and she doesn’t lose it.  Instead she looks at you, eyes so big and blue, innocent and wise all at once, sclera so yellow it’s almost green with the funk of excess bilirubin, and says, “Yes, I think I am ready for a transfusion, I pulled my eyelids down yesterday, and looked at my conjunctiva, look, they’re really pale.  I must be low.  Even though I’m not really that tired, only when I have to stand up for too long, then my legs get all wobbly.  And what is the plural for conjunctiva anyway, do you think it’s like the word octopus?”

These days, your heart leaps and lurches all at once.  It zings with relief, at the miracle of adaptation.  That the plasticity of the brain, and the wiring of the body, can allow a human adapt to almost any situation, given time.  Given the right conditions.  And in that very same moment, your heart feels denser than element 117 and just as unstable, as you yearn for a life for her that doesn’t know anything about haemoglobin or conjunctiva or local anaesthetic creams or blood typing or even hospitals and their strange layered smells.  You wish all there was was little lunch.  And then big lunch.  And shithouse spider craft.

Okay, this could be the last in these transfusion posts for a few months. Thanks for humouring me. 

…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