Transfusion Day: Before

In the lead up to Transfusion Day, things get a little tetchy around these parts. People might cry if they don’t get their hot chocolate in their favourite Bunnykins cup, or if the hot chocolate is too hot, too cold, too milky, too chocolatey, stirred too much, not stirred enough, or it is served without a spoon (Bunnykins of course). I can’t even begin to imagine what would happen if it was revealed that it was made with Oat Milk. So the adults do the best we can to make things smooth and easy and not get cross with her for feeling overwhelmed, because we know that she is exhausted.

As are we.

In the lead up to Transfusion Day, I get a little tetchy too. I don’t care much for frivolous conversations, and unless I’m at work, my mind finds a way to wander up and down the long white clickety-click lino corridors of the Children’s Ward, hovering over the stifling walls of the treatment room, where the child who will always be my baby will soon have her golden skin pierced and pierced and pierced until the cool smooth of the needle can slide along the length of a vein.

And so we wait.

We wait until we can avoid it no longer, and we book in for Transfusion Day.

And then something strange happens.

The child who might burst into tears, crying, “Why did Daddy put the salt so far away?” even when it’s directly in front of her, becomes a child transformed. She gives up a sample of blood for crossmatching, and it’s as if we are in Medieval times, and the blood-letting creates a space in her circulation to be filled with vitality. The child who would whimper if she was asked to pick up her socks, will put socks on her hands, in an attempt to do a no-hands cartwheel. She will run and play and laugh and craft. The bursts of energy are short-lived, and her chest will rise and fall in a way that my Motherduck instincts will watch like LASER, but at least there are bursts. She is preparing for her Coco-ness to return.

Transfusion Day: After

And so we wait.

We wait with a nervous energy that tries to escape and bubble out of our pores.

She is nervous about getting the canula in, and yet equally excited to open the Glitzy Globes I’ve bought her to play with to pass the long long day, I am nervous about a million different things that will never eventuate, and yet equally excited to have essence of my daughter back, with all of the potential and promise of an eight year old.

So there is a balance.

As always there is at times of transformation.

In the lead up to Transformation Day we are jangly and raw and open, with our hearts exposed to the elements. And yet somehow we are closer to something within us, than we are at any other time: our truth or our life force, or some invisible element that makes us human. I don’t know what it is, but it allows me to look at the world through eyes that have been scrubbed clean of filament, and I can see in razor focus.

It’s a Transformation.

If you read these words and think you might like to share a transformation with a kid like Coco,

call the Blood Bank on 13 14 95 to book a spot. You can be a hero.

…From The Ashers

Last week Coco received what truly is the gift of life.

If you could see the difference in her before and after a transfusion you would be like me, urging people to give blood, give blood, give blood whenever they can. Before, she is fractious and intolerant, prickly and itchy. She might cry if she drops a pencil, or doesn’t like the colour of her cup, her skin a pallid yellow. After, she is full of energy and cheeky fun. Our house zings with the sound of her deep belly laughs, and she is literally, in the pink of health.

Yesterday I went and gave some of my blood, and as always, my heart warmed, to see the number of people who, at this crazybusy time of year are willing to slow down in the sanctuary of the blood bank for an hour or so, and offer up their veins to share that bright red fluid that makes us all tick. And keep on ticking.

At the blood bank we smile at each other, little nods as we unite in our goal of saving anonymous lives. We sit in the cool, calm confines of that haven of life, protected from the jostling activity that seems to get everyone jangling at this time of year, and take some time out to reflect on how lucky we are. Lucky that, this day, we aren’t the ones needing blood, and in fact, we are healthy enough to have a surplus to share around. The efficient blood angels will drain about half a litre from our bodies, and our clever marrows will slmply pump out some more, with barely a blip. We reflect on the magnificence of the body.

Once when Liam was small he asked me how rainbows are made, and I gave him a long and fanciful answer involving paint and fairies. He didn’t believe it for a moment, and when I told him what it really was, describing white light and the dispersion effect of the light being seperated into its different wavelengths, he listened in rapt silence. He then asked me why I would make up a ‘weird story’ when the reality was so much more magical. I think of that often. I think of the wonderous abilities of nature, and clevernesss that resides within every single one of us. The way that yesterday, without any conscious effort from me, I was able to accomodate and create another half litre of those beautiful little biconcave discs that carry around our breath.

As I looked around the busy room at he blood bank, I was humbled at the number of lovely people who will stand up (lie down?!) to give Coco a gift so special, without even knowing her. A gift better than any trinket or shiny bauble, and one that allows the walls of our home to swell with fun and vitality and joy.

The true gift of Christmas.

If you would like to give blood, call the blood bank on 13 14 95 to book a bed. You won’t regret it.

…From The Ashers

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

Check out the hits:

1.  Warranties.  How good are they when they work out?  I’ve got a newish car, MissXtrailia2013, and she’s developed a bit of a knocking sound somewhere down there and over to the left.  Dunno what it is.  So I took her to Nissan and they cleaned her and fussed over her, serviced her and checked her over and said she’s a bit broken due to all the hardcore four-wheel driving I do, and they: 1. knew she was under warranty, and 2. got the bits sorted and fixed her.  I didn’t even have to fill out a form.  You little bewdy.

2.  School holidays. Yippee.  Finally.  Blood transfusion today, and a sneaky flight a bit southward for a long weekend.  Ahhh, the freedom.  Can’t wait for some jammie days.  I will not be doing my hair (Hello boys).

3.  Blood donors.  Thanks for giving us a new fresh life, with a happy child.  If you’d like to join in on the best party in town, you can book a spot on  13 14 95.  Go on, you know you want to.

4.  Ryan Reynolds movies.  Yet again, there was one on late on a Wednesday night, this time with an intriguing and original story: two people, envious of each other’s lives, a freakish act of nature, followed by a body switch, whereby the duo learn to love their own lives. So yeah, not intriguing or original at all, but like all Ryan Reynolds movies, once they start I am compelled to watch them until the end.  Even if that end is midnight on a school night. Perhaps it was the thoughts that were provoked: Who would I like to swap lives with? Would I prefer my own challenges to someone else’s? Why do humans have to have something taken away before they appreciate what they have?   Or perhaps I was just compelled to watch in case Ryan got his shirt off.

You’re Welcome
(Saved you watching the shitty movie)

5.  Dirty Laundry on ABC2 on Thursday nights at 9.30pm.  Watch it.  Lawrence Mooney is a funny bugger and they say the eff word a lot.  Worth staying up for.   Unlike the above (shirt issues notwithstanding)

So there you have it.  A weird week, but ending up full of hits just the same.

Happy school holidays.  May your children sleep in and then offer to clean the skirting-boards.

…From The Ashers

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

Hi everyone… Well you know what time of the week it is: time for the Hits…

1.  The last day of school!  Hooray.  I’m saying that now, because I think we all know that by this time next week this very first Hit might be the reason why the Friday blog will be re-named Shitwave Alison.  But for now, I’m excited… Today is the Easter Festival of Fun at school, which will be followed closely by the Noosa Carnival of Crying, as Coco gets her blood taken ready for cross-matching and a transfusion next week.  (Happy holidays Kid: here you go, have some needles and a stay in hospital.)

2. On the back of that whinge, of course a massive hit for us is BLOOD DONORS.  You guys rock.  You do it even though you don’t have to.  You do it even though you’d probably rather not.  And in your doing it, you keep my kid alive.  So thank you.  More than I can ever say or repay.

If you don’t already donate, or if you haven’t done so in a while, you can check out your eligibility online here, or call 13 95 96

3.  The best chocolate shop going around…Chocl’arte.  It’s at the Harbour at Tewantin and the ladies there are unreal.  They made me up packs for the teachers with an Easter Theme.  (I’m such a doofus I forgot to take pics of them all before we gave them out, but here’s the one for Liam’s drum teacher.)

YUM

If you are a Noosonian, pop in and have a squiz.  That Harbour is a great spot to have a cuppa and a little gifty-style shop.  Just beautiful in the morning, with the added bonus of an ALL WHITE shop.  If only we didn’t have two little dirtbags living here…(and then we have the kids too..)

4.  This sign:

This week has been a bit full on, with the impending sense of doom transfusion, so sometimes it’s good to have things in your inbox or your camera roll, that make you smile.  I took this pic on holiday at Evans Head, where I said Bon Voyage to my buddy who is off on a “trip around”.  I don’t know when she’ll be back, (hopefully only a year), and bittersweet as it was, we had a ripper of a time, and even managed a bit of Veuve to split up in style.  Anyway, seeing all of those high pedestrians makes me laugh.  Good times.

5.  One of my Interweb mates, Eden.  I love her and I love her beautiful, honest writing.  She has had some bumps lately, but it sounds like she is getting some of her mojo back.  Anyway, I’m advertising on her blog this month, so hopefully some of you are reading this due to that.  If you are, welcome!  Kick off your shoes and stay a while….

And to my RRs, if you aren’t already an Edenophile, pop over to Edenland and have yourself an experience of beautiful writing.  Take tissues.

So that’s it… Happy Weekend everyone… 

What are YOUR hits?  Don’t be shy…

…From The Ashers xx

***As usual, a boring disclaimer… This is not a sponsored post… No chocolate was harmed or given as a freebie in the making of this post.  WHEN? WHEN WILL I GET FREE SHIT?