I have been a bit off the bloggy RADAR at the end of last week and then again yesterday, because I’m feeling a bit weird.

We had a big end to the week, with a big relief.

We are lucky.

When we go to the hospital, we are in the Paediatrics ward, so obviously there are lots of sick kids, who are mostly admitted with things that are acute but transient.

The kids go home.

And they go home well.

Sometimes the kids have chronic things, like our kid does.

Those kids go home too.

And they go home pretty well.

But then there are the kids that have a thing that doesn’t fit into either the acute or chronic category. They have a thing that fits into the terminal category.

By and by, they go home too.

But they don’t go home well. We all know why they go home, but we won’t think it-won’t imagine it-won’t say it.

Instead we will light candles, say prayers, make wishes, bargain with a higher power, get Facebook likes for them, send quotes, stay positive, raise money, raise awareness, send positive thoughts, share their story, wear a ribbon, do anything except think about the reality.

There is a local kid who has been popping up in my Facebook feed over the last little while. I don’t know him, or his family, but I know people who know him. So I know he has come home. Just like we did last Friday. But we came home to laughter and energy and relief. Sweet relief for another few months. We felt the heaviness pushing on the backs of our necks evaporate like so much vapour.

They didn’t.

And that makes me feel a bit weird.

I hope you heal little dude. I hope your parents get to feel the heaviness leave. I hope it with all my heart.

…From The Ashers xx

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

Image courtesy of Grey’s Anatomy, 37th ed. I knew that bloody heft of a forest would come in handy one day…

Me: Hey mate, I hear you are growing a bit of a Mo, how’s it going?

Liam: Not bad, not bad at all.

(Strokes ‘moustache’ like his Pop used to do)

Liam: Yeah, its’ coming along, about on a par with my hairy legs, and a little in front of my chest wig.

(Lifts t-shirt to reveal Mr. Puniverse thorax, with a completely, absolutely and utterly, bald chest.)

Liam: It’s weird, I have this Mo, but no other public hair.

Me: Huh? Did you say public hair?

Liam: Yeah, you know, the public hair.

(Gestures to his nether regions. Thankfully he doesn’t feel the need to elaborate with a display at this time.)

Me: It’s called PUBIC hair, mate. As in, the hair that grows near the pubis, pubes, or pubic bone of your pelvis.

(Now I’m gesturing to my nether regions. Oh sweet life, WHAT is going ON here?)

Liam: Ohhhhh, I thought it was public hair, as in, it tells the public that you are ready to reproduce. And stuff.

Conversation Officially Terminated at 7.10am. Way too much information has been shared before my first coffee (or wine). I do not wish to know what “and stuff” is. Not at all.

So how are your pube-y talks coming along?

Have you been putting your pubes out in public? (For strictly reproductive reasons of course)

…From The Ashers xx

Liam has just turned ten. He is medium sized, blonde and a little on the skinny side. So not at all precociously developed. He wears size eight clothes.

He came to Nath yesterday rubbing his upper lip.

Liam: Dad, I think I’m about to hit puberty.

(He is desperate for puberty because he is hoping to get pimples. Yes, he is my son.)

Nathan: What makes you think that mate?

(As clearly it is not the presence of any primary sexual characteristics that has prompted this thought.)

Liam: It’s just that I seem to be developing quite quickly at the moment. Check out my moustache. It’s still blonde, but as you can see, it’s really coming along.

(There is no visible evidence of said moustache.)

Nathan: Hmmmm

(Not wanting to offend Liam’s impending Manhood.)

Liam: I know, it’s weird right? I mean, usually it’s usually the other way around, you get the pubic hair and all that, and then secondary sexual characteristics come, well, second. I’m doing it in reverse order. Weird.

(Nathan now has nothing. He isn’t even sure what is a primary or a secondary trait.)

Liam: I reckon I’ll have to shave by Christmas as this rate.

(Liam walks off, talking to himself about Pokemon, in a voice so high pitched canines were cowering in Cooory.)

Seems legit.

Behold the magnificence of the Mo

…From The Ashers xx

A blood transfusion is looming.

We go this Friday.

So today, something from the vault:

On a day with a bit more energy

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. 

If you are able to give blood, Coco would love some of yours. Call 13 14 95 to make an appointment.

…From The Ashers xx

On one side of my family there is a pretty big age discrepancy between me (the oldest) and all the rest. They are all adults now, having their own kids and such, but I still think of them as little rugrats getting all liquored up on red lemonade and my Nan’s tooth-achingly sweet slices, every Christmas.

My Mum just sent me a link for my cousin Jarrod McShane’s website, and it turns out, that somewhere between sitting at the kiddie table at family dinners, travelling to The US with us in 2003, and now, he has become an extraordinary photographer.

Wonderful photography amazes me, in this digital age of fast, sharp cameras and accessible filters, where it seems everyone can take enough pictures to get something decent. But true photography is something else, isn’t it? Real photographers somehow manage to tell you a story, take you on a ride, urging you to leave the couch and step inside the frame with them. They make you experience the world in a new way, with eyes that don’t belong to you. I think that is a rare thing, something you can’t get with just a fancy camera. For that you need heart.

So when I went over to Jarrod’s, I guess I expected to see a couple of cute snaps of this or that (he’s just a kid remember), but instead he took me along with him to Alaska and Melbourne and Canada. Places I have been and places I haven’t, experiencing them all in the heartfelt way of my quiet, thoughtful cousin. Seeing details that my own eyes would have passed over, capturing moments that I would have rushed by.

The excursion made me smile, in a benevolent old-lady kind of way, proud of what my kid-cousin has grown up to be.

It also made my heart ache a little, as I know my Dad would have loved to see the art Jarrod has created, and I know he would have had thoughtful things to say about it. We would have sat together and looked through the gallery, recognising familiar places, and making up stories of the spots we didn’t.

I would have liked that.

So I did it by myself instead, imagining his voice in my head.

And I liked it anyway.

Thanks Jarrod, I think you have a gift. I appreciate you sharing it.

This might be my fave, but it’s hard. There are so many. It’s very Melbourne though, and I do love that old bird.            …This pier has a story or two to tell…

How about you, which pic is your favourite?

What does it say to you? Where does it take you?

…From The Ashers xx