Do you remember that show? With Norm and the other guy sitting at the bar? I can’t remember the other guy’s name right now, and I know that’s not right, because Cheers was all about having a place where “everybody knows your name”. Anyway, if you know Cheers, then you are screaming the Other Guy’s name out right now. (I’m pretty sure he was in Toy Story as well. Just call me IMBD.)

Moving on. I have had a couple of places like that in my life. And like my list of friends, I guard them closely. I don’t have too many (I don’t like to spread myself thin), and I choose them carefully. The Morning Star Hotel in Willi was one. Taco Bill’s in Clifton Hill another. I’d like to say Cocktails and Dreams on The Goldy as well, but I think that was more about NOT welcoming me in (another bar, another life). These days it’s Village Bicycle and Bistro C. And here.

The first two are by choice. The third, not so much.

And yet when we arrived here today, at a place that I don’t want to come to, to do a thing that I don’t like doing, I realised that this place is a part of me and I am a part of it. I have a favourite room (27), a favourite carpark area (mezzanine, part e, because: Me… I can always remember where I’ve parked), and even a favourite mug in the parents’ room.

Fave mug. Insta worthy hospital flat lay. Yes I used Mayfair.

Smiling nurses greeted us by name and made a fuss of the kid as if she was Suri Cruise. Doctors who I’m now on patient advocate boards with, popped in for a chat. Other trainee doctors came in to feel the kid’s excellent hepatosplenomegaly and marvel and the lowness of her haemoglobin (everyone’s gotta have a talent, right?). We feel comfortable enough to put our faces right in close to the camera at the entry, and make stupid faces to make Margie on the front desk laugh. We know the order of things, and we are close enough with the guy at Merlo to raise our eyebrows in conciliation when the idiots don’t understand the discount system for bringing their own cup. We never say a word to each other, Merlo Guy and I, our wiggling brows say it all. Today he was almost a seagull, as he step-by-excruciating-step explained the difference between cup sizes (why are they in ounces?) and the store pricing policy to an irate lady dressed in KT-26ers and leggings-as-pants, who was arguing over 30cents and her card being declined. Usually I would’ve just said to pop it on my order, but it would’ve felt like a betrayal to Merlo Guy, and us stalwarts have to stick together in here.

In here.

A funny thing happens to the kid when we get in here. I try to speak in the language of hospitality instead of hospitals. I call it “checking in”, and we run to the bathroom to see if we are getting L-Occitane toiletries (we aren’t). We look at the “room service” menu, and talk about how yummy the Mango Chicken will be (it isn’t). And yet, still, she becomes a ‘patient’. She lays in the bed all day, even though she could easily sit on the couch with me, and is as quiet and compliant as a lamb. It’s like the institution does something to her, as it does to me. She goes docile, I go to war.

Today I decided to play it a little different. I made a decision to treat this funny, mushy-pea walled place as my Cheers. I chose to see Margie as Sam Malone, and Penny as Diane Chambers. Kevin was Norm, and Stu was the Other Guy. (I tried not to call anyone Carla, but my brain accidentally might have. I told it to hush now, we don’t have to be that mean.)

In some weird way, after so much stretched-out time together, this soft, speckled lino and the sweet-prickly smell of chlorhexidine has gotten into my nostrils and into my being. I didn’t choose it, wouldn’t have chosen it in a million years, and yet here we are. If I love my life (and I do) and I love my kid (and I mostly do, can I be “barley” during tantrums?) then I must also love the experiences and the laughcries and the learning I have done in this place. It has tested me more than any other location (yes, even more than the Cricketer’s Arms in 1992, may I never get a stomach bug like that again), and it has shown me more about myself than I ever thought I wanted to know. I’ve had some of my biggest moments here, both fair and foul.

And so now, just like the blankets. A part of me is the property of Queensland Health.

Cheers.

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

The doors sense your presence as you approach, and like a bride, the moment  you step over that threshold, life becomes something different.

The air is cooler than it needs to be, so despite the sticky, liquid heat of the Queensland Summer, you have to remember to wear long pants and covered shoes, or you will be shivering by the end of the long, long day. The lighting is vivid, casting shadows on your face, highlighting the bags of concern that have grown, dark and haggard, under your eyes these last few days as you waited for this moment with fearful anticipation. Equal parts relief and dread.

At the check in they call your kid by name, but they place a band around her foot, tagging her for the duration, and although they still refer to her by the name you chose for her, they really know her as UR 54021. Those five digits storing all that they need to know. Her name is just a concession to convention.

As you walk the long corridor to your glaring, sterile habitation for the day, all sense of who you were out in that other world sloughs off you, and you become part of the machinery of intervention. The more completely you can exfoliate the remnants of your concerns and your individuality, the better you will fare on this day of immersion. Cleansing yourself of your self makes for a smooth transition into a day where all decisions will be made for you.

The people in white are also tagged and numbered, and they will direct your progression. Come here, move there, put your arm here, wait there, eat this, hold still, hold still hold still HOLD HER STILL, whilst they prick and insert this steel along the lines of her veins, filling her up with the liquid of life that you know she needs, and yet the last remnant of you that still recalls the outside you, resists and recoils from.

The day is long and long, and long after you have forgotten your own name, or the feel of the fresh brush of sunlight on your skin, you are released out into the bigness of the twilight sky and you can fill your alveoli with air that is moistened from sugarcane and life.

You breathe that warmed air in gulping mouthfuls, filling your cheeks like the guppy at the bottom of the fluorescent fish tank you have left behind. Fare you well little fish, and all of you big fish, stuck in your tank of surreal activity.

‘Til next time.

And you silently cross your fingers, hoping with futile desire that there won’t be a next time.

But you know better.

…and so does she

Our personal beliefs are a funny thing, aren’t they? They are so much a part of us that sometimes we can’t see past them. And we think that others will think the same as us, come to the same conclusions, if given the same information. And I guess that sometimes happens.

And yet so many other times it doesn’t. Hence the reason for so many wars in life and on Facebook. But that knowledge doesn’t seem to stop us from trying. From presenting our beliefs, trumped up as information, in the hope that others will join us in our world view. I suspect it might be because having more people on our team makes us feel more right. Safety in numbers and all that. Just like all the despots in history.

Recently I had a conversation with a lovely lady who has strong religious beliefs, and follows a particular faith. I couldn’t tell this just by looking at her of course, it was revealed in the progression of our chat, when I mentioned that my daughter has regular blood transfusions. My comment was pertinent to what we were discussing, however it wasn’t imperative that she comment on it. At this juncture, however she chose to let me know that her religious beliefs forbade blood transfusions, on the basis of some scripture in the Old Testament. I admit I didn’t quite catch the rationale, but it was something to do with blood being from source, from god, and only for god. I think it was that only god can be in control of the blood. (Disclaimer: I may be misquoting here.)

I asked if she could eat red meat which contains blood, she said she could, as long as it was bled. Whatever that means. Because red meat still has red blood in it, doesn’t it?

I asked if she could get a transplant which contains blood, she said she could, as long as some of that blood was squeezed out of it. it wasn’t imperative to get all of the blood out, just a certain percentage.

So it kind of sounded to me that some of the blood has the god bit, and some of it doesn’t, given that she was allowed to have some of it, just not all.

I wondered aloud where the god bit was, in the blood, as blood doesn’t have DNA, like, say, all the other cells of the body. So where  could it be hidden?

I wondered what would happen if someone accidentally got the god bit of the blood and not the other, human bit. (Seeing as percentages seemed to be kind of important. Who knew that scripture was so full of maths?)

She didn’t say.

I told her that our daughter could die without transfusions.

She said, “Yes.”

Then quietly, “Perhaps.”

I said I thought that sounded a bit shit.

She said, “Perhaps, but it would be god’s will.”

I said I thought that god sounded a bit shit then. And that he shouldn’t have invented blood transfusions. Or tiny little seven year old kids with Pyruvate Kinease Deficiency who need blood from wonderful donors, and who could die without it. If god didn’t want to share the blood around, that is.

She didn’t say anything to that.

But she did give me a couple of pamphlets that she happened to have on her, with a useful website to clarify it all.

They look a bit shit.

I reminded her that our kid could die, not pamphlet dead, but real dead, if she didn’t get transfusions.

She nodded.

And I don’t think a shit pamphlet would help that much.

…From The Ashers xx

Image: Wikipedia

Blood.

It is our life force.  It is a clever fluid that carries oxygen to our cells.  It takes our every breath, to every part of our bodies.  And then it lets us breathe out again.  In.  And out.  In.  And out.   And repeat.

Without it our cells would be gasping, asphyxiated.

And we would die.

Blood.

It looks alarming when we see it outside the precious tubes of our arterial network.  It is so bright, so vivid, and so shiny that it almost seems to have a life all of its own.  If you look at a drop of blood closely it seems somehow thick with vibrancy and hope.  A crimson lustre, full of promise and potential.

It scarlet-shouts at us: lookatme lookatme lookatme.  Full of its own importance, for it knows: without it, we would die.

Blood.

Most of us don’t think much about it.

From time to time some of it may leak out of us, in scratches and cuts and scrapes, and we wipe it efficiently away- red blots on white tissues- and discard it without a mind, for we know our clever bodies will make more and more and more.  And repeat as required.

For without it, we would die.

But sometimes people can lose more than they can make.

And sometimes, some bodies have diseases that break down the blood too quickly.

And some other people, through no fault nor folly of their own, make thousands and thousands of the ruby red discs, but those bloody little frisbees are left wanting: wrong shape, fuzzy edges or missing some parts, so the intelligence of the body sends them to the liver.  For termination.

And yet, without these biconcave saucers: they will die.

This child is one of those.

Thankfully, she doesn’t need your blood this week, but one day soon, she will.

Please, roll up your sleeve, and share some of your carmine elixir of life.  You’ll make some more, I promise.  In fact, you’ll do it without even knowing.

She, however, simply can not.

Blood stores are at a critically low level at present, so you will be hearing me parp on about this all week.

Please call 139596 to make an appointment, or visit the Red Cross Website to find a location, check your eligibility, or share this information with your friends.  

Not everyone CAN donate, so those of us who are able to, have the ability to SAVE A LIFE… I think that’s a super-power.

…Thanks and Love, From The Ashers xx

Sometimes life is just about perspective: how you look at it.  Something you dread, can become something to covet, if you just look at it from another direction.  Perhaps.

This week our youngest kid will be getting a transfusion.  If you are a RR here, you will know all about it- that she has a rare type of anaemia that requires a few transfusions per year.  When she was younger I would approach this week firstly with denial or anger, then fear and vulnerability.

These days we have a better handle on the whole thing.  We are accustomed to the process, and we feel we have a lot more input over how it all goes.  We get to choose the transfusion day, so we can plan our lives a little better.  We have a home test kit so we can keep an eye on her, and we don’t have to be too worried about plummeting haemoglobin.  I can’t yet say we can’t wait for transfusion day, not really, but in some strange and wonderful way, we sort of look forward to it.

We have already been shopping for a new outfit for her to wear on the day (because shopping heals most things that ail you), we have chosen what books and craft we will take in with us for the long day, and we have something special planned for the days that follow, where she will be in the very pink of health, and back to her normal self.

And then, for me, there is the lure of relief.

The moment that the car parking ticket gets fed into the machine is probably the best moment of my year, every time it happens.  I know as I push that little white slip onto the lurid yellow slot and the barrier comes up, I won’t have to think about red blood cells and jaundice and liver function and bilirubin and haemoglobin and erythropoiesis and fevers and immune system compromise and all of that for another two and a half months.  And that is something to savour.

It’s kind of like we get a New Year every three months.  There is a sense of relief and relaxation of a job completed, as well as a feeling of rejuvenation.

It’s like we get to start over.

In the car on the way home we will chat about all the things that we will do,  now that she is full again.  She will have aspirations of cartwheels and tennis and holding her violin up high, just like the other kids.  She will admire herself in the mirror and see a healthy, pinkish tone, just like the other kids.  She will laugh and cry and be sweet and kind or have tantrums, just like the other kids.  She will maybe stay up a little late, or get up early, and we won’t be so nervy about it all, just like the other families.  And I will hug my girl and appreciate her for who she is, just like the other Mums.

…From The Ashers xx