Sometimes I have all the feels, and all the things I want to write in a blog and I know it is better to swallow them all/ be quiet/ step away from the keyboard/ go and eat some leftovers/ because nothing that will come out will be palatable or user friendly or something anyone would like to read.

So there is no blog here today.

Sorry.

I guess I’ll be back tomorrow.

Hopefully with something nice to say.

…From The Ashers xx

Kelly Exeter always tells me amazing and useful things.

I say ‘me’ but she actually tells all of us, it’s just that the things she chooses to say seem to be all about me. She has a knack of doing that thing that Sylvia Plath once said about being “a voice speaking from my own soul”.

Yesterday she gave me some great things, all of which have been running around my head all night. I had a night of wakefulness and what seemed like non-stop dreaming, so I know there was a lot to process.

One of the things that stuck with me was the concept of space. Of how two things simply cannot occupy the same physical space at the same time. The blog link was about thoughts, and how we can’t have a positive and a negative thought at the same moment, so we need to prioritise just how much mind-space we want to use up with junk.

I’ve expanded the idea to consider our physical space, the toy cupboard in particular. Take this lego on my floor right now for example:

They say there is an average of 67 blocks of Lego per person on Earth. I think we have more than our share.

There are so many of those pointy little foot-stabbers in that bucket, that it is overflowing. The Evils get the bucket out most days, and most days I have to shove it all back in the cupboard and close the door quickly, lest it all come tumbling out.

Me: Liam, I think we have too many toys, and waaay too much Lego. We can’t possibly fit another toy into that cupboard and the Lego bucket itself is overflowing. You can’t possibly use it all, and in fact I think you only ever use the top layer. Perhaps we could give some to some kids who don’t have any? The way it is right now you can never get a new toy, because two things can’t occupy the same space at the same time. You need to clear out, in order to make room for new things to come into your life.

Liam: I like the old things. I don’t want any new things. Other than computer games, and I have heaps of space on my hard drive for those.

Me: But there might be new things, new opportunities and experiences you don’t even know about yet, and you’re limiting yourself because you don’t have space to fit them into your life.

Liam: Don’t worry, I can get a bigger box.

So there you have it, the wisdom of Liam. No need to clear out the clutter, just get bigger, improve, stretch, create new boundaries.

Someone once said, “The mind, once expanded by a new idea, can never regain its original dimensions.”

Expand.

Oh, and he also solved the problem of getting to the bottom layers.

And that’s not even all of it!

Do you have Lego that appears to be breeding?

Do you have space for new stuff?

…From The Ashers xx

Today was a bit surreal. But I made it through, and that has to count for something.

I only mildly embarrassed myself when I was giving blood and I saw the poster calling for stem cell donors and had a cry and the phlebotomist thought I was crying about the needle so she came running over to check on me, and I said, “No, no it’s not the needle, I love the needle, well not love it, I don’t like it at all, I’m not some kind of sickie you know, I’m crying about the stem cells, but not really the stem cells, but about my friend, who is dead, and has been for ages, a year today in fact, and it feel like so long ago and hardly any time all at once.”

So that went well.

And I only told off two innocent people for things that were mildly annoying, but as Liam said about one of them, “Don’t worry Mum, he was a bogan anyway. I knew he was a bogan because he had a whole arm of tattoos, and I’ve found that you don’t have to be a bogan to have a tattoo, but most bogans have tattoos.”

So that went really well.

And I only completely and inappropriately poured my heart out in the comments section of someone else’s blog, but it was Eden’s and she won’t mind. In fact she will totally get it, because Eden gets me, and this deathaversary stuff.

So that’s not so bad.

And then I drank the cherry beer that I’ve been hoarding for a year, over on my mate’s balcony, and I didn’t cry, and we chatted about Hayls and life and death and the afterlife and souls and how people look when they’re dying and then later when they’re dead, and how I met Hayls and how I friended Hayls and how I miss her so much more than I would ever thought was humanly possible, and how I don’t feel even one tiny step closer towards accepting that I won’t ever hear her laugh again.

And then we saw a shooting star, and it was around the T.O.D, and we took it as a sign.

So that was pretty good.

…From The Ashers xx

Cheers Mate.

Love you. Miss you.

Vale Hayley

…From The Ashers xx

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

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