I am writing this post in the middle of the night, because we have gotten to that time of the quarter when the bags of blood are looming, and I can no longer pretend that the kid won’t ever be getting another transfusion.  I know she will, and I know it is soon.  Her skin is golden and the whites of her eyes are almost green.  She has had some tantrums.  Once, when she didn’t want to leave a party, another because I hadn’t bought her an umbrella.  Minor slights that usually wouldn’t bother her, are blown out of all proportion.  There is yelling and stamping and slamming of doors… And that’s just me.

We know the behaviour is a result of a haemoglobin so low most of us wouldn’t even be able to leave the house, and yet we can’t excuse or gloss over it, because this is her life.  This is what she has to learn to handle for the rest of her days.  And someday, hopefully far off in the future, we won’t be here to explain her colour, her fractiousness, her fatigue.  In that someday, people will turn their backs on a person who acts like a diva for no apparent reason.  So we need to make her able, and not enable.

I have been by her bed for a lot of this evening.  Listening to her breathe, and breathing her in.  Smelling her sweet, strange smell and wishing that she could stay innocent of what comes next.  Measuring my breath with hers and willing her to take in large doses of oxygen for the few red blood cells she has circulating.  Patting her gently as she tosses and turns.  Tickling her legs and arms where the itchiness is becoming too much, to save her from scratching herself to blood.

You would think that her current state would make her bones tired and her sleep deep, but instead it seems to rob her of rest, and create a state of irritation.  Irritation of skin and of personality.  Perhaps it is the bilirubin scraping her insides, or her blood cells trying to claw their way to the surface of the marrow.

Perhaps it is just that she knows what I know.

It won’t be tomorrow, and maybe not even this week, but at the moment, we are limping along.  Tonight I will sleep with one ear and one eye outside her door, listening to the tossing of sheets and of fingernails on skin.   And of prickly sleep-talk.  And of breath.  Most importantly, of breath.

Because soon, it will be time for those bags of blood.  Soon.

 ….From The Ashers

If you are able to give blood, please do: Coco, for one will need some soon.

Call 13 95 96 or contact the Blood Bank online

Some of you may know I play a little thing over on Anna Spargo Ryan’s Blog called Flash Fiction.  The prompt this week was: “They ate grapes together under the fog of afternoon.”

Here it is:

Of all the types of fog, afternoon fog was the worst.

Morning fog was kind of expected, and was somehow deliciously painful.  Morning fog could bring with it a pain like a knitting needle to the temple, or a dull burning of the intestines.  It married with a mouth that felt full of breadcrumbs, and a tongue one and a half times it’s normal size.  But morning fog had a smell of repentance to it, and with that, re-birth.

Evening fog was to be coveted.  It was light and fizzy and full of promise.  Evening fog was the gauzy beginnings of a fun night ahead.  The slight blurring of reality that came with the fog was welcome, as it buffed his sharp edges, made him more interesting and outgoing and helped him fit.

Afternoon fog was the worst.  It held hands with an overwhelming fatigue that made his steps heavy and slow.  It smelt of shame and denial and furtiveness.  He knew his eyes would be shifty, and she would try not to notice, but she would, and they would scream at each other.  And that would only make the fog clot.

She had set up a makeshift picnic on the balcony to welcome him home.  A sense of celebration, now that he was no longer drinking.  She had laid out the bright yellow tablecloth of hope and prayer, with a platter of strawberries and grapes and water crackers and brie.  He sat down next to her and she smiled at him, her face a moon of optimism, and he knew he couldn’t tell her. Not today.

So he fought the fog, and tried to feel as sober as the atomic strength mints he always had pushed hard into his cheek.  She moved the platter forward toward him and  just looking at the over-ripe strawberries, on their way to liquid, and the dried edges of the brie, made the hot bile sear the back of his throat.  She must have been sitting her a while.

He swallowed hard, and tried to relax his jaw muscles, reaching for a grape, fighting away the fog of two vodkas at lunch that had become seven.  She smiled again, wider this time.  She really did want to believe him, believe in him, even when she knew she was holding onto the balloon of a lie that would either deflate or burst, depending on how she nurtured it.

He forced is own marriage-dependent smile, and they ate grapes together under the fog of afternoon.