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