What's it like to face death every night? you ask. What exactly is it like I ask myself. Tonight. Every night, almost. Every time Sophie has a seizure. Every morning when I go to her room that short walk down the hallway to her room. Will she stop breathing in the interval between my comforting my attendance and my stance at the sink rinsing the syringe clear of the syrup (poison) I've shot into her day night day night day night day night day night day night day night day night. Will she have stopped breathing in the night and lie warm or cold in her bed? This is not morbid. I am not a soldier. The things I carry. What's it like to face death every night? you ask. What exactly is it like? I ask myself. I am not a soldier. I carry nothing but a syringe, a couple of pink pills, a white capsule, a cup of juice diluted with water. No arms but my own. I am not a soldier Sophie is not a warrior and this is not a battle. What's it like to face death every night? you ask (you have never asked). It's a song may the long time sun her gray face turned pink shine upon you my finger at her wrist all love her pulse furious surround you my hand at her brow and the pure light it's okay it's okay within you over and over guide your way on. It's the water rushing through the syringe at the sink afterward my head tilted. I am not a soldier Sophie is not a warrior and this is not a battle. I'm thinking not of crosshairs my perspective is the narrow tunnel of the hall the bed at the end and her small form. Focus.
Don't forget I'm moving to Substack.
And you keep doing it Afraid, which is Courage and Love in Action. And Sophie keeps Soldiering on, like a Warrior, because she IS indeed one, every Day of her Life, make no mistake about it. As her Caregiver your Advocacy IS a War against a System that is so flawed it makes it all the more difficult for those facing Death every Day, every Night. Huge Hugs, I know it is beyond exhausting and we are but mere mortals in the Fight for our Loved Ones right to Life and to BE.
ReplyDeleteI tried to leave a comment on substack, before from my phone, and now on my comp, and it wouldn't work. So I'm commenting here. This is beautifully written, and oh so sobering to contemplate. You and Sophie, locked in this dance, not a soldier and a warrior, but a pair of souls, matching each other step for step, bound by such love.
ReplyDelete