Owen is a sweet, endearing boy by all accounts – which I think is the perception we all have because he smiles a lot and has a beautiful face. But it’s not like he makes me tea or tells cute jokes at the dinner table – Owen actually doesn’t, can’t, do anything. And not only does he not do anything, he’s always at risk of harming himself – which means he must constantly be done to.
Whether through mechanical or manual means, someone must feed him, bathe him, change his diaper, give him meds for reflux/seizures/spasticity/sleep, hold him just right so he can fall asleep without jolting himself awake, suction mucous from his mouth so he won’t choke. He can’t sit in his chair comfortably for more than 10 minutes. He can’t lie on the floor safely for more than 10 minutes. No one can hold him without tiring for more than 10 minutes. If I’m roaming around the house doing house-y things, I pick him up and carry him from room to room so I can ensure he doesn’t roll over on his face or choke on secretions or wedge a leg in a potentially injurious position. 100% of his caregiver’s time is about making sure he stays alive, clean and injury-free.
I joke sometimes about how much it takes to ‘neutralize’ Owen, kind of like the way we try to make machines and processes carbon-neutral. If I were to contract out Owen’s care, it’s the equivalent of four full-time people. Three to work three eight-hour shifts a day, and one as back-up and admin/paperwork. And this is to maintain life, not necessarily improve or achieve something.
I’m not sure what my point is exactly. Only that recently I have taken to laughing hysterically, thinking about how absurd it all is.