I look at my child’s body, and it’s seared with scars, from her face to her abdomen. Today she’s covered with bandages, around her arms, hands and feet, where the IV nurses failed to get a line, leaving her with tiny pinholes, everywhere.
She says she’s scared.
She squirms when I touch her. I cannot change her diapers as she must remain in her clothes at all times. Leaving the hospital always leaves Red in a state of PTSD. Not in an obvious sort of way; ever subtle, easily overseen or mistaken as childlike magic.
I put my child to bed in the same clothes she wore to the hospital. Same dirty socks. Same wrinkled jeans. She brings her mittens and her hat up the stairs and sadly, I know exactly how our bedtime routine will change: I’ll watch her struggle to put on her hat and mittens, my help is too uncertain, she must only trust herself to cover her body; she cocoon’s herself in blankets then finally, let me kiss her on her forehead, protected by her hat.
Red can’t bear to have her skin exposed to the outside world, for fear of touch leading to pain. She can’t bear another procedure and she doesn’t trust her body being exposed in anyway.
I stand over her, staring at her hat and mittens and I thought
No one talks about this part: this small, sad part of parenting sick kids.
Creeping out of her bedroom, I know it will take us weeks to get her comfortable enough in the world again, before she can have a bath and trust our hands when we wipe her face and change her diaper.
Each hospital visit does not end when we leave the hospital. It stays with Red and so, it stays with us. It informs our parenting; invades our routine and holds us under an overcast sky– not exactly stormy, just dull and without the sun.
And so tomorrow I’ll give her a sponge bath with her winter hat and mittens on. I’ll let her pull her t-shirt down to cover her tube and scars. I’ll let her wear the same dirty clothes for as long as I can stand and then as quickly and as gently as I can, dress her in clean clothes minimizing as much time as possible, that her skin is exposed to the outside world.
I’m learning to parent Red’s post-hospital self; I’m learning that these little moments of sadness are in fact, a big part of rare parenting.