When you were tiny I would stand
next to your bed with my hand
near your little nose.
Feeling your breath move in and out
awed that my body could bring about
such a perfect life.
But then your strength began to fade.
Your voice, your legs, both betrayed
the hope that we all had.
And now I’m by your bed again
watching you breathe: out, then in.
Wondering how to say goodbye.
The prompt for today was to write on the theme of “we’re being watched”. The writer of the prompt intended it to be a Big Brother type watching. But I went in a different direction. (And changed the prompt to “being watched”.)
For over seven years I’ve been reading a blog written by Shannon,the mother of two children who have a genetic disease called Sanfilippo Syndrome. Children with Sanfilippo Syndrome accumulate long sugar chains (GAGs) in their cells because their body is missing the tools needed to break them down. The children progress normally at first, and then begin to regress as more and more GAGs build up in their cells. Eventually the child loses language, mobility and the ability to eat. There is no treatment.
Shannon and Matt’s oldest child, Waverly Mae, entered hospice about a week ago and she only has a few days left. Shannon’s recent posts has been from Waverly’s bedside, where she is holding vigil. I wrote today’s poem thinking of her.