Looking down at Red, she was visibly uncomfortable
“Does your tummy hurt baby?”
“No” she said, “it’s just stress”
What do you say, to your 2.5 year old daughter, whose sick with stress? How do you parent your way through it? How do you comfort her other than to hug her and love her and …
I took in a deep, sharp breath and I died a tiny death:
Parenting a sick child is equivalent to dying a tiny death, each day, in a new and unexpected way. The matter and mass making your body is reduced by one tiny fraction and you feel it, quite distinctly, leave your soul. The self you are is instantly renegotiated and you are changed, in this tiny, tasteless way. You are reduced and replaced over moments, over days, and years until the you you are, is gaiping and hollowed — held together only by the fiery determination to have your child outlive you.
Reconciling Red’s disease is like watching the Northern Lights dance across the night sky: it’s eerie and haunting and the sight of it never leaves you. Every night sky is transposed with thoughts of the neon green you once saw and so, Red’s disease is transposed onto every facet of daily living. My biggest challenge in parenthood has been to live and be in a constant state of nightmare; to pretend the ever-present stench of it all isn’t impacting my other faculties.
With the heaviest heart I’ve felt in a long while, today I learned that Red dwells in this very place: building a self around these same tiny deaths. The very same fragments of myself that spit out into the Universe after a tiny death are the very same fragments Red uses to build who in fact, she is. At least that’s how I need to believe it happens: that she catches the strength and the hope that I feel leaving me.