Nine-thirty. I trudged up the rain-soaked walk in the dark at the end of a 56-hour work week. The house was quiet as I slipped off my shoes near the coat rack, wiping away tears as I padded up the stairs and down the hall. I paused at the door and brushed off fresh tears before quietly slipping into our room, and there she was. Sleeping for the moment. Curled up in a tight ball under the quilt her grandmother had made for her and clutching her ever-present buddy, a stuffed lavender puppy named Cosmo.
Ken had set up her travel bed in our room so we would be able to get to her quickly during the long night to come. I set down my bag, pulled off my coat and knelt down next to her, bending to kiss her damp little forehead. Her long curls were slick with sweat and a third set of tears stung my eyelids as I kissed her cracked and bleeding little lips that no amount of salve had been able to obviate.
I stifled a sob as I caught the scent of stale formula that had most likely been spilled on her purple PJ’s sometime earlier in the evening, and wished for the millionth time that things could be different. That it could be me lying there suffering instead of her. That I could do something, anything to stop this horrible thing called CVS while knowing with a cold sickening ache that I was completely, utterly, wretchedly powerless.
Frustrated tears strangled and clawed down my throat as she suddenly convulsed in a violent wave of retching and gagging. I fumbled for her decompression tube and clicked it into her G-tube valve as wave after retching wave propelled her exhausted little mop of curls off of her damp little pillow and her tensely curled little toes skyward. I looped an arm under her neck to do my best to support her and forced myself to speak in quiet, soothing tones to her, saying I know not what as the waves went on and on and on, until I began to fear she might snap in half in my arms. I let the tears fall as she suddenly fell limp and lifeless as a rag-doll, her vacant eyes staring through me, seeing nothing.
“Poor little ladybug.” I whispered as I gently brushed her eyelids closed. I was easing her back onto her pillow when I heard a faint, cracking whisper…
“Mommy? Are you ever so sorry I’m so very sick?”
I felt a tiny surge of joy jolt through me that she was alert enough to even talk. “Yes, Sweetie. Ever so sorry!”
“Were you so very worried ’bout me and missin’ me tuh-day wen you had to be wurkin?”
“Oh, very worried… and I missed you to the moon and back!”
And she slipped away again as her brow furrowed in pain. I was about to creep back down the hall when I heard another hoarse little whisper…
“Sing, Mommy… please?” And a trembling little hand stretched in my direction.
“Anything Sweetie. What would you like me to sing?”
Her eyes stayed closed as she moved her cracked little lips and whispered… “Moon, Moon, Moon…”
“You got it. What kind of pie tonight?”
“Bwoo-berry.”
“Oh, blueberry is a great choice!”
I caught the faintest glimpse of a smile as she nodded…