Learning to Breathe at 1:30 in the Morning

I'm standing in the dark hallway outside Savannah's room.  It is 1:30 in the morning.  She vocalizes on the other side of the door.

I hold my breath.

I try not to make sound.  I don't want her to hear me. She has summoned me here, but not with wailing cries or I would already be at her side working through my protocol of experiments to determine her issue. (One becomes adept at the scientific method and deductive reasoning after fifteen years of caring for a non-verbal, medically fragile, significantly disabled child).

I listen.

I hear her rustle the sheets with the one arm she controls.  She smacks her lips and lets out another "ahh-oo!" The sheets rustle again.

I listen.

I compare the sounds against my mental database of Savannah-noises to find a match.

My mind wanders in the dark hallway.  I shift my weight from one foot to the other. Earlier in the evening, at bed time, I overheard, through this same door, Nurse C. singing while she prepped Savannah for bed. Savannah cooed open-vowels and laughed.  She loves music.  She loves Nurse C. I imagined how her eyes sparkled.  She stretched in her bed like a happy cat, basking in the a cappella performance of a winsome, folk song.

I think about all the nights at Savannah's side, miserable nights without end or mercy.  I thought about the bleary mornings that followed.  The relentless crush of time dragging me through hazy days of appointments and bills and case workers and doctors and tests and bad news gone worse until the night returned, and like the ghost of Christmas Future, deposited me, broken and cold into a disparate land of pacing vigils of crying blackness.

I dreaded opening the door.

But those nights cringe elsewhere, for this one has gone silent.

I listen.

Savannah smacks her lips.  A faint giggle croaks from her throat.  She is not distressed.  She is simply awake.  She is fine, no reason for me to intrude.

I retrace my path through the house to my bed and slip under the covers.  The ceiling fan twirls above me.

I breathe out.

#disability #parenting #relief #night #dread #specialneeds