DeniseI had not realised
Hands and fingers could be so small
So pink and crinkly, nails and all
A little tiny human being
Complete, perfect
Except that you were not
I could not hear
I did not want to know
The complicated diagnosis
They were pressing in upon us
I’d never heard of Ebstein’s Anomaly
Just wanted to hold you with my eyes
Through the plastic pod of the incubator
Moving so the reflections didn’t take away
A single little part of you.
While you lay swathed in lines
Bathed in fluorescent lights
And fed on oxygen
We bit our nails in the waiting room.
‘A rare condition,’ the doctor’s careful words
Pronounced at last, oracle-like
Would later pour through our minds
(And we’d sieve them, hungrily
to extract a drop of extra meaning)
‘Excuse me? No, severe. Hard to say …’
He paused with professional reticence.
‘It’s a case of wait and see.’
And so began a chain of days
Of waiting and seeing and waiting yet again
For the distorted chambers of your small heart
Like a microcosm of all imperfect structures
To adapt their functions to the outside world
Become mini experts at compensation
Minimise the differences, fool the observer
And play the ultimate fit-in game.
Yet I feel it now, and sensed it then
(Seeing the awkwardness of visitors
Unsure of what to say, and how)
That your imperfection mirrors a greater one
In the hearts of all of us around you
Who struggle to acknowledge, much less accept
What we cannot understand or justify.
Note: Ebstein’s Anomaly is a rare congenital heart disease affecting one in every 200,000 live births, including my son Isaac.
Published in Live Encounters Poetry & Writing, 1 February 2020
https://liveencounters.net/le-poetry-writing-2020/02-february-pw-2020/denise-ohagan-matters-of-the-heart
