Surf: For those who care for dying children


  • How to cite this article: Myers-Benner J. 2009. Surf: For those who care for dying children. Am J Med Genet Part A 149A:301.


The following poem is a stirring piece written by the father of an infant girl who died with a novel syndrome. The words resonate with anyone, but especially with those who care for children with life-threatening conditions.

John C. Carey



Jason Myers-Benner

October 2008

  • Mine was

  • a swamp I had to traverse (I am

  • still wiping the mud from my eyes), but you do

  • this every day, and then you have

  • to go home and eat

  • your dinner.

  • It must come on you like waves, lapping, tumbling, crashing

  • even; never resting. And so maybe you are one of

  • the rocky ones, hardened against the breaking water, protecting your

  • shape, preserving the mainland. Or are you are the sandier

  • shore? Do you allow the waves to change

  • you?

  • Here is something I believe about you: no matter how you

  • bear the surf, there must be a place in you where a little water

  • collects. I wonder: have you ever, when the tide is low, gone there

  • and taken notice of how beautiful that pool can be?

  • Perhaps sometime we could go walking together, exploring the

  • crevices or scanning the sand, stooping to retrieve those

  • curious and delicate

  • treasures the waves have

  • brought.