Spinal Muscular Atrophy

The silent heirloom fest’ring in the boughs
By lots wrought pestilence upon the leaf
And though, forbearing since, must here endow
Disease in birth which rails and spoils with grief.
What voice coerced the spine to bend aside,
The legs to sleep in dreams and not obey?
Yet you, sweet child, are not so warped as I,
Who foiled, not suff’ring, turns, rebukes the day.
This giddy smile humiliates my frown.
Affliction gives your cheer more charm than mine.
How did this supple hand to me come down?
Like Briony I ponder life and line:
Do you inherit this which lifts your face,
Or did your soul float from some other place?


Bethany Johnston wrote this sonnet after her experiences at Camp John Marc a couple years ago after meeting a young boy with Spinal Muscular Atrophy. She chose to write in sonnet form simply because she loves the rhythm it provides and how story-like it sounds when read aloud.