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| Epidermolysis bullosa or EB, a rare genetic disorder that makes the skin as fragile as a butterfly's wing. My great-nephew Axl has been diagnosed, fortunately with a mild form. I had never heard of it, and now it's personal. For more information, see http://ebawareness.tumblr.com/ |
delights with beauty,
fairy dance equivalent of royal storied
characters who deign to join our world,
they flit between waxed leaves on fragile
wings of pixie dust and not much more.
Butterfly children, as they're called,
need pixie magic every day,
the kiss of angels on soft skin who dare not
touch them, lest they leave a blister.
Unique, so few that no one's figured
out a way to make a dollar from
this rare disorder with long name,
no medicines exist, no cures, no
way to know how each one's story
will unfold. But in the meantime,
all who care for them must learn
a gentleness reserved for petals,
feathers, wisps of fragrance in the air
translated into touch. Fragile
special ones who landed on the
hard and crusty earth surrounded
by a people more acquainted with
the heavy hand, sometimes rough
and careless, heaven's emissaries
sent that we might learn of softness.
A necessary lesson, but one wonders
why we couldn't learn from colorful
and winged variety, without the suffering
of the kids whose happy endings
are elusive as a butterfly in flight.
(c) Ellen Gillette, 2013
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