i know these eyes...
the eyes of mother love. a frozen snapshot of adoration.
a mother's hope behind the scenes to protect her child.
perhaps her husband holds the camera
and the smile i sense, but cannot see, is for him.
the look of love and utter acceptance,
is for her daughter.
i know.
i know
compelling affection
of a mother for her child.
i have one son and will look at him
with the same undying love forever and a day.
it might be sunday, certainly summer.
perhaps the sun is angling down down down
on this forever moment.
if you look closer,
closer still....
you may notice behind the cheery gingham pillow
the mother deftly rights her child,
securing her place in a
fragile world.
i know the child.
the bend of her weary neck.
the lifeless turned out feet that hang like forgotten dreams.
i know the disconnect.......the inability to feel life
that courses down helpless arms so that her impossibly small hands
are pinned on like mittens hanging from bright yarn,
heavy and limp around the
neck of winter.
i know.
i know
because when i sleep at night
bones cave in on themselves.
when daytime's buoyant hope gives way to darker dreams,
without gravity or reason,
they collide.
leaving me to
to labor beneath a star punched sky
while the world
sleeps in their perfect bodies.
i know that i wake to a body slayed with limitations.
that when i enter a room i find a way so seemingly gracious,
to be last,
so no one will notice my
awkward gait.
and why i so passionately
place things together.
countless discarded pieces of china and glass
that once held the very voices of the families they served.
together,
in my eternal quest for a foothold in the world of
beauty and wholeness.
that i teach
with a fever pitch passion to secure a future
where my artistic knowledge and skills live on
in the hands and hearts of others.
why i live each moment
with the same compelling wonder,
undying affection, genuine fascination
a mother carries for her child.
and why it is so intoxicatingly liberating
to write these words,
to leave behind
the shallow fantasy that life is a safe haven.
i know
the sepia relative above loved a child
that died in a handful of months as she watched helplessly
and never knew why.
and though enough years have past
that my family has long forgotten their names,
i know
the name that robbed them of sweet life.
pompes disease.
a rare genetic fatal disease identified in less than 10,000 people in the entire world,
of which you now know
one.
today is
alone we are rare, together
we are strong.
will you walk with me
to raise awareness and support research for a brighter future?
