the eyes of mother love. a frozen snapshot of adoration.
a playful peek a boo moment encompassing her small daughter.
perhaps her husband is on the other side of the camera
and the smile i sense, but cannot see, is for him.
the look of love and utter acceptance,
is for the small child.
the compelling love
of a mother for her child.
i have one son and i will look at him
with the same undying affection forever and a day.
it might be sunday, certainly summer.
perhaps the sun is angling down down down
on this forever sepia moment.
if you look closer, closer still......
you may notice behind the cheery gingham pillow
the mother deftly rights the child.
secures her place in the spindle backed chair.
i know the child.
the bend of her fragile neck.
the lifeless turned out feet that hang like a rag doll.
i know the disconnect.......the inability to feel the life
that courses down those helpless arms so that her impossibly small hands
are pinned on like mittens hanging from bright yarn,
swinging free around the neck of winter.
because when i sleep at night
my bones cave in on themselves.
when daytime's buoyant hopes give way to darker dreams,
without gravity and reason, they collide.
i know the sounds of labored breathing,
the marathon attempts to wrench my body over,
like a set of crashing waves, forever breaking on my scattered night.
i know i wake up each morning exhausted
and carefully walk in the cold pre dawn while the world
sleeps in their perfect bodies.
to labor beneath a star punched sky until, finally,
fragile muscles consent to untangle
the bones of night.
i know that i live in a body racked with pain
and when i walk into a room i find a way so seamlessly gracious,
to be last,
so you will not notice my awkward gait.
and why i so passionately put things together.
countless discarded pieces of china and glass
that once held the very voices of the families they served.
in my eternal quest to keep my hand in the honey pot of
beauty and wholeness
as my body falls to ruin with each passing day.
that i teach with a fever pitch passion to secure a future
where my artistic knowledge and skills live on
in the hands of others.
why i live each moment in wonder with the same compelling adoration,
undying affection and genuine fascination
a mother carries for her child.
and why it is so intoxicatedly liberating
to write these words
to leave behind
the shallow fantasy that this blog was a safe haven
where i could beat this disease
and its ugly grip on daily life by not allowing it to breathe,
here, among us.
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 our family has long forgotten their names,
the name of the disease that robbed them of sweet life.
a rare genetic fatal disease identified in less than 10,000 people in the world,
of which you now know one.
today is rare disease awareness day.
alone we are rare, together
we are strong.