alone we are rare, together we are strong

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 

rare disease awareness day.

alone we are rare, together

we are strong.

 

will you walk with me

to raise awareness and support research for a brighter future? 

 

 

Comments

[somepinkflowers]

oh
dear sweet one!
you have raised $445
so
far!

plus even more--->
you have raised
Our Awareness
and
Knowledge is a powerful thing,
as you well know.

{{ only a few more $$
are needed
to help U reach your goal...
i am working
on
manifestation
over
here }}

[Spadoman]

The trip was planned to come south, but I couldn't wrangle being there for the actual walk. Know the prayers are never ending from this end. Strangers know of Pompes and other rare diseases and pray for the people afflicted. My spirit will walk with you.

Peace

[melinda]

You write so beautifully...