Hanna’s Story: When Two Hearts Beat as One…

Inside this hellish limbo

the moments slip away

yet time drags on forever…

What god would take this boy,

this child from his mother?

Ambivalent, I pray…

and yet we know the answer—

our lives in disarray…

A cruel joke revealed:

this illness like no other—

white matter disappears.

Forever how we searched…

the answer so elusive;

each test inconclusive.

Now finally we know—

too soon we’ll see you go.

We chose your lot today

for when, at last, you sleep.

Until that moment comes,

will hold you in my arms.

Can barely feel a pulse

and yet I feel your warmth.

How can I say good-bye?

You will not see me weep

though deep inside I cry…

I haven’t slept in days

how can I rest these eyes?

…each moment left, a gift…

All I want is peace,

to ease away your pain—

perhaps a brief reprieve

from moment preordained…

                  then, when my time is through

                  I’ll beat a path to you…

                  and hold you once again.

© Ginny Brannan 2015

The image shared is of my two young cousins, Hanna and her son Cole. When Cole was born, his mother never realized the journey her life would take. Told at birth he was "normal," she would never hear those words again. Throughout his life he underwent multiple surgeries for hearing, eyesight, feeding, seizures. They travelled to Boston, Chicago, the National Institute of Health in Maryland  looking for answers. In early December an answer finally came—Cole was diagnosed with "Vanishing White Matter Syndrome." There is no cure, and very little time left for this precious 6 year old. Hanna is strong, she's had to be, yet no mother should have to bear the loss of their child. 

Written in first person, Hanna's voice.
In loving memory of Cole Michael Rapini, 2008 — 2/06/2015