My Hope – Above the Clouds

I have said before that I write to process my life – circumstances, my family’s needs, our heartbreaks, our victories, our joys, everything that swirls in my blender of a mind. I often don’t really know what I think or believe until I write it down.

So, today I share 2 poems, written almost exactly one year apart and over the same life circumstances. Namely, the health of my son who has epilepsy and Intellectual Disability diagnoses. Traversing the terrain of his world, armed with an extremely vulnerable brain leaves a parent lost and powerless. We spent 7 long years begging and pleading school districts to help us accommodate him and we whittled away thousands and thousands of dollars searching for diagnoses. I spent days and nights on my knees (sometimes literally and other times figuratively) humbly presenting my requests to God. The first diagnosis that came was “epilepsy” and trying to control the seizures was a long, arduous process that was difficult to walk through. Here was my response to years of heartache with no reprieve in August of 2014:

Storms & Silence

Anger beats red and
A Bitter taste chokes my roots
Clawing for some help
My hands are dirty and I am raw
Grime clings beneath nail-beds
And soot stains the heart-lines
Hope has fled with my youth,
Sorrowed and soiled.
I can’t help him.
From where will help come?
I have lost my breath.
From where will his help come?
The fight’s gone from my bones
Worn, with an ache in my knees
From begging far too long.
Worry lurks behind me and a fear that is real
Steals my sleep and chases away peace.

Arms wide open with white knuckled fists
I lean into backbreaking winds.
once they slowed, I fell face down with nothing to resist.
I am hoarse from calling out to You.
I need water, my well is dry.
I watch. Wait.
Prayers carried by the wind
And dashed against rocks I can’t see.

I watch.
Arms wide open with white knuckled fists
I clench my eyes shut and bite down hard.
Straining to hear.
But the silence ensues, piercing me
And Ravaging him
No shelter from storms that seek to destroy
This small life, significant to ME
my prayers, love and patience poured out on its behalf…
is crumbling to ruins before my eyes.
Too many can’ts, numberless don’ts.
Isolating us each morning.
Where are Your promises? Where are your new mercies?
Why.

The second poem I wrote a few months after receiving the second diagnosis of Intellectual Disability (formerly known as mental retardation). While the people in our lives grieved, I found solace in having everything I already knew – validated. Finally. And with that validation came the help of school districts and more specialists. The best part? I could give myself a break, and lower my expectations of him and require the world around him to do the same. It gave us all more room to breathe. It saved our family and here was my response to the help after long years of searching and waiting in desperation for a breakthrough (August 2015):

above the clouds

In all this, I found that God is still the same. Even when it seems as though He does not hear and we are alone, we are not. And if I am angry, He can handle it if I pour it out to him. I cannot strive in Hope for a better future or relief or changed circumstances. Those kinds of hopeful prayers will be dashed. Instead, I must make God Himself my hope. He is with me, He is with my son. He is for me, He is for my son. God is enough and He does sustain, if I keep my head up and looking above the clouds…even while they block the sun.

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The music in my bones

seasons of frustration
take their toll within a
shell-shocked phantom limb
i can’t win and neither can i lose
just running circles round
things i’d rather choose
so tired of wondering
can’t wait to stop the waiting

sometimes, these prayers bounce right back
and the logic makes no sense
has my heart really missed the mark
did I color the wrong lens?
desert sand cracks my skin
and hangs my soul to dry
living water trickles slow
but great floods fill the sky

some things most dear to me
slipped through my fingers long ago
old mistakes are traded for
the music in my bones
oh, I let the song in my soul fly
but an ache traps the melody,
it vanishes in smoke

 

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In response to the Daily Post Prompt “Music

In the last several years, I have had to put many of my personal interests and talents on hold as my time is given over to caring for 3 children with special needs. But the flip side is that I am a classically trained vocalist and I can easily catch a brief but genuine escape when I sing, losing myself to the melody. And when the song ends, its back to the daily grind and some of the ache of today returns. So sometimes, I just try to keep singing through the day – If it is socially acceptable. And sometimes when it isn’t.