Tag Archives: Poetry

Memories of a Lifelong Crusade

Memories tend to spring up in unexpected places.

Some recent remodeling led to our reorganization of the bookshelf in our downstairs family room. As we were sorting through our treasures, deciding what to keep and what we could bring ourselves to part with (as we tend to be book hoarders, and as such there were overflowing piles stacked against the shelf along the floor), I came across an anthology from a local library contest I had entered in 2011. In it was the poem I had written specifically for the contest about Miss Elliott.

At the time I wrote this poem Miss Elliott was still alive. Our lives were consumed with her care, in the best possible way. I railed against the pitying looks and downward glances I caught in the eyes of others as we navigated our days. My drive and desire was to share with the world how wonderfully beautiful, how extremely important her tiny life was. And to rid it of its feelings of sorrow for us. It was the same drive and desire that would lead me to write my book about her life after she had passed. Purchase your copy of Three Short Years here.

Reading the words I had so carefully crafted brought these feelings flooding back. It was always clear to me that I was to be her voice. Although I still strive to educate others about Tay-Sachs disease and share the story of her life, my platform has changed dramatically from when she was alive as I now carry on in her memory rather than for her honor.

One of the key pieces of information I was determined to convey to the world was that her life may have been different from most, from what was expected, but it was not in any way bad. It was not sad. It was full of unconditional love. As a parent, I feel that many of the things we hope for our children, which the world will inevitably rob them of, were freely granted to Miss Elliott. She was never to know rejection, disappointment, abuse, fear, or unrequited love. She never toiled through pain or loss. She lived a life of nothing but love, acceptance, and care, and she died with a pure soul, having never even unintentionally harmed or disappointed another being.

Sketch Original sketch artwork of a Soulumination photo of Miss Elliott.

She was different, but she was perfect.

And I’ve always wanted the world to know it:

I see her existence on a parallel plain.
I watch as she sits alone in her silence.

When I look into her eyes and I can see forever,
yet out of hers she cannot see at all.

I carry her from place to place and know I am her legs,
for try as she might, hers will not propel her body.

Bound by dependence and no free will,
I am her voice as she cannot speak.

While her failing shell deteriorates
her soul shines brighter and brighter.

Its light, like the sun, escaping its cage
in a feeble attempt to bar it in.

By our paltry standards she may be physically broken,
but her spirit grows stronger each day.

Tired and weak she carried on.
As change comes to her, she also is changing our lives.

Always giving more than she receives,
she asks for nothing in return.

What can you learn from a dying child?
Enough to change the world.

The Victory of Love

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I laugh, I cry, I scream, I fly, I sink, I swim. It’s all the same.

I twist, I shout, I turn about every time I call your name.

And on deaf ears my words do fall, and off cracked hearts me feelings roll.

Into darkness, depth, despair, where love and pain are a kindred pair.

A gruesome scene, torn all to shreds; the elation within a mother’s head.

What once was so is so no more, and there she stands at fate’s closed door.

The hounds have come and named their price. Her bounty ransomed, stolen yet.

Upon her knees her body falls. Darkness kisses her eyes, now wet.

She hangs her head low in her hands, and rages at Satan’s evil demands.

For in this world she may be scorned, but soon, in death she’ll be reborn.

A fury lights within her soul and through the night in haste she rides.

When at last the light draws near and the realms of heaven and earth collide.

The battle done, her prize is won, and it in spirit she reclaims.

For through the pits of hell she’s come and nary a tinge of charring remains.

Though the lamb was slaughtered here not even death can cause her fear,

for all of Satan’s grief he hurled, the blood was shed to cleanse the world

That which by faith we onward go, for love is the victory we know,

that overcomes the world.

Portrait of a Mother

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For the one who is, the one who was, and the one who never would be,
for all my children.

I had a daughter once who died.
I have another by my side.
I had a son I’ve never known,
he who will not know our home.

A girl who’s future so small and bleak,
The one whose life is gone, as we speak.
Lit softly in my arms to rest
and nestled her head against my chest.

Her sister survives in a world below
while she looks on as we onward go.
A distant mortal memory of heart,
but one that time nor space could part.

All of her, a part of me.
Shadows of her life I see.
Dancing in and out of time
reverberating through this rhyme.

Her life I carry with me now
as I trudge along somehow.
For her sister’s sake, I survive.
I’m learning how to be alive.

Though my son was never mine,
he existed within my mind.
A figment of imagined child,
With thoughts of him my mind goes wild.

A boy we were to never know.
A son, not ours to call our own.
I love him now, I loved him then,
I’ll love him ’til my days shall end.

For all my children near and far,
for all of them, for who they are,
My heart belongs to every one,
and will until my days are done.

Ever Will I Search For You

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Even for those who believe that their loved one has moved on to a better place i.e.: Heaven, there can be difficulties in accepting and understanding the bodily separation of that person, combined with their spiritual existence somewhere else, somewhere that is intangible to the living.

Please do not misread the passage below and interpret it as an example of “red flag” so-to-speak in the direness of grief, or take it as my expression of the want for my life to be over. This is not the case. I have written extensively on the ability to carry on with life, through grief and even to be happy and productive. The purpose of this poem is merely to express one aspect of how grief affects the life of those still living through the loss of a loved one-even the happy and productive people. Grief is carried with you through it all.

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Time holds no other place in my effort than to be a roadblock in my search.
You were relinquished from all known existence like the setting sun across the horizon.
At that time my heart beat slowed, the muscle itself atrophied and it grew cold and dark within my chest.
The life seeped from my pores and vaporized into the swirling air before my eyes.
The wind carried it silently away.

My blood drained out from invisible wounds and my body turned to stone.
You had vanished and suddenly no one could tell your life had ever occurred.
But the memories of you streak the remnants of my mind with warmth and golden light illuminating the dark passageways to my heart.

Alone, I traverse the depths of Hell in your absence.
I am trudging my path back to you through the labyrinth of a left-over life.
The hounds howl and the mist grows thick.
Fires burn in the distance.
I choke on their smoke.
Great vines encompass my feet, encircling my legs and tightening their hold with every step I take.
My presence is fleeting and it also is final, but my endurance as well as resolve strengthens through every maneuver.

My breath is heavy and my empty arms ache of their weightiness.
To four corners and back I have been.
On what plain do your reside?
Are you there? Where?
My mind, as fragile now as a pile of ashes swept away by the breeze.

I am a prisoner of this body and of this life itself.
Only in death, will my freedom come.
Only then, will my shackles be broken.
Only then, will the answers I search for be made known to me.
Are you waiting?

Will you remember me?
Have you moved on?
Is there a place for me beside you?
Can you see me now?

I dreamt of you once in horrific detail.
A betrayal of my consciousness.
I awoke and you were not there.
It was a knife in my already inadequate heart.
I pleaded unsuccessfully with my mind to take me back to my state of slumber.
When will I never again be forced to leave that magical enfoldment?

When will the sight of you be a reality once more?