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.

SketchOriginal 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.

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