“What’s a cherry red spot”, I asked. 

The doctor wouldn’t tell me.  She dodged the question completely.  Again, not a good sign.  I was desperate for some sort of concrete answer about anything at this point.  I wished she’d just spit it out already!  If I could have, I would have shaken it out of her.  She told me that she was scheduling an appointment at Children’s Hospital in Seattle for us the next day.  They would be drawing her blood and running a screen for possible neurological conditions.  Neurological?  But she’s functioning, I thought.  She’s been getting better.  I was more confused and now scared than ever.  What is a cherry red spot anyway?

Something no one should ever do is go home and Google any possible medical condition they suspect.  All it will do is scare you to death.  Or in my case, rip apart your world completely.  I just know that after I searched for “cherry red spot” online all it could represent was horribleness.  I spent the next three hours crying in a ball on my kitchen floor.  I had to call my husband, Loren to come home from work.  I had never done that before.  I read online that cherry red spots are most likely indicative of Tay-Sachs Disease.  The Wikipedia blurb didn’t have any redeeming things to say about it.  Once we were at Children’s with the ophthalmologist, and he confirmed that he suspected Tay-Sachs Disease I had to admit that I had heard of it, but had no clue what it was, what it meant. After his very dry and brief explanation from a neurological standpoint only one thing stuck out to me: the word degenerative.

“Degenerative?  She’s going to get worse”, I asked.  And then the unforeseeable end all blow of an answer came spilling from his mouth.

“She’s terminally ill”.

I watched those words pour out in horror and slow motion.  It was the most vial sound I had ever heard.  I remember thinking of how badly I wanted to try and gather them up from the floor as quickly as I could and shove them back down his throat.  I wanted to shut him up and make him never have said it, but it was too late. It wasn’t a mess to be cleaned up and taken away. These words had been spoken, and the sound of them could never be unheard. It was dark and dense in sound, like the thud of a lead pipe hitting a dry dirt floor. It still reverberates in my ears.  And this is when I experienced true devastation.

     This was the one and only time in my entire life, up to that point, that I was literally speechless.  As we made our way over to the hospital’s lab to have her blood drawn to be tested for this rare disease the clerk asked me the patient’s name and I remember my tears staining my cheeks and my mouth opening, but my precious daughter’s name I couldn’t will to come out of the gaping hole on my face. I took a breath and tried again, but still nothing. Finally Loren rescued me and spoke in my stead.

“Elliott.  Her name is Elliott, Benson”, he said.

The next day as I walked out to check the mail, that dreaded child profile had arrived.  Frustrated, angered, and saddened to read about what my child could and would not ever do, I called the state department of social and health services immediately and requested that they stop sending these to me because we had no need for them and they upset me too much.

I gave my daughter a masculine name to give her a competitive edge and to hopefully be a self-fulfilling prophecy of strength.  Little did I know when I dreamed it up what challenges she would soon be facing, or how fitting it would become.  She has always been “Miss” Elliott.  It is how we, and in turn everyone else always addresses her.  It was never a name she needed to live up to.  Never did her name upstage her.  She embodied it fully and she wore it completely.

Excerpt from THREE SHORT YEARS by Becky Benson  Published with Permission

You can see documentation of Miss Elliott’s medical journey HERE.

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