Posted by: Tracy Barsamian Ventola | June 7, 2014

Looking Straight Into Lauren’s Eyes

lauren in pool in fla

So I am reading this book that is actually way above my head.  It’s like an intellectual workout every time that I pick it up!  It’s called The Way of Woman:  Awakening the Perennial Feminine by Helen M. Luke.  In the introduction, the author tells a story by Rumi that she called “The Story of the Monster” which “spoke eloquently to her about the spiritual needs of our world today”.

“A caravan of men and camels crossed a desert and reached a place where they expected to find water. Instead they found only a hole going deep into the earth. They lowered bucket after bucket into the hole, but the rope each time came back empty — no bucket and no water. They then began to lower men into the hole, but the men, too, disappeared off the end of the rope. Finally a wise man among the party volunteered to go down into the hole in search of water.

When the wise man reached the bottom of the hole, he found himself face to face with a horrible monster. The wise man thought to himself, ‘I can’t hope to escape from this place, but I can at least remain aware of everything I am experiencing.’ The monster said to him, ‘I will let you go only if you answer my question.’ He answered, ‘Ask your question.’

The monster said, ‘Where is the best place to be?’

The wise man thought carefully to himself. Then he said to the monster, ‘The best place to be is wherever you feel at home — even if it’s a hole in the ground.’

The monster said, ‘You are so wise that I will not only let you go, but I will also free the foolish men who came down before you. And I will release the water in this well.’”

At first I thought it was a pretty lame story!  A monster who eats people at the bottom of the well?  But then, I kind of understood it.  I still can’t quite explain it…but I kinda get it in so much as I can apply it to the mother wound.  In our culture, we are taught to put a lot of words around our feelings.  But we aren’t taught to feel our feelings.  In fact, we do everything that we can to avoid feeling them.  We eat.  We drink.  We yell.  We scream.  We blame everyone else for our discomfort.  But, the wise man in the story remains aware of everything that he is experiencing.  Really, he looks straight into the monster’s eyes.  And by doing that, he frees not only himself, but those who came down before him. 

I brought my diary from second grade down from the attic to read with Keira.  I was shocked when I started reading it to her!  In at least half the entries, I wrote some variation of “I have the meanest mother in the world”.  By eight (Keira’s age!), I had a well developed coping mechanism – instead of feeling hurt and lonely, I got angry and called my mother names.  It wasn’t until my early-30’s that I allowed myself to really feel the hole in my heart that I’d worked so hard to ignore during my mother’s life.  And it was only by looking directly at my mother wound that I was able to heal.  Or to begin to heal anyway.

When we met Lauren, we thought that she had Strabismus.  And she does!  But Lauren’s eyes are a far more complicated story.  And I haven’t been able to look her diagnosis straight in the eyes.  I’ve spent two years looking at it with only my peripheral vision!  The last time that I posted on Lauren’s eyes was on December 12, 2012 when I posted that Lauren’s MRI results were fine.  Before the MRI, I had read the report from Children’s Hospital.  I read it.  But it had so many complicated medical terms in it that I really didn’t digest all that much of it.  I CHOSE not to digest that much of it.  I told myself it was too complicated for me to understand.  SO NOT TRUE.  I can understand the report when I read it with a dictionary.  I was CHOOSING not to look straight into Lauren’s eyes.  CHOOSING to close my eyes to her diagnosis out of fear.

With the help of a (really awesome) Teacher of the Visually Impaired, I am now looking straight into my girl’s eyes.  Here’s Lauren’s diagnosis:

Bilateral Optic Atrophy:  with corrective lenses, her vision is 20/300 in her right eye and 20/125 in her left eye.

Nystagmus:  an involuntary moving of the eye which impacts the ability to have a clear image.

Strabismus (Variable Esotropia, to be exact):  her right eye turns inward towards her nose.

It’s still hard to look straight at this diagnosis.  I don’t want my baby to struggle.  No one wants their child to struggle.  But here’s the other piece of the puzzle:  SHE’S NOT STRUGGLING.  Just the opposite:  she’s thriving!  She runs, she jumps, she skips, she draws little people, she makes jewelry with her big sister.  She takes far more risks than Keira ever did at her age on the playground!  So while it’s important that I look Lauren’s diagnosis in the eye…that I understand and digest it, it’s just as important that I not get caught up in her diagnosis.  She’s not gonna let the diagnosis get in her way.  No way!  And I cannot and I will not create a limiting future map for her either.

No matter how Lauren’s vision unfolds, I do believe in my heart that we choose our lives.  Lauren chose her body.  Lauren chose her birthmother.  And by some wonderful miracle, Lauren chose Rob and me, too.  It was all determined far before Lauren was ever born.  And so this is her journey.  And of course, I am on this journey with her.  And I will do every single thing that I can to support her and to give her the strongest foundation possible.  And I need to look straight into her eyes to be able to do that as well as humanly possible.  I will blog tomorrow about our treatment plan…

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Responses

  1. AWESOME insight;)


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