My Family

My Family

Sunday, November 1, 2015

The Dying of the Light

I wake up, rub my eye, grope around my nightstand, and find my glasses.  When I put them on the world falls into focus.

It's also one of my favorite seasons.  I spend hours looking outside and enjoying beautiful drives as the leaves blaze and put on a spectacular show.  Marvin brings me "leaf bouquets" a tradition we started many years ago.  We talk about trees and the seasons.  I taught him how to make leaf houses like my sister and I used to do.  Heaven knows we have enough leaves around here! I hear my grandpa's voice in my head describing the trees.  It brings back memories of our walks in Arkansas together.  My husband and I talk about nature and the pretty things we see and enjoy.  He also expresses worry over deer.  When you live out here deer and bears (yes we have bears) can be a problem.

But one member of our family never participates in fall discussions.  One member remains mysteriously silent.

When we brought home Cary Lynn I was introduced to CVI or Cortical Vision Impairment.  I was told that there was nothing much I could do.  Plus we had so many other health issues on our plate I wasn't worried about it frankly.  When you have to fight for your child's life piddly things like sight take a back seat.

When I came up for air I started learning about CVI.  I took courses.  I became educated because where I live there is a sad lack of education with disabilities.  I learned.  I made connections with the top dogs in the CVI world because I needed their knowledge and support.  I became very excited the more I learned.  The brain and its functions became very time consuming and all absorbing.

We worked hard.  Very hard.  We also saw Dr. Roman for the first time.  She pioneered the CVI movement.  She took two hours with us and we left with lots of useful tips and helpful information.  I was ready to conquer the world!

The years passed.   In two weeks we will go up to Pittsburgh again.  But this time I'm not looking forward to it.  In fact, I'm really dreading it.  Not all of it.  I am excited to take my children and go to the amazing aviary and museums they have.   To enjoy a mini vacation of sorts.  I even get to visit with some of my husband's co-workers in Pittsburgh branch.  Those things will be enjoyable.

What I won't enjoy is the heart of the reason we are going there.  We go back to Dr. Roman.  Don't get me wrong, I enjoy Dr. Roman.  She is a wealth of knowledge.  What I won't enjoy is when she looks into my child's eyes.  Instinctively I know things haven't gone the way we hoped.

I hoped that she would climb the CVI scale.  That she would just shoot ahead.  That when we went back she would have amazing sight gains.

But it hasn't happened.  For all purposes her world remains cloaked in shadows.  In mystery.  Her little blue eyes that seem to look into forever have never seen the faces of those that love her the most.  Her little pupils barely react to a flashlight being shone on them.  One eye does nothing at all. It used to, but about several months ago it just gave up.

The changes didn't happen suddenly.  They have come slowly and gradually.  Like a thief in the night.  So I have a feeling that when we sit down with the good Dr Roman it may not be the meeting I had so longed for.  It isn't an easy pill to swallow.  Of all of her disabilities this is the one that I grieve the most over.  I will be fine in time and we will adapt to it, but I hate the fact that she has lost one more thing in a body that has already lived through war.

At the middle of it all is the little warrior who stole my heart.

Adorable, quirky, feisty, and a fighter.  Whatever the outcome of the appointment is I'm still proud of the progress we have made and the hurdles she has overcome.  With or without vision she takes the world by storm.  And that is good enough for me.

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