… a sightless year

It was a year ago today that I sat in a tiny room listening to a team of doctors tell me that Elizabeth’s sight was gone.  No explanation as to how or why, no treatment or a plan of how I was to take care of my daughter whose world had gone black.  The only glimmer of hope was a doctor with his hand on my shoulder saying that if you are going to go blind, this was the type of blindness you wanted and then with a half-hearted pat he turned and I sat there staring as the door closed behind him.  I was thrown back to thirteen years ago, standing in my kitchen with a phone in my hand listening to a resident tell me that Elizabeth would never lead a normal life and that I should consider my options.  I looked at my mom who I am sure was already praying and said we are going home; tonight.  It was 9:00, it was cold and dark as we gathered our weeks worth of hospital living and started on the long and lonely drive home with nothing but time to figure out what next.

By 8am the next morning I was sitting in the office of our hometown Ophthalmologist.  He knew Elizabeth, knew that up until a week ago she had a world of color that brightened her everyday and would know what to do.  Only, he didn’t.  Diagnosed with Cortical Blindness he referred us back to Little Rock and another team of specialists that would refer us back to our Neurologist in Northwest Arkansas.  Physicians from Memphis, Tennessee to Rochester, Minnesota were consulted and the answer was all the same …

be patient, she needs time, wait ….

For the last few years I have advocated passionately about kindness towards those that live life differently.  So much of this has revolved around school age kids and how they relate to and interact with their peers who are a part of the Special Education program.  But this year I found that I wasn’t practicing what I was preaching in my own life; I had allowed how people were treating me determine how I was acting towards myself and others.  2016 showed me the very best in people and the very worst. I learned so much about myself, who I was and who I no longer wanted to be. I lost all hope in mankind and found kindness is so very rare anymore to having hope restored that there truly are good people who care. I was hurt at the very deepest levels, betrayed in ways I didn’t even know could exist and made some very brave decisions to walk away from that which was contributing to my quickly blinding world.  I was losing sight of the most important areas of my life.  My world, much like Elizabeth’s went black this year.

The doctor was right when he told me that this was a good blind to be.  With Cortical Blindness there are fields of vision that can be restored with therapy and exercise.  We met regularly with our Neurology and Ophthalmology team as well as weekly sessions with vision therapists.  Glasses were not an option at this point, she needed to find her sight first and then once we knew what she was going to regain we could have the discussion on whether or not glasses would help.  Not everyone diagnosed with Cortical Blindness will regain any eyesight and I was throughly educated by doctors and therapists, family and friends to not get my hopes up.  I will tell you there were times I truly wondered if she would ever see again.  So these fields that everyone kept referring to can only be explained like this … Take a piece of swiss cheese and hold it up in front of your eyes.  See all those little holes?  Now move your head to one of them, don’t cheat and move the cheese!  There’s your field … now take another piece and do you see how the fields are different from the first?  This is everyday with Elizabeth.  Each day is like a different piece of cheese and a different field.  And because Elizabeth can’t speak to tell me what she can see, I guess!  At first Elizabeth did not move her head, she was very still and her eyes stayed dilated 24/7.  You could shine light directly into her eyes and the pupils would not react.  The doctors would take their hands and come as close to her face as they could without actually touching her, but she never blinked, never flinched and never moved her head.  She was truly blind and so as the doctors had said,  I would have to wait.

And so as I waited and as Elizabeth began to find her fields, I too began to find mine.  Each day brought a different slice of swiss cheese.  My fields of vision became my children, my family … those that are the most important people in my life.  I had a choice, I had the opportunity to pick my fields and focus on what needed my attention.  I had been filling my fields with people and the challenges of life that over time became blinding.  I will never know what field Elizabeth experienced first when she began to regain her sight but I knew that we were being given a second chance to show Elizabeth that life can be so good, so happy and I was the one that had been given the responsibility to ensure that everything she saw began with me.  I want to show her that happiness comes from within, that no one can control that but yourself.  I want to show her that, yes people will be mean and people will hurt her.  Not everyone will accept Elizabeth but she will be taught to love beyond the cruelness of those that just simply don’t understand.  She will be taught to forgive and while it may be hard to forget we will learn and become a better person.

There is a world that deserves to be seen but it all begins with the field in which you choose to see it through.  This year we will appreciate the holes of life that we must look through, remembering that everyone is deserving of kindness, respect and love even if the life they live is just a bit different.

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