Friday, October 7, 2011

The Truth of the Matter

 She will never drive.
She will never have glasses that will correct her loss of sight.
She will never be able to see the world like you and I do.
She will never not need support or modification to help her get through her day.
She will always touch your face to orient herself.
She will always come in for a hug for security.
She will always be loved
She will always be beautiful
She will always love with her whole self
She will steal your heart.

I was watching "Going Blind" tonight (if you are interested in this documentary, you can download it on Amazon fro $1.99).  It is a good film - filed with a lot of interesting information about how older folks are losing their vision.  But I just found myself wanting to shout at the film: "You lived your life!  You have had 60 years or longer of vision!  You should feel LUCKY!"

Don't get me wrong - I DO feel bad for them.  I don't want to see anyone go blind.  I can't imagine how scary it is.  But when I see an 85 year old man in the film who is so glad he can still do what he has always done because of a drug that is helping his age related macular degeneration, all I can think of is how Finley will never have that chance at 85.  She won't have that chance at 25 if we don't find a cure.  There is a chance by the time she is 13 years old that she will have no sight at all.

So forgive me for not being as upset for an 85 year old man who is losing his sight.  He can still drive.  He can still draw.  He can still see.  He has had 85 years to travel the world and see it.  I then think of Finley, or my friend, Jennifer's son - Gavin - who has never seen anything.  Ever.  He is 3.  It just isn't the same.

I am hopeful that one day we will be lucky to have a film made about LCA.  (not us personally - the LCA world in general).  Let the world know that these children are blind.  They did not have the chance that the people in the film had to obtain a "visual" memory of a tree, a sunset, their parents. 

One day, Finley will wake up and her world will be dark.  One day, she will not know if it is morning or night for they will both be the same to her.  One day - without a cure - she will face the reality that is being blind.  And tonight, that is tugging at my heart.

"You can't worry about the what ifs, you have to worry about what is"

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