Thursday, January 31, 2013


Many times people will ask me how we manage parenting children who are blind.   Helping them with things they cannot do, working on Braille (Lexi), guiding them as we navigate places-- those are all the easy things.  The difficult part for me about their blindness is not being able to fix it.   Loving someone so much and not being able to "fix" their struggles in any way is almost physically painful.  Listening to Lexi cry, "Mom, I'm so tired of being blind!  I want to SEE!" is really heartbreaking beyond anything I can describe here.

Often Lexi will be sitting and "watching" TV with the kids.  She will laugh when they laugh-- even when she can't see what's funny.  Most of the time it makes me smile.  Sometimes it makes me cry.  She talks with absolute adoration about Andrea Bocelli and how she wants to meet him and asks what he looks like.  I try to describe him and realize I'm using words that she really can't even comprehend because she has never had sight.   But she doesn't seem to care... She just smiles as I describe things she doesn't understand in the way I yearn for her to understand.

Yesterday Lexi had a field trip to a children's theatre.  She talked excitedly about the ride on the bus and the things she "saw" along the way.  This is typical-- we will often be driving and Lexi will get a huge grin on her face and say "Oh, look at those beautiful mountains!" while staring straight ahead.  Or, "Mom, do you see the pretty sun?  It's so yellow!"  And yet all along I know she is seeing just one thing.  Blackness.

And then there is Elli.   Many times she is happy-- giggling and singing and genuinely content.  Other times she seems so despondent in her dark little world.  Her rages and frustration seem more frequent than they used to be, and I can't help but wonder how much of that is because she feels trapped in a body that cannot see and cannot communicate like it wants to.   I watch her trip on things and bang her head and just want the world to be more fair to her!!!!!!

Sometimes life can be so hard.  And yet, though I would give absolutely anything to give eyesight to my sweet girls, there is something about their blindness that makes them so special.  I don't know how to describe it, and there aren't really words for it.  But today I came upon a quote that maybe helps:

  “If love is blind, then maybe a blind person that loves has a greater understanding of it.” --Criss Jami.

There is something extra special about the love that comes from these two girls. 

 I am so blessed to be their mother.