Bending But Refuse To Break (Re: Maci's Vision)

When Maci was in the NICU, one of the doctors noticed that her head was not growing (her head circumference was staying the same) and sent her for a MRI.  The MRI showed an area of her brain filled with water instead of brain (cystic encephalomalacia was the description from her MRI).  The area involved would possibly effect lower motor skills (which she hasn't had an issue) and vision.  We were told that Maci did have some vision disturbances but the degree of impairment was unknown and we just needed to "wait and see".  In May 2012 and November 2012 when she saw the Opthalmologist, it was still a waiting game.

Today, we received a diagnosis of CVI, Cortical Vision Impairment / Cortical Blindness.  I was there with Maci alone because Rick was over at Methodist for his day 2 of donor medical work up.
I typically ask a million questions and learn EXACTLY what/how/when/why, etc.  Not today.  I was only able to ask a few questions before I just couldn't process anything further.  My first question was "Is she blind?  Is she legally blind?" to which Dr. Hoehn replied, with a very sympathetic, "Yes".  Talk about a punch in the gut. 
Although this was mentioned in the past as a possibility, it still takes on a whole new feeling when you hear the definitive diagnosis and that YES, you are receiving ANOTHER diagnosis that is irreversible and CANNOT be made better with a transplant. 
I asked if she would ever read a book, if she held it very close to her face (because some legally blind people can)....no.  I asked if she would ever drive a car...no.  I asked if her vision would ever improve...no.  In a nutshell, she can (sometimes) see shadows and changes in light. 
Dr. Hoehn did say other things but at some point I think I stopped hearing what she was saying.  She did recommend early intervention of which I have already requested paperwork. 

I guess I will concern myself with schematics later.  Maci's next appointment isn't for 6 more months but I will need to have some paperwork completed so maybe I can grab Dr. Hoehn or a resident and see if they can go into detail and I will take notes. 

I have never intended for Maci's kidney failure to define her and I have no intentions of this impacting her negatively.  From her birth, I have believed she was to serve a purpose and now I think that purpose is even bigger.....bigger than any reservations I could possibly have about her new diagnosis, bigger than my heartbreak at this moment.  This just adds to her testimony.  My baby girl was always going places.....now, I just get to be the one to always drive her there.  :)   

Just read this from TD Jakes Ministries:  "You must be a person who is relentless – always abounding in the work of the Lord. Relentless is a word I use to describe people who will not take no for an answer! They try things one way, and if that doesn’t work, they try it another way. But they don’t give up. You, who are about to break beneath the stress of intense struggles, be relentless! Do not quit!" 
I will take this as instructions.  How is that for timing?    
Process, Pray and PRESS ON!