For those new to Goodbye Normal I’ll give you a quick run-down on our oldest daughter. Lola is blind (or severely visually impaired). In the blind community there is a movement to move away from the distinction between these two things and just use the word blind. Typically I do say blind but it can be confusing to people when they find out that she can see light and color. Lola has always been blind and came home to us almost two years ago. With lightning speed she learned English (like a boss) and is doing very well with her Braille studies at school where she is integrated into a regular ed classroom. She has overcome sensory issues and is currently under the care of a chiropractor for her ADHD diagnosis. We have also avoided medications by using natural supplements and oils.
So on to the update now that you are completely filled in. As some of you know we have gone back and forth about whether or not to pursue a cornea transplant for Lola. Recently we even went as far as considering scheduling that surgery for the last week of school. After a tremendous amount of research, meetings and calls with doctors and praying for wisdom we have decided NOT to pursue surgery. There are many whys that led us to that conclusion. Lola’s eye condition is currently stable, she goes to Vanderbilt twice a year to check on that stability. Eye surgery would open up the door to repeated surgeries, treatment for the glaucoma that would develop and monthly eye exams under anesthesia. She would experience continued pain and tenderness in her eyes, she has no pain currently. The surgery has no predictable outcome. It could fail completely and leave Lola with worse vision than she began with. Cornea replacements have an almost 100% failure rate in pediatrics. After all is said and done it was predicted that the new corneas would, if successful, improve her vision in only an extremely minor way.
So we have stepped back and put this decision in our daughter’s future hands. When Lola is older we will give her the opportunity to consider the surgery. When her risks are lower and she fully understands the discomforts and medical dependance that will enter her life.
You see… Lola is happy. She uses what she has and does well with it. She has no limits, she can climb mountains if she chooses. Vision plays no part in who she will become and what she can accomplish.