Fight for that Second Chance
I have had every doctor/specialist that has interacted with Kennedy tell me that she cannot see...that she isn't responding to any stimulation. Each time I have to fight back tears and try to control that falling feeling in the pit of my stomach. To prevent myself from grabbing my baby and running away and hiding from all of the words that I don't want to hear and the hopeless facial expressions that I have to see. And every time I push them to try again, to look again, to test again. And EVERY. SINGLE. TIME they try again and test again they get a reaction. Every time they tell me "wait--she does respond to light" or "hold on--that time I saw a reflexive blink", etc. Every interaction I have I am reminded that the first look is not always the correct one, and that--ACTUALLY--an additional one is needed.
In our society we tend to judge books by their covers. Well, in most cases you can get somewhat of an idea of a person based on their initial presentation of themselves to you. That takes some effort on the part of the person doing the presenting and usually that effort is to put forth the most favorable presentation on their own behalf, whether it be by dress/gait/posture/etc. In this context, the specialist that is looking at Kennedy is not looking at a presentation of her sight at its best, they are observing a small snapshot of how she is using her vision at that pinpoint of time. This difference between observation of a trait by a third party and presentation of a trait by the first/object party generally means that you will get a less favorable presentation of that trait by observation--and will generally require more than one observation to get a good idea of the presence/prevalence of that trait. I believe that as Kennedy gets older, she will use her vision more and more. At her five months of age, four adjusted, she is still in a state of constant observation of her surroundings and, VERY IMPORTANTLY, is not at all self aware. This means she is not in a state of presenting herself to others, so she doesn't know to show her ability to use her sight in front of the specialists that are looking for it. Further to this, she will naturally use the senses to observe around her that are easier to use. She is more often feeling, hearing and smelling what is going on around her than visually observing. I believe that sometimes she brings her visual senses together to focus in on something (usually, my face) and then processes it. You can see how she does it--her eyes focus, she smiles, and then there is a brief time (usually a few seconds) where her eyes dance while she is processing. I am seeing this happen more and more. It happened after the VI specialist today gave her initial impression that Kennedy wasn't responding an subsequently saw her respond to her stimuli. Once Kennedy was back in my arms after Donna, our specialist, praised her on her response, Kennedy graced me with an eyelock and subsequent laugh and coo-fest as if to say "See, Mommy--I can do it. I just need a chance."