There is a topic that I have been debating whether or not to write about. It started when I read this post on an old NOAH forum:
"Maybe you have the same feeling I do about people looking at us and assuming that we are mentally handicapped. When I read the posts from some of the parents in this forum about new babies, it sounds as though they have fears or doubts about what that child will be able to accomplish. "
Then the comment to my last post made me realize it was time I try to explain my feelings on this topic. Before I explain, let me preface it by responding directly to that comment. When I decided to start this blog, I made the decision to be brutally honest about my feelings to make it more therapeutic for myself and for others in my same situation. I'm not saying those feelings are always "right" or "good" or even justified, but they are honest.
However, the negative feelings I might express are not what I convey to my son or the people we interact with. Whatever our faults as parents might be, I think Robbie and I do a good job of making Emerson feel loved - so much so that even strangers have commented on the saccharine-sweetness our little family exudes. :) When Emerson is old enough to understand, we will focus on instilling a sense of humor and a positive outlook in him so he can face whatever comes.
That said, being a parent of a person with albinism is completely different from being the person with albinism. I worry (and other parents have expressed this same worry) that the frustration, grief, anxiety, etc. we express in our online forums or blogs are being interpreted to mean we think albinism is a horrible thing. The truth is, as parents, we want our children's lives to be perfect and it's heartbreaking to realize it won't always be and we can't protect them. Every parent will worry themselves sick over the challenges their children face - no matter how big or small. On the scale of things we could be dealing with, I recognize and appreciate that albinism is relatively small.
Another part of it is that humans tend to be incredibly visual - to the detriment of other senses and ways of experiencing the world. For someone like me with average sight, it's therefore scary to imagine life with low vision. It's the unknown. I know Emerson will exceed beyond my expectations and his condition will not define him, but that doesn't mean I won't worry.
Whatever I might be feeling or dealing with in this journey, I try to remember that - like most stages of parenting - it will change by the next day or week or month. I may lose sight of the right path at times, but I appreciate that so many of you are willing to help me along the way.