What is a Label?

I am selling some of my children's clothes this weekend at a consignment sale that only accepts higher end clothing. They do a label check when you drop off your items. One of my items was not on the list of accepted labels and I watched the volunteer take the dress that Ruth had worn and looked so cute in to see if it would be approved. It was. Certain labels in our minds equal better quality or a higher status. We do it with clothes, cars, neighborhoods, schools. We do it with a lot of stuff.



But we also do it to others and to ourselves.



What is a label? What's in a label? Who are we as labels?



Am I a female, a girl, a woman or a lady? Does it matter who calls me what? Yes, generally it does. I am a wife, a mother, a daughter, a sister, an aunt, a cousin, an in-law. I am a ballet teacher, an adjunct professor. I guess I am a Georgian, although I still call myself an Arkansasan. I am near-sighted. I am a person who suffers from anxiety and depression. I am one of "those people". I am a sewer (not a seamstress). I am Type A. That's a label.



So, if I am all those things and more, and some of them are rather taboo, then why does the label Albinism upset me?



If you have been a follower of our family for any length of time you know that at five months old Ruth was diagnosed with Ocular Albinism. However, OA is very, very, very rare in females and even rarer if the father does not have it himself. So, more than likely, she has oculocutaneous albinism, or albinism that affects skin, hair and eyes.



But "she looks normal" you say. Yes, know. But there are degrees of OCA and she must just have a mild form and that is why she sees SSSSOOOOO MUCH BETTER than we were ever led to believe by that first doctor. The only way to tell for sure is to have a genetic test and even then there might still be questions. We decided when she was an infant not to do the test and just let Ruth be Ruth.



A specialist at Emory told us that she didn't have albinism and then the pediatric eye doctor there told us it was unclear. But today she said the word again, albinism, and said that Ruth's eyes were showing some signs of albinism (basically, reflecting light a certain way). And that she has astigmatism in both eyes. She wants to try Ruth in glasses before we have surgery.



(Ah, my kids will not go to sleep and I have to keep running upstairs to get them to either stop screaming or stop talking. I can't finish a thought).



We have known for quite some time that Ruth would have to have surgery to fix the head turn she does to stop her eyes from moving (nystagmus). But hearing that she will have glasses was unexpected. The doctor thinks that the astigmatism might be adding to the head turn and wants to correct that before surgery. She will have to wear corrective lenses even after surgery. We were thinking that her head turn was better but instead she is getting glasses.



Obviously, hearing that my daughter, a beautiful, sweet, little three year old will have to have glasses brings up a myriad of concerns. How will I get her to keep them on? What will others say to her? What will she think of herself? Will the glasses hide her face? But more than anything, hearing the word, the label of albinism again upset me.



What does the label of albinism mean for Ruth? I don't know. Nothing has changed. She still sees what she sees and it is so much more than we were told to expect. She is still Ruth. We were told by the Center for the Visually Impaired (when we took Ruth there for almost a year after her first diagnosis) that people with albinism are generally smarter than the average person. It is no secret that Ruth appears to be quite intelligent (accept when it comes to following directions and minding her parents. Dang. That will have to be another post). So what's in the label?



What's in any label?



It is the feelings, thoughts and emotions that you attach to a label.



My first brand new car, the first car I shopped for and bought, was a Saturn. Because of that, I always look fondly on Saturns even though to many they are considered a low end car. I love the brand Ann Taylor because I feel rich when I wear an article of clothing with that label. Those are emotions attached to a label, not facts, not research. Albinism may be a diagnosis but Ruth's label is my daughter, Grayson's sister, friend to Stella and Ava, perpetual bride and apparently, nap hater.



It is time for me to go upstairs and quiet two savage beasts. Yes, you can add that to Ruth's label.