My Dad's Eyes
Story by: Desiree Webb
"Four Eyes"
Growing up I was always teased about my glasses. I still remember being in the 1st grade and crying because a classmate called me "four eyes." I never actually realized how big my glasses made my eyes look, but others sure did. I never knew why I had to wear glasses, all I knew was that my mom didn’t have to wear glasses, my younger brother didn’t have to wear glasses but my dad sure did, actually my dad's glasses made his eyes look huge! If only I had known that mine looked just as big.
I thought that constant visits to the eye doctor was a normal
thing and that everyone had to do it but when the eye doctor prescribed me an eye patch to wear in order for my left eye grow stronger I knew that this was the furthest thing from normal. Imagine a 3rd grade girl playing with her Barbie while wearing an eye patch!
Let’s fast forward now to my middle school years (without the eye patch), I would still hear the occasional "big eyes" joke but people started to back off once softball season started. The visits to the eye doctor were still a pretty popular thing in my planner and the doctor would always ask me if I could see the ball when I'd go up to bat. My doctor always seemed surprised when I'd let him know that I could definitely see the ball and I could hit that ball pretty far too. I remember one particular visit when I was in the 7th grade, my doctor kept mentioning that I needed to go see a retina (tissue that lines the inner surface of the eye) specialist. I had no idea what a retina was back in those days so I just blew it off and forgot about it until the day I went to go see that retina specialist. After that appointment I never looked at mine or my dad's "big eyes" in the same way again.
I thought that constant visits to the eye doctor was a normal
thing and that everyone had to do it but when the eye doctor prescribed me an eye patch to wear in order for my left eye grow stronger I knew that this was the furthest thing from normal. Imagine a 3rd grade girl playing with her Barbie while wearing an eye patch!
Let’s fast forward now to my middle school years (without the eye patch), I would still hear the occasional "big eyes" joke but people started to back off once softball season started. The visits to the eye doctor were still a pretty popular thing in my planner and the doctor would always ask me if I could see the ball when I'd go up to bat. My doctor always seemed surprised when I'd let him know that I could definitely see the ball and I could hit that ball pretty far too. I remember one particular visit when I was in the 7th grade, my doctor kept mentioning that I needed to go see a retina (tissue that lines the inner surface of the eye) specialist. I had no idea what a retina was back in those days so I just blew it off and forgot about it until the day I went to go see that retina specialist. After that appointment I never looked at mine or my dad's "big eyes" in the same way again.
Living with Ocular Albinism
Walking into the retina specialist's office was like walking into a movie, everything looked so fancy and expensive. All of the equipment was large and very shiny. The chair that the doctor made me sit in was comfier than any chair I have ever sat on in my entire life, being in this office felt so surreal. Sad to say, I was quickly brought back down to Earth in an instant. The retina specialist kept putting drops into my eyes and then came the IV; yes an IV at the eye doctor! While blue dye was pumping into my veins the retina specialist kept shining bright lights into my eyes and then I heard the word "Albino." It seemed like only seconds passed until the room was filled with other doctors wanting to take a look. I felt like a freak show. The next thing I
remember was trading places with my dad; this was my appointment why did they want to look at my dad? My dad now was the star of this "freak show." There were so many doctors with so many questions and that’s when I realized for the first
time in my life, that something was not "normal" about our family.
While I was sitting in the waiting chair watching my dad being evaluated I heard him say that he has Ocular Albinism and that he inherited it from his mom. He explained to the doctors that he is legally blind and that he is unable to drive. Everything started making sense; I now knew why my dad's glasses were so thick and why his eyes were always moving. Then I was overcome
by questions of my own. Are my glasses thick because of this eye disease? Am I going to be able to drive? Does my brother have these problems? Do my eyes shift? Is my dad really legally blind? If my dad is legally blind how come he can still play catch with me?
remember was trading places with my dad; this was my appointment why did they want to look at my dad? My dad now was the star of this "freak show." There were so many doctors with so many questions and that’s when I realized for the first
time in my life, that something was not "normal" about our family.
While I was sitting in the waiting chair watching my dad being evaluated I heard him say that he has Ocular Albinism and that he inherited it from his mom. He explained to the doctors that he is legally blind and that he is unable to drive. Everything started making sense; I now knew why my dad's glasses were so thick and why his eyes were always moving. Then I was overcome
by questions of my own. Are my glasses thick because of this eye disease? Am I going to be able to drive? Does my brother have these problems? Do my eyes shift? Is my dad really legally blind? If my dad is legally blind how come he can still play catch with me?
Genetics
With about a million and a half questions running through my head my family and I followed the retina specialist to his office. I listened to my dad explain how he had inherited Ocular Albinism from my grandma and how he once had a chance to attend The Arizona School for the Deaf and Blind but turned it down.
The retina specialist informed me that I was pretty lucky that I was not born a boy because if I would have been then I would have been facing
the same problems as my dad. He explained to my parents that the gene for Ocular Albinism is found on the X chromosome (women have two X chromosomes while males have one X chromosome and one Y chromosome) and that my dad inherited a defective copy of the gene on the X chromosome from my grandma, who happens to be a carrier. Men only need one gene to show signs of Ocular Albinism, women normally need two to show any signs of Ocular Albinism however, some women can show some signs of the disease with only one defective gene present.
The retina specialist informed me that I was pretty lucky that I was not born a boy because if I would have been then I would have been facing
the same problems as my dad. He explained to my parents that the gene for Ocular Albinism is found on the X chromosome (women have two X chromosomes while males have one X chromosome and one Y chromosome) and that my dad inherited a defective copy of the gene on the X chromosome from my grandma, who happens to be a carrier. Men only need one gene to show signs of Ocular Albinism, women normally need two to show any signs of Ocular Albinism however, some women can show some signs of the disease with only one defective gene present.
Looking Toward the Future
Let’s fast forward one last time to the year 2012. I am in college, I ditched my glasses and started wearing contacts and I am able to legally drive a car. I only have to see the eye doctor once a year and I never have to go back to the retina specialist again.
My dad is older now and a lot more stubborn so he never visits
the eye doctor, he just wears the same glasses as he always has. A while ago my eye doctor attempted to tell my dad about a corrective surgery but of course, my dad did not listen. My dad is still unable to drive and never talks about the disease.
I have learned that when I do decide to start a family of my own
that I will pass the gene onto my first born son or daughter. If my first child
is a boy he will have the same problems as my dad. If my first child is a girl
then she will be a carrier and will more than likely have to go through the
things I went through as a child.
When I think about my future, my dad's future and my future children's future I get sad but I always feel hopeful at the same time. I am hopeful that doctors will make advances to help further curb this disease and that my dad will always be the kind of dad that can play catch with me in the backyard.
My dad is older now and a lot more stubborn so he never visits
the eye doctor, he just wears the same glasses as he always has. A while ago my eye doctor attempted to tell my dad about a corrective surgery but of course, my dad did not listen. My dad is still unable to drive and never talks about the disease.
I have learned that when I do decide to start a family of my own
that I will pass the gene onto my first born son or daughter. If my first child
is a boy he will have the same problems as my dad. If my first child is a girl
then she will be a carrier and will more than likely have to go through the
things I went through as a child.
When I think about my future, my dad's future and my future children's future I get sad but I always feel hopeful at the same time. I am hopeful that doctors will make advances to help further curb this disease and that my dad will always be the kind of dad that can play catch with me in the backyard.
Credits
http://www.albinism.org/publications/what_is_albinism.htm