Growing up, my grandma called it “rolling eyes”. She talked about it often. So often that I asked her to stop because she had me scared to have kids. She didn’t. Stubbornness runs deep in my family and I knew I had to just put up with it. Grandma never knew the medical term for “rolling eyes” and I never bothered to find out. To her it was a mystery that needed to be solved. Theories on where it originated, how it skips generations and who will be affected were an obsession. Truth be told, many of her theories made no sense. In one ear and out the other. I was convinced that I was immune to it…maybe it was denial or like I said, stubbornness runs deep in my family.
I found out I was pregnant with our first baby after we came back from our honeymoon. I was so excited that I thought of nothing else. There was a part of me that thought the day would never come…that I would never be a mother. So I enjoyed and cherished every moment; morning sickness and all. I never really thought of the possibility of our baby having “rolling eyes”. I just felt so blessed to be pregnant.
When Luke was born the first thing my grandma looked at was his eyes. She proudly announced that he did not have “rolling eyes” and relief washed over me. Grandma said she could tell right away when the babies in our family had it and I was desperate to believe it…so I did. My husband noticed the lazy eye before I did. The pediatrician said that if it was still there at six months we should get it checked out. So we waited. Around four months I started seeing the “rolling”. We kept hope that it was just a lazy eye…maybe I was imagining things. At six months he was diagnosed with Ocular Albinism.
I felt shame that I didn’t bother all my life to find out the real name of the disease. If I did, I could have researched and known that I had a 50% chance of passing on the gene to my children. Guilt, that it was my fault Luke would have so many struggles in his life. I felt shame and guilt but also so much more. The pain can not be described. Unless you have a child with a genetic disease, you’ll never truly understand. Needless to say, the following year was an adjustment. We shed a lot of tears. It took a long time to feel normal. Better said, get used too our new normal. But it happened. We even had a second child, Oliver, who does not have Ocular Albinism.
I would be lying if I said I still don’t feel some shame and guilt. I always will. I have accepted it though. I mean, if I had known there was a 50% chance, maybe I wouldn’t have kids. Unimaginable. What would our world be like without Luke and Oliver?