Addi's Diagnosis

When Addison was 2 weeks old, we took her to her pediatrician for a check-up. We told him that she rarely opened her eyes and when she did they had a strange color. We also told him that even if her eyes are closed, she squints if the room is bright. He forced her little eyes open and said they looked fine, but referred us to a pediatric ophthalmologist to ease our minds. When we visited the eye doctor he looked at her and said she has oculocutaneous albinism and would most likely be legally blind. This doctor was very "matter of fact." He told us that Addi would never be able to see the big 'E' on the eye chart and would need lots of help visually. He seemed very cold in his diagnosis and I wasn't ready to hear everything he had to say. He then proceeded to check Casey's eyes and my eyes to see if we had any signs of albinism. We didn't. He said Casey and I both have a dormant gene and she received both genes, thus receiving the albinism. It seems like such a freak thing, the chances of this happening are really rare. Well, actually it's 1 in 17000. What are our chances for having another child with albinism? 1 in 4. Casey, my mom, and I returned home devastated. It seemed like our world was crashing down on us. Our perfect little world, wasn't so perfect anymore. I cried and cried, and then my mom came to me and said, "Melissa, this is her normal, it is going to be hard for you, but she wont know the difference in what she sees and what you see. Mourn what could have been and get over it. But don't spend so much time mourning, that you miss the wonder of your baby girl. She is still the same sweet Addi." So that's what I am trying to do. My mother and I began researching Albinism and learned SO much. I have met many people with albinism online and they have taught me that it's not as bad as it seems. I have a beautiful healthy daughter and if vision is the only obstacle we have to deal with, we are lucky!! Albinism does not affect her mental development, only her vision and we can deal with this. God gave her to very patient parents who are going to love her no matter what. Addi has one of the more severe types of albinism. It affects her hair, skin, and eyes. Casey and I know God will only give us what we can handle and we believe together we can handle anything. Let me clear something up, legally blind is NOT totally blind. She will be able to see some things. Everything will just seem really far away for her. Pretend you are on a football field and your friends are on the other end. You know its them by their voice, clothes, and other things, but you can't really make out small details like their face and stuff. This is how she will see. Now, let me explain the sensitivity to light. Imagine you are in a movie theater at noon. When you walk out of the theater, and the sun hits your eyes, it kind of throws you back for a minute. You squint and it stings. This is how light affects Addi's eyes. She will have to wear sunglasses, hats, and lots of sunscreen. Lucky for her, she looks dang cute in hats :)