Sometimes there are triggers that reopen the wounds of hurt. Those things in life that we can not change and are hard to accept. Yesterday I received a letter that I requested from Luke’s Ophthalmologist so he can be evaluated by the school district. You would think since I requested it, the letter shouldn’t have punched me in the stomach as hard as it did. It was the words, “low vision services certainly for when he is in school.” That is exactly what I expected it to say, but it felt like the first time I heard the words “Luke has Ocular Albinism.”
This morning as I walked through the door after dropping Luke off to preschool, the familiar tears streamed down my face. I have these moments where I just can’t hold it together. I try to stay strong for my husband and kids. Let me say, I am the glue that holds the family together. My husband is the best and I cannot imagine my life without him but lets face it––women are the glue, usually. I hate whining about my problems because I don’t want to be a bother, but I realize I need an outlet. So here I am starting a blog. I figure if you are bothered by my problems you have the choice not to read them.
I guess I should explain what Ocular albinism is. It is a genetic disease commonly called being an Albino. Luke has a form that mostly effects the eyes. Although his hair is lighter than my husband’s and mine you would never think he is an Albino. Which by the way I now hate that term. Its just hard to explain it any other way. Most people don’t realize that when there is a lack of pigment the eyes can’t develop properly. It causes nystagmus where the eyes are in constant motion. It also can cause strabismus which is a lazy eye, severe light sensitivity, difficulty with depth perception, and focusing. Luke has all of those. His visual acuity is 20:125. That means that what I can see at 125 feet, Luke can see at 20 feet. When I wear glasses my sight is corrected so I can see 20:20. Luke wears glasses to improve his sight but he will never see 20:20. As of right now we are not sure how improved his vision is. We will know more at his next appointment and when he gets older.
I have no doubt that Luke will lead a happy successful life. We just may have more struggle to get him there.