Ian’s Story:

A letter came home. My soon to be four-year-old failed an eye screen at school, but just in one eye. “Does he know his alphabet?” the screener asked. “He can read,” responds his teacher. I call all the doctors they gave me to get an appointment as soon as possible. After all, I’m due with my second child at any moment. We see a doctor who I thought was child-friendly on Wednesday. I was wrong. On Thursday, we saw a wonderful retina specialist that will always hold a special place in our hearts and by Friday we were at The Children’s Hospital for surgery. The blood vessels were engorged and leaking and there was evidence of retina damage. Our red-headed son has Coats’ Disease. That was eight years ago.

He had five eye surgeries total. The last one when he was eight. That is good news looking back, even though in the moment I didn’t know it. He didn’t have a detached retina, need a buckle, or lose his eye. He did lose all the central vision in that eye, but it is all he knows now. At twelve, he describes it as if he has a film over that eye that makes everything look funny. He acceptingly wears glasses all the time.

He used to ask, “Why do I have to have Coats’ Disease?” or “Why am I the only one with glasses?” as he cried. But now, even without the answers, he has learned to live a typical life of a boy.

There are a few things that are always a resounded “NO,” like paintball or power tools, but otherwise you would never know that he primarily uses one eye to see the world. I just realized as we drove together in the car that he has lived so long with it that we hardly talk about it anymore. That’s when I asked him what he could see if he covered his non-diseased eye. With a shrug of his shoulder, “Not much, but my left eye is pretty good.” He has learned that Coats’ Disease doesn’t make him different, but unique. It’s pretty amazing all he can do using just one eye!