Cole was diagnosed with glaucoma when he was nine months old. From the moment Cole was born his eyes looked different. His irises were larger than any we’d ever seen. He was also VERY sensitive to sunlight. Even as a tiny baby, you could tell that light really bothered his eyes. It was his sensitivity to light that initially sent us to a pediatric ophthalmologist who immediately sent us on to a pediatric glaucoma specialist. Within a week of his diagnosis, he had his first of many eye surgeries in an attempt to lower his intraocular pressure. He first had Trabeculotomies in both eyes, then Trabeculectomies. Finally a Trabeculectomy with Mitomycin began working in his right eye and kept the pressures low until 2009 when he lost that eye due to an intraocular infection. Cole has had two surgeries at Duke Eye Center in the past four months and we are planning a third trip in April, 2015….all in an effort to get his pressure at a manageable level.
Of course, Cole’s diagnosis makes his life quite a bit different than a child with no vision issues. We’ve spent many days on the road from Arkansas to Duke medical center for surgeries with Dr. Sharon Freedman. He doesn’t visit the ophthalmologist once a year – it’s more like once a month depending on his pressures and any vision changes or pain. Cole loves to play sports but they can be dangerous for any student but when you can’t necessarily see what is coming toward you as well as others can we have to be very careful. He always wears eye protection regardless of whether he is playing sports or just sitting in the classroom. When you have one working eye you want to make sure to keep it. His school has been wonderfully supportive offering orientation and mobility training, braille training, CCTVs, handheld magnification devices, an iPad and extra time to finish assignments and a designated contact for us and for Cole to work with to ensure he is receiving all the helps that are possible. It has been a real blessing and allowed him to be able to keep up with his peers in the classroom.
Cole will turn 13 in April 2015 and through all of this, he finds a way to remain positive. He excels at school and is in all AP classes. He is a Star Scout on his way to becoming an Eagle Scout. He loves to play soccer, basketball, touch football, wrestling and any other sport his doctor will allow! He also enjoys playing chess, Magic the Gathering and Xbox. Our hopes and dreams for him are like any other child. Being an active high schooler, college graduate, professional job and a family and kids of his own if he likes. A friend who faced similar challenges as he grew up once told us something his parents said: “We didn’t know how to raise a child with a visual impairment so we just raised a child.” We feel the same – we don’t treat Cole any differently and he doesn’t want to be treated that way. Our expectations are that he would do everything his peers do as long as it is safe and doesn’t put his remaining eye at risk.
We have always been very transparent with him about his eyes and he knows that it is likely that he will lose his sight within his lifetime. He also knows that we will never give up hope and that we will do whatever it takes to get him the best care possible.
Favorite subject: Science
Favorite food: Pizza
Favorite movie: Hunger Games
Favorite TV show: Red Band Society
Favorite athlete: Russell Wilson