As someone who is constantly fighting for a cure for blindness it is hard to imagine embracing blindness. Then, one day, I listened to a blind professor talk about how she embraces her blindness and that she’s not this flawed human being just because she can’t see. It got me thinking. By teaching my son that we should fight for a cure for his blinding disease am I also teaching him that he has this flaw that has to be fixed? Then I thought what would he be like if he was born without this disease? The fact is he wouldn’t be this amazing, smart, funny young man that is my son. He would be someone completely different. I don’t want that. This disease is part of my son and if I don’t embrace it then I’m not fully embracing my son. Even if there is a cure one day, this disease has been part of his life for years and it will always be part of him.
So how do I walk that fine line of wanting to destroy the disease and embrace it at the same time? What is good about a blinding disease? It’s hard to imagine anything good about it, right? Wrong. It’s introduced us to a whole community of people who support each other. It’s helped my son speak up for himself when he needs help. It’s helped him make adjustments in life when he should. It’s taught him to stand up to any challenges in his way. He has the school system, the Division of Blind Services, friends and family all there to help him if he struggles. This disease has actually opened up doors for him that most kids don’t get to walk through. Some might say he’s lucky until they remember it’s all because of this blinding disease. He never seems to be bitter about having the disease though. It is what it is and he just keeps moving on through life as he should. He fights for a cure though too.
Scientists are getting closer and closer to a cure each day so there is plenty of hope that my son’s disease can be cured. Some treatments have already brought sight back to kids with similar diseases so we know it’s possible. It’s a very exciting time.
Then I wonder what will he be like as a fully sighted person? Will he change? Yes, he’ll be able to drive and he won’t have to put books two inches from his face anymore, but what else will change? I hope one day we have the chance to find out. If it doesn’t happen, will the world end? Of course not. My son will continue his journey the same way he has been, with kindness, strength, and courage.