Opinion — May 12, 2011 12:38 am

Point of View: Degeneration X

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A young mother contemplates her son’s degenerative visual impairment and the implications it will have on his life.

The 10th of August is my son Xavier’s birthday, so every year I load up my car with a bunch of skinny teenagers, all eager to spend their day skateboarding in the late summer sun.  I drive north on the interstate, listening to them say things like “I front feebled the session’s extension rail last weekend” and “ Dude, that was stevie,” and I have no idea what they’re talking about.

And so I smile as my thoughts drift off and I think about the day ahead of us. We’re going to the Rob Dyrdek skate park in Kettering, Ohio—about an hour from our home in Cincinnati.  Xavier loves this place because he’s an avid skateboarder.  He lives and breathes triple kick flips, nollies and tray flips.  His bedroom is filled with skateboarding gear and everyday he can, he’s on his board.  When I see him skating, I’m happy, but I’m also scared and profoundly sad.

Xavier Haas, the writer's son. Photo Credit: Desire' Bennett

Three years ago Xavier was diagnosed with Stargardt’s disease. It’s a form of macular degeneration that affects his central vision. Imagine looking straight ahead and having large, black spots blocking your view—this is what Xavier sees. This condition is rare, and there’s no known cure.  When the doctor told us Xavier’s eyesight was slowly diminishing, I couldn’t believe what he was saying. I thought about Xavier’s big, brown eyes and how one day they might only be for show. I began thinking about how this was already affecting Xavier’s life: In school he’s unable to read the blackboard from his desk. At home he must sit an arm’s length away from the TV in order to see the images on the screen. He can’t function without his glasses. At best he will always have terrible vision; at worst, he will become totally blind.

When I think about this happening to him, it’s almost too much for me to bear. I’m terrified because I know there’s nothing I can do about this drastic change that’s going to take place in his life.  It’s one thing to be born with blindness, to never have seen the blue arc of the sky or the yellow flicker of a flame. It’s quite another to know Xavier has witnessed 6,000 sunrises and sunsets and realize he may wake up one day to complete darkness. And it’s difficult to fathom that  he won’t be able to see his baby sister when she’s an adult woman.

I try to smile more when I’m around him, in an attempt to burn that image into his memory because I know he won’t see the wrinkles time will lay upon his mother’s face. He’ll no longer be able to play his favorite video game, watch the latest skate video on YouTube or sail his skateboard down a ramp. To know he will one day be forced to part with skateboarding—the one thing he is so passionate about—is heartbreaking. Some of us go through life and don’t have a true passion for anything, but to find it and have it taken away is a fate I wouldn’t wish on anyone, but especially not one so close to me. It’s bittersweet he has chosen such a visual sport; he can’t skateboard if he can’t see. And so, although it scares me to see him jumping from ramp to ramp and grinding rails, I’ll support his love of skateboarding while his eyes are still able to guide him.

My deep thoughts are suddenly interrupted by laughter. As we pull into the skate park, everyone is antsy and excited. The boys jump out of the car and onto their boards. Xavier hugs me and says, “Thanks, Mom,” and drops his board onto the ground. I smile and watch him glide away across the pavement. 

 

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