As Ben's parents, we probably made peace with his deafness and all the equipment a lot sooner and more completely than anybody else -- friends, family. As close, supportive, and involved as they have been, we're the ones who were there for the hearing tests and were told, "He's deaf.*" We're the ones who researched the technology and the devices, sent him off to surgery, enjoyed the thrills and spills of activation and therapy and watching him reach all the milestones. We're the ones who clean and store the equipment every night, and who maintain that constant vigilance -- did the headpiece come off? Is something not working? Is there too much static here? And we're the ones who live with that sword of Damocles hanging over our heads, the specter of infection or device failure, and the need for more surgery. Because we're immersed in that world, it long ago became our reality, our New Normal. For everyone else, I think there's still just that tiny element of surprise and unease.
On the other hand, as his parents, we'll probably never make peace completely with it. Every now and then, after months of New Normal, it'll suddenly hit me all over again like a lightning bolt: I had a deaf child. How did that happen? My child has a very serious disability. One of his five senses is dysfunctional, nonfunctional, and it's only with significant technological intervention that we can recover some measure of that sense. It's okay; we're cool with it; he's doing really well. But ... wow. And then I realize that there was a little piece of it that I still hadn't come to grips with. I guess it's something we'll just have to approach asymptotically.
*The clinicians don't say "deaf," of course. They say "hearing impaired." As in, "Your child has severe sloping to profound bilateral sensorineural hearing loss." I just say "deaf." I like it better.
"I Cannot Even Smile Here"
2 months ago