Fixing Joe

My little boy, Joe, is one of the best people I know, and I often wish I could be more like him. He's curious and inventive. He's thoughtful and honest. And yet he needs some fixing.
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My little boy, Joe, is one of the best people I know, and I often wish I could be more like him. He’s curious and inventive. He’s thoughtful and honest. And yet he needs some fixing.

Joe’s had a neurological condition all his life called congenital nystagmus that means he can’t control the muscles of his eyes; thus they bounce constantly back and forth. This translates into poor vision in most circumstances, and more recently, into some hurtful jabbing from his peers. So after several long discussions with Joe’s neuro-opthalmologist and mulling over it for more than a year, we’ve finally scheduled an elective surgery for Joe that, while it won’t actually correct the nystagmus, will make it possible for him to see better without executing a significant head-turn to the position that typically helps him hold his eyes still, a position that other people think (and sometimes say) looks funny.

Once the three of us — my husband, Joe’s doctor, and I — decided a few months ago that this surgery was worth the slight risks it entails, I sat down to have a frank talk with Joe.

“There’s nothing wrong with my eyes,” he said flatly, interrupting before I got very far along in my description of the operation.

I felt a tightening in my throat to hear that proclamation. Surely that was the response he’d been giving to all the kids who asked him at school, “What’s wrong with your eyes?” Was I going to be the one to shake him off that indefensible yet understandable position by saying the words out loud that indeed, there was something wrong with his eyes? He already knew that. He’d simply staked out a position of denial and I was not sure I could blame him.

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“Joe,” I said, “there is something wrong with your eyes.” And I paused. “But it can be — kind of — fixed.”

After that he was willing to listen, and eventually he decided the surgery was a good idea, and since we settled all that we haven’t talked about it again.

I feel lucky this is all, at least for now, that we have to face. I have a friend who lost her little boy to cancer when he was about Joe’s age. It’s impossible to feel sorry for myself or even for Joe when I think about that. The cancer that boy had was something that could not be fixed, no matter how hard they tried, or what doctor they went to, or how fervently they hoped. Closer to home, Joe’s been seeing the neurologist every six months since he was born, and sitting in the waiting room of a pediatric neurologist every six months has provided a very stark reminder of how many children are worse off than Joe, how many mothers are worse off than I am. Many of the things I’ve seen in that waiting room cannot be fixed, they can only be mitigated, more or less.

We are lucky that Joe doesn’t need much fixing. We are lucky not only that nystagmus is the worst of his troubles but that there is a procedure which mitigates it, more or less, and a doctor whom we trust to perform it.

I know there will be a lot of things going through my mind as they wheel Joe into the operating room on a gurney about ten days from now. But I’m not planning to voice any of them. I’m not planning to say, “be careful” to the surgeon, or to tell him that I love that little boy’s life more than my own, or to ask him to do an extra good job on a patient that’s particularly special to me and the rest of Joe’s family. I am going to trust that he knows all these things already; he’s a parent himself.

I won’t be able to do anything but wait. Wait, and hope that nothing else about Joe changes, that he’ll come out the same wonderful person he went in, that the only things that are fixed, more or less, are his eyes. Because other than that, nothing about Joe needs fixing.

—Muffy

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