Playing Uno is hard, because he has trouble seeing the difference between the blue and green cards. He can’t play Wii Sports well, because he can’t see the baseball in time to swing. Forget reading – he can’t play with legos or build his model cars.
It’s not that he can’t see at all. He can see. He can sort of see.
He’s mad now, and miserable and raging. Then he puts it aside, and handles it. He stops raging, he listens to me when I tell him that I know this is horribly, horribly unfair. That he has every right to be mad and furious and scared and frustrated. But that he’ll get thru it, that his brain needs to heal, that the doctors are optimistic that the nerves will regenerate, and that the vision will come back. That sometimes, in life, horrible, horrible things will happen, and it’s not fair and it’s not right. But that the only thing that matters is how we handle it, that he’ll survive this. That he’s healthy, and sitting beside me on the couch, and that he just has to be patient.
He’s learning lessons I don’t want him to learn. He’s growing up faster than I want, and dealing with realities that I don’t want my little boy to have to accept. Because the truth is that this is miserably unfair. He didn’t deserve it and all he can do is learn how to handle it with grace. To fight to get it back (although I’m entirely unclear as to how fighting is going to get the optic nerves to regenerate).
This isn’t the childhood I wanted for him. Doctors visits and taking more medication than I’ve ever had to face before. Play dates broken up by the need to rest, being afraid to go anywhere or do anything because you don’t know when the pain is going to get worse and you’ll need to lay down.
I tell myself that it’s a good sign. He’s feeling better now, because for the past month or so, he was feeling so wretched that he didn’t even care that his vision was negatively impacted. The fact that his body wants to do things is a good sign. It means that the medication is working, the pressure is going down, and then nerves will be able to regenerate. His appetite is slowly coming back – slowly, slowly. He’s asking for food now occasionally. Doesn’t eat much of it, but at least asking. He’s not as reliant on tylenol or motrin.
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