In the opening scene of the film Star Trek II: The Wrath of Khan, the characters are not actually in a real struggle/battle, but are acting out a scenario called the "Kobayashi Maru." In it, Starfleet cadets are tested on how they deal with a situation that has no positive solution. It is a test of character asking how the individual will deal with failure and, ultimately, death. At one point, Admiral Kirk explains, "A no-win situation is a possibility that every commander may face," and "How we deal with death is at least as important as how we deal with life."

As parents of a Menkes child, we are told that sometime in the very near future, without uncertainty... we will lose. We will fail to save or be outlived by our son. There is nothing we can buy. There is no place we can take him. There is no one for us to see.

The scenario creates two temptations--both of which are destructive as is in the fundamental understanding of a temptation.

The first temptation is to attempt to overcome helplessness by "doing" something, anything. No one likes to feel helpless--myself included--and so I am tempted to do something. Tempted to order a new medication. Tempted to try an experimental treatment. Tempted to wash clothes, do dishes, go shopping. Tempted to watch another television program. Tempted to dote. Tempted to do something different. Tempted to sit at my computer and write. The problem--the reason this temptation is destructive--is because it fools us into believing that we are doing something to be helpful when we're actually just wasting effort and avoiding our emotions/feelings.

The second temptation is to run away. (Now, I'm not talking about running away forever, although there are--I suppose--some who take that option either through abandonment or suicide.) But even without playing with permanent mistakes, there are small ways to run away every day. Temptations to work late, be gone too long, zone out, lose your way or mind, or pass the baby to someone else.

Today (Sunday, June 8, 2008) I had one of those moments. Jack's been declining more.  He started a fever Friday night, through Saturday, and still hasn't kicked it today. He's struggling with both insomnia and listlessness. Today, as he was lying in my arms and unable to swallow the few drops of Pedialyte I had put on his tongue, I turned to Katherine when she asked me, "Is that the face of 'I don't know what to do and I want you to take him from me'?"  It was. Helplessness welled up inside of me as I looked in his eyes and realized that I desperately wanted to do something to help him feel better and yet had nothing in my resources to offer him and, therefore, wanted to run away. I wanted to hand him over to Katherine and have her take care of him. Suddenly and uncontrollably, I began to cry.  No... sobbed.

But I didn't let him go. Katherine, thankfully, didn't rescue me. She made me face my fears and doubts and... helplessness.

In those moments of helplessness, there's really only one thing that can be done: intentionally be helpless. Don't run away. Don't try to fix it. Be present, accept the feeling, hold your child, and love him.

After all, it's not a test of ability, it's a test of character.