March 11, 2006

Daniel here.I’ve been Jess’s Thursday caregiver since he got back from the hospital in September 2004. Pam asked me to write this update.
The best I see is how Jess continues to react more and more to both Pam and Chris; they can get a smile out of him, and its about time he started doing that! (My sister tells me that her first child was a lot of work, and after the first few months she had had enough. “But nature had plans, and just in time he smiled. So I kept him...”)
Jess has had trouble reconnecting with his facial muscles, and there is often a few to 20 second delay as he struggles to, I’m guessing here, either process what is being said, or connect what he hears and feels to his body. Either way (or a third way I don't see), when Chris “falls” on Jess to “wrastle” with him, Jess is now getting a wonderful expression of amazement and joy on his face (with Chris falling on me, I imagine I would be quick to respond as well). The look would be subtle to an outsider, but not to those who spend time with Jess. He is a handsome young man and frankly, it is a pleasure to be around him. I think all those who work with him would agree. In the business of care giving, that is not always the case. Sometimes I have to find the compassion, it's not just there as it is with Jess.
Physically Jess is much much stronger. Transferring from his wheelchair to a bed or his standing chair used to be like herding a big noodle. Now, somehow, Jess participates and it is fantastic! I was moving him just yesterday, and we “accidentally” stood up - that’s how easy it is now. I think it is mostly his stomach muscles that are helping, it is hard to say. Also, Jess no longer gets as dizzy when we sit him up - less disoriented.
There is also great improvement with Jess eyes. He now can track right and left, and even up and down. In fact, when you ASK him to, he can often do this without having to track a moving object. I really hope he is excited by all these things; that he can feel himself in his body, the thrill of being in more control of what it does. But the richest part of this whole experience, for me, has been being around Pam and Chris with their abundance of unconditional Love. I am an overeducated New York intellectual Jew heathen, but I swear I experience God all over their house; the place radiates love, and when I drive Jess to his various daily activities, tendrils of this love follow, envelope and even guide us. It’s a little like floating. Pam and Chris source this with a faith like no other.