Tuesday, May 31, 2011

My life as Star Wars characters...


I’m not at all sure what is going to be uncovered in the next few months about my baby boy’s condition. And though we have to remain positive because that’s fair to him and to our oldest son, it’s hard to know how much we can take. I always thought that these awful things only happen to people who can handle them. I’ve learned that that is a false premise put to us by the human desire to wish away reality. There’s no God doling out pain to the populations who can handle it. There’s no limit, either, of what has to be endured. We simply must take what we get. We must take the information, process it as best we can and then we have to change baby's diaper and feed him and answer questions about Star Wars for our four year old. Why is Darth Vader bad? Why does he want to fight Luke Skywalker? Why are there some good clones and some bad ones?
Yes. These questions must be answered. Why does the baby have something maladjusted in his brain? Why would he have seizures when we are healthy and the pregnancy was healthy and we did everything right?
How do you make a lightsaber? Why are there different colored lightsabers and do they hurt when you strike a bad guy?
Darth Vader didn’t mean to turn bad, I say. That’s just in the cards that he was dealt. He tried to fight for what was right, I say. He didn’t know that he’d have a breaking point and lose himself in the sadness and frustration and anger and the challenges that were put in front of him. He didn’t know, I say. He forgot how to love. 
That was the dark side. Forgetting that what makes us human is love. The element that lets us wield blue and green lightsabers and not red ones. Because we all are going to get a chance to decide whether to join the Sith Lords or not.  What are we made of? Some of us might end up being Darth, I say.
But not us, my four year old says. We won’t choose the dark side.
No, I say. I don’t think so.

Sunday, May 1, 2011

First post


My writer friend's mother was diagnosed with cancer and she says the following about processing: You asked me how I'm dealing with it and I have to be honest--I have no idea. I swing from feeling hopeful to feeling hopeless, sometimes within seconds of each other. I'm being realistic about the possibilities, but I don't think you can ever truly grasp it all--you feel like you have a good hold on it, gripped tight in your hand, and then it just slips away. Does that make any sense?

Yes. This makes sense to me. Putting feelings into words and documenting them is a struggle. Settling my mind to write feels like the energy it would take to run a marathon. Where do I start? When do I end? What is it that I even have to say? I hate words somewhat. Words were used to say cortical dysplasia and seizures and MRI and spontaneous mutation. Awful words. Negative words that feel the same as if the doctor looked me in the eyes and said: I hate you. Why would she tell me this? Where is the: I love you? Where is the clear test results and going to be fine? Who is this doctor sitting in front of me? She’s Chinese so she is probably making a mistake, she doesn’t understand, this isn’t her culture, her language, or her country. She’s wrong. Go back to your country. You’ve made an error in judgment. You’ve misread the MRI. Maybe that’s not my son’s results. Your radiation specialist saved it wrong and that’s not even his brain I’m looking at, smashed into this back office at the hospital, behind the nurses’ station, where I’m only invited because they all know that we are receiving bad news. Yes. Now I understand why I’m allowed to sit back here in the usually restricted quarters and look at these pictures of my son’s brain. These scans that don’t show what a beautiful person he is; that disregard the healthy boy and my healthy pregnancy. These scans that show nothing about how he smiles at me in the morning when I greet him and nurse him and whisper into his ears “good morning, baby” and “I love you.”  These aren’t the scans that belong to MY son. How do I say this in Chinese? Is it Mandarin? Would you communicate with me if I spoke your language? I don’t know Chinese. Not even a word. Not even Yes. No. I don’t  understand.
I don’t understand is what language teachers and texts always teach first. Yo no say. Je ne sais pas. I don’t know. I don’t understand. You must translate. You’re clearly not speaking ENGLISH. Not MY language. You are a foreigner speaking in tongues but we have been mistakenly thrown together at the wrong time, in the wrong place. This isn’t meant to happen. We’ve come to the wrong hospital and been given wrong information. Yes. That is what happened. We were given mistaken information translated from English to Chinese and back to English so it’s all gotten lost in translation. Yes. This I know for sure.

Why the blog?


Why the blog? Just as artists feel drawn to their craft, I’m sensing a growing urge to reach out, beyond my MacBook, to speak to and with the universe. However few eyes these pages reach is not of concern but it is my hope that if I can send one line, one meaningful word out to the ethers that the universe will know what to do with it from there.