The All Clear

This is a post I did several days ago and just finally got back to.

I took Owen to the Pediatric Cardiologist today for a check up at Children's Hospital. It had been a year since our last visit. Fortunately, last year after an EKG, Eccocardiogram and 24 halter monitor, the Dr. told us we were in pretty good shape. He had been off of meds for 6 months and although there was still some premature jumping of beats, things were much improved and we were to ride it out. So, a year gone by and we got great news today - Owen's EKG was completely normal! There did not appear to be any acceleration or irregular beats. Yeh! He did say that we are not completely out of the woods and that this could come back (most likely in the early teen years) but for now, we look good. The best words were - "see you in 3 years". The days seem long ago that we were listening to his heart 6 times a day and giving doses of albuterol every 4 hours. Praise the Lord!

On a different note, there is something that I want to share. There is this boy (young man) whom is a student at Cranbrook. I have only met him a few times. I first found out about him when I went to give blood at a blood drive at work. There was a sign that read "If you are of O blood type and willing to donate blood for Miles Levin, please contact ..." And so I did and then I proceed to give blood at a bank especially for this boy. I knew he had some type of cancer but that was it. Now he is not doing so well. He is in NY getting basically a last chance chemo treatment. If this treatment does not do some major work, he will not be strong enough to recover from it. I was told that he has a carepage, similar to a blog and so I began reading. I now am consumed by it. I read or look for updates on this amazing boys life many times a day. He has courage that I have never seen in my life time, an indescribable ability to write and the guts to discuss anything about death. I am copying a page from his site that truly moved me and sums up his take on life. Please read...

75 April 17, 2007 at 09:39 PM EDT
The Disappointment Essay
I'm only going to say this once.

Part of the power of Carepages, I've been told, is that it resonates a certain authenticity, free from pretense. But I'm sure many of you must wonder sometimes, "Wait, how could he not be upset about what's happening to him?" So free from pretense and sugar coating, I will say, no, this not what I had planned.

First I should address the anger issue. That's the easy one because, as I've said, I really don't have much anger. I don't. I have moments, but for the most part I accept this. I have done everything I can to try and survive. If it is to be, it is to be. As for "Why me?"... I don't know, and I've given up wondering. If I have a divine purpose, it is to show the world how to deal with adversity head on, with courage and grace. If I am here by science and chance, I still showed the world how to deal with adversity head on, with courage and grace.

I come back to the analogy of the baby drowning in the river and getting angry at the H20 molecules. I'm not angry because there's nothing to be angry at. Anger requires a target. You have to be angry AT something. There is no target, there are only abnormal cellular processes.

So I'm not angry. This is how it is. But I am so terribly sorry that this is how it has to be. I so badly want to live. I have great enthusiasm for life; that probably shows. This is the first carepage update I've ever written through tears. I just want to live. NPR Columnist and cancer patient Leroy Sievers says it for me best: "I'm not scared to die, I'm just not ready."

It was hard for me at school when all my friends got worked up about the colleges they had not yet heard back from. So much talk about colllege. It was hard to hear. Firstly, all that stressing about which Ivy League they'd be going to while I'm stressing about whether those suspicious scans meant cancer and The End or not; and secondly, that everyone would be moving on to the next stage of life...the whole College Experience...onwards to young rising professionals and newly weds and fathers and mothers and grandfathers and grandmothers and retirees...but my life ends here; this is my stop, a couple months short of graduating high school. The truncation is so harsh. That's what hurts the most. There's so much more I want to do. And I know I have more to give. I got the short end of the stick, and while I'm not angry (at a stick?), I'm painfully saddened and disappointed. My own life is the most tragic thing I have ever known. How many people can say that free of melodrama?

I try to hold in mind that all you can do is work with what you're given, and I pretty much made the most of it. I'm proud of that. Whether you live to be 18 or 81, your tenure on this earth is still fleeting. For the happy and healthy, it will always be too short. Given this, all you can do is do some good, I suppose, and find a couple things to laugh at in between. I've done that.

Most of the time I'm not sad. When I feel well, I'm happy. But when I'm feeling happy and well is when I realize how much I enjoy this whole thing, how much I'll miss it (although I don't think I will be capable of missing it once I'm gone)--and that's when I have the hardest time letting go.

This is, as I titled it, The Disappointment Essay. I've always appreciated a quote on the way things are by Hunter S. Thompson. "It's a strange world," he wrote, "Some people get rich, others eat shit and die. Who knows?" That seems about it. And who knows?

Who knows. I believe through cancer I was able to rise, coming respectably close to self-actualization. Maybe I never would have gotten my act together otherwise. Into adulthood, I might have been scattered, eternally five minutes late to life. Maybe this has put my good where it will do the most. I can only hope so.