Tuesday, January 31, 2012
At some point over the weekend, this blog hit its 1 millionth page view. That's really something.
It's a bittersweet achievement. Obviously, my life would be better if this blog did not exist. If this blog did not exist, that would have meant that no tumor existed for James to beat. It would mean he never got sick, that I never wrote a word about it, and that I could see him right now if I wanted to. 15 months and 2 days old, a bouncing baby transitioning fully into toddler mode, prancing down the halls and testing the baby proofing around the house. Bumping into the plastic edges Kara wrapped around the hard edges of the furniture and the sharp corners of the fireplace. Struggling against the protectors she put in each and every outlet. We took them off after he died, and the plastic pads left just a bit of residue on the painted brick of the fireplace, like the sticky film you can't quite get off when you peel a sticker off your car window. I keep expecting it to fade, and can't decide if I really want it to or not. I wanted to see him walk so badly that the lingering refuse of our preparations can almost trick me into thinking I did. Perhaps, I muse, he's just off playing in another room, or playing on the toy slide I bought at the garage sale down the street. It was too big to fit in the car so I dragged it down the street to the house, too lazy (and too incompetent) to disassemble it and pack it in. But the slide isn't there anymore either.
Kara started this blog. I still remember when. It was our second day in the PICU. We'd just learned about James' tumor, but didn't know what kind of tumor it was yet. Rhabdoid was an unproven hypothesis. She didn't tell me about it, she just started it with no entries. The lead photo was a picture of James from the zoo, perched on an old jeep, his hands banging on the spare tire mounted on the hood. It was from our second and last trip to the zoo. I was not in a good place that day, the world was spinning. I remember liking the title she chose of James beats the tumor, because it made me feel more like we had somewhere to go, somewhere that was not the cramped PICU room. I wrote the first entry on no sleep and with no plot, walking down the timeline of the hospital so far, not sure what else to do. I called it Day 1, because it felt like all the days before had been irrelevant. It still does. If Kara had not started the blog I never would have done something similar. In fact, I probably would never have said anything at all about any of this. I'm not big on sharing, but I took some kind of comfort in the anonymity of the blog. Once I started writing it felt good to put all of that pain somewhere other than me, innocuous words glowing softly in the light of a laptop screen instead of simmering in my head, festering into doomsday scenarios.
Though I didn't know it when I wrote that entry, I'd write in the blog every day between then and the day of James' funeral. In a way, I'm glad I didn't know it would barely be three weeks later. I don't think I could've handled knowing. I wrote late, after the doctors finished their interminable and intermittent rounds, relying entirely on Children's spotty wireless connection to upload my unedited thoughts. Going through them now I notice that typos abound. Kara wrote too, with a style completely her own. As I've said before, Kara and I are opposites. I looked forward to her posts, because I always felt better when I read them. I still do. Though you never really sleep on a schedule in the hospital, writing became my way to wind down and end the day. Once I wrote it, I could clean the slate and start filling it up with thoughts for the next day. It was a healthy catharsis. I'm not glad that this blog exists, but I am grateful. I needed it.
After he died, it became a place to vent and reflect. To talk about the grief of losing him and how that felt. We wrote less, and the subjects became grimmer. Graveyards and funeral homes replaced Disney and babies. A place to vent about all that was and never will be. Still, you kept coming. Thank you for that.
I do not know where you all came from. I do not know how all of you got here. The e-mails and comments indicate you are international and local, people I know and people from places I've never been. Scotland, Australia, Argentina, Canada, Puerto Rico, and more; scores of states that we have no ties to. I don't know who you are but I'm glad you found James. It has been overwhelming to see the feelings he inspires in other people. We have been blessed. With James gone, the way people feel about him and the way they remember him has become very important, in many ways, it's his legacy. I've heard the phrase that someone's death was "not in vain." I don't believe that when it comes to children. Children should not die. Every death is a waste of a life over before it began. I do believe that what you do with someone's death is important. Their death might always be in vain, but that does not mean that your response must be. They don't have to die for something for you to do something about it.
Thanks to this blog we've been able to do a lot of things to keep James' memory alive, and hopefully one day to help ensure that there are less memories made like his. We've raised $25,000 for James' fund and rhabdoid research. We were able to get Jamie the Giraffe named in his honor, and in doing so were fortunate enough that the person who won the family trip for picking the name chose to give it to Make a Wish Foundation. It's been humbling to see the things that people have done for James. Thank you.
I try- but do not always succeed- to thank you whenever I write here for your thoughts and prayers. They mean a lot. No one gets through something like this without a lot of support, and we have been very fortunate to have a lot of support. I have never felt like no one cared. So thank you for coming and thinking about us. Thank you for getting to know James.