Waking up in California is weird, if not welcome. Yesterday was travel day. A way-too-early-start followed by 6+ hours in the air (divided by a few hours in O'Hare to change planes), an hour to get our rental car, an hour wandering exhausted around Ralph's to grab some groceries, a quick bite to eat and finally falling asleep with the sun still up at about 8:00 California time (11:00 Philadelphia time).
Today we meet with Dr. Lewin. She text messaged last night around 1 a.m. Philadelphia time, but I forgive her. Right now we're wide awake at 6 a.m. -- so early that the free continental breakfast doesn't start for another half hour. At around 9:30 we'll mosey on down the road for Ethan's pre-surgical consultation. Then we'll probably hang out at the beach. If the weather allows, that is. Know what? It's fucking cold here. Yesterday it was 63 degrees. Today it's supposed to be 64. In fact, the rest of the time we're in L.A. the forecast high is 60-something. For contrast, maybe 6 days total since May have been below 90 in Philadelphia. I'm not complaining, mind you, just a little concerned since I only packed shorts and t-shirts. Here's hoping San Diego is a bit more consistent with my expectations, lest I'm forced to go pants shopping.
Anyway, Ethan is scheduled to undergo Medpor reconstruction tomorrow at 6:30 a.m. (finally that time change thing will pay off as we will have been up for several hours). Sadly, only one of us will be able to wait in the surgical center, so Sandi will stay with Ethan while Thomas and I explore. And huddle for warmth. (As cold as this seems to me, it must be like tundra-cold for Thomas, who has spent most of his days outside at summer camp.) Maybe we'll check out the tar pits. Or grab a 40 in a paper bag and check out the boobies on the pier.
Strange to be at this stage in the game. Seems like it's taken forever to get here. There's a hum just beneath our surfaces. The kids, usually oblivious to such things, are even sensitive to it. Time to say goodbye to that empty space on the side of Ethan's head. God, I love this kid. I'm so proud of him for staying so tough and focused. I hope he remembers this experience without attaching much trauma to it. I hope he knows that we're doing this out of love and concern for his future. I hope it goes well. Because success or failure, I can totally see Ethan using this to score with the babes later in life.
Dr. Lewin, here we come.
"I don't want to wait in vain for your love." -- Bob Marley
Saturday, July 31, 2010
Thursday, July 8, 2010
Look Right, Look In Your Wallet
Internet, I don't like to tell you your business, but if you don't know Black Hockey Jesus, you really should. He is one of the best writers I've ever read -- blogging or not. He is also an immensely interesting guy with an insane passion for life. A while ago he began running and now runs every day. Like, EVERY day. But unlike most runners, you get the sense that to him running is like telling life to go fuck itself -- that if ownership of any of life's terms is subject to debate, he's staking his claim. Planting his flag up life's ass, as it were.
Brave, irreverent, modest and compassionate. And compassionate. And compassionate. Meet Tanner. Some of his story can be found here, but for now you should know that he's really sick and will be getting worse for his entire life. Degenerative. The stuff parents' nightmares are made of.
Tanner's aunt is a blogger and, with the help of a bunch of tutu-obsessed folk, has set up a charity 5K "awareness raising" race to be run in NYC during this year's BlogHer convention. BHJ is taking this to the extreme, as anyone who has ever read him would expect. He will not run in a tutu. Nor will he stop running when he hits the finish line. Rather, he will continue to run 5Ks until he can no longer move. Fucking guy. I love this fucking guy. If I weren't going to be in California for Ethan's surgery during BlogHer, I'd absolutely be there to see this. Probably on a Vespa about 10 feet in front of him, dangling a hundred dollar bill on a stick.
So what? So give this fucking guy I love some money, that's what. The widget in the right column? Click that. Or go to his site and comment/pledge on his post. At the very least, do yourself a favor and carve out a few days to read his work. He is brilliant. And verbose. And cocky. And beautiful. And worthy. And soon he will be tired. And Tanner won't get any better. But the next kid might and that's all you need to know. Thanks. I mean it.
"Until I catch a fraction of a glimpse into the world he lives in." -- The BHJ
Brave, irreverent, modest and compassionate. And compassionate. And compassionate. Meet Tanner. Some of his story can be found here, but for now you should know that he's really sick and will be getting worse for his entire life. Degenerative. The stuff parents' nightmares are made of.
Tanner's aunt is a blogger and, with the help of a bunch of tutu-obsessed folk, has set up a charity 5K "awareness raising" race to be run in NYC during this year's BlogHer convention. BHJ is taking this to the extreme, as anyone who has ever read him would expect. He will not run in a tutu. Nor will he stop running when he hits the finish line. Rather, he will continue to run 5Ks until he can no longer move. Fucking guy. I love this fucking guy. If I weren't going to be in California for Ethan's surgery during BlogHer, I'd absolutely be there to see this. Probably on a Vespa about 10 feet in front of him, dangling a hundred dollar bill on a stick.
So what? So give this fucking guy I love some money, that's what. The widget in the right column? Click that. Or go to his site and comment/pledge on his post. At the very least, do yourself a favor and carve out a few days to read his work. He is brilliant. And verbose. And cocky. And beautiful. And worthy. And soon he will be tired. And Tanner won't get any better. But the next kid might and that's all you need to know. Thanks. I mean it.
"Until I catch a fraction of a glimpse into the world he lives in." -- The BHJ
Wednesday, July 7, 2010
... With An Achin' In My Heart
I think it was in the beginning of Planet of the Apes -- the original with Charlton Heston. The crew slept in some kind of cryogenic pods that kept them alive while they raced through the universe. The glass on one of the pods had cracked and it was obvious that the poor bastard inside had died much earlier in the trip. I'm guessing this was done to convey a) how dangerous this mission was and b) how long they'd been in space. So poor bastard lay there dead, shriveled and disgusting. But Charlton ... Charlton? That's really a stupid name without the Heston part. Anyway, Charlton looked like a million bucks. Fresh, happy, healthy. Ready for anything.
I might have this all wrong. It may have been Alien. Which Charlton wasn't in. But someone in some movie woke from a pod after a really long trip.
I wish I had a pod.
We are 23 days from our California trip. When we return summer will pretty much be over. And as much as I hate fall and winter and shorter days and cold weather, I would embrace it all if it meant that this trip were over. I want so badly to not have to think about this anymore. I want to lay down in my pod and sleep and wake up in a galaxy where Ethan's microtia surgery already happened -- even if it had been performed by damn dirty apes.
I haven't written lately because I can't find anything worth saying. Because daily life is trivial. Because I'm trying to slow my rhythms toward some state of stasis that will allow me to survive the trip.
We managed to craft an itinerary that reeks of distraction: A few days in Beverly Hills, a few days in San Diego, a few days in Disneyland. And I'm sure it will all be a damn site more pleasant than being caged at the pleasure of Dr. Zaius. We carved out some time to enjoy the beaches, visit Lego Land, the zoo, blahblahblah. Plus, we're totally using Ethan's gigundus head bandage to weez our way to the front of the lines everywhere we go.
But none of it will be relaxing. Just like it's not relaxing now. Life is a car with really shitty shock absorbers riding a road with more pothole than asphalt. Those of us who dared dream of a smooth adventure are now frantically trying to avoid a crash while wiping up the drink we spilled all over our laps.
But in the end, the destination is the thing. I will drink a toast -- assuming there's anything left in the glass -- to the destination.
"Plans that either come to naught, or half a page of scribbled lines." -- Pink Floyd
I might have this all wrong. It may have been Alien. Which Charlton wasn't in. But someone in some movie woke from a pod after a really long trip.
I wish I had a pod.
We are 23 days from our California trip. When we return summer will pretty much be over. And as much as I hate fall and winter and shorter days and cold weather, I would embrace it all if it meant that this trip were over. I want so badly to not have to think about this anymore. I want to lay down in my pod and sleep and wake up in a galaxy where Ethan's microtia surgery already happened -- even if it had been performed by damn dirty apes.
I haven't written lately because I can't find anything worth saying. Because daily life is trivial. Because I'm trying to slow my rhythms toward some state of stasis that will allow me to survive the trip.
We managed to craft an itinerary that reeks of distraction: A few days in Beverly Hills, a few days in San Diego, a few days in Disneyland. And I'm sure it will all be a damn site more pleasant than being caged at the pleasure of Dr. Zaius. We carved out some time to enjoy the beaches, visit Lego Land, the zoo, blahblahblah. Plus, we're totally using Ethan's gigundus head bandage to weez our way to the front of the lines everywhere we go.
But none of it will be relaxing. Just like it's not relaxing now. Life is a car with really shitty shock absorbers riding a road with more pothole than asphalt. Those of us who dared dream of a smooth adventure are now frantically trying to avoid a crash while wiping up the drink we spilled all over our laps.
But in the end, the destination is the thing. I will drink a toast -- assuming there's anything left in the glass -- to the destination.
"Plans that either come to naught, or half a page of scribbled lines." -- Pink Floyd
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