I bet you're wondering how Utah was. Let me put it to you straight: I don't like the southwest. I was in St. George, a town of 80,000 with one bar called, "the one and only." They only sold beer. And no, I didn't actually get around to going there.
If you google this town, you'll see that their big tourist attraction is a huge, white, mormon temple. With that being said, I don't have to explain to you too much that everyone there was blonde, and all kinda looked the same, and all of them were not attractive. Humans prefer diverse features in faces.
I dug a square hole for the first time in two years. I was warned that it would be very hot and dry and horrible. But you know what, digging in the southwest at a 100 degrees is a billion times more comfortable than diggin in Missouri at 100 degrees. I didn't sweat, because it's too dry. In contrast, you can't get dry in Missouri; you walk outside and start sweating. So, it wasn't nearly as horrible as it could've been. I made a chunk of change for the family, and that was the point of going.
But there were other points to going, too:
1. to get the hell outta dodge. before the dig, the last time i'd been on a plane was 2007. The last time I left missouri was, well, i can't remember, but excluding a couple of rugby matches, I've been to Ohio to see Mindy's family.
2. to feel like a human again. since march 4 I feel like all I've been is Mindy's wife and Cyrus' mom. I was still teaching, but hardly there. I had a month off after that of cleaning the house and going to the hospital twice a day. that's all i did.
So, being out there in the heat, working hard, well, it felt like me. All I did was wake up, work, eat, and go to sleep. There were no trips to the hospital, no grocery shopping, no cleaning the bathroom. In a way, it was a vacation. In another way, it totally wasn't since I was working 10 hours a day.
I expected Cyrus to come home this past weekend. I figured after his horrible seizures and eye surgery the only thing to happen was for him to learn to eat. But he hasn't been able to eat because of his rapid breathing. Imagine running up several flights of steps and then trying to drink a milk shake.
Yesterday we learned that Cy has an ASD. The doctors think that because of this there may be extra fluid getting into his lungs. They put him on Lasix yesterday in an attempt to get rid of some of the fluid. In a few days they'll check again. When I asked what happened after that, the doctor said more medicine. And after that? Maybe surgery.
Mindy saw the little man this morning and said his breathing looked better. I hope it wasn't wishful thinking.
I'm guessing it'll be another month before he comes home. His due date is Thursday, July 1.
* * *
We're mad now. Really mad. We're tired of of people asking how we are and having to answer, "fine." You don't really want to know how we are. We're crazed and exhausted. We're pissed and temperamental. We're always busy but getting nothing done.
When Cyrus gets home we'll fight more than shitty diapers and crying all night; we'll deal with sickness. He'll go into the hospital a lot for the first few years. We don't get to take him home and say, "well, that's over." He'll be confined to the house for months. You'll have to wash your hands before you come in, and we'll probably tell you not to touch him.
* * *
I can't handle Cyrus having another surgery. I feel like I have PTSD. Seeing him on the vent gives me flashbacks of the night he was born, of the months he lived in the cube and you all were horrified by his pictures. How have I coped? By blocking it out. And then later writing about it. All this typing has helped in the short term, but what about when it is all finally over? I'm not even sure when that'll be. There will be no definite end, but a gradual fade into family life.
Tuesday, June 29, 2010
Thursday, June 10, 2010
Out of the Wilderness
This morning as my wife was snoring and I was tossing and turning and kicking her to get her to stop, I had this idea.
I call it an idea because I don't want to call it a vision. I pictured Mindy and myself sitting in the waiting room and some goddamned doctor saying, like, some bullshit about how a normally "routine" procedure had gone wrong. I shoved it out of my head because those things just aren't even worth thinking about these days.
It was just last night that we were bathing Cyrus and he was peeing in the water and enjoying getting his white-boy 'fro scrubbed. It was last night that Mindy and I stayed up late watching several episodes of a show about surviving in the Alaskan wilderness. In a way, we'd done that together already. In another way, we're still trying to lug our heavy Yukon packs through those annoying alders. In a way, I'm melodramatic.
We went to see Cyrus today, before his scheduled eye surgery, to find him seizing. We told the nurse, a few doctors came in, then another, then some more. Then they shoved 4 or 5 drugs into the i.v. placed in his head. He kept doing it. Mindy asked if this would affect his brain. The doctor said it could if it went on for 30 minutes. We watched him seize for 45.
I sobbed into Mindy's shoulder I hate it here while our awesome lesbian nurse worked on Cyrus and tried not to pay attention. I think I heard her sniffle.
Once again, I had gotten comfortable; he has been breathing on his own and learning to take a bottle. We thought he'd be home in a matter of days...until they said he had retinopathy of prematurity. They said he'd have to go back on the ventilator for surgery and he'd probably be on it 36 hours. And after that he'd be back on the flow-pap. And so on.
I was trying to convince myself that this surgery would be easy and "routine." I was ready to accept that he would lose 30-40 degrees of peripheral vision.
And then I see him having seizures and now I have to turn my brain to another channel. I have to picture him with thick glasses, epilepsy, and possibly mental handicaps.
And now that his surgery is postponed, I have to worry that he'll be completely blind.
* * *
I know parents have expectations for their kids. I know this because I couldn't possibly meet all of the goals my parents set for me. Well, I accomplished everything but marring some macho dude who hunted and wore camo. I watched their dreams collapse in one afternoon.
So, yes, I've dreamed things for my own son:
At first I hoped he'd be smart, sexy, loving, caring, understanding and respectful.
Then I wished he'd stay where he belonged.
I wished that he would die quickly.
I wished him alive. Again and again.
I've wished that he'd be the next Holzhauser to play baseball.
I've hoped that his loss of vision wouldn't impede on his ability to play sports...or dance... or drive a car.
But now I'm somewhere else.
If he's blind, he still has music. I hope his passion to play and listen and feel it far exceeds my own.
If his brain is injured, I hope I'm able to deal with it all without falling apart. I want him to be happy.
* * *
It's been a long day, here in the Alaskan wilderness. Mindy and I have battled hunger, depression, loneliness, and, of course, the uncertainty of what's out there, just beyond the horizon.
I call it an idea because I don't want to call it a vision. I pictured Mindy and myself sitting in the waiting room and some goddamned doctor saying, like, some bullshit about how a normally "routine" procedure had gone wrong. I shoved it out of my head because those things just aren't even worth thinking about these days.
It was just last night that we were bathing Cyrus and he was peeing in the water and enjoying getting his white-boy 'fro scrubbed. It was last night that Mindy and I stayed up late watching several episodes of a show about surviving in the Alaskan wilderness. In a way, we'd done that together already. In another way, we're still trying to lug our heavy Yukon packs through those annoying alders. In a way, I'm melodramatic.
We went to see Cyrus today, before his scheduled eye surgery, to find him seizing. We told the nurse, a few doctors came in, then another, then some more. Then they shoved 4 or 5 drugs into the i.v. placed in his head. He kept doing it. Mindy asked if this would affect his brain. The doctor said it could if it went on for 30 minutes. We watched him seize for 45.
I sobbed into Mindy's shoulder I hate it here while our awesome lesbian nurse worked on Cyrus and tried not to pay attention. I think I heard her sniffle.
Once again, I had gotten comfortable; he has been breathing on his own and learning to take a bottle. We thought he'd be home in a matter of days...until they said he had retinopathy of prematurity. They said he'd have to go back on the ventilator for surgery and he'd probably be on it 36 hours. And after that he'd be back on the flow-pap. And so on.
I was trying to convince myself that this surgery would be easy and "routine." I was ready to accept that he would lose 30-40 degrees of peripheral vision.
And then I see him having seizures and now I have to turn my brain to another channel. I have to picture him with thick glasses, epilepsy, and possibly mental handicaps.
And now that his surgery is postponed, I have to worry that he'll be completely blind.
* * *
I know parents have expectations for their kids. I know this because I couldn't possibly meet all of the goals my parents set for me. Well, I accomplished everything but marring some macho dude who hunted and wore camo. I watched their dreams collapse in one afternoon.
So, yes, I've dreamed things for my own son:
At first I hoped he'd be smart, sexy, loving, caring, understanding and respectful.
Then I wished he'd stay where he belonged.
I wished that he would die quickly.
I wished him alive. Again and again.
I've wished that he'd be the next Holzhauser to play baseball.
I've hoped that his loss of vision wouldn't impede on his ability to play sports...or dance... or drive a car.
But now I'm somewhere else.
If he's blind, he still has music. I hope his passion to play and listen and feel it far exceeds my own.
If his brain is injured, I hope I'm able to deal with it all without falling apart. I want him to be happy.
* * *
It's been a long day, here in the Alaskan wilderness. Mindy and I have battled hunger, depression, loneliness, and, of course, the uncertainty of what's out there, just beyond the horizon.
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