Saturday, December 17, 2011

The Appointment

Since Cyrus is my first time at being a mom, I don't really know anything. Mindy doesn't either. The truth is, you probably don't want us babysitting your kid unless he's fed by a tube. I have no clue about what regular babies or toddlers eat. I wouldn't know how to feed your kid. Seriously.

We met with a dietician yesterday to discuss "Blenderized Food." It's just regular food stuck in a blender and then stuck in his tube. It's easy. Right. Except I have no idea how much to put in his tube. I don't know how many calories he needs. I learned just yesterday that one teaspoon of oil is 45 calories. Sweet.

But on Monday we're traveling to St. Louis to see a pediatric GI doctor. Yeah, we've seen one here in Columbia, but he was a douche. Just threw some medicine at Cyrus' retching disorder.

And that's the reason I picked up the 'ol computer tonight. I have no idea, once again, how regular toddlers sleep. Ours sleeps fitfully. He coughs, gags, and cries. I hear his crying about 4 times a night. We still have to give him medicine at 1:00 in the morning, every night. Because he is fed by a tube, we sometimes have to feed him after he goes to bed. There is nothing worse than feeding a kid with a tube in the dark. Sometimes he coughs and the food shoots back up in our faces. Then he cries because he has coughed, so he tries to roll to get comfortable, all the while a tube still hooked to his button. Then he gags on his coughing. Then he cries.

So right now Mindy is holding Cyrus because he was just fed and starting crying and coughing and gagging a little. Mindy says she doesn't hear him at night, all the noises he makes, but I do.

We're tired. We've been getting up in the middle of the night for at least 6 months now. We've been taking turns sleeping on the couch for 18 months. At first we had to feed him every three hours, I guess the way normal parents would, but we'd have to hook him up to his pump at night. We'd hold him while he "ate" because that's what regular babies do. You hold your babies while they eat, be it bottle or nipple. So we tried. We wanted him to feel comforted while his stomach filled up.

Then we started pumping him over night because we figured after all the shit we'd been through, it was time to sleep a little. That was okay, but if something weird would happen to the pump it would make this horrible, high-pitched siren noise and wake us up. All of us. Some nights his tube would pop open (it would take too long to describe what I mean) and his food would leak all over him. When we would wake up in the morning, we'd roll over to cuddle him and find him freezing, sleeping in a huge puddle of cold milk stuff. Other times it would leak out all over the hardwood or the carpet.

I'm sure that our coming to medicate him in in the middle of the night was horrifying for him at first. Could you imagine being roused from sleep to find someone pawing at your pajamas? He sleeps through it now, for the most part. We still don't get to.

For the record, he is sleeping on Mindy in our little rocking chair. He has cried and moved five times since I started writing this.

This exhaustion is mind-numbing. I don't write. I don't work out. I'm lucky to make it through the day. Mindy and I crash around 9:30. And even though we sometimes sleep until 6:30 or 7:00, it doesn't matter. It doesn't feel like sleep. We are not rested.

I know you've heard this from me before. I'm sorry you have to hear it again. The doctors haven't listened so far, so my hope is that you will.

I'm not getting excited about our appointment on Monday. I'm sure a doctor will barely touch him and wave his hands around and say the same shit we've heard before. I want to believe that he'll know exactly what to do. That he'll laugh and a give a solution and Cyrus will be normal.

Whatever it is that toddlers eat, and however much they do, I want my son to do it, too.

Wednesday, November 2, 2011


It's been a long while since we talked. You might think that everything is going smashingly, I guess compared to last year at this time, we're fucking living at Disneyland.

Cyrus is healthy and incredibly charming. He can wave and blow kisses. He can kind of say words. He stands on his own, reaches his arms high above his head and waits for you to say "Sooo big." He likes to play with bouncy balls. He loves the cat, Remy, and when he's not pulling at his fur, he's looking at his face saying, "gung-gung." He loves his moms. I look forward to the day we have conversations, but for now, I accept his open mouth kisses and teeny baby hugs.

He's nineteen months, but should be 16 months. He's behind, for sure, but he's doing it. And he will do it. One day he took two wobbly steps. I snatched him off his feet, pulled him to my kisses, and cried. At one time, you'll remember, we didn't know, you know...

If you're not close to us in a geographical sense, you might be totally alarmed to know he still eats nothing with his mouth. That's right; all of his calories come from a feeding tube and a hole in his stomach. Now, here you go, saying things like, "Well, you should feel soooooo lucky that that is all that he has wrong with him." And you know, we are very, very lucky. But that doesn't mean it's alright that we feed our child with a tube.

The doctors seem to think so, though. They don't give a fuck. In the 16 months that Cyrus has been home, we've asked doctor after doctor why our son won't eat. They mumble something, send us to someone else, and we never hear from them again. There have been a few tests a few answers, but it all turned out to be bullshit.

Once our awesome pediatrician left, we had to find another. He seemed nice enough, even told us he had a tube fed son. We sat in his office and said, "No one will listen to us," and he gave the impression of listening. We said we wanted to find the real answer to why Cyrus gags and retches and won't eat. He sent us to St. Louis to a feeding clinic. We took our Speech Pathologist, the only person in the world who seems to care this is happening, and the results were just as I suspected: nothing. They basically said, well, we are a speech pathologist and an OT and you guys have all that at home. I cussed.

Parenthood is isolating, frustrating, and exhausting. The small moments of joy are overshadowed by doctors who won't listen and others who don't understand. We are still tired, as I imagine most parents are, but we were exhausted before we even began. We take turns getting up around 2:30 every night to give the little man his quit-retching drug. Since he started daycare in August, he's been sick a lot. And when Cyrus is sick, he coughs. When he coughs he gags on his own mucous. Then he retches. And screams. Screaming makes him cough... We never seem to sleep.

Even if it's not my night, I wake up. When it is my night, I give the drug and then lie awake for an hour, sometimes two. Just as I slip back to sleep, he coughs or cries or makes some noise to wake me, and the process starts again. I don't know why I try to sleep anymore. I fantasize, as I toss and grunt in bed, that I could get up and start writing. That the middle of the night should be my writing time. I imagine that I'm some machine. That sleep is a stupid excuse that lazy people need to justify not doing anything. But I don't have the strength to get up. So I stare off into the nothingness on the verge of tears. They never come.

Just the other night Mindy woke me up saying she was going to call the doctor. He had a fever of 104.1. While we sat up, looking to see if the tylenol would help, I suggested we turn on the t.v. The over head light was low and we watched some documentary about Pompeii. It was about 2:00 a.m., so my body was used to being awake. It was nice. It was time we spent together. In that hour, I was convinced yet again, that I could live without sleep. That I could stay awake all night catching up on all the films I've neglected to watch, reading all the books I don't make time for in the daylight, writing and revising all of this fucking blog. All of everything I've ever written.

I've heard it too many times: "Having a baby is hard work, but I wouldn't trade him/her for the world." Well, of course you wouldn't, that would make you a horrible parent and human being. But you're all lying. You'd trade money for some time alone, for some time out with your friends, for some time out with your loved one. You'd trade lots of shit if someone watched him while you took a vacation. Somewhere with a beach, even though you hate sand. Somewhere that looked nothing like work, home, or a doctor's office. You'd trade him, not forever, but for a while, for some sleep. Some sanity.

Wednesday, May 25, 2011

November Spawned a Monster

It was in the fall that I started watching "Obsessed" through my Netflix account. You see, I normally dig those kind of shows. Mindy and I went through 10 seasons of "The First 48" in a month or two. I can't get enough real death in my t.v. show watching. It's like exposure therapy for me; the more I see, the more I can come to accept the fact that I, too, could be gunned downed at any moment. Or more importantly, really, we all must die. And this might seem strange to you if you know anything about my career(s). I love skeletons because I fear them. I love dead people because it is the only truth that every creature has. No matter what and who, we all rot. The end.

Obsessed appealed to me because I got to watch people acting totally crazy: washing their hands a million times a day or guzzling vodka and barfing vodka. At first I laughed at the people with their anxieties and thought how I could really keep my shit together compared to most people. How, after all we'd been through, I was really holding up well. One woman wouldn't drive the highway because it reminded her of the route to her parents' graves. Her double digit kids had never been to the zoo because the only way there was that highway. One man lived in a sterile house of stainless steel and white couches. Some other woman was afraid of the dark, especially looking at her face in a mirror, in the dark. The therapist's cure was for her to sit and stare at her shadowy self. I smirked at the first few episodes, but I started to find myself imaging doing what they were doing. I could starve myself to gain back the control I'd lost. I could exercise 10 times a day like that other guy, just to take my mind off things. Eventually, just seeing the next episode listed on the screen was enough to get my heart racing, anxiously, like all of them.

One day in November I was sitting at my desk trying to grade papers, trying to prepare for the two classes I had later that afternoon. My head started pounding. I never had headaches. I was listening to music, but it all sounded like it was on a turntable at the wrong speed. Slowing and speeding at the most undesired times. I pulled out my ear buds and stared out of my window towards Lincoln's library. It's a fabulous building which is built to be reminiscent of a castle. It even has a moat (swimming with only Koi). It was too much to handle. My heart was pounding. I put my head in my hands between my knees, trying to center myself. I couldn't be there any more. I had to leave. I had to think of a place to go to feel better. I considered the library, too many books I hadn't read. I'd feel inferior. I'd drive down to the river there in Jeff. No, even though the river is my friend, there wasn't a familiar place I could go to talk to it. Home. I considered driving to Portland to mom and dad's. Yes. I'd just sit down where it was comfortable, down where I'd been nearly every night of my childhood. NO. I couldn't. I wasn't sure I could stand the 30 minute drive only to have to leave and drive 60 minutes back to Columbia. My obvious choice was home. Home was where I lived. But it was where I lived with my preemie son who was still on house arrest. Where I lived with my exhausted wife. Where I lived with my teenage daughter. Where I came home to cook dinner for them, and sometimes my mother-in-law. Where every three hours my son must be hooked up to a machine to eat. Where I was existing, but thinly. Silly putty stretched to breaking, those hair-like tendrils wafting in the wind. But my only choice was to go home. So I did.

The Vodka Swilling Twenty Something episode really had me jealous. If only I were an alcoholic, I could go to rehab where all I had to do was worry about myself. There'd be discipline and food provided for me. In my spare time, I could go to therapy or whatever. I could read and write. I'd live in a nice place in the woods. If only I could become an alcoholic. There wouldn't be 80 students bothering me about essays they don't even care to write. I wouldn't have to deal with opening that measly check eight months a year. What could I do to get myself into one of those rehabs? What could I do to still my brain and have time to think and heal? I've never been suicidal, but I had a strong notion that I could pretend. That I'd be a perfect candidate.

I wondered if I was an alcoholic, anyway. Two to three drinks a night was my standard (more than most people drink I guess). But it wasn't affecting my relationship, my job, my son. I still argue that I had to, to put my mind away from all the horrors I'd seen in the spring. Even if it was my unhealthy coping mechanism, it wasn't enough to get me into one of those places. Those drinks helped me get to sleep with my snoring wife and my mind always wondering when my son might walk, speak, eat with his mouth. When we'd feel like we were a normal family. When would that happen? I let the drinks rock me to sleep, half consciously dreaming of the days when I had only to worry about myself. Then the days when I worried about Mindy. Those days, years in the future when Cyrus will have grown into a man. A chiseled jaw and bouncy blonde curls. Those blue eyes. All he'd have left of it would be a linear scar on his torso, a small hole healed (like a piercing straight through to his stomach!), and he'd wear contacts or glasses. And this is how I spent most of last year.

But now it's May. School is out. I'm working on a friend's farm. I spend about thirty hours a week working outside with my friendly boss (or alone when she must leave). I sing to any song on the radio as I seed, weed, paint, whatever. I don't care. The nearest neighbor is more than a mile away. I don't mind doing much of anything when I'm outside and there is music and nary an essay to grade. Cyrus is allowed to go out in the world, too. It looks like he'll walk sooner rather than later. He has baby glasses. The helmet will be history in about a month. He still doesn't eat with his mouth, but he will. We all have faith that he will, or that he can. And if he never does, at least he will speak. At least, it seems, he's all there. And I'll say that again because I'm not sure everyone understands how fucking amazing that will be. My son, who was less than two pounds, had seizures 13 weeks before he was supposed to have been born. As far as we can see, he is all there. My son is a whole.

I've tried to quit watching those fucked up shows about drugs and addicts and anxiety. Because sometimes, I guess, reality shows hang in that gray space between what is real and what isn't, like staring at yourself in the mirror in the middle of a really long, dark night.

Sunday, January 23, 2011

The Sun King

It's January. It's so January it's almost February. So far this year has gone off okay, save for the fungus growth on my hand and Mindy's and my bout with food poisoning/flu. I have turned 31. I find it to be a sexy number. Everything about it feels more solid than 30. Thirty is so round and loopy. Sure, it looks nice, but I nearly slipped off. Thirty-one, though, I feel safe just to the left of the one, hidden in the overhang of the three. I could fit there and not feel so exposed. It would give me time to gain back the strength I lost clinging to last year.

It's almost February. And February means it's almost March. I don't care if there is an Alaskan load of snow on the ground; the sun has changed, the earth is moving. We're all careening into spring.

Mindy claims that a few weeks ago she had a whiff of something which reminded her of spring. Something smelt earthy. Her heart stopped and she broke into tears. You see, last spring was no good. No good at all.

But I'm ready for this one. Our little man's speech pathologist has told us she expects him to be done with the tube feeding in four months. In four months, he'll also be done with the helmet. In less than four months, RSV season will be over and he'll be free from the shackles of home, from the death threats of every stranger's hand, of every doorknob and pen.

I plan to accept the smells and sights of spring. As I plant my garden I will make myself remember that last year at the same time I was wondering if I would get to be a parent for more than a few weeks. You see, I planted tomatoes, all the dirt and compost on my fingers, and I wondered if those plants would live longer than Cyrus. I also gave meaning to every one and in my head it went for every one I plant, Cyrus lives. Cyrus lives.

A lot of our friends had babies around the same time Cyrus was born. Facebook is filled with updates of sitting up, rolling over, standing, crawling... all the stuff that babies do. Cyrus cannot do those things. He does like to stand, but you have to put him there. He can almost sit up without falling, but he can't sit himself up. He's never even acted like he wants to roll over. His days are filled with exercises: a big ball, a green foam thing he sits in, we have to spin him in circles so many times a day, he practices sitting on his knees. We do a lot.

There are pictures of babies with food smeared on their faces. Cyrus gets to eat with his mouth once a day, and if he takes two teaspoons, we rejoice. I feel like crying every time he swallows the tiniest amount. I can't believe babies eat with their mouths. I can't believe my son.

He has a lot of appointments with 10 different doctors, but those have become fewer. We've even weened him off of one seizure medication.

I am ready for spring. I'm ready to let the snow saturate the ground, to revive the smell of the soil. I'll drive around town with the windows down, but I'll do it before it's really warm enough. I'll listen to the music that has been put away for a year. I promise to let myself feel all of the things that last year I tried to drink away.

And when the flowers start blooming, and the birds come back, and the snakes start poking their heads up in our yard, I will take my son out into a bright world for the first time and we will enjoy the little things as if we've never seen them before. As if we'd never seen the sun.