Day 1: First Day of Darkness

/ Christina Holzhauser / Leave a comment

Erika said I could share her protest card with you all. It is written in three different colors of markers on a high quality cardstock card:

“Dear Someone

I am so very sorry you are receiving this letter. My mother has made it a RULE that we are not allowed to use Anything, no devices not even internet! You must be thinking ‘good for you guys!’ Well you do it then. I must write letters to talk or I must use a weird cord phone. I am here to PROTEST! Save the internet, save the world!

Sinseraly,

A Young Teen Who Cares!”

 

So, that’s most of that.

Here is my log for the day:

8:03 AM

So it’s been only a few hours. Gaby, Cyrus, and I are at the kitchen table. Cyrus is eating breakfast. Gaby is looking at cookbooks trying to find cool recipes for snacks to make while we go super unprocessed with our food.

I have nothing to do with my hands right now. I switched over the laundry. I made coffee. I sat in silence for a few minutes on the couch.

Cyrus is keeping me busy right now. I’m feeding him the high-calorie smoothie through a meat injector syringe. He’s also being fed a Hawaiian roll with cheese, butter, and mayo. He won’t eat it by himself. I load the syringe and squirt it into his mouth each time. I pick up the sandwich and wait for him to accept a bite, like a little bird. They syringe drips everywhere. We do this every morning.

6:00 PM

We went to mom and Dad’s for our christmas celebration. Mom, of course, had a whole spread of food. My inclination was to take a picture with my phone to put on instagram. But. On the table: turkey, mashed potatoes, corn, green beans, black eye peas, cottage cheese, rolls, carrots, cheese, deer sausage, crackers, salad, maybe that was all. Now just picture it.

I guess we’ve already cheated today. Dad had the tv on. I tried not to pay attention. I had to use my phone once to look up our home phone number. I haven’t memorized it yet. Gaby struggled this morning while getting dressed; she reached over for her phone, for no reason, to see what was happening. Thankfully, it was turned off.

Erika has spent the day bargaining and trying to make sound arguments against this  whole stupid idea.

*She comes into the kitchen to wonder how her friend’s mom will know that Gaby called. It’s really causing her a lot of anxiety*

For me, I have a slight urge to turn on the tv and rewatch Bojack Horseman, while folding laundry or doing anything, really.

But right now we’re all around the dining room table. Gaby is menu planning and making a grocery list. Erika seems to be writing a card to someone, but she says she’s protesting. Cyrus is very busy with a PJ Masks activity book he got for Christmas. Me, I’m journaling. On paper. With a pen. This is another moment I might document with a picture for social media. But. Again. It’s a nice picture. Everyone is busy with a book or paper. It feels good.

I wonder, though, once I’m done journaling, how I can busy myself. We forgot to buy an alarm clock, so I’m going to ask Mom for a wake-up call. It’s only 6:15. I  to go to bed at 9:30. What to do.

***

You’ll be happy to know that after finishing up my journal entry, I folded some more laundry. We listened to the radio. Then Erika, Cyrus, and I played guitar, cuatro, and maracas for about 35 minutes. I sang off key, but it didn’t keep it from being a pretty good time. Gaby wrote several letters to people while we did this. And she tells me, right now, she started crafting her own cards, too.

Also. Erika drew several protest signs which read “Save the Internet, Save the World!”  and “Save the WIFI!”  And ” #itsnot1950

Day 1 difficulty level: Mild/Easy.

Tomorrow I go back to work and Gaby is at home with the kids since there’s no school. I hope she journals for you then.

 

 

Going Dark

/ Christina Holzhauser / Leave a comment

The idea started when I had a hankerin’ to google that show, “1900 House.”  It aired on PBS some time around the turn of the century. I mean, the 21st century. It’s a reality show where a family in London is selected and put into a period house where they must live for 3 months without modern technology; the house is completely set-up with antiques, including the wall paper and gas lights; they send and receive mail 3 times a day; the women wear corsets, even to do house work; they have a budget and must buy only locally produced food from the butcher (who makes house calls), and they have to use a cook stove to make their food. I think I saw the show originally when I was living in a basement apartment in Houston, making grilled cheese in a toaster and eating angel hair pasta with butter. What I liked about the show is the challenge. And. How much it reminds me of the stories I hear from both sides of my family. Mom grew up without running water on a farm far away from town. Dad didn’t have running water until, well, I can’t remember, maybe they got it when he was in his early teens. They both grew up with an outhouse. They both grew up killing their own animals and helping out around the farm or house.

I suppose I’ve lived back in time already, in ways some people my age have not. I have helped hunt and process the carcasses of animals my family would come to eat. I grew up with just one television station (until Dad bought a satellite dish). I used a rotary phone and had to make sure our neighbors weren’t on the party line before I dialed out. And, in a move which horrified my parents, I lived in small cabin in Fairbanks with no running water and an outhouse for several years.

I don’t have some romanticized idea about “country living” or “living off the land.”  I know it’s hard. I know it sucks. I’ve seen the look in my mom’s eyes when she is asked about her childhood. I moved to Fairbanks to get away from what I knew, that’s true, but it wasn’t with the same stars in my eyes that some others had there. One woman, someone with money from a large city, thought this was how she was going to commune with nature or have some more authentic human experience than what she’d had growing up.  When I lived in Houston and worked at an upscale camping store, my coworkers were shocked I didn’t hike or camp much, seeing as how I was from the country. All I could say was, you know, when you’re from the middle of nowhere, you don’t really feel a need to get more into the middle of nowhere. I walked through the woods all the time.  It wasn’t until I lived in such a huge city for a few years that I understood the urge to run screaming from the concrete and into the woods where no one could see me.

Did I mention there are other shows? Like, Frontier House, Colonial House, Plymouth House, Texas Ranch House, and there’s a newer one on PBS, called, like, Victorian Slum House. I have no idea who would sign up to be a part of that experiment.

I’m telling you all of this because, while I was watching, I was wondering if I could live without modern advances. I mean. Of course I could. I have. I’m capable of doing a lot. But the more important question is, can I live without some of them in a world where everyone uses them? Gaby and I discussed all of this (she was stoked about the idea), shared a google doc, and made a plan. Will eliminating the internet from our house help with Cyrus’s video game addiction or Erika’s need to have Netflix playing at all times? Will I read more or play the guitar? What will Gaby do without the video calls with her family? Will our family become closer or just ignore each other while reading books? We’re going to test it. I should mention, though, that Gaby and I are the only ones excited about it. Erika, who is 13, is certainly opposed.

In preparation for our 30 days of darkness, I’ve purchased an 8 dollar phone and added a landline. I wanted to get a rotary phone, but Mom didn’t have one lying around, and they cost about 60 dollars now. So far, Erika has screamed from upstairs, “How do you even dial a number?” and “How do you hang up?” HAHAHAHAHAHA. (Still taking donations for a rotary phone if you have one). How am I supposed to text my friends about sleepovers!? she shouts. Pick up the phone, we say, and make a call.

I bought jacks, marbles, pick up sticks, and a new family board game called Karuba.

The rules are this:

-no cell phones used in the house (Gaby needs hers for clients. I need mine for Chef Gaby)

-no internet (except when I get to blog to you about our experiences and Erika for homework which will be monitored at the kitchen table.)

-no tv. (I’m changing the netflix password, too. eeeeevvvvviiillll)

-no video games (basically, no screens)

-We can listen to the radio, but no streaming music. We have a record player and cd player.

-We will write letters. (This is how I corresponded with my first girlfriend; there was no internet. This is how Gaby grew up in the Andes. There was only one phone in her neighborhood that everyone had to share)

-We will talk on the phone.

-Our diet will focus on eating locally raised meats and veggies as much as possible and whole grains. Any breads, pastas, or snacks will be made from scratch. (like cheez-its, fig bars, cereal)

-Make an effort to minimize the stuff we have. We already kind of hate stuff, but we’ll keep donating.

 

All of this begins tomorrow. It’s no 1900 House, but maybe more like…1949 house.

What am I hoping to experience, you might ask. I want Cyrus to learn to play independently; he has wonderful toys and books that he won’t touch unless someone is engaged with him. For myself, I need to learn how to be quiet and still. I don’t do that very well. Maybe I’ll listen to music I forgot I had. Maybe I’ll read a book because all of the children will be reading, too.

Maybe we’ll all lose our minds. Maybe we’ll all find ourselves.

 

 

 

 

 

Letter to the Principal

/ Christina Holzhauser / Leave a comment

Dear Principal

Last Thursday at the parent teacher conference you mentioned trying to look at the bullying situation through a parent’s lens. From everything you said to me, I’m certain you weren’t quite able to do that. Let me help you see:

Cyrus was born at 25 weeks and 3 days. He was a half-baked fetus who weighed as much as a bottle of ketchup. When he was born, he had no nipples or lips, and his ears were just little flaps of skin easily rolled up if his head was positioned the wrong way. His eyes were closed, like a newborn puppy. It was seven hours after he was born that we, his parents, were finally allowed to see him and touch him. His hand was barely large enough to grip the tip of my pinky. His skin was red and shiny, all the pieces of skull visible through his scalp.

He died several times in the first weeks of his life and had seizures which made his right arm move like he was pumping his fist at a concert. It was then that I started calling him a rock star. He lived in a plastic cube attached to a thousand multicolored cables. He looked something like a motherboard, or like a fuse box, or a large sweet potato decorated with silly string.

His stay in the hospital was 134 days. Over that time, his eyes opened, his lips and ears filled out, he started smiling, but he never learned to eat. After two surgeries: one to reattach his retinas and one to insert a feeding tube and close off his esophagus so he can’t vomit or get heartburn, he came home. And home is where he stayed for a full year, hooked to a feeding pump every three hours for 45 minutes. Home is where the therapists came three times a week, and sometimes the nurses, and sometimes a social worker smelling of stale perfume.

His doctors said he’d never walk and would probably never talk. He had appointments with cardiologists, pediatricians, gastroenterologists, speech language pathologists, ophthalmologists, neurologisists. He wore a helmet for more than six months. He wore braces on his legs for three years.

He learned to walk when he was two and a half, though he never rolled over or crawled. He talked before that, a lot before that.

That pretty much brings us up to the present. Feeding tubes, appointments, seizures,  discussion of milestones, the word delay, the use of the word miracle.  

As you might be able to imagine, this was and can still sometimes be pretty traumatic. There is constant worry of what happens next. There comes a feeling of calm, that things might finally be okay, then something awful happens: a seizure, a black bean stuck in his esophagus, a broken arm which requires surgery. A broken arm. A broken arm which requires surgery. A broken arm which requires surgery now and a year from now.

Now that I’ve adjusted the prescription, let me say some more.

I admit that I’m very protective of my child. I admit that sometimes I let him get away with things because I’m so thankful he’s alive or walking or talking or able to button his pajamas. I admit that I still cry tears of joy when he picks up a pencil and writes a letter. Any letter at all. I am still in awe that he’s able to attend a regular public school at all.However, this does not cloud my judgment or opinion of what is right and wrong in a public school environment.

During the conference you made it a point to tell the story of the pencil, that Cyrus accidentally stabbed someone while they were playing. You then said if someone would’ve done it to him, I would’ve thought it was bullying. You made it clear, once again, that bullying requires an imbalance of power, and that one must feel afraid, that it must be repeated. That is the legal definition of bullying, you said on the phone not too long ago.

I am clever enough to understand the implication of the pencil incident, and it’s offensive. You seem to think I’m incapable of grasping the difference between bullying and accidents that happen during play. I understand you don’t believe anyone is doing anything bad to him because you don’t see it, that he still hangs out with them, that he might be making it up, that I’m over reacting. I understand you don’t know that decisions I make are based on logical, rational thinking, not emotion, as you have implied while trying to see through my parent lens.

I find your tone to be condescending and dismissive.

Here is what I know: Cyrus comes home daily to say he’s being bullied. He has said this since the beginning of the school year. Like you, I wasn’t sure if it was true, and he was unable to communicate the details, so I said nothing to the school or teachers because it wasn’t clear to me what was happening, and I am not one to start drama. Then he broke his arm again, for the third time, at school. It was conveyed to me that adults reported how it happened, that he was chasing a ball and fell. When I asked for more information, to see the accident report, everyone became silent. No one knew the protocol. As you know, it took 9 days to get a copy of the accident report which does not list a witness, as it is required to do. When I asked for a meeting and spoke with everyone, I was told, in fact, no adult saw it happen and that the report was based on what the kids playing said they saw. The group he was playing with includes two of the kid he calls his bullies. It’s interesting that the one day the para (yes, who isn’t his) wasn’t there, this happened. I find this suspect, and I hope you would, too, were you in my situation. I am not upset that an adult wasn’t there, I am upset that the information was hazy. If someone would’ve said, “no adult saw it,” I would’ve have understood. But what ensued was a battle for me to find out the truth.

That alone was upsetting and led me to wonder about what’s happening at school. When he breaks his arm, people are quick to ask what’s wrong with him, what’s wrong with his bones. Poor, fragile, premature Cyrus. Poor Cyrus with the feeding tube. And there are people around him who feed on this energy and attention; It’s not me. The orthopaedic surgeons have said repeatedly that his bones are normal. Yes, he is a little clumsy because he is delayed. He has poor motor skills, as most premature kids do. He has a thick set of glasses. A bully would know that and could easily take advantage.    

Beside the broken arm, there is more and it is most disturbing. Cyrus has said that his bullies have told him to suck his nuts. To be honest, I don’t care that a kid told him to suck his nuts. As I write it, it’s humorous (though I wonder about the environment a kid who would say this comes from). And, if this were the only thing that was said to him, whatever. I heard so much worse when I was his age. What is distressing is someone telling him to kill himself and to break his arm again. The “suck my nuts” I used as an example to prove a specific situation occurred; this is not something Cyrus would say and heard it from someone else. I filled out the bullying report based on this. The school did the investigation and found nothing, of course, so it didn’t happen, though I’m told with what feels like little sincerity that if he perceives someone as bullying, then it’s true.

A seven year old told my seven year old to kill himself.  

 

What is important for you to know is this: I’ve been lied to. I’ve been talked down to. There is a real or perceived imbalance of power. It has been repeated or has the potential to repeat.

 

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Death by a Thousand Cuts

/ Christina Holzhauser / Leave a comment

I’ve been trying to count the number of times Cyrus has been in the hospital, or the ER in the past year. The number starts at 4 and goes as high as, I don’t know, 12. This doesn’t include the major surgery he had last August and the three procedures leading up to a perforated esophagus. So, in the past two years, that’s, what…nearly 20 hospital visits. And that doesn’t include regular appointments he has with therapists.

Last week he broke his arm, again, the fourth break since last October. Today he had a follow-up appointment to make sure everything was in place. Hey. Guess what. It wasn’t. So, Cyrus has to get a pin inserted into his radius, the length of it. That means general anesthesia. A new cast for four weeks. And he’ll have to go through it again in a year when the pin is removed.

Alone, this is not a huge deal. Two broken bones is not a huge deal. Three really isn’t either, I guess. Four seems like a bit. But for me, and for Cyrus, of course, these four broken bones are added onto 7 years of procedures and white coats. Of a beginning so traumatic, I’m still recovering.  So is he, though I don’t know if he understands.

And, as always, just when things start to seem okay, when maybe I feel like he’s going to catch up with his peers and not break anything else or finally start eating, something happens. He falls. He gets something stuck in his esophagus. He’s put into more special ed classes because he can’t write really well because he broke his dominant hand twice because no one knows why.

Gaby said tonight that living with Cyrus was like constantly building a house of straw, piece by piece, only to have it blown over with the smallest breath.

I describe his situation as death by a thousand cuts.

I describe my own mental health the same way.

This is where I’ll mention that this is the third time he’s broken his arm at school. And this is the time where I’m finally suspicious. I’ve been fighting with the school and the district for a week to see a copy of his accident reports; I’ll spare you the narrative,  but I’ll say this: no one knows the protocol for getting copies, the person in charge is out because he daughter got married, this woman is a CFO?, I’ll have to file a written request, It won’t be ready in time for the meeting scheduled at school, but hey, I can read over the shoulder of the principal when I get to the meeting, the adult who is supposed to always be by his side was not, somehow some adults wrote the report but I can’t know who they are, his bully might’ve been there when it happened. The school is willing to do anything to help poor, poor Cyrus and why does his bones break so easily (there’s obviously something wrong with him)? You should wrap him in bubble wrap. ha.ha.ha.

All of this has taken a toll on Cyrus. He is either shaking in fear when he sees a white coat, or he is explaining all the steps that will happen, naming all the equipment and acting like it’s no big deal. The last time in the ER when the doctor asked if he knew why he was there he sighed and said, “I broke my arm again,” while continuing to play on the iPad.

My amazing and supportive partner, Gaby, who has lived with him for a little over a year has gone from optimistic and unaffected to crying right along with me when something else happens.

All I want is for Cyrus to be okay, for a whole year. Just a year without anything major would be an improvement.

Last week as I drove Cyrus to school, we were listening to his playlist. O Fortuna was playing and I’m not even lying. He was looking out the window, into the fog and rain, his bright yellow casted arm held with his other hand. Just the night before he’d mentioned that he didn’t have any friends at school, that his teacher is mean, that his bully bothered him again. And here was this kid, his blonde hair a mess, just sitting calmly while I drove him to a place where no one likes him, where he breaks his bones, where he is forced to navigate the world as we all had to. He wasn’t crying or screaming. He just seemed to accept his fate.

 

There are days when all of Cyrus’s past just rushes over me and I have an anxiety attack. There are days when I’m capable of forgetting everything. Here, let me mix some metaphors: Some of the days you’ve known me, the straw house has just been blown over. Most days you see me, we’re rebuilding, piece by fragile piece. I guess I’m telling you because I need you to understand that if you see me not really functioning, if I can’t show up to the planned event, if I just put on my headphones,  I have reasons. A thousand of them. Or. One. Just one reason.

That should be enough.

 

 

Responding to the Friend Request from a Middle School Boyfriend

/ Christina Holzhauser / Leave a comment

I see your face there, requesting my friendship. You have the same look in your eyes as when you requested other, more intimate things from me. You look much older now, though, a lot like your dad.

Your profile pic has one of those  waving American flag filters and the words, “I stand” written across it. This is one clue that already makes me wary to hit the “confirm” button. It seems on this important issue, we don’t agree at all: Why I Sit, Part I. and Why I Sit, Part II.  If you read those, it might be enough to change your mind about wanting to be my friend. Hell, even if you don’t read those, the title should give you a very important hint.

I’m sure you know that I’m a lesbian; it was a small town, and I came out just a year after you graduated high school. That must’ve been around the last time I saw you: 1997.  I don’t think I’m wrong when I say you’ve voted against me for probably the past two decades. What you might not know is that my partner is a Spanish-speaking immigrant. Let that sink in, buddy. Okay. Maybe I’m incorrectly assuming a whole lot about you from that one profile picture.

So,  enough about why you don’t want to really be my friend,  I want to tell you why I can’t be yours.

There’s a very good reason I will not be accepting your friend request. You see, I did some thinking a while back: Getting Trumped. If you look closely, you might find yourself in there somewhere. Of course, that’s assuming you recognize the situation. Let me repeat it. You’re #1. As in, the first time I remember a man sexually assaulting me.  Here it is in case you don’t have time to read the full piece about the Cheeto-faced leader of the free world grabbing women’s pussies and bragging about it and how it affected women:

#1

Though I honestly can’t remember if this is the first time [someone sexually assaulted me], I do remember it vividly. I remember it because I was old enough to almost understand. I was 13. And he was my boyfriend. It was on the bus on our way to a track meet. He was a track star in our tiny school. He could climb the rope in gym, upside down. We sat in those green plasticy leather seats. He put his hand on my leg, my knee. That I enjoyed. Or, at least, didn’t mind. But his buddies were in the seat in front of us. They turned around and peered over. And there were only guys behind us, too. I was trapped against the window. His hand kept moving down and closer. I asked him to stop. I told him to stop. But those guys in the seat ahead were watching and he had something to prove. And they kept saying, “C’mon, he’s your boyfriend!” And I kept saying no, download (1)politely. I didn’t want to be uncool. I also didn’t want his hands anywhere near me. But he did. I mean, my pants were on and everything, so I wasn’t sure if it counted for something I should tell someone. He just kept his hand there for a moment and wiggled a finger. I felt like puking. I broke up with him not long after that.

***

Maybe I mis-remembered breaking up with you. Now that I think about it, I think you broke up with me, and you sent someone to tell me (as middle schoolers do) right before I got on the bus, and I think the reason was because I didn’t put-out. Whatever the fuck that means when you’re in 8th grade. I think the reason I remember it as me breaking up with you is because I felt so relieved. Maybe I just wanted to come out the hero in this story.

Besides that incident, there were many times in the hallways of slamming lockers, where you’d try to kiss me and I’d tell you that I didn’t want to because I didn’t want people looking at me and it made me uncomfortable and you’d try to convince me and you’d do it anyway and stick your tongue in my mouth. I remember how you smelled and the jeans you wore. I remember that some of your guy friends saw and would say shit like, “Way to go, dude.”

I figure by now in this explanation of why I won’t accept your friend request you’re pretty pissed. That’s fine. Maybe you are saying, like, she’s a fucking dyke, anyway, that’s why she wasn’t into it. Or maybe give me a break, I was a kid and didn’t know any better.  Well, believe it or not, I “dated” quite a few guys in my teenage years. Almost all of them treated me with respect. There were teenage boys who were kind and listened when I said no. And here’s a weird thing, I feel like I have to thank them for being good and respectful. I feel like it’s unusual that they would behave appropriately.

How fucking horrible.

That I should applaud young men for being decent.

Maybe, too, you’re thinking, like why didn’t you say anything or break up with me? Good question. You see, society taught me that guys will be the aggressor and if I don’t accept sometimes, I lose them. And it’s bad to lose a man. And, wait, I think you broke up with me because, what was the reason again? Oh, right. Because I didn’t “put-out.”  But maybe it was more like, I didn’t accept your aggression.

Now it’s 24 years later and I’d like to go back to help young Christina in her time of need.

When I relive that moment, I imagine I punch you square in the face. All of my friends are watching this time. You don’t really cry until you get home later in the evening.

It didn’t hurt as much as it scared you, but you feel so humiliated, so powerless.

 

 

 

The Sum of His Parts

/ Christina Holzhauser / Leave a comment

Seven years ago around this time I wrote this.  If you don’t have time to read it, no worries; I can fill you in. Cyrus had been in the hospital for two months, weighed less than 5 pounds, still, and two of the family’s cats died within that time span. I wrote about the book of Job in the Bible. How I felt like I was being tested. How fucking dramatic and ridiculous that whole story is.

But here I sit, in the hospital with Cyrus again. The machines have been beeping for 15 minutes straight, rousing him from sleep, with the same noise they made seven years ago, when the oxygen in his blood fell from 100% to 15%. When he nearly died all the time. When he had seizures. When I became not just a parent, but joined the preemie parent club. A group in which I wanted no membership.

So, in the scheme of all the awful things that could happen (and have happened) to Cyrus, another broken arm isn’t bad. Unless you start to do the math of the amount of times he’s been in the hospital the past year. It’s something like 6 or 7. He’s been put under general anesthesia at least half of those times. A major surgery in August. Two broken arms since November. And now. Third time’s the fucking charm.

It’s his left arm. A level 3 supracondylar fracture. He had a level 2 in November; they had to place two pins and a cast. It’ll happen again in the morning. He just got the cast off his right arm on April 4 and was cleared for physical activity 10 days ago.

Now. Why do I tell you this? I’m not sure.

There are definitely times I want your sympathy, your kind words, your anger and bitterness of the injustices in the world of parenting. (Yes, the most self-serving, first world problems)

Sometimes I tell you because maybe I want to justify my overprotective parenting or his constant need for help up and down stairs. If you notice, he grabs my hand a lot for help. He knows he needs it. He’s so cautious.

This happened today, reportedly, when he was walking through the cafeteria at school. One minute he was walking; the next he was on the ground crying and holding his elbow. When the nurse called and said he fell, I could only say, “C’mon. No.”

Some of you have wondered at his condition: does he have weak bones? Was that caused by being a preemie? What do the doctors say? What can be done?

So far the answer seems to be bad luck. But I know that his motor skills aren’t equal to those of other kids his age. He stumbles a lot. His eyesight isn’t great. He lacks maybe 20 degrees of peripheral vision.

The even shittier thing is that when he last had this break, he was just learning to write well. He started writing with his right hand, and things got all confused. He basically had to go back to the beginning. And now. He’s almost to second grade and in 25% SPED classes because he can’t really write. He eats through a tube in his stomach. He goes to therapies. Blah blah fucking blah. You know all of this already.

Doctors struggle to treat him as a whole human person. Even the doctor this afternoon, who listened when I said he had severe anxiety about being in a hospital, admitted she hadn’t looked up his medical history “that far back”-which meant November. It’s become a joke when someone walks in the room and says, “any medical history?” I scoff. And that’s the exact word I mean to use. I tell them they can read all about him in the system. He should have seven whole years of information there. If they press, I give the abridged version, “25 weeker. Seizures. ROP. Nissen. Feeding tube.” Cyrus’s ailments and procedures aren’t countable on all my fingers anymore.

***

This space intentionally blank for you to grasp the million dollar bill from the NICU, plus all procedures that came after.

Now. Think about all that without insurance.

The trauma plus the bill would be more than enough to kill and entire family.

***

Every time something happens, some doctor says, “He’s doing great for a 25 weeker!” (You throw really good. For a girl.)  I know that he is great. I’m so happy he is alive and thriving. He is intelligent and caring. He is relaxed. He seems to be some sort of gamer nerd in the making. He also wants to be a football player. But just once I would like a doctor to say how amazing he is. Period. Or to look at him like he’s been through it all. Like he’s older than 7. I want someone who recognizes that he’s not just a kid with a broken arm, but a kid who’s had a whole bunch of bullshit happen to him. A kid who has never gone a year without a hospital visit. A kid who is afraid of steps and running. A kid who is afraid to eat. A kid who screams, sweats, and shakes when he sees one of the kids’ hospital gowns with “sleepy tiger” written all over it under cutesy pictures of a cartoon tiger.

I said so many years ago that I’d take broken bones over seizures and eating issues any day.

I guess I didn’t realize my wish would come true.

 

Getting Trumped

/ Christina Holzhauser / 1 Comment

#100

The last time was just a few weeks ago. It was the night after our rugby game and I went to our bar for a quick drink before picking Gabi up from work. I was sober when I arrived, but it appeared that others weren’t, including one member of the men’s team who bumped into me. Some of us were looking at pictures from our game and we noticed that some of our nipples were hard. When you wear jerseys as tight as ours, it’s hard to miss in still, high quality photos. We giggled. Then the dude, a friend, reached over and poked my nipple. *boop* And I swatted his hand away. He told me it was cool, I could grab his cock if I wanted. I declined.

Before Trump’s video broke, I would’ve said, “It’s harmless; he’s gay.”  But I can’t feel like that right now. And I should mention that this isn’t the first gay man to grab my boobs. There are many straight men in that category, too.

#87

This happened a few years ago at a dance club here in Columbia. I was out having a good time with my friends. We were drinking and dancing, like humans do. Some guy started dancing with our group. I danced a little sexy with him. Why not? I was there to have a good time. But in the middle of all the dancing, and it happened so quickly I had no time to process it, he reached over and pulled a Trump. Though, it wasn’t necessarily a grab, but a slow swipe. It was awful. And violating. But what was worse was the look in his face when he did it. A fucking creepy, sly smile. Like not only was he proud of himself, but he was certain that I wanted it. I did not. Not even a little bit.

# 65

Chicago. 2014. Rugby weekend. I was with Gabi and we’d been dating just a few months. Some guy walks by our group and grabs my ass.

I can’t believe it wasn’t until last week that I realized all of the times I’ve been sexually harassed and assaulted. Maybe my problem was a lot of our problems: feeling embarrassed to say anything, thinking that no one believes what we’ve said, thinking that they can’t understand how horrifying and violating it is, thinking they’ll just tell us to relax, that we’re over-reacting.

 

I’m 36 and I just realized I’ve been the victim of sexual assault several times in my life. It took this long because I’ve been taught to understand that it’s “just one of those things.”

#2

I’m 14 and my boyfriend  insists on making out with me through “The Fugitive.” I’ve asked him not to. I’m told that it’s what people do. And I should like it. And don’t I love him?

#1

Though I honestly can’t remember if this is the first time, I do remember it vividly. I remember it because I was old enough to almost understand. I was 13. And he was my boyfriend. It was on the bus, on our way to a track meet. He was a track star in our tiny school. He could climb the rope in gym, upside down. We sat in those green plasticy leather seats. He put his hand on my leg, my knee. That I enjoyed. Or, at least, didn’t mind. But his buddies were in the seat in front of us. They turned around and peered over. And there were only guys behind us, too. I was trapped against the window. His hand kept moving down and closer. I asked him to stop. I told him to stop. But those guys in the seat ahead were watching and he had something to prove. And they kept saying, “C’mon, he’s your boyfriend!” And I kept saying no, politely. I didn’t want to be uncool. I also didn’t want his hands anywhere near me. But he did. I mean, my pants were on and everything, so I wasn’t sure if it counted for something I should tell someone. He just kept his hand there for a moment and wiggled a finger. I felt like puking. I broke up with him not long after that.

 

I’m telling you this because maybe you don’t realize it. Maybe, correct me if I’m wrong, ladies, but this happens to all of us. I’m curious to know just how many numbers we all have. Women are groped and fondled our entire lives. We are pulled into the laps of our uncles and made to kiss our dad’s friends on the cheek when we’re younger. We are expected to be handled by strangers on the street, in bars, at work. We are made to feel shame for not liking it or for telling anyone. We are told we’re over-reacting when we try to explain the violation.

I’m writing this for all of those guys who’ve done this. I’m writing this for those who haven’t.

Most importantly, I’m writing this for all of the women and men who’ve been the victims of these assaults. And I finally feel comfortable defining them that way. But, my hundreds of times are small compared to those stories I’ve heard from other women. Rape is a hard word to say, so most don’t. But I feel like we all know a few people who’ve been a victim.

After Trump’s video @kellyoxford asked women to tweet their first sexual assaults to her at #notokay. She reports getting two per second.

Though 100 might be an exaggeration of my own numbers, I know that once can feel like a million. I’m curious to know your numbers, too.

Maybe, as women, we prefer to be silent because we are taught to be. We are told to be.

I hope you vote loudly this year.

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Why I Sit, Part II.

/ Christina Holzhauser / 2 Comments

The last time I sat while the national anthem played was at Erika’s volleyball game just a few weeks ago. I was the only one. Dad was behind me, back a few rows of those middle school gym bleachers. I could feel his eyes on me. He didn’t say anything when it was done.

Beside me was Gaby, my Venezuelan, now American citizen girlfriend. She always stands, she told me. I asked if she felt that she had to. Yes. Yes, of course she does. She has an accent, you see. I can’t even imagine what people might say to or about a woman with a Venezuelan accent not standing for the anthem.

I’m privileged; I’m white. I talk like you do. I can code switch, too, between city and country folk. So I am positive that, even though you might delete me from social media, hatefully share my writing, or make snide comments on my post, you won’t kill me for who I am.

But you will do your best to shame me.

***

Last year on the Fourth of July, as Gaby and I sat in her yard on a blanket and watched the fireworks, I asked her if she knew the history of the Star Spangled Banner. I told her. How the fireworks represent the bombs exploding, the line about our flag still being there. I was touched and a little teary. Though I am not always proud of my country, I am still an American. I still find myself occasionally getting teary-eyed about the promises our constitution made, about the ideal of what our country is supposed to be. Land of the free. All that. Sometimes I actually buy into it. When I hear stories about refugees fleeing here and feeling so welcomed, so free to do as they please, I cry. How beautiful our country is. And for some people, we are still seen as a place of refuge, a wonderful land of opportunity. And this is what we claim for ourselves, but then, when people are actually in need, we talk about banning them based on a religion we find threatening because it is not a majority here. Which is totally the opposite of who we claim to be. When people who are brown risk their lives to cross deserts and rivers to reap the benefits (which we boast repeatedly) of this nation (whose arbitrary borders have crossed and recrossed theirs) we call them names and tell them to go back to where they came from.

Because a country is just that: a piece of land with a made-up border. Maps are constantly changing, you know. The lines may move, but the people remain.

 

I am told I should stand for the pledge of allegiance and place my hand over my heart. I am told to say, ” I pledge allegiance/to the flag/of the United States of America/and to the republic for which it stands/one nation/under God/with liberty and justice for all.

Amen.

Let’s break it down.

I was told, at the age of 6, to pledge allegiance to an object, but to not have any false idols before me. Do you know how many rules there are when it comes to a piece of cloth? Lots.

I am told, still, to pledge allegiance to “one nation, under God.” Being an atheist, this is silly. Being an American, I cringe because I was under the impression we have separation of church and state.

I am told that I must rise for the anthem and the flag to pay tribute to those who have fought for my right to choose to stand or sit down or sneeze. I am shamed into honoring those who have come before me. So, I should know where I come from, all the sacrifices that have gotten me to where I am today. Okay. I will respect and learn from this country’s history. I won’t forget all that have come before.

But my black brothers and sisters are told to forget all that has happened. The slaves were freed, get over it already. Jim Crow. Civil Rights. That’s all in the past. Let’s think about the future. Everyone is totally equal in this great country of ours; that’s what our white, male, Christian ancestors fought for. Equality.

I am a queer woman. I make 22% less, on average, than the white men in charge of this country. And it wasn’t until last year that I was granted the constitutional right to marry whomever I pleased. Can you imagine being told by your family and government that you were full of sin and didn’t deserve what others deserve, that you were disgusting, that your partner couldn’t have health insurance, that you are not the parent of your own child? What a shame that would be.

Black women earn 15% less than white women. So. That’s 63 cents on the dollar to a white man. Equality.

And black men, well, stay tuned, gentle reader.

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Why I Sit, Part I.

/ Christina Holzhauser / 3 Comments

Since Facebook didn’t really exist in 2001, maybe you don’t know that I worked at a guest ranch in northern California. Guest is really just another name for “dude” ranch. That means, of course, people with money pay to come feel like they live out in the middle of the woods. I regaled them with stories of eating squirrel and taught them how to ride horses and shoot a 12 gauge.

I loved it; I loved living in the mountains, far away from everyone. I loved being able to smell sweaty horses and leather late into the night. I loved sitting by the creek flecked with gold bits and listening to the water.

But most of all, I loved talking to all of the people that visited and worked there. What was strange about the workers was that they were mostly foreign. I don’t know how, exactly, but there was an exchange program that got the ranch beautiful people from England, Germany, Poland, Holland, and as far away as Australia and New Zealand. I fell in love with all of them, but a few especially. Our nights were spent around the campfire, drinking local beers, smoking whatever, and telling tales of the silly guests and Sasquatch. I lived and worked there for a total of 15 months.

Again, this was 2001. I was in a hotel in San Francisco with a Polish woman, waking up from a strange night, when she pointed to the t.v. to show me the news. I saw planes flying into buildings. She seemed devastated. I listened closely, something about the World Trade Center. I had no idea what that was. To me, New York was a place I saw in movies. I had no concept of its actual existence. It was a dreamscape, unreal, far away. She was crying and I was watching her cry. I didn’t understand.

What I could understand on the news was that America was under attack. That there might be more planes and more bombs in major cities, so I hauled ass back to the ranch, six hours north, to where I was safe by the fire with my non American friends.

And we talked. And I learned. And it was there, just days earlier that I said angrily that Bush was and asshole and he was going to get us blown up. And dammit if he didn’t.

After that, plane tickets were cheap. I paid 450 dollars for a round trip to Germany. I spent weeks there and some time in Holland and Poland.

***

It wasn’t until the next summer at the Siskiyou Fair in Yreka California that I experienced something that forever changed me.  It was the night of the Rodeo and all I could focus on was getting and keeping her attention. The national anthem started playing, so I stood and put my hand on my heart. She stayed seated and looked at me like I was some kind of freak. “Stand up,” I said, incredibly offended. “Why,” she said, “it’s not my country.”

No one, in my life, had ever remained seated for the national anthem. I didn’t know how to react. Should I immediately cut this person out of my life? But. She had a point. She wasn’t American. If I went to New Zealand and was forced to stand for their anthem, wouldn’t I feel a bit weird? So I told her, if  I were with her, in her country, I’d stand. Then I learned that most countries don’t do that. Like. None. And how strange it was for her to see us all stand and singing along, ” O’er the land of the free/and the home of the brave”  And what did it mean, anyway? It was in that moment, at the rodeo, that I felt, for the first time, how absurd it was. I’d experienced something like this just a few years earlier, in church. Everyone was saying the words, but no one seemed to listen to what they were saying. And then there’s the pledge I had to recite every day in school, “One nation, under God….”

I sat back down. What was I even saying? Why were we one of the only countries to be so proud of our flag and anthems? It was like…brainwashing.

Later in the week, she and I watched the Fourth of July fireworks together. “It’s so American, ” she said. And it was. I was so American.

In many ways, I am still very American.

That was 15 years ago. I haven’t risen to my feet for a pledge or national anthem since then. Of course, I’m no NFL player. The last time I sat in protest was at Erika’s volleyball game, in a middle school gym, just a few weeks ago.

I was the only one sitting quietly as the song rang out through the tinny speakers.

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Eat, Puke, Love

/ Christina Holzhauser / Leave a comment

Tonight I watched Cyrus eat some ham, the lunch meat kind. He was enjoying it. Asking for more. When there comes this gurgle from what, to an untrained ear, might sound like his stomach. But. It’s in his throat. Deep down there. It’s like one of those inside kinda weird burps we’ve all had happen to us, if maybe just once. You know what I’m talking about.

Then, after some strange head rolls, the ham pieces and a bunch of spit came out of Cyrus’ mouth. I don’t really know how to describe what he does. He’s not able to vomit like the rest of us, because of the Nissen, but his body still acts like it can. That’s when stuff comes up. But, it doesn’t actually come up. I mean, I guess it’s moving upward, but only from somewhere in his esophagus, not his stomach. So, it’s usually just spit mixed with whatever he just ate, though not always chunky if the food’s chunky.

The big surgery he just had 4 weeks ago was supposed to correct this. Yet. Here we are.

After he spit into a napkin and a bowl, he apologized for doing it. And later as I was tucking him into bed, he apologized again. I asked if he did it on purpose. “No, I think it’s just my body,” he said.

He also apologized not too long ago when he was lying in a hospital bed, attached to the machine with all the vitals and beeps, a feeding pump, an iv bag.  “I’m sorry that I’m here,” he said. As if it were his fault. As if he chose that for himself.

When really I chose it, didn’t I?

Cyrus’ first Nissen was done when he was still in the NICU. The doctor seemed very optimistic about it helping him eat. You see, they’re done when patients suffer from severe reflux. Cyrus was refluxing so badly and all the time that he was aspirating it. And then breathing faster and therefore aspirating more because we kept shoving a bottle in his mouth. The feeding tube was the answer to the question you were asking, “When does he get to come home?” All he had to do was eat to leave. Or have calories. So, after 4.5 months of him living at the hospital, the decision was made to place the feeding tube and do the surgery. I was part of that decision.

Part of a decision that has affected his ability to eat since, well, forever. I didn’t quite understand what a Nissen meant for him in the long run. I knew it would get him home. I was under the impression that eventually they fail and then everything is normal. I didn’t realize he wouldn’t be able to burp or puke. As a baby, he never “spit up” after he was 37 weeks gestation. The surgery, I just learned, can never really be reversed.

He retched. He basically dry heaved all day long. Doctors didn’t know why or didn’t care. It was awful. He’d gag and gag. And his little face would turn red. Nothing would come up. Because it’s not supposed to.

I’ve never known what it is to have a child who pukes in the middle of the night. I’ve never heard him burp.

I have watched him doubled over in pain. I’ve seen him eat things he loves only to have his body reject them immediately. I’ve heard him tell people, “my doctor says I can’t have crunchy things.”

I’ve heard him apologize to me for being in the hospital. To me.

***

This last surgery wasn’t really a choice. After a dilation, the surgeon poked a hole in his esophagus. It sounds so awful. But it was written on the form I signed that it could happen. And it did. So. They had to cut him open and fix their mistake. Along the way they decided to redo the fundoplication, which I understood was causing all of the issues and was going to be undone. I’m not a surgeon. I didn’t get to make that call. I wasn’t even informed until after it was over.

And therein lies my anxiety.

I have been Cyrus’ mom for six beautiful years. Of those years, it feels like I haven’t been in control. I know, you might say you aren’t in control, either. But I mean, major, life-altering decisions are made by his nurses, doctors, and therapists. Maybe you think that’s melodramatic. For the first 4.5 months of his life, there was basically nothing I could do to keep him alive. What knowledge and experience does anyone have with a 25 week preemie? So. He lived in a plastic box. I watched as countless things were done to him. All in an effort to save his life. Doctors and nurses did things and I listened to what they had done after they did them.

He left the hospital with the feeding tube and a pump. I was instructed what to feed him and how much and how often. I was told which medicines to give him. I was told by three different therapists all the things that had to be done so he could eat, walk, be able to button his own pants some day. That intensity lasted two years. Things have slowed down, but they’re still there. They’re still everywhere.

He goes to therapists still. They know more than I do about him. About how bodies work and what he’s lacking.

He goes to doctors who sometimes say what a miracle he is and then offer nothing else to help him. He goes to doctors who want to try ALL THE THINGS to make him a whole person.

The control I speak about isn’t necessarily control. It might be more like ownership. To keep Cyrus alive and thriving, it has taken hundreds of people. He belongs to us all. And there is beauty in that. In the idea that it takes a village. It really does for him.

***

Since he’s been in my life, I’ve imagined apocalyptic, acts of nature scenarios. For years his tube feeds were made of Neocate, a powder that cost $600 a month (which insurance quit paying for…). If something happened, how long would he be able to survive with is electric feeding pump and expensive food? After that was pediasure. It’s made of sugar and other b.s., but it was recommended as a total nutrition replacement. It costs money, too. What if our city was blown apart? How much should I keep with me? His button used to fall out of his stomach. How many could be stock piled? What happened if it went out and the hole closed in a few hours (which kind of happened once or twice)? What happened if the one or two tubes were lost?

But Gaby came into my life and made her love smoothie for Cyrus. It’s organic and full of real ingredients. He’s gained so much weight. He looks better.

He still has a feeding tube, though. And a button attached to his stomach that could break at any moment. If we forget the tube on any outting, he doesn’t eat or drink. I mean. He can, but his body doesn’t seem to like it. He wouldn’t last too long without a button, tube, and some caloric smoothie.

***

The question I am asked most is, “Will he always have the tube?” My answer just a month ago was no. No of course not, it’ll come out some time. When he got the tube placed 6 years ago I was told it would be there maybe 6 months. And then every 6 months I was told 6 more months. It’s all just bullshit.

At the follow up appointment at the surgeon’s last week he said, “I’m sure he’ll have this button out in 6 months.”

“Don’t say that,” I said.

He so confident.

He has no clue. I bet his kids don’t have feeding tubes. I bet he’s never watched his kid retch and cough and apologize for being laid up in a hospital bed with a huge, fresh wound running down his stomach. I bet he’s never spent sleepless nights next to his kid while he woke up every hour violently pulling at the cords attached to him screaming, “I need a doctor!” I bet he’s never slept with his son’s feeding tube hooked up to a loud, beeping fucking pump, draped across his neck.

I bet there are so many other people out there going through worse things than this.

***

Maybe Cyrus will never be able to eat. Maybe it’s partly my fault for agreeing to the surgery so many years ago. Maybe he doesn’t really care as much as the rest of us.

The surgeon says that the surgery worked. That everything is fine. I went to the swallow study and saw for myself that food passes through the way it should. Of course, I’m not a radiologist, but I’ve learned a few things from having Cyrus in my life.

An email from the school nurse today said he puked his yogurt and cheese at lunch. Right now, it seems that nothing is the right thing to eat. Here he sits with his esophagus gurgling, his body rejecting everything, and all he does is apologize, once again, for all the things in his life he cannot control.

Here I sit, too.