Saturday, August 30, 2008

The Mercedes Song

Some people I know are putting together a playlist of everybody's theme songs. This is the one song that you think of when you think of yourself.

There's the rub, right? I have about four or five theme songs, but the Song Nazis demand that I narrow it down to one. This will actually require a bit of enjoyable thought. Right off the top of my head I think of "Under The Water" by Merril Bainbridge, or "Come Back From San Francisco" by The Magnetic Fields, but there are so many others. I have always wanted to ask people what songs remind them of me, and make a mix. It would be fun to see what other people associate you with.

Paula Abdul makes me think of Janyece, and the Cranberries make me think of '80. Creed is Riley, "I Know Him So Well" is Pypes. Everything old makes me think of Luke. "Have You Seen Her" by the Chi-Lights and "Red Rubber Ball" by The Cyrkle.

If you have a Mercedes song, let me know, would you? I might make that mix after all. :)

Wednesday, August 27, 2008

We Are Trained To Jump

So Niko's school calls me today, and tells me that I need to pick him up immediately. I have no car, and called several people before I found somebody to give me a ride. With Nina in my arms, I race into the office. He's not there. They tell me to go to the health office, so I'm thinking, "Oh no! He's with the nurse! Something is really wrong." So I race there. No Niko, but the nurse looks at my ID, gives me a Visitor sticker and sends me to his room. I have Nina on my hip, and I'm literally running to his classroom. I throw the door open and see Niko face-down on the floor. I nearly have a heart attack.

His new teacher is rubbing his back and says, "Shhhh, he's sleeping." Apparently during Music Time, which is when the teacher has her prep period, Niko had a diaper blowout, and the teachers and aids couldn't handle it. They freaked, and since they freaked, Niko freaked. So somebody runs for the teacher, and somebody else runs to call me. For a diaper incident.

"They scared me," the teacher said. "I thought he was choking, or something!" She said that she told them not to call me, but they already had.

The thing is, we are trained to jump. Any parent is, but you throw medical fragility in there, and suddenly everything goes into hyperdrive. "Come pick up your child" means that he stopped breathing, or something has broken inside. Somebody is going to explain this to these teachers, who simply aren't aware of the alarm that they cause.

Oh my lands. My heart nearly stopped.


My father ended up in the hospital, but will hopefully be out soon. His nurse? Is that girl from my home area whose daughter has Williams. What a small, small, small world.

Monday, August 25, 2008

That's How We Roll

Niko's first day of kindergarten! He, like Pinocchio, is a real boy.

I sent him off in the depressingly bland school uniform that he's forced to wear. You know, to crush his spirit and imagination, and also so that he and his homies don't flash gang colors. He walked straight for the bus, climbed up in the seat, and there he was. He returned home victorious, without a call from his teacher. Until tonight, but she just wanted to ask a few questions after observing him for a bit. I'm so proud of him.

Meanwhile, Nina had precious, precious Mommy/Me time. At the doctor's office because of what I thought was an ear infection, but turned out to be *more* teething. That girl and her mawful of teeth...she's never done.

So now it's Monday night. I'm figuring out Audacity because I'm venturing out into the realm of submitting stories to podcasts. I found a site that will allow the author to read their own if they are A) accepted and B) of a high enough recording quality. I think that would be all kinds of cool. Niko and Nina are both lying side by side on the floor, watching Luke play Guitar Hero. Because that's how we roll.

Thursday, August 21, 2008

Oh, yeah, and I write too.

Neverlands and Otherwheres just sent me the final proof to look over. We're good to go, huzzah!

Wednesday, August 20, 2008

So. I'm Afraid.

I enrolled Niko in his new school today. He starts kindergarten on Monday, and it's an all day special education class. That's right. All day. It starts at 8:00 and gets out a little after 2:00. I have mixed feelings about this. The first and strongest feeling is "My baby!" He's so little, and that seems so long. Especially since he's been having difficulty at school lately.

Difficulty at school. That's a polite way to put it.

That's my other fear. That's six hours every day that he could be hurt. Not that I think that will happen, but I didn't think that would happen before. I need a game plan. I need to figure out how I can be involved enough that I can watch over Niko, but not become one of those crazy psycho parents. "Hi, I'd like to join the PTA simply to make sure that you're not abusing my little boy. Who wants root beer?"

My understanding is that the investigation should begin this week or next. I am chronically nervous, and can't sleep at night. My faith in these people is...well, almost nonexistent. They have done very little to earn it.

I'm leaving soon to take Niko to the opthomologist for his lazy eye. This will be...yeah. Wish us luck. :P

On a happy note, my humorous horror officially made it through the first round. I was surprised and happy that the editors took the time to drop me an email and let me know, because usually you don't hear back until you're either rejected or have made the final cut. The anthology is called Dark Jesters, and I'm definitely going to pick it up whether or not my piece is included. Because I'm intrigued to see "humorous horror", and the editors are gracious, and courtesy invites courtesy. And I simply love to read, dear heavens, there isn't anything better.

Tuesday, August 19, 2008

No, Seriously.

A Mormon walks into a bar. She's dressed as an alien.

So the ET Midnight Moon Marathon was sensational. It really was. My parents came down to watch the kidlets, and Luke and I drove out to the Extraterrestrial Highway out by Area 51. We all met at the "Black Mailbox", and watched a lightening storm for a while. The marathoners started at midnight (congratulations, Luke!) then we drove up 13 miles for the halfers, and then the 10kers started at the Little A'le'inn, which was an endearing trailer/bar/restaurant combo. We were all wearing green glow-in-the-dark necklaces, and various other glowy things. Headlamps. Reflectors so that we weren't run down in the dark, and the like. Luke made alien faces out of reflecting tape, and I had two huge alien eyes peering out from my back.

This was a silent race. When it was time for the 10k to start, I was delighted to find out that the song playing was, appropriately, Concerning the UFO Sighting Near Highland, Illinois. It was such a bizarre thing, so eerie, to be running out in the middle of the desert with all of these bobbing lights running beside me. It forced my mind to be quiet. I was thinking the next song would kick it up a notch, but it was 02.20 Boy from Suicide Sports Club. Which I definitely suggest that you listen to on youtube or whatnot, because it's amazing. Imagine being in the middle of nowhere with strangers running silently past, and listening to this haunting song. I'd turn my light to the desert and I'd see all of these strange night time eyes shining back at me. I'll definitely be there again next year, that's for certain.

Sleep Threatens To Overtake Me...Get Back!!!

You know that I hate to fall asleep. I'm afraid of my nightmares, I'm afraid that my heart will stop, but mostly I'm afraid that I'll miss something important. It's always been that way. I wanted to write about Saturday night's run, but I'm too tired to do it justice. I guess I just popped on here to kill some time before I go to bed. A year ago I was in the hospital, and I suppose that I've been thinking about it, and it makes me sad but mostly grateful. I really try hard to appreciate things.

The house is silent except for some white noise. Everybody is asleep, so what would I possibly miss if I went to bed? I don't know. Something fantastic. A meteor shower, or the earth exploding, maybe. A phone call. Life.

Sunday, August 17, 2008

I live!

Just barely. The E.T. Midnight Moon 10k (plus an extra four "supportive" miles) wiped me out, and the marathon nearly did Luke in. But it was an amazing experience that I'll elaborate upon later. This is how it'll begin:

A Mormon walks into a bar. She's dressed as an alien. No, seriously.

Friday, August 15, 2008

Happy Birth...

Well, Nina's birthday fell flat on its face, but the good news is that she's too young to realize it. I was a frazzled, panic-stricken wreck, completely overwhelmed by Niko pulling Nina's hair, by his head pounding, by his new hitting himself in the head while he cries. He's mean to his sister, and he's mean to me. I simply don't understand it, and it hurts my heart. I don't know if it's because he isn't sleeping, or because it's Luke's busy season and he's MIA right now, or if it's because it's summer and there is no schedule. I'm at a loss. Anyway, Luke got home last night and ran over to help our dear friends pack the truck for their move across the country, and didn't get home until midnight. That's right, on our daughter's first birthday. There was a lonely birthday cake and a lot of crying at our house, and it wasn't just the kids.

But that's in the past. Today we did immunizations, always a pleasure, and later tonight we're going to mow down Niko's wild hair. He looks like an orphan with it curling around his neck and ears like it does. So it'll be a day full of tears for Niko, but that seems to be the norm lately.

Tomorrow Luke and I run the E.T. Full Moon Midnight Marathon, only Luke will be doing the half and I'll be doing the 10k. I haven't ran in months, literally, but I'm still looking forward to it. Running down the road, mostly alone, in the dark sounds like something that I need right now. My race starts at 1:00 AM, so wish me luck.

I also saw that the school district is having a meeting on Monday that is open to the public. One of the things on the agenda is autism and special services, and although Niko isn't autistic, I think that I need to be there, if only to see in person the people that I have talked to. The people that let me down, if you want to be honest. I am determined to educate myself, and make sure that nobody can pull the wool over my eyes again. I really want to be able to adequately protect my son. No, I want to be more than adequate. I want to be stellar.

It's been a tough couple of weeks, and I have worked very, very hard to stave off the depression. Sometimes it works and sometimes it doesn't, but I have decided that the very act of trying to stand against it counts as a win. So this morning I got out of bed. I took a shower and combed my hair, and I'm doing the daily things that I need to do. I choose to see this as victorious.

Wednesday, August 13, 2008

Definition of Joy

Today is the first time in a long time that I have the chance to kind of kick back and enjoy the kids. Nothing on the agenda until tonight's Young Women's activity, so I'm cleaning the house and playing Tile Towers for Niko on while Nina naps.

Princess Pretty Fingers has her first birthday tomorrow, and I think how much things have changed in a year. How did our family ever get by without her? She loves. That's what she does, and she's the best at it, and she loves her little heart out. We're so lucky.

Niko's having a positive moment right now, but his tantrums have Like the tantrums of old, except with new twists. Now he's banging his head against things. The floor, people. He's started pushing and hitting. This is all new behavior, and I'm ready to pull out my hair. Is this typical learned behavior? Is there something more sinister behind it? That's what is wearying me lately, this constant looking over my shoulder to see if there is more that I should be aware of.

I finished my "humorous horror", and what's even better is that I like it! I submitted it last night. I'd like today to be a writing day, since I'm midway through a new novel, but we'll see how it goes. I had a writing epiphany the other day. I was reading about an author who's first novel became a best seller, and he was describing the fear that his sophomore attempt wouldn't do as well. And I thought, does that fear ever go away? Is there a point where you ever truly "make it" as a writer? And I thought, no, most likely not. But I genuinely enjoy the process. I love writing, I like when it comes easily to me. If it isn't coming fairly easy, then after a while I scrap it and work on a new, fun idea with a spark of life. I have the luxury of doing that because I don't have deadlines, I don't have contracts. This is a time of freedom for me, and perhaps I'll never publish anything beyond a few short stories here and there, but do you know what? I think that I'll be happy with that. The writing itself, the submitting and the like, it's just a joy. And what are we searching for if not joy?

Sunday, August 10, 2008

Life Comes At You Fast. For Everything Else...

The emergency room bill came from our "Hello-has-our-son-been-abused?" trip.

Full skeletal x-ray to search for old/healing broken bones: $989.00

Other emergency room charges: $ 975.00

Total charges: $1, 964.00

Knowing that Niko didn't have old, unknown breaks? Priceless.

Thursday, August 07, 2008

Anatomy of Niko's Heart

That's a picture of a heart.

Niko was lightly sedated, so he went drowsily ballistic yesterday instead of full-on combat mode. It still took three of us to hold him down, and they couldn't get a great look at his heart. Or a blood pressure, or an EKG. But from what they thought they could see (always reassuring) his function looks fantastic, and there's no blood where blood shouldn't be. Next time they're going to put him under a general anesthesia so that they he's completely out and they can get accurate pictures. I'd been begging them to do this for two years, but what do I know? I'm just his mother.

So Niko's particular problems are: 1)Severe aortic stenosis and 2) acute pulmonary blockages. Actually, I should say that those WERE Niko's particular problems. They have improved dramatically as he's gotten older. Still concerns, yes. Severe and acute? Not anymore. But we're keeping an eye on them, hence these mark-of-the-beast cardiology trips.

Let me show you what I'm talking about! I so ripped this off from the doctor's office yesterday. Teach them to leave me in a room alone. :P

I colored the aorta red. It's the largest artery in the human body, and sends blood from the heart to wherever it needs to go. "Stenosis" is basically a narrowing in the artery. So you can have your aorta with a little section of narrowing, and that would be aortic stenosis. Got it? Except in Niko's case, the entire aorta is narrow. They considered surgery when he was younger, but they didn't have a surgery to basically replace the entire aorta, is my understanding. But as he grew, the aorta grew as well. Lots and lots of prayer and blessings, I 'll tell you that. Niko was a pretty severe case beforehand. He'd lie down on the floor in exhaustion and his lips would turn blue.

I circled the pulmonary arteries with purple marker. Niko had a blockage in each artery, so the blood could make it through, but just barely. And now? They mysteriously disappeared. Again, I point to prayer and blessings.

I have a short summary of some of his medical problems in the entry titled "Blood Belongs In The Body". You can find it by using Blog Search in the top left hand corner.

Of course we're still concerned for Niko's health. We keep a great eye on him. But it's night and day from what it used to be, and that's what I want to stress for the people who are reading and struggling with their own child's diagnosis, especially if it's recent. The first year or two is so difficult! It's so very hard, and you're overwhelmed and simply can't wrap your mind around the things that doctors are telling you. But please believe me when I say that it gets better. When you finally get your feet under you, you'll hit the ground running. I never thought that Niko could have the life that he has. He's happy and active, he runs and plays and doesn't take any medicine at all. He eats, he sleeps all night. He has friends.

You are all going to be okay. And life will be beautiful again, only better because you'll have this amazing little mischievous creature. It'll be the way that it was always meant to be, and most importantly, you'll all be happy. :)

I know that sounds hokey, but it's true. Humans are amazing and we're adaptable, and one day we look back at something that we thought would kill us, only to find that it has become a mere bump in the road.

Tuesday, August 05, 2008

You're Awful. I love you!

I have my days all confused. I took Luke to work at 5:30 AM so that I could have the car for Niko's sedated echo...which is tomorrow. Whoops. So I get to dread it for another day. The sedation that they do here is really light, and it still takes all of my strength to hold Sweet Boy down while they try and get a good look at his heart. Everything in this town seems subpar. Luke is starting to look for a new job elsewhere, and all I can do is cheer. I hate this town, I hate this town, I hate this town.

So today is a pretty laid back day, and we've needed one. We made cookies that Niko won't touch, because he doesn't eat sweet things, and I'm writing a letter to the regional superintendent that I didn't get to speak to yesterday. I said, "The school police told me to speak to Mr. So-and-so regarding the abuse of my child in school" and I got routed around to everybody but him. I will be polite but firm. "This is going on beneath you. It is your responsibility and you need to know. Also, you need to be accessible to parents who need you." All of these people not being held accountable? Not taking responsibility? It boggles my mind. My mama taught me better than that. Why didn't theirs?

In other news, I ate clam chowder this morning with a fork because Niko has squirreled all of our spoons away somewhere. Nina says the best wide-eyed "Wow!" Luke's MIA because it's his busy season, but he calls home a couple of times just to check in, and I have 19 writing pieces out. I have more than exceeded my goal, and I'm really happy with that! My life is much fuller now that I'm writing.

My friend challenged me to write a "humorous horror". That's...a stretch. But I'm all about the challenge, so bring it on. She and I are equally competitive and supportive, and she's the fire under my feet. Her obscenity laden "congratulations" letter cracked me up and spurned me on. I'm so going to win.

My favorite song right now? "Love Me Dead" by Ludo. The Labyrinth references and the fact that he looks like my husband only accentuates the sweetness. This video is awesome.

Monday, August 04, 2008

Dance With Me.

The assistant to the superintendent admitted that somewhere along the way, they dropped the ball. It's a district matter now. She assures me, no, she PROMISES me that there will be a thorough investigation. She says it makes her sick to her stomach to think that maybe Niko was sent back to an abusive environment. My job here is almost done.

Scroll down to the playlist, and press The New Radicals "You Get What You Give." You and I, we're going to dance.

Sunday, August 03, 2008

Right or Wrong?

I was a little too angry to write before now, but a few days of cooling off and I'm human again. I spoke to the principal on Friday, and received conflicting reports from him. He said that yes, there was disciplinary action taken against the teacher last year. When I asked for a report about that, he said that he couldn't tell me because of confidentiality. I said, "There were abuse allegations involving MY SON and you can't let me read the report because of confidentiality? It's my son! He's part of this! I had the right to be informed so that I have all of the information necessary to decide whether or not he would be in that same classroom. And I would have chosen to pull him from that class!" Then the principal assured me that the disciplinary action was for things BEFORE Niko, that Niko wasn't involved in it so he couldn't give me information on it. So, great. He's saying that the teacher was being disciplined for something besides yanking Niko around? That inspires confidence. And suspicion.

So this is what it comes down to. Either A) the investigation and disciplinary action last year DID involve my son, and the principal is lying about it for whatever reason, or B) he's not giving me a report because there was no investigation done concerning Niko. Either way, this is completely unacceptable. More than that, this is wrong.

This whole thing, it's really wearing me down. Which is the plan, I'm afraid. I have had to break it into little tiny steps, to prayerfully make my decisions. And this is the way that I'm looking at it now: is it right or wrong to follow through? Is it right or wrong to take Niko to the hospital? Right or wrong to file the formal complaint? Right or wrong to call the regional superintendent tomorrow? When I look at it that way, it isn't as hard. It's easy. It's right. Right to do these things, right to get this out into the open. If there is abuse reported and they're not looking into it, then there are dark things going on in these schools, and it needs to be brought out into the light.