Thursday, May 28, 2009

Today is a New Day.

So thanks for letting me rant and rave and wave my arms around in the air last night. I was hurting, and I was angry. I thought about deleting my post afterward, but decided against it because it's true. It's how I feel, and I don't want to sanitize my words, even if it might make other people more comfortable. I'm always reading about some gallant woman without legs, or some terminally ill child, and everybody is full of smiles all of the time. You know that isn't the case. You know there are nights where Mom's head is buried in her hands and she's just sobbing her heart out. I think we need to hear about that, too, because it's important. It's life.

Anyway, today I'm a little more clear headed, and not as overwhelmed by emotion. I no longer think that monsters are attracted to hospital so that they can prey on innocent, ill children. But I do think that I need to file a report about the IV needle nurse.

In other news, today I have not one, not two, but seven different people stopping by at interspersed times. I need to pull myself together for it. And pick up Niko's washer and dryer ads off of the floor. One day when we're fabulously wealthy, we'll buy that boy a front loader, thereby making all of his dreams come true.

Wednesday, May 27, 2009

This is Exactly Why We Hate Hospitals!

I am absolutely livid. Our heart echo and CT scan were scheduled for 9:00 this morning. What time did we all get home? Yeah. 4:30.

The plan was that we'd zip in, they'd put Niko under general anesthesia, and all would be well. I even called, not once, but twice to make sure that was what was going to happen. And did it?

No, not at all. We show up and they're like, "Okay, we're going to put this nasal anesthesia up his nose and..." And what? I was so angry that I was near tears. Niko started crying the second that we got into the office, and Nina was upset because Niko was upset. I said no. I said he's too big for a nasal, and it's too traumatizing, as we discovered the last three or four times that they used it. I said that we had talked about this, that the last cardiologist had written in his file that he was to be put under. Again, I brought up the last three years and that, not once, has their dopey little weak anesthesia been successful. The nurse fled, and I was wiping at Niko's, Nina's, and my eyes with a tissue. Were they flippin' serious?!

Another nurse and the doctor came in. He listened to Niko's heart (through his frantic screams) and says, "Yes, he'll definitely need to be sedated." (Really?!) He apologized on behalf of the whole office for the miscommunication. He remembered me from shouting the place down six months ago...when they wanted to give Niko a nasal. Hey, nobody listens to me, but at least I'm consistent.

So they're going to try and get us into the hospital that day. Niko hasn't eaten, Nina's in pieces, and I'm trying to hold them together. We sit in a supply room for and hour and a half ("I'm sorry, kids." "Let's sing songs!" "Don't touch that, please." "Kill me now!") and finally go in and get everybody registered. While I'm doing the paperwork, people are cooing at Nina, and glaring at my disturbing, sobbing son. I want to kill them, but I don't. This is to my credit.

At 12:30 we take Niko into surgery prep. He's freaking out INSANELY by now, but we have a caring nurse and an arrogant anesthesiologist, who, after Niko finally falls into an exhausted sleep, has me wake him up so that we can give him some type of kiddie Valium, so that he'll go back to sleep before they use gas on him. This man is loud, bossy, and pushy. I finally tell him to back off because he's freaking Niko out. Then I worry because they spend almost an hour doing the echo and CT scan instead of the 15 minutes they told me. I worry if I have said something to put Niko in a bad position. Then I think that I'm paranoid. Then I think back to the things that I have seen, and I start to worry again.

When they finally call us to recovery, Niko is, of course, wailing. He's exhausted. He's starving. He's confused and extremely frightened, and he's in pain. The recovery nurse is all, "Use your words," and I finally say, "He's nonverbal. He's significantly delayed. It's all in that paper." She never received the report. So here are the women that are helping him come to, and they don't even know his basic information. He's trying to yank out his IV, and another nurse says, "I'll take it out! Wait, wait!" Then she gets extremely firm, grabs his frickin' IV hand, and yanks on it!!! "NO," she says meanly. I mean, she is so frustrated. "DON'T DO THAT!" And Niko starts screaming like the demons of Hell are on his tail.

I'm standing at the foot of his bed. I mean, I'm right there, and she has her hand on his needle, and is yanking his arm out of its socket. I say, "Hey." That's all I say, this cool, "Hey," but I can feel my face, and I can feel the expression that is on it, and I'm realizing that I'm being so incredibly calm because otherwise, I would rip this woman apart. She looks at me, and the kinder nurse kind of gives her a "calm down" look. She would dare hurt my son? In front of me? By grabbing his IV hand? I saw her fingers go down on that needle. That area of his hand is so incredibly swollen now. I could just...there aren't words. There are, but I'm trying not to think of them. I'm trying to be gracious and believe in humanity. Then she turns to a crying Nina and says, "Did your brother scare you? Can he not control himself, and he's scaring you? Stop crying, you're scaring your sister!"

We bail. I grab my children to me and I take them from this bumbling trial of errors. We drive home, and I tuck them both into bed. I call Luke and I yell a little bit, and I cry a little bit, and then I just feel like giving up. What is it about my little boy? Why do people become so terrible around him? How could people treat children this way?

Then I think, "It's always going to be this way." It is. He's always being laughed at, he's always being tormented. He's always being treated like he's something subpar. I'm not always going to be there to defend him. And I am a very kind woman. I'm basically peaceful, and always try to give others the benefit of a doubt. But I'm tired of the meanness. There's so much pettiness and spite that has been coming through lately. I'm just weary of it. It hurts my heart, so much.

I suppose that's why I wanted to write it here. Most of you know what this feels like, in one way or another. It's just hard, and I'm tired. Things will be better tomorrow, I'm sure.

Tuesday, May 26, 2009

More Tests! Then We're Through!

The good news is that Niko isn't autistic. The bad news is that his "alleged" abuse at his old school most likely set him back to where he is now. We're going to start an aggressive treatment plan as soon as everybody can put their heads together, and find the help that has been so elusive thus far.

Tomorrow is his sedated heart echo. I'm thrilled because they're going to honest-to-goodness knock that boy out, instead of acting all surprised that he fights like he does. Really? After three years, the doctors are going to listen to me? That's the thing: they act like I don't know what I'm talking about. Believe me, people, I know my son. When I say that he's going to fight, I mean that it will take three of us to hold him down, and the pictures will still be unclear. I wish the doctors would just take a second and realize that I'm their most valuable resource when it comes to Niko. As we would have said in eighth grade, "Like, duh."

I'm going to take the double stroller, because I have Nina and Luke can't get off of work. Babysitters just haven't been working out for us, lately, and it's never a problem to find a nurse who wants to hold a sweet, little girl. Or Nina the Wicked, as she becomes at times.

Anyway, wish us luck! And I sold three poems today to a horror anthology. I'm in there with a few of my friends, and that makes me happy. I wrote about it at, which I update about every day, or every other day. It's easier to talk about writing than it sometimes is to report bad news, or whatnot. And today I posted a picture, so yay, there I am.

Okay! Later!

Wednesday, May 13, 2009


Yesterday was fantastic, but very, very busy. First I did my "Hello, I'm An Author!" presentation at the school (I wrote about it here), and then I worked on my essay so that I had something to bring to my writer's group. We met outside under a night sky with palm trees, and had some pretty feisty writing discussions. I didn't finish my essay, but they gave me some great insights into where I was heading with it, and it was very helpful. Then they took off to a 10:55 showing of Star Trek, but I'm both cheap and exhausted, so I came home. It was a great day, but I felt like I hit the ground running.

This morning I *should* be doing laundry and packing for tomorrow, since we're flying to Boise to see a specialist for Niko. But I'm lollygagging around. I'm checking my email. I'm working on my blog. I'm spending time with Nina, and preparing for Niko's IEP in a few hours. And I realize a few things:

1) Breathing feels nice. I have been much too stressed out as of late

2) Niko's IEP this year is, as my father would put it, "ain't no thing."

The stress! The preparation! The lipstick as war paint! I don't feel that way this year. I feel like his teacher really cares, and wants good things for him. I also have 4000 other things on my plate (getting those signing numbers to my friend! Getting all of us ready! Finding a babysitter for Nina because the first two fell through...otherwise she'll be at the IEP, as well) so this can just take a number. I'm really familiar with them by now, so it isn't daunting. That's a very good sign.

And A Cup of Comfort for Parents of Children with Special Needs officially comes out today. I'd really like to pop by a bookstore with my family and buy a copy...just because I can. :)

All right! See you guys later!

Monday, May 11, 2009


My friend in church yesterday: Mercedes! You're glowing!

Me (eyebrow raised skeptically): Really?

Friend: No. You looked exhausted.

Mother's day was fun. Luke made an absolutely fantastic breakfast, and since his meetings were canceled, he readied the kids without any help from me whatsoever. Yay for Mother's Day! It's nice for women to be recognized for being amazing, nurturing creatures, whether we're mothers or not. The primary kids sang and Niko tried to sit on the Bishopric's lap. And played with the microphone. And pointed at me again and again. It made me smile.

I've been asked to speak to a school tomorrow, as a writer. I'm so excited! I'm talking to the older kids for about 45 minutes and the younger kids for about 15. I'm talking about achieving your dreams, and it's so crazy for me! It's exciting. It makes me feel good that maybe I can be a good example. We're at a good place in our lives right now where I actually can take the time to write, and it's healthy for the entire family. Luke supports it, and jokingly says that he can't wait until I'm rich and famous and he can quit his job and just manage our money. That's a good guy, right there. He doesn't resent the time that it takes. He doesn't resent me hogging the computer.

This morning Nina helped bombard Niko awake. She was all, "Mama, Mama, Mama," and Niko rolled over, eyes half masted, and said in this scratchy voice, "Mama?" I said, "Niko, did you just say 'Mama'?" And he said again, "Mama?" Then he woke up more fully, and the moment was gone. But I heard his voice. I heard words. That's two "Mom"s and a "Mama" in the last two months! I have never heard so much out of him. Never. It gives me hope. It brings me joy. :)

On Thursday we fly up to see the specialist, and hopefully determine whether or not Niko is also autistic. It will be nice to know, either way. Of course I'm dreading the actual appointment, but what can we do about it? We just have to roll with it, and exude calmness for Niko. I'm also looking forward to seeing Luke's parents and my friend Pyper. There's a lot of sweet with the bitter, I've noticed.

Tuesday, May 05, 2009

V is for Victory!

So did Niko fall apart? Yes, he did. But the new pediatrician was so kind and patient, that Niko eventually calmed. Do you hear that? He calmed! Niko curled up into a miserable little ball on my lap while the doctor checked out Nina, and I was flabbergasted. That's a good sign.

I admit that was a little difficult when he was asking questions. "Does Niko eat with a spoon? Does he make any attempts at speech? Does he get himself dressed in the morning?" Nina is officially more advanced than my son. At the same time, they are both learning so much and making so much progress. It isn't a competition, and we don't treat it as such.

My kids make me very happy. :)

So I'm trying to be productive today! Returning emails and bios and things that other people have requested. It's...practically impossible. Nina is clambering on my lap, demanding to read "That's Not My Tractor" for the kabillionth time. Tonight I'm meeting my friend at a chocolate bar to discuss writing. It'll be a sweet reward.

Monday, May 04, 2009

Rally The Troops! I'm Going In!

I'm taking the kidlets to their new pediatrician today. Emotion #1: Dread. I know there is going to be insane amounts of tantruming. The good news is that Luke can take a few hours off, so he's coming with me. Emotion #2: Relief. Originally I was going to take them by myself, and I was sooooo not looking forward to that! Emotions #3, #4, and #5: Fear, Despair, Desperately Needing A Coke. After their appointment, we're going to get all wild and crazy, and get some french fries.

Last night I couldn't sleep. At all. I'm pretty sure it was the intense caffeine in my Excedrin Migraine that I finally took, after having a headache for four days, I kid you not! Anyway, I tried to lie still and not toss around, but after an hour of that, I simply got up. It turned out to be a good thing, because I made headway into a nonfiction essay that I've been working on for a while. It's about working at the sex offender home, and it's tough to write, for several reasons. It's also been difficult to find the correct tone for it. I either sound smart alecky or full of despair, and that's not what I'm going for. But last night I wrote about a page, and it was very spare and honest. I think that might be about right.

So this week is the new pediatrician. Then we fly to Boise to meet with the specialist, and run some tests. Later this month, it's all about the heart, and we'll be doing his echo, EKG, and MRI. Emotions #6 and #7: Resignation and Tempered Hope. But we all go through it, right?


Saturday, May 02, 2009

My Little Katamari

Happy Birthday, Niko! Yesterday he turned six years old. No limbs were snapped like last year (posted here), and we had a pretty laid back day. Luke made this fantastic Katamari Damacy cake. That man has talent.

Niko's cuddled up with me right now, and we're listening to "All My Little Words". What a sweet boy. Nina managed to get a black eye on the corner of the dishwasher, and that's been the only drama of the day. All in all, it's a nice Saturday. Hope all is well in your corner of the world!