Wednesday, December 30, 2009

Terribly Lucky

I wrote a little Williams Syndrome post over at my writing blog.  Quite honestly?  I was touched that so many people were so kind and supportive about the post.  Sometimes I feel like we are so incredibly isolated, but that isn't the case.  How terribly lucky we are.

You can read my thoughts HERE.

Thursday, December 17, 2009

You Betrayed Us.


A lot to report.  Niko lost his first tooth. He looks at me with love and kisses me constantly.  Niko handed Nina her milk, and I said, "What a nice big brother!" Nina said, "Thank you, Big Brother," and I nearly cried, it was so sweet. I entered a blog contest and won three pounds of chocolate!  You can read my entry in the comment section here.

Today was Niko's IEP. It was, without a doubt, one of the worst experiences that I have undergone.  And you know what?  There are a lot of rotten experiences!  The question was whether or not Niko would do well in an autism class, mostly because he responds well to ABA reinforcement.  It's difficult for his wonderful teacher to use it as much as she'd like because she has other students in the class to worry about. So is this something we should do?

Originally I said that maybe it's something we should try. But I met with the geneticist again, brought it up, and both she and the other doctor said no.  Although he has autistic behaviors, he isn't autistic. He'd miss out on the social and verbal stimulation that he needed. He'd pick up on negative behaviors. Autism classrooms are often used for a catch-all, etc etc.  I wrote the school and said that I'd rather not put him in the classroom.  I got a note home saying that we'd discuss placement at today's IEP.

I brought my friend Natalie, who studies this sort of thing at school and can keep a clearer head than I can. And it's a good thing, too, because during the grueling THREE HOUR IEP (holding Nina on my lap) Natalie came in really handy.  This wasn't an IEP, it was a war. They had made up their minds that Niko should be in an autistic classroom, and after some intense questioning by Natalie (while I'm reeling with my hands up in self defense) we find out that the school doesn't even HAVE an autistic classroom.  They were planning to ship him to another school, and never even mentioned the fact! Less than an hour earlier I had them write in his IEP that one of the challenges we faced was that Niko was shipped from school to school.  This is a boy that needs consistency. Nobody sees his progress because he isn't in one place long enough for them to get a picture of how far he's come.  Sure, he's a challenge.  I'm his mother; I know.  But he has come so far!  He isn't biting anymore.  His tantrums are less often and less severe.  He's following directions.  He's minding more. But they can't see this, can they?

I cried twice.  They weren't trying to convince me, they said, but I told them that is certainly how it felt.  "You're being pushy. I feel like you're pushing me," I said.  "You really are," Natalie informed them.  Seriously, worth her weight in gold, that one.  There was a point where they weren't even talking to me anymore. I had faded away. I think Natalie even made one of his IEP goals. 

It felt ugly to me. I felt ambushed and betrayed. I thought it would be difficult, which was why I brought Natalie, but I had no idea that my opinion would mean nothing.  They said these were just recommendations, but it was clear that I would be negligent if I didn't follow the recommendations.  Luke says that it's pretty clear to him: the geneticist, who knows more about Williams Syndrome than anybody else that we have ever met, said that she's against the idea.  That should be enough. The fact that I said no and cited this as a reason should also be enough, but it wasn't. My opinion was completely brushed off.  I couldn't believe it.

Of course Luke and I are going to discuss it, but I'm pretty sure we've already come to the decision. Although I think a few people in there, like his teacher, are genuinely thinking about Niko, I think others are more concerned about being right, or getting the challenging boy out of the way. I'm not only angry (okay, enraged) but I'm hurt.  I feel betrayed.  These are people who are supposed to look out for my son, but instead they're shoving him aside. Who has his best interest at heart?  I do. He is my child. I make the decisions for him, not them. They presented me with an illogical, contradictory argument that raised red flags. I also feel that they should have been upfront about switching schools, especially since it is such a concern for us. Seeing as Niko has been physically hurt by a teacher before, naturally we're gun-shy about sending him somewhere new, where they have to get to know him again.  And again.  And again and again. 

Somebody told me today to listen to my heart. My heart says it's tired of fighting and hurting.  And yet I realize that it will be like this for the rest of our lives. My job is simply to be up to the challenge. Can I do that? Surely.

Wednesday, November 04, 2009

The Results

My house has gone to seed.  The laundry is stacked, we need to go grocery shopping, and there isn't a clean dish in the house.  Luke and I have been tag-teaming the kids as we get Niko's school pictures taken and go to all of Nina's appointments.  I've been waiting all year for NaNoWriMo, and I'm supposed to be about 8,000 words into my novel by now.  I have written 168 words so far.

But we're smiling.

I can honestly say that the last few days have been an ordeal.  Most of the pressure has been because we've had to keep Nina up for the last two days, and that means an exhausted toddler and two very tired and grumpy parents.  Yesterday was her MRI, and today was her EEG.  They flashed lights and tried to induce a seizure so that they could study her brain waves more accurately.  Sweet baby girl didn't seize.  But the nurse told me that I didn't look so good.

"Migraine," I said.  The noise and flashing lights nearly did me in.  Nina waved her starfish hands in the air and thought it was all about having a good time.

The results (for both the MRI and EEG) were normal.  We're going to keep her on seizure meds for two more months and then reassess.  I have meetings tonight and tomorrow, but hopefully after a good night's sleep, I can make a dent in the housework.  My goal is to have it clean by Friday so that the weekend can be all about recuperation.

Last night a girl in our ward brought dinner over.  Not only was it delicious, and saved Luke from cooking (I had a meeting last night, as well) but it made us feel cared for.  I realize that when we moved here three years ago, we went through everything alone.  Now we're supported on all sides, and it makes a world of difference. We realize how lucky we are.  :)

Tuesday, November 03, 2009

You Guys Are The Best! And My Husband Is A Hero.

It's true.  Thanks for letting me rant and rave.  Thanks for your comments and your telephone calls.  I can't imagine what it would be like to stomp around and yell all by myself.  It would be extraordinarily lonely.

Last night I was laid flat by (surprise, surprise) a migraine!  It was the worst one that I had had in quite a while; in fact, I wondered if I should go to the hospital because it was reminiscent of the pain that I was feeling with the eclampsia back when Nina was born.  My fantastic husband took over.  "Did you take some painkillers?  Okay.  You're not dying, it's just a headache." He told me that he loved me and sent me to bed.  Then he stayed up with Nina until midnight.  This is the man that is asleep by ten every evening because he gets up at 5:00, and sometimes earlier.  Now he's shambling around all zombie-like, but he's still smiling.  Marrying him was the best decision that I ever made, no doubt.

So we leave in half an hour for the MRI.  Wish us luck!  And when we get back...we get to do it again!  More sleep deprivation for tomorrow's EEG, hooray!  :P

Monday, November 02, 2009

Oh, You Are KIDDING Me!



I decided to get my hair cut on Saturday.  Not only did he cut it too short and choppy, but "choppy" was the word of the day because l-l-l-look at the wound right above my eye!  A tiny thing, sure, but I bled like a demon and there was a second there where I wondered if I had lost my eye.  Sudden, shocking pain in the vicinity of my eye and then a torrent of blood tend to make a woman get a little panicky.  "Oh, look at me, my hands are shaking!" the stylist said.  I, still momentarily blinded by my own blood, couldn't see his shaky hands, the poor dear.  He then chivalrously took a dollar off of my bill.  That was swell.  Did I ever mention my tendency to scar?

But wait, there's more.

So today is Nina's MRI.  I have been dreading it for many reasons.  I have been trained to hate hospitals, for one thing, even though Nina is much more calm than Niko when it comes to medical things.  I'm nervous to see what we're going to find out.  Also, I was worried about the logistics.  Nina's appointment was half an hour away, so I needed to leave by 9:15 at the latest.  Niko's bus comes at 8:10, usually, except that the buses have been breaking down left and right lately.  Which is what I assumed happened today, because the bus was ten minutes late.  20 minutes late.  30 minutes late. Finally I call Transportation and say, "My son's bus is 50 minutes late.  Can you tell me where it is?"  She says, "Oh, there's no school today. It's a staff training day." 

WHAT?!  There's no school?  Oh, you are KIDDING me!  There was no note in Niko's backpack, no newsletter.  Nothing.  Nada.  We have already established that the website doesn't work, so there's no information there.  They sent home a lunch schedule, and today was scheduled to have school lunch. So how on EARTH was I to know?  I'm not the only parent that was sideswiped by this information either, but that's a rant for another day.  What am I supposed to do? 

I call Luke in tears.  He says, "Come pick me up."  I shove both kids in the car, drive across the city, pick up my husband who LEAVES WORK, and we head down to Nina's appointment.  I'm ranting and crying and my head is spinning.  Niko gets anxious when he sees that we're in the medical district, so Luke drops Nina and I off at the center while he just drives around town with Niko.  I'm going to get a time estimate and see if they should hit a store or head home and get us later.

But wait, there's more.

I get into the doctor's office, and he looks at Nina.  "She doesn't look tired," he stays.  Tired?  Huh?  Should she?  He says, "What time did she go to bed last night?"  "8:00."  He lets out an exasperated sigh.  "And what time did she get up?"  "6:30."   He's shaking his head at me and looking extremely irritated.  I'm confused and feeling defensive, not to mention stressed.  Finally I say, "Okay, what's going on?" 

Apparently Nina was supposed to be sleep deprived.  Apparently the guy who scheduled the appointment FORGOT to mention this.  I was supposed to keep her up until midnight and get up her up at 5:30 so that she'd be drowsy.  Apparently I had shirked my duty.

"I never received this information," I said.  It is to my credit that I'm not screaming and knocking the computers over.  "This is news to me."

"Well, we'll give her the oral sedative, but if it doesn't work..."

It doesn't work.  She just gets goofy, not tired.  Luke's still driving around town with Niko, because he doesn't want to abandon us if we need to go home. He's supposed to be at work.  Nina's supposed to be getting her MRI.  Niko's supposed to be at school.  I contemplate asking for my own sedative, but wisely abstain.

Did I mention the fact that tired children happen to have more seizures?  I'm terrified of that. They're not trying to induce one; they just want her to sleep so that she'll be still.

So we're scheduled to play this game again tomorrow, only Nina has to be sleep deprived  (which means that I will be, too.  Oh goody!) and at the center at 7:15 AM.  Which means that Luke has to miss work (again!) to get Niko on his bus.  Then he'll hang around the house until I get back with Nina, and he can go to work again.

But wait, there's more.

Wednesday is our EEG and follow-up.  Nina is supposed to be sleep-deprived (oh, hooray!) because this time they're hoping to induce a seizure!  Luke needs to miss work (again again again!) so that he can get Niko on the bus.

I am losing my mind.  I'm going nuts.  I haven't had a full night's sleep in, what, months? and I'm an emotional wreck.  I cry at least three times a day.  My migraines are hitting at least once or twice a week instead of once a month or so.  I'm dying.

Oh, and did I mention that this month is the month that I'm hoping to work on my newest novel?  It's my reward for surviving.  But I am so stressed and distracted that I haven't been able to write a word on it.  Not a word.  I feel like the biggest failure.  If taking care of my kids and writing are what I'm good at, and I'm doing a lousy job at both of them...

You catch my drift.

The good news is that Luke is taking the kids to visit his family this weekend.  I'll go up briefly, but then I'm coming home to have a night by myself.  I'd like to get the house clean and everything beforehand, and have the weekend be all for me. I want to be selfish.  I'm even thinking of booking a massage, my second one ever.  The first one made me cry (me crying?  What a surprise) when she started working on my hands, because I realized how tired my body really is, and how I neglect myself.  Forget being the mother of a special needs child, because ANY mother knows that if you don't take care of yourself, you can't take care of your kids.  But come on.  How many of us can really do it?  If your child needs you, everything else goes right out the window.  The house, the bills, the family, friends...they all come before us, because we love them.  It doesn't mean that we don't love ourselves, too, but when we're split in 20,000 different directions, it's easy to let ourselves go.  I can always get back to me later.

Gah.  I hate to vent here.  At the same time, I was bursting to come and write on this blog, because I need and desire the outlet.  This is perhaps the one place where I don't feel judged, because the people who read it understand that barely-keeping-my-head-above-water feeling.  Most people do, I think, but we're taught not to show it.  Well, forget that.  I recognize that I need the support.  Let's all tread water together.

Also, this playlist makes me really happy.  The first song was "For Fruits Basket", and for anybody unfamiliar, Fruits Basket is just a super charming, happy anime.  Every time that song comes on, both Luke and I smile.

Monday, October 26, 2009

The Report

The official report just came back from the genetics meeting in September.  I knew what it would say, because hey, I was there, but it's still difficult to read.  Yes, Nikolai has Williams, but his current level of functioning is much lower than is typically present in Williams.  We're going to look for this.  We're going to look for that.  Significant intellectual disability. Specific phobia for loud noises, doctors, and medical facilities. Extreme anxiety.  Lordosis, awkward gait, mild facial asymmetry, etc etc etc.

These are the words that I understand.  There are many more that I need to look up.  So Niko has Williams, but even with Williams, something...extra...is wrong.  We knew this, but it doesn't make it any easier.

Then I gave Nina her seizure medication, and she said, "Thank you, Mama."  For some reason it made me laugh.

Gah!  I just throw my hands in the air today!  I surrender.  I have a fantastic husband and two spectacular kids.  It's almost Halloween.  Sure, I'm grossly over scheduled, behind in housework, and being forced to look at the black and white of my son's syndrome overwhelms me.  But it shouldn't.  He isn't his syndrome.  Nina isn't her medication.  Life is fantastic and glorious, and sometimes I get so tunnel-visioned that I miss it.  Not today, though.  :)

Have a good one, everybody.

Thursday, October 22, 2009

What a week!



(Nina and I playing with the webcam ten minutes ago.  She's waving her little hand off.)

Wow, is all that I can say!  This week was heavy and emotional for the most part, but it was also full of a lot of joy.  Niko had a green smiley yesterday (hooray!) and my dad came down to visit for a few days.  I haven't seen him for a while, and I had missed him very much.  That was joy.

The bad news is Here and, more recently, Here.  My heart goes out to everybody back home.  My heart goes out to Sophie and everybody affected by her loss.  And that's all of us.  I cried when I found out, because it's everything that we fear as a parent.

We're also starting Nina on seizure medication, and hopefully that will help.  It was difficult for me to accept that, because in my mind, medication means that it will be a life-long problem.  Of course that isn't the case, and the doctor pointed out that we'll reassess in three months after all of the workups come back.  But no matter what happens, I know that we can handle it because we love our children, and we have a lot of support.  And for that, I'd like to thank you.  Sometimes the good wishes seem palpable.

In other news, five agents are currently looking at my novel.  It buoys my spirits.  And November is National Novel Writing Month.  This will be my fourth year participating, and my goal is to write a 50,000 word novel by the end of the month.  This is my reward for trying to live this year to the fullest.  I'm extremely excited!

Also, I have a rather strange poem up Here.  It makes me happy. 

Have a good day, everybody!

Wednesday, October 07, 2009

I Am Just Not Brave

People mean well.  They say how brave and calm and wonderful my husband and I am.  This makes me feel like a complete charlatan because I am not brave and calm and wonderful.  My husband is truly stalwart, but I'm fragile and nervous and constantly looking over my shoulder.  School is, once again, not going well for Niko.  He had a week of the coveted green smilies, and then went bonkers somehow.  They keep switching aids, and acting surprised when he doesn't respond well to that.  Luke would like to go and observe, but he has to make an appointment with Dr. Jerkenstein before he does.  Luke, who is brave and calm and wonderful, is going to go by himself because I'm certain that I would knock Dr. Jerkenstein to the ground and insist on knowing why he behaves so abominably.  Tell me what kind of example that is.

Niko has been home for nearly an hour, and I can't make myself look inside of his backpack to see how his day went.  I just don't want to see.

Nina and I went to the store today, and we had a good time together.  She like to wear her pretty princess shoes that Ali and Jeff gave her, and she swings a tiny red purse over her shoulder.  Today she brought me my heels and MY red purse, and who was I to disappoint her?  Off we went.  The fact that she imitates me so much is both horrifying and comforting.  I know that I behave a lot better because of it.  You know what mommies do?  They go shopping and smile.  They kiss their children on the head.  They suck it up and look in their little boy's backpack, for crying out loud.  I'll go do that.

Writing is going well!  I just finished a beautiful literary short story, and I'm quite pleased with it.  It's very different from what I usually write, but it has it's own kind of slow magic.  After getting the story down, it's time to polish.  I'm going to submit it to a market at the end of the month.  I talk a little about that HERE.

Saturday, October 03, 2009

Newsworthy

Where have I been?  I can tell you in two links.

  HERE and HERE.

The first is the story of my friend's son.  He's six years old, special needs, and used to be in Niko's class.  I've been going with her to her meetings as both a witness and emotional support.

The second has been all over the Internet the last few days.  As a writer, I'm absolutely appalled, but grateful because it was my super awesome magazine that caught it.

I've managed to snuggle my kids and grab a meal every now and then, and that's about it.  Have a good day, all.  :)

Thursday, September 24, 2009

Cherishing

Niko crawled into my arms and fell asleep tonight. I wrapped him in a blanket and I couldn't stop kissing his fuzzy head. I never get to hold him like this anymore. I turned to Luke and told him that I was cherishing this moment.

Meanwhile, Nina had crawled into a shoebox and was calling it her "tub". "Nina tub. Nina tub." We were all here. We were all safe. We were in the same room, breathing in and out at the same time. I don't want to say that I have been hit with the fragility of life, because I have always been painfully aware of it. But I appreciated our togetherness and our wholeness. It was a beautiful moment.

Monday, September 14, 2009

Green Smileys




So Niko's teacher sends home a progress report every day. There's either the dreaded Red Frowny, Yellow Neutral, or Green Smiley. Niko consistently gets the Yellow Neutral, which I accept. Lots of tears, poor transitioning, hitting. I get it.


But today? Ah, today Niko pranced off the bus with the coveted Green Smiley. A Green Smiley!! I called Luke. I called my parents. I snuggled my boy. Green Smileys open doors to greatness, so I hear.


:D

Friday, September 11, 2009

Sleeping



Niko is six, and he goes to bed at 10:00, 11:00, or even later. We've done the calming nighttime routine. It didn't work. It's never worked. We did the bath before bed, reading stories, snuggling, songs, prayers...the whole shebang. He wouldn't even yawn. He'd pop right out of bed, completely awake. Many nights we'd drag him off to bed with us because it was 10:30 and we were exhausted. He'd only seem to lie down if we were there to forcibly make him. After he was asleep, we'd carry him back to bed. He'd wake up and crawl in with us. Once, twice, three times. It didn't matter how many times we carried him back to bed, he'd crawl in again. And then he'd kick all night. Move around. He's the only other person I've ever met who has nights exactly like I do.


Dr. Morris said that this is a common Williams problem and that we should supplement his body with over the counter Melatonin. Make sure it's a pharmaceutical Melatonin, and doesn't have the word "bovine" on there. Apparently his body doesn't produce the amount that he needs (if any) and that's why he has always had such a horrible time sleeping! His body just doesn't know that it's time to wind down. So we followed her advice...that very night, in fact. We crush it up and slip it surreptitiously into his milk half an hour before bedtime.


For the last three nights, Niko has fallen asleep at either 8:30 or 9:00. He sleeps through the night (except for a quick jaunt around the house last night at 2:30, but the neighbors were uncommonly loud, I must admit) and he wakes up happy. He plays before going to school. He's less irritable and seems to have a longer attention span.


Also, Luke and I put our kids down and then we actually have...time. Time to watch a movie, time to write (time to write! Yay!), time to hold hands and act like a real couple. We haven't had this time for the last six years. I knew that some parents put their small children down and did things like writing letters. Making cards. Crafting, reading, taking a bath uninterrupted. I just never thought this would be us. :)


I wish that I had learned this earlier. I simply never knew.

Wednesday, September 09, 2009

The Specialist



First off, I want to say thanks for all of your well wishes. I really appreciate that. I don't think you can know how much it means. :)

So! News! First off, I need to tell you that my son has out-of-this-world anxiety when it comes to anything medical. He has been through more procedures than I can even knew existed, and he just falls apart. But he did so well at this monster, four hour long appointment! I'm so proud of him. And I'm grateful to the staff for being as patient and all around awesome as they were.

But the highlights are: they think they can help him sleep. (He's six years old and doesn't wind down until 10:00 or 11:00 pm, no joke. Then he sleeps restlessly and crawls into bed with us two or three times a night. Apparently this sleep behavior is common for Williams. I didn't know this; I just thought that we were lame parents. Rock on!) His feet and legs are stiffer than they should be, but his arms are good. The muscles on the left side of his face aren't as active as the right side, and his tongue might not be working like it should. They'd like to sedate him and take an MRI of his brain. They'd like to test his kidney function and his calcium level. (His kidneys had started to fail when he was younger, and his calcium level was way too high. This has all been remedied, but we still keep an eye on it.) They diagnosed him with ADD...which should surprise no one, but he'd never been diagnosed before. They also took my blood and my husband's to check for inverted genes. They measured his fingers and features. They checked the coarseness of his hair. They have recommendations, and I have a direction. I couldn't be more pleased.

So more tests coming up, and then we'll know more. In the meantime, this specialist took four hours to discover more about my little boy than anybody else had in six years. I couldn't be happier.

Thursday, August 27, 2009

The Universe Tilts Sharply Part II

I find Niko's teacher. I walk up and say, "Hello, I'm Mercedes. I'm Niko's mother." I hand her the introductory scrapbook that I made, and also a thick binder on Williams Syndrome that my friend Natalie has put together for her. The teacher's face lights up. "Oh, thank you!" she says. "I've never heard of Williams, and I was trying to find information on it last night." She says that in all of her 30 years, nobody has ever done anything like this for her. She's southern. She seems very kind.

I explain some of the Niko highlights quickly, warning about the head-bonking and telling her how to calm him down. The buses pull in, and he refuses to get off. He's clinging to the doors. His teacher runs over to him, picks him up, lays his head down on her shoulder and hugs him. He's almost as big as she is. He wraps his arms around her, and I'm glad that I'm wearing my dark glasses because I'm crying again. I realize that I have an advocate. I realize again how extremely tired I am.

I turn and leave them, going back to my father and Nina. They are holding hands and watching us quietly.

We come home and work on the house. I'm actually smiling. I keep telling Dad how relieved I am after actually meeting her. Dad is playing with Nina before he starts cleaning our carpets. And then the phone rings.

It's a woman who works in Genetics. I had written the Lili Claire Foundation a heartbreakingly/pathetically desperate letter just the day before. I told them about Niko, that he's fallen through the cracks, that he's shuffled from school to school like he doesn't even matter. I told them that he doesn't speak, and that he's regressed dramatically from where he even was as a three year old. I told them about the abuse allegations against his teacher, and that's when he started to slide. I told them that I needed help and if they could just point me in the right direction, I would be so grateful. That's the thing; I feel like we've exhausted every resource. It's a bunch of dead ends. I don't mind doing it myself, because we've been doing it ourselves this whole time, but I don't know what else to do. I need somebody to show me where to go.

I feel like I've failed my son. I feel like moving to this city has done nothing but hurt him, and the guilt of that is crushing. It's been a good move financially, but is the suffering worth it? My son has suffered. He's suffering now, and I can hardly live with myself knowing that I don't have the capacity and resources to make it stop. And where is my daughter in all of this? I'm shredding myself trying to keep them both happy, both loved, while Luke works hard for us. It isn't working. We decided that perhaps we needed to move in order to save Niko. The family is more important than anything else, and if it means selling the house, if it means uprooting again, we'll do whatever it takes. And there's a whole new source of stress. Finding a new job? Finding medical care? New schools? Selling our home in this economy? Getting our children used to a new place all over again? Going through the "This is our son, these are his needs" song and dance routine at church again? He's finally fully accepted there. They are so kind, but it took two years. My stomach hurts just thinking about the magnitude of it all.

But where was I? Oh yes. The phone rang.

She had read my letter and discussed it with Colleen Morris, who is a geneticist and one of the foremost authorities on Williams Syndrome. They want to meet with Niko. I thought we'd have to wait months and months to get an appointment, but they want to meet him in two weeks, and have him take part in a research project. They asked for a copy of all of his medical records. She asked about his heart, about his calcium levels, and it was so bizarre to have somebody ask about things that nobody really knows about. "Yes, he has pulmonary stenosis. Yes, aortic stenosis. Yes, beta blockers and he had hypercalcemia. Yes."

She spoke my language. I was no longer alone.

She said that it would be a lengthy appointment, and they'd like to run tests. Take pictures. They know exactly what to look for. They know much more about the syndrome than I do. When I warned her that Niko would be anxious, she was very calming and said that they were familiar with Williams behavior, and there were girls there who would play with him.

She's not afraid of my son. I've been trained to think that everybody is afraid of my son.

Then she says, "This is a very important part. Since this is for research, all of these tests are absolutely free to you."

I thought that my legs were going to give out. I actually had to sit down. I didn't know what to say. When I could finally speak, I just managed to say "Thank you." Thank you seems so inadequate. How do you say thank you to somebody who might have just changed your life? Because that's what this is. This is life changing information. These are life changing tests. It's a lifeline. It's the direction that I needed. It lets us stay here without guilt. It gives us a chance to have hope again.

Somebody told me that it has already been life changing, simply because my outlook has changed so dramatically. Monday was the culmination of three months of misery. I had hit my breaking point and was very nearly broken. And then on Tuesday, miracles occurred. Two of them: Niko's kind teacher and this life-altering phone call. How did we get to be so lucky? How did we get to be so blessed?

The Universe Tilts Sharply Part I

I can tell you already that this post needs to be written in two parts. It's extremely long. It's emotionally draining. We'll begin with part 1: Niko's First Day of School.

So he was transferred, yet again, to another school, because his last school doesn't have the self contained first grade program that he needs. This is his fifth school in the last three years, including two different summer schools. New teacher, new staff, new bus drivers, the whole deal. So we did that whole thing. "Yay, Niko, you get to ride the bus! Yay, you get to meet a new teacher!" He's so incredibly anxious, and we tried to get him used to it beforehand. "We're buying you new shoes for school! We're buying new clothes for school!" We're also looking over his IEP, and putting together an introductory scrapbook for the teacher, and crying out eyes out at night in nervous exhaustion and dread, and everything else that we do right before school. But in front of Niko, we focus on the positive. You know how it goes.

My father comes down to visit. Truth be told, he's come down about every other weekend because I have just been at the breaking point. Dad cleans my floors and fixes broken locks around the house. He was here for Niko's last emergency room visit. He was here for all of this.

The bus pulls up on Monday, and Niko climbs on with very little drama. Hooray! All of our preparation has worked! The bus driver belts him in, and we tell Niko that we'll be there when he gets off of the bus. I still haven't met his teacher, and there has been zero communication about the school. We barely found out where he was going, for crying out loud.

So Dad, Nina, and I hop in the car. We drive over to the school and beat the bus. We look for his teacher, but Niko isn't on any of the rolls that we see. We stand by the buses, figuring that we'll meet his teacher that way.

His bus eventually pulls up, and he comes off of it calmly. I'm so proud of him! I ask around for his teacher, but nobody knows. We're sent to the office. Niko takes one step inside, thinks it's a doctor's office, and flips out. My father, bless his heart, picks him up and carries him outside, where he tries to calm him down for 45 minutes while I'm fighting with everybody inside the office. Fighting. That's how it felt. They have no record of him, no paperwork saying that we should be there. IEP? The person I'm talking to doesn't speak enough English, so I'm waiting for somebody else to come help me. There's a huge line. Niko's screaming outside. Nina's holding my hand and waiting patiently.

Part of the problem is that I should have registered earlier, they said. Friday was the last day. I told them that I didn't know anything about registration. I told them that I looked up their website online, and it was dead. The links didn't work. It hadn't been updated since late 2008. I said that I looked for information about an open house, about registering, about meeting the teacher. I said that I looked to see whether or not the school had uniforms. I looked to see about school lunch, and whether or not they served breakfast. This information was not to be had. I said that they didn't understand the preparation that went into everything, that we spent weeks gearing Niko up for school. I told them that he was going to be scared of school now, that he wouldn't get on the bus anymore. I told them that, believe me, if there was something that I could have done to avoid this problem, I would have done it. I don't say that I knock myself out doing it. I don't tell them that I wake up about 20 times a night, worrying about something that I might have missed, that I'm worried they'll lose vital paperwork, that there's something more that I should be doing.

She told me that all the information that I needed was in the newsletter that they sent home. Everybody in the school district got this newsletter.

"I didn't get the newsletter," I said.

Oh. Maybe if I had gone to the website, then...

Didn't she understand what I just told her? I did go to the website. There was no information there. This could have gone on for hours, but I finally held up my hand and said, Please. Tell me where we go from here. Can I register him now?

Paperwork was missing. It couldn't be found. This is exactly one of the things that I feared, and I fear it because it happens to us all of the time. I ran all over town and finally got copies of everything that they needed. Dad and I took the kids home. My father called my mom and said that all of the kids were crying. He meant Niko, Nina, and I.

So Tuesday was Niko's Do-Over. His second day of school. I said, "Niko! Let's get ready for school!" and he cried. The bus came and he collapsed to the ground, screaming. I cursed everybody silently. I hated them all. I tried not to cry and told him that it would be all right, and today would be much different, and I would meet him there. He existed today. Whether or not they had all of his paperwork, the woman at the office assured me that she could find enough to get him in. He pressed his face to the bus window and cried. I promised that we'd meet him there, just like yesterday, only better. I put on my dark glasses (to hide my puffy eyes) and what my father calls my "Dita Von Teese" lipstick. I armored up. I went over to face them again, determined to work everything out by my sheer force of will.

And then everything changed.

Saturday, August 22, 2009

I'm Big Brother. And an Essay.

I was talking with my friend today, and we decided that I should actually (gracefully and politely) barge into the school on Monday. I will be kind but also upfront. "Hello, I would like a chance to meet everybody. I'm concerned that there wasn't an Open House. I'm concerned that the site hasn't been updated and that there is no communication going on. My son was hurt at an earlier school, and I will never allow that to happen again. My name is Mercedes and it is very nice to meet you."

Also, there's an essay that is going around, and it's absolutely lovely. I'd like to post it here. Permission to post is granted provided that the document is kept intact. It is. Enjoy.



Hey everyone,

For those of you who don't know me (I'm only an occasional poster) I am mom
to Michelle, 9 years old, microecephallic, athetoid/spastic CP, Cortical
Visual Impairment, Seizure disorder -- and CUTE! Ok, now for the reason I'm
posting.

To make a long story short, earlier this week a question was asked by some
nit wit official as to why there weren't more parents (of special needs kids)
involved in the local PTA and other issues that have come up that directly
involve our kids. His question, which was passed on to me was "Where are the
Parents?" I went home that night, started thinking - and boy was I pissed -
and banged this "little" essay out the next day on my lunch break. My
friends thought I should share it all with you, and I apologize for the
length, but I wanted you to have it all. By the way, I took copies of this
to the school board meeting that night, gave it to a couple of influential
people and it WILL get around.............
Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance
companies, wading through the red tape in order that their child's medical
needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to
make sense of a system that seems designed to confuse and intimidate all but
the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their
100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or
laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen
tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms,
waiting for tests results to come back and wondering: is this the time when
my child doesn't pull through?
The are sitting patiently, in hospital rooms as their child recovers from yet
another surgery to lengthen hamstrings or straighten backs or repair a faulty
internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm.
They are sitting at home with their child because family and friends are
either too intimidated or too unwilling to help with child care and the state
agencies that are designed to help are suffering cut backs of there own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled child alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant
10/15/96

Friday, August 21, 2009

I Have a Story!

I'm working on an introductory scrapbook for Niko's teacher. They don't have a Meet and Greet or anything, which is uncomfortable. I wish I could find out who his teacher was in advance and have a meeting with him or her. It seems insane to me that isn't the case. I looked at the school's website, and it hasn't been updated since late 2008. This doesn't restore my confidence. But I'll send him to school with a little scrapbook saying, "Hi, I am Niko! I'm sweet and happy, like the alphabet, and I'll bonk your head so don't get too close!" Because otherwise, I'm going to get 400 irate calls saying that Niko bonked somebody. Which they would be on the lookout for, if I could only get them that information beforehand. *sigh*

But! Something very excited happened today! (Besides Nina flushing her dress down the toilet. That was just...yeah.) I wrote a story and it was accepted by The Pedestal Magazine. It's the highest market that I've cracked yet, and I'm just very excited. It's one of my favorite stories that I've written, so I was extremely pleased that they accepted it. Anyway, it's up! Please feel free to stop by and read it. You can find it here. If it's something that you like, come swing by A Broken Laptop and tell me. Or tell me even if you don't like it. I'm always interested in what people have to say. Otherwise I won't improve.

:)

Tuesday, August 18, 2009

A New Year, A New School. And a Journal.

Niko starts school on Monday, but we only just found out where he's going. This will be his seventh school...two schools in our last city, and five schools here. (Including two summer schools.) All this talk of a routine and keeping things consistent? Hahahahha! The only school that he returned to was the one where his teacher was hurting him.

His new school is fairly close. They think his name is Nikdai, and its rated 5 out of 10 stars. But what can we do, except pray they'll do the best that they can while we do the same at home. I think I'm a better mother during the school year, when I'm not trying to provide every need for both kids. I think I'll like myself better. Maybe I'll remember how to smile.

Another sleepless night last night. It occurred to me that I miss my personal diary, which fell by the wayside as I write my two blogs. After all, can't I just print them out and call it a diary? Except that I'm never totally 100% honest on the blogs. 99% most of the time, yes, but there's always that small thought or feeling that is too close, too personal to go winging its way through the universe. This is as it should be, but I long to resurrect my journal and write down everything, knowing that it's a completely safe haven. Because there are days when I'm not so certain that I can do this. I've noticed that my friends are dwindling. I have nothing left to give them. When a child says, "I don't like Niko" I can't shrug it off like I used to. I act like I understand, and sometimes I do a little, but mostly it hurts. We order our food to go because it's easier than the show that goes on in restaurants. It takes a village, and we're absolutely isolated. These are the things that I would tell my diary, only in more depth, and with a little more ranting, and probably a lot more tears.

On the other hand, I'd also tell it that when I saw my children napping together, I thought that they were the most beautiful things in the world, and I felt badly for everybody who wasn't their mother. If only we could all be so lucky every now and then, I'd write. To parent children who are so exquisitely wonderful.

Tuesday, August 11, 2009

Better Days Make the World Go Round

Yesterday was so sucky! And today is the opposite.

My parents left today, but first Mom and I went out to breakfast. We laughed and talked and started hitting the Coke pretty early in the AM. Always a good sign. Also, I received an acceptance for a short story that I wrote! It's called "The Container of Sorrows" and it's going up in a pretty respected e-zine. It's probably the biggest market that I've cracked so far, and I just adore this magazine's fiction! So I'm really happy. It also qualifies for the Science Fiction and Fantasy Writers of America organization that I'd like to join. So yay! I wrote about it here I'll link you when it comes up. It's a very delicate story, and I'm quite delighted.

I just found Niko sitting on the bathroom sink, and I immediately pulled him off. "Do you remember falling?!" I asked. "Do you remember the hospital and the IVs and that whole ordeal?" He looked at me and smiled. Good kid. Good, crazy, thoughtless boy. We had a birthday party for Nina, and now she's pushing her new Tinkerbell doll around in a stroller. She's such a little mom. She's also no pushover, as demonstrated by her shouting, "You may NOT!" when I tried to do her hair. Today is a much better day. :)

Monday, August 10, 2009

Hello, ER

This blog post was supposed to be all about the 10k that we ran on Saturday (yay!) My parents came down to watch the kids during the race, and we celebrated Nina's second birthday. I was hoping that this visit would help pull me out of the sadness and despair that I just can't quite shake.

Today Niko was standing on the bathroom counter, and he fell off backward. I heard him hit the linoleum floor, and I just flipped out. I thought I'd see him with pieces of his skull missing or his limbs all bent backward. I still haven't gotten over seeing his broken leg last year. Thankfully, he seemed all right, but his bones are brittle from the hypercalcemia, and I couldn't ask him about a headache. So Dad and I rushed him to the ER, which required sedation. He pulled his IV out. He threw himself around. It was a nightmare, but the CT scan said that everything was all right. He's been throwing up all night due to the anesthesthesia, but he's in good spirits.

Seriously, it's one thing after another after another after another. When did life become such a test of endurance? On the other hand, we've always come out of everything okay. We're really very lucky. :)

Oh yeah, and the race was fantastic! Luke and my brother ran it, too, and we all really had a great time.

Thursday, August 06, 2009

S'okay.

So Nina is just fine. A little groggy, perhaps, because I woke her up every two hours last night, but fine. The goose egg has almost disappeared, and life is much better here.

Except that I blew Niko's world to pieces by flipping his mattress over. Too much change! Too soon! He fell apart, and now he's snuggled against me as I type, listening to music. That seems to put everything right.

We rented Coraline for the night. I'm looking forward to it.

Wednesday, August 05, 2009

The Goose Egg

It's a crazy time. Luke's still doing his busy season, and last week he put in his 40 hours by Wednesday. The kids and I spend a lot of time looking at pictures of Daddy.

Today I said, "Enough!" I hired a babysitter. I called my friend and asked her to lunch, if she could drive. Afterward we went to a matinee, and guess what was playing? My Sister's Keeper. Most of you know that I'm not into chick flicks at all, and most certainly not tear jerkers, but we went, and I cried during the entire thing. I remember a time when Niko was going into kidney failure, and there was discussion about whether our next child would be a "donor child". In fact, I think I mentioned it briefly on this blog. But we are lucky, and after his levels were stabilized, life was beautiful for our son. Nina gets to be Nina. She isn't spare parts for her brother. But even if that had to be the case, she's such a gracious, giving little girl that I know she'd do anything to help Niko in a heartbeat.

I'm on pins and needles right now about her. She was outside on the patio, and I don't know if she fell or if Niko pushed her, and I suppose it doesn't really matter. She hit the concrete with a sickening sound, and immediately formed the biggest goose egg on her forehead that I've ever seen. I picked her up. I cuddled her. I gave her some children's Tylenol and put some ice on her forehead. I looked up "goose egg on forehead" and everything tells me to check her eyes, to check her actions, to see if her speech is slurred. She seems all right. She stopped crying quickly, and was pointing out dogs, cats. "Ruff ruff, meow," she said. She was alert, and was tired after a while, but it was bedtime. The advice I found said to let her sleep, but wake her up periodically. Luke's on his way home from work, and we'll wake her up when he gets here. I feel that she's all right, but I'll keep a darn close eye on her. I'm afraid it's going to be a very long night. Luke will give her a blessing, and that will give us peace of mind.

The good news is that my parents are coming down this weekend so Luke and I can run a race. His race starts at around midnight, and mine starts at 1:00 AM. We'll run by Area 51 during the full moon, and last year it was such a mystical, beautiful thing. I'm looking forward to it, and I'm excited to see my parents. We'll have Nina's birthday party while they're here.

It made me feel better to see so many blog posts devoted to goose eggs. We all feel like our mommy license should be revoked. We all feel inadequate. It's comforting because I feel that way a lot. There's strength in numbers, isn't there?

Friday, July 24, 2009

I'm Going to be Happy



Luke took the kids to a family reunion four hours away. Originally I was going to go, but I asked if he'd mind giving me a chance to rest and reconnect with myself. They have been gone two hours, but already I feel so much more renewed. I have all of these plans: I want to make a bracelet. I want to write a story. I want to go to bed early and sleep in. I won't answer a single telephone call unless it's family. I'm going to let all of the house stress (the broken dryer, the broken vacuum, the broken garage door)and Niko/Nina stress and writing stress go. Do you know what I'm going to do? I'm going to be happy.

I wrote a brief post on it here.

Thursday, July 16, 2009

Things Are Looking Up!

Man, I have been down. I haven't been so depressed in two years. It's probably a culmination of things, but I have been trying to have a good attitude and work my way out of it. That means that I have been trying extra hard to focus on each and every good thing that came my way. Here are a few:

Niko used the potty for the first time the other day! Sure, it hasn't happened since, but I think that it will. Hooray!

Nina hasn't had any more seizures.

She pointed at my eyes yesterday and said, "Stars!" Oh, you sweet talker.

I had a fantastic phone conversation with my brother. We really get each other.

Luke listened to me blab all about Harper's Island. I loved it.

And Shock Totem is out! I'm so excited! I have a picture of the stunning cover art and Table of Contents
here. I also tell you why I'm nervous.

Have a good day, everyone! :)

Wednesday, July 08, 2009

Really, I Just Showed Up For the Music

Truly. I popped over to listen to my playlist, and decided that I should write.

Niko started four weeks of summer school on Monday. Thank goodness! It's 100+ degrees here, we're all locked inside of the house so we don't sizzle, his beloved trampoline is still broken (it's too hot to jump anyway) and all the kids do is fight. Luke is working insane hours because he's under deadline, and life will just be pretty miserable until August 31.

That sounds negative, but believe me, I'm trying to be optimistic. I have been depressed for the last three weeks and nothing seems to alleviate it. I'm exercising, I'm playing with the kids, I'm surrounding myself with happy things. It's not cutting it. Forget getting through the day; I'm focusing on getting through the hour. Through the next ten minutes. Do you realize how long the day is when you're taking it ten minutes at a time?

But Niko seems to like his four hours of school, and I'm pleased that he comes home hooting happily. Nina's getting a molar and is extra clingy, so I can use that time to dote on her a little bit. I'm trying to work on the writing thing, but it's not happening. This saddens me.

I do have a happy writing-related announcement that I'm going to post on tomorrow's A Broken Laptop. I'll link you then. :)

Wednesday, July 01, 2009

It's Nina's Turn to Scare Us

Many of you have heard that Nina had three seizures on Monday morning. Right in a row, about two to three minutes apart. They lasted maybe ten seconds apiece, and I had absolutely no idea what was going on during the first one. She just fell to the carpet, crying like something hurt, and when I picked her up, her eyes were moving back and forth very quickly in her head. The second seizure was a bit more severe, with her head ticking, and by the third, I had her bundled in my arms while I frantically searched for the phone. We rushed her to the ER, where all of her tests came back looking fine. No elevated anything, and a CT scan showed a healthy little girl. I've been trying to set up an appointment with the neurologist ever since we came home, but I can't get anybody to answer their phones or return calls. Again, I hate this town.

Luke gave her a blessing that said she'd be whole, and she has been her happy self ever since they happened. Apparently little kids can just seize, and I'm hoping that it was a sporadic one time thing, and that everything is well. Some have suggested that perhaps it's the heat. It was 108 degrees yesterday.

I thought a lot of things while we were in the car. I thought, "I don't know if I can handle it with two." Nina's our True North. She's stable. She's nurturing and sweet and she doesn't deviate while we run around crazily with Niko. If she's epileptic or something, can we really handle two? I dwelt on this for maybe three minutes. Then I pulled myself together. Could we handle it if we needed to? Definitely. I believe in the strength of the human spirit. I believe in adaptability. We have a fantastic, beautiful, loving son with a disability. And we have an fantastic, beautiful, loving daughter. And if she's a daughter with seizures, then we'll be able to handle that, as well. Perhaps not always gracefully, but as well as we can. Hopefully it won't come to that.

Also, Niko's beloved trampoline literally broke in half on Monday! The skeleton was so rusted that it just snapped. Monday was a Very Bad Day, as you can guess. Luke pulled the trampoline apart, and Niko just wailed. We meant to get him one for his birthday in May, but you know how those things go. I suppose it's a good thing that it's so unbearably hot, because the kids are staying inside and away from the gigantic hole in the backyard. We're hoping to pick up a new one tonight.

I've had people express concern that I'm not updating this blog very regularly. I update www.abrokenlaptop.wordpress.com about every day or so, so feel free to pop in there. Sure, it's more writing related, but you can keep a finger on our pulse that way. I don't want anybody to worry, but I don't have the time to do more at the moment. We all just do the best that we can, right? :)

Sunday, June 14, 2009

Niko's Test Result!

The pulmonary blockages are gone. Utterly gone. They were there when he was young, and they aren't there now. Happy day! His aorta is still narrow, but not severely. We're not looking at surgery; we're just going to be aware. And the best part is that he doesn't want to traumatize Niko, so we'll come back in a year. A year! We've never gone a year between heart appointments! I'm so happy!

Also, I had three pieces go up yesterday. A flash, a prose poem, and a regular poem. Three pieces in one day! I was pretty excited. If you're interested, you can read them here. I've decided that I'm interested in joining either the Horror Writer's Association (HWA) or the Science Fiction and Fantasy Writers of America (SFWA). It gives me another goal to work toward. Anyway, I was updating my Published Works page, and it made me sit back and smile for a second. Hooray! They're mostly small markets, but I'm getting better. I'm learning and I'm not giving up. And this makes me happy. :) Take a quick peek, if you'd like. I'd love it if you would. http://abrokenlaptop.wordpress.com

All is well here.

Thursday, June 11, 2009

A Lethargic Yay

Tomorrow I'm scheduled to go to the heart center and discuss the results of Niko's hellacious echo. Luckily Luke is supposed to be off, and can watch the kids so I can jet down there alone. I'm always nervous. Niko's heart has been looking pretty good lately...at least, according to whatever picture they've been able to get, which hasn't been fantastic. This is his first accurate picture in quite some time (like since we moved here three years ago) so I'm hoping it'll only give us good news.

Fingers crossed.

Niko's playing with his toys, and Nina is "reading" a book to her doll. What good kids. They've really been getting on my nerves lately (augh! SUMMER!!) but they're such sweet children. They want to be good and do the right things. They're pretty special.

I'm wiped out today, but I'm trying to press forward on the writing front. A lethargic yay! I think that I'm going to dedicate July to rewriting my second Ray the Vampire novel. I like the first one quite well, but the second one jumped the shark in a big way. You can bet that I'll be listening to this music while I write. This is the official Ray soundtrack. :)

Wednesday, June 03, 2009

Good news!

Good news! Good news, good news!

So I've been working so hard on getting my novel shopped out to agents. It's really...I don't know. Grueling. Time consuming. It's a little disheartening at times, but I tend to bounce back really quickly because I know that's just how the business goes. And I'm not afraid to work hard, so that helps. But anyway!

You write your novel, and then you have to write a short query letter saying, "Hello, carefully researched agent! My novel is about .... and would you like to read it?" It's hard. And I struggle writing queries anyway, so that doesn't help me. But!

I won a short essay contest, and my prize is that a major agent at Writer's House (they put out Twilight) will critique my query for me! She'll make it as strong as it can be. I've been very lucky to have other people help me with it, and this is just ultra fantastic. I'm so excited! Now I can feel confident about my query. :)

Anyway, I wrote about it here and linked you to my essay, if you're interested. Hooray!

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 http://www.abrokenlaptop.wordpress.com/, 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

I'm...Breathing?

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

"Mama?"

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?

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!

Tuesday, April 28, 2009

Sickity Sick Sick

Niko is so sick. Yesterday he was a bit cranky with a runny nose. Around dinner he ran a brief, low fever. Then at 2:00 this morning, he woke up crying and screaming in his room. It sounded like he was breathing through a straw. I got the vaporizer going, and Luke gave him a blessing, which was comforting. Then we used Vicks on his chest (he hated it) and Niko crawled in bed with us until he fell asleep.

I listened to him breathe. I thought about the nebulizers and the pneumonia and the treatments that he's had. I curse the medical care in this community. I curse myself for balking at taking him. I dread the tantrums, the fear, the absolutely ballistic freaking out. If you haven't seen Niko in full-blown panic mode, then even your best imagining can't come close. It's like holding a 50 pound nuclear bomb in your arms. His strength becomes super human.

So it's 4:30 am now, and I came out here to type and think. The good news is that Dad is down and visiting, so if we need to make a hospital run, I have a car and a babysitter for Nina. I'm hoping it won't come to that, of course, but I'm prepared. I can do difficult things.

But I have some good news! I made arrangements to do my first book signing! Ever. It'll be in my hometown this August sometime. Every little step that I take will lead me somewhere! So I'll be signing Neverlands and Otherwheres and A Cup of Comfort for Parents of Children with Special Needs. I'm so glad that they suggested that the authors do promo. I never would have done it myself in a million years, and I need to learn how. Also, I received an exciting and positive email concerning "Ray". I wrote about these things at http://www.abrokenlaptop.wordpress.com/.

Okay! Goodnight!

Tuesday, April 21, 2009

What Is This Thing Called A "Blog"?

I just fell off the edge of the world, and now I have returned. Actually, to be honest, do you know why I haven't written here in so long? It's because I said that I was going to scan Niko's picture, and I haven't. And it seems incredibly hard to go to the garage, locate the scanner, and do all of that! I'm easily overwhelmed. Does that make sense? I think it makes sense. But I do plan to do it soon. After I mail in a few contracts and make a few phone calls. This week, maybe?Yes. This week. :)

We have an appointment in mid-May with a child development specialist. In Boise! So we'll see Luke's parents and Pyper! I can hardly wait! For that aspect of it...the actual appointment will be hard. We also have a heart echo, MRI, and EKG scheduled. And we're meeting with a new pediatrician, since the old one is a minion of Hell.

That said, check out http://www.abrokenlaptop.wordpress.com/! I have a lot on my plate right now, and I'm very excited about it! I'm taking steps in the right direction. And I have a few new pieces out. Also, A Cup of Comfort for Parents of Children with Special Needs is coming out on May 12. I'm story number 6, "Peanut Butter Toast". The book is ten dollars and you should be able to buy it at any major bookstore. Isn't that awesome?! I've officially infiltrated Barnes and Noble and Borders! Bwa ha!

Today the bookstores, tomorrow the world.

My favorite song this week is "Waiting" by Shiny Toy Guns. It's song number 25 down on the playlist if you'd like to listen. Bitterly sweet and melancholy, with a touch of longing. Delicious.

Tuesday, March 31, 2009

All About Niko

We went to Quinn's baby blessing this weekend, and it was spectacular. The best part, for me, was being in a place where our kids could run around and play together, and we weren't judged. People said hi to our kids, ruffled their hair, and weren't fazed by Niko's unusual actions. It was held at at a family business, not a restaurant, not a house with breakable things. Everybody was friends and family. Do you know how that feels? It feels like heaven.

We received Niko's school pictures yesterday, and I nearly cried. He looks so happy. He looks the way that I see him at home, not the way that he is when he's panicking in public. I can't wait to post it for you. This is my son. This is what I see. This is what most of you don't.

I talked to his teacher today. I asked her if she thought he exhibited signs of autism. She was very careful about what she said, because she couldn't diagnose or anything like that. I said, "I realize you can't say very much, but in your opinion, with the behaviors that you've seen, do you think I should maybe take him to the doctor for a reevaluation?" She said that it was funny I'd bring that up, because just two weeks ago somebody else had asked her the same question about Niko. It's tricky, because Niko has Williams. Any unusual behavior has always been attributed to that. But is there more? I used to keep up on all of the Williams Moms blogs, and then I couldn't anymore. They didn't seem to apply to my son anymore. Their kids were making sounds and talking and engaging. Mine? Definite verbal loss. Niko would rather be by himself than with anybody else. Watching the dryer spin. Listening to the dishwasher. Pushing the buttons on the clock.

So I made an appointment with a new pediatrician, and we'll see how it goes. We'll test him, and I'm actually pretty certain that he's on the autistic spectrum somewhere. The words "dual disability" are just...difficult words to keep down. At the same time, it will be a new set of resources, and we'll know what to expect.

Thursday, March 26, 2009

Tuesday, March 24, 2009

My First Sewing Project


Nina's dress!

Ten Minutes Worth of Stuff! Go go go!

I have exactly ten minutes before I need to hop in the shower, (writer's group tonight! Yay!) so here we go!

1. My parents came down, and it was absolutely lovely. We had a really, really good time. The kids just reveled in the attention.

2. I actually won something! Seriously, you guys know my awful luck, so this was extra sweet. I won a super cute ring from Jasmin at Frog Princess Designs. It's so adorable, and it really made my day. You can see her stuff at http://frogprincessdesigns.blogspot.com/. There's a lot of whimsy there.

3. I think that Niko has autism, along with Williams Syndrome. It's an idea that has been niggling at me for a while, but I was reading a newspaper article a few days ago that hit me like a cement truck. It talked about how Autism is often characterised by losing the sounds that they used to make. Niko's babbling? His "Grudge" sound? Mamama, bababa, it's all gone. Nothing. He cries, and sometimes says "Ah," but not like he used to, not at all. I maybe hear something out of him five times a day. It's heartbreaking. So I'm switching pediatricians from The Children's Doctor From Hell to somebody that my friend recommends, and we'll do some more testing. Or it could be after effects from his abusive teacher, I don't know. Anyway, wish us luck.

4. I have a new poem up at http://www.abrokenlaptop.wordpress.com/. Remember months ago when I withdrew some poems from a magazine that I thought was defunct, and they wrote me saying, "Why did you do that?" The answer was "Because I'm so green at this, auuughhhh!" and they forgave me and wanted to run my poem anyway. So go see it, if you want to! :)

5. I am having the best time making some things for the crafting meme. I had a few horror writers comment, and it's especially fun to make them gifts. They have a little more....bite. >:)

Later!

Wednesday, March 18, 2009

Guess What I Did Today?

I celebrated St. Patrick's Day by scouting shamrocks for The Big Bag of Luck Giveaway on this site: http://carriedawayteam.blogspot.com/2009/03/big-bag-of-luck-giveaway.html. It was fun, soothing, and delightfully frivolous! I about died when I came across WolfBait's store...these bags are made out of the most adorable fabrics ever. I think that I'm going to spend some of my birthday moolah there.

Tomorrow I plan to start cutting out my Day of the Dead purse that I'm making. (Hence looking at bag sites, yes? I was googling patterns. Yay, Google!) I'll post a picture when it's finished, provided that it doesn't look too heinous. Then I'm going to start on a skirt. I could really get into this sewing thing.

Tonight I had my writer's group meeting, and I was so incredibly scattered that it was almost embarrassing. Oh well! It happens, and I did my best. You can't ask for more than that. It was a strange day...as you can see, since it's two in the morning and I'm tapping it up on the computer. :)

Friday, March 13, 2009

A Meme That You'll Really Enjoy!

I saw this on Rachel's blog and pounced on it, eyes wide, teeth bared, claws out. Because who doesn't want something lovely made for them? With Rachel, everything is lovely. She touches something and it turns into glitter and butterflies. You might think that I'm kidding, but everybody that knows her knows that I speak the truth. The things that I make? Have a tendency toward bat wings. So here are the guidelines!

The first five people to respond to this post will get something made by me! My choice. For you. This offer does have some limitations:

1. You will not know what it's going to be, and there are no guarantees that you will like what I make!

2. I have until December to send it to you. Anticipation is part of the game, isn't it? Of course it is.

3. Most importantly, you must offer the same deal on your blog - the first 5 people to comment on your blog (or Facebook or whatever, if you don't have a blog) get something made by YOU!

4. If you already have this meme up on your blog, no problem! You can play anyway. :)

So! There you go! I may put this up on http://www.abrokenlaptop.wordpress.com/ later, which has a completely different readership than this blog. I treasure all of you, I just have to say that. It's nice to discuss life and Niko here, and agents and spellcheck there. You guys are the reason that I want to do this. I would be delighted to send you little random gifts. :)

Sunday, March 08, 2009

End Experiment (And boy, am I glad!)

Well, I feel better when I try to do the necessary things. I'd like to say that things zip along more easily that way, or that it's all miracles and butterflies and rainbows, but that isn't the case. I simply feel better. I feel like I'm making an effort, and maybe that's all that matters. I also learned that I'm definitely not doing this alone. We're all high fiving each other as we zip by in our separate rollercoasters. You guys are awesome!

We had Stake Conference today, which meant sitting for two hours on folding chairs with the kids. Niko headbonked everybody! His sister, the guy sitting in front of us, the chairs, our knees, our legs. At one point I had him on my lap (to restrain him, mostly) and he headbutted me so hard in the jaw that my vision blurred. I set him down on the chair next to me and had this moment of overwhelming sorrow. I thought, "What am I doing here? I'm not learning a thing. Everybody is judging us. Niko's out of control." I wanted to stand up and leave. Everything is a struggle. Everything is a fight. Sometimes I just get tired of fighting.

I drive myself crazy sometimes. The other night I said to Luke, "If this was the Holocaust, Niko would be taken away. Do you ever think of things like that?"

He doesn't. But I do. I can't seem to help it.

And then I pulled myself together. Sure, we have to make certain concessions for Niko, but we deserve to be out and about. He is a wonderful, beautiful boy, and he most certainly wasn't the only child misbehaving in there! Let it go. Let it go. As everybody has been telling me, be gentle. Have mercy.

Go home and kick some Katamari Damacy butt!

I bought a sewing machine with my writing contest money. Woo! I made Nina a dress, and...I can only get better. I'll post a picture later. Come read my story! www.abrokenlaptop.wordpress.com.