A Peeko At Niko: Williams Syndrome

The Shootout at OK Corral

2011-12-21T05:23:00.000-08:00

I have to tell you, dear ones, that I have never stalked into a meeting so ready to fight, and then...I found that I didn't need to.

Niko's IEP meeting was on a ridiculously tight schedule. We had about an hour to complete the entire thing, so I basically walked in and said, "We feel that this isn't the right placement for Niko. Although wary about the autism placement, it's preferable to here. We'll reassess again at the end of the school year. Enough of that. Let's talk about the abuse allegations that I'm hearing about."

Their jaws dropped. DROPPED. They were absolutely horrified. We looked at their faces and realized that they genuinely didn't have anything to do with it. I shared the information that I had, told them who I was warned about, and demanded that the earlier abuse allegations be documented and put into his folder immediately. They did so while we watched. And then there was smiling. They held sweet Lil' Lil. We talked about how amazing Niko's speech is coming along, and how best to control his extreme anxiety, and how much he wants to please us. We discussed his mind-boggling aggressive behavior at school (kicking, hitting, singling out victims) and how that behavior was nonexistent at home. When they gave him his own floater aid, the violence dropped to nearly nothing. He had 17 kids in his class, and it was too much.

The autistic placement turned out to be a godsend. It wasn't right for him before, and we made the best choice at the time, but right now he is thriving. It's delightful to receive notes from his teacher saying, "Did you know that he knows his colors?" She constantly tells me how well he responds to ABA therapy. She uses words like "delighted" and "amazed" and "impressed". There was a bus snafu (okay, so there were many) and his teacher swooped in, fiercely protective of him, even though he has only been in her class for a few weeks. She's truly playing for Team Niko.

He's happy. He comes home humming new songs that I'm not familiar with. He asks to go to New School. He's himself again.

I couldn't be more pleased.

Battle

2011-11-01T06:18:00.000-07:00

So Niko hates school. I know, right? He's usually wild about school. Mad about school. Last year he loved his teacher, loved the bus, loved his homework. This year he cries. Suddenly I hear that he's aggressive. Each morning he begs, "Mama home?" and wails while I put his clothes on.

You know me. You know where my mind goes. As soon as I heard that he was assigned to the same school where he was "allegedly" abused before, I stood my ground until he was switched to a different school. YAY! But he's regressing in potty training, even at the new place. He's changing.

We have an emergency IEP meeting scheduled for tomorrow. They, once again, feel like he would do better in an autistic placement. I'm not certain how I feel about that placement, but I know for sure that he is NOT thriving where he is now. But I was just pulled aside and informed that I should "check Niko for marks". That two kids in the special ed department from his new school have pulled their kids out.

Nobody should have to check their kids for marks as soon as they step off the bus.

The meeting is tomorrow. My husband took work off so we can attend together. It isn't going to be how it was last time. I'm not going to weep and cry and shudder to the ground. I'm going to dismantle everything if I have to. Scream the walls down. Call the media. Carry a fiery sword and defend our children.

I also found out that the schools have no record of the abuse that went on before. They have record that they suggested an autistic classroom for my non-autistic son and I stubbornly refused, but no record that an earlier teacher put her hands on him. Repeatedly. With witnesses that refused to speak up when interviewed later. This will change. All of this will change. This is mostly because I have changed. I'm not going to be intimidated anymore. I'm going to look this broken system in the eye and say, "I'm stronger than you."

2011-07-31T18:56:00.000-07:00

Oh my goodness, have I really not updated since MARCH? I don't even know what to say. Life was busy, I guess. I updated the other blog more regularly. I've been happy and sad and stunned and baffled. Let's make a long story short, shall we?

I was on bed rest for about three months. The twins came as a very sudden surprise and were born about eight weeks early. We named them and held sweet Seija in our arms while she passed. She lived about five hours. Lilia is still in NICU and has been there for about six weeks. She's having difficulties with her heart and with breathing, but she's absolutely beautiful and a joy. I'm having difficulty with being the mother of five children but only three are alive, and one hasn't even been able to see sunshine yet. There are good days and bad days.

Some of you know that Niko was "allegedly" abused by his special education kindergarten teacher. There was a slapdash investigation by the school district and the teacher had to take a class on Williams Syndrome. She still teaches there. I was not satisfied with the outcome, but was too heartsick and naive to do any better than I did at the time. (If you want to read about that situation, it starts here. Seriously, I read it and felt nothing but sympathy and sorrow for sweet, befuddled me.) I received a letter saying that Niko was assigned to that same school for this school year. I can't believe that even happened. I get to call them tomorrow and tell them in no uncertain terms that my son will NOT be going back to that school for any reason, and to change his assignment immediately. I'm filled with equal parts rage and sorrow, but I realize that I'm much stronger than I was just a few years ago. He is my son, and he's beautiful, and he deserves so much more than he's being given. He isn't an afterthought, and I'm not afraid to stand my ground. Wish us luck.

It's cliche but I truly believe that it's darkest before the dawn. In my experience, you have to go through all of this awful stuff, and then something absolutely amazing happens. I'm expecting it. :)

Finally, Good Baby News!

2011-03-19T13:37:00.000-07:00

Every time I go to the doctor, the news has been bad. One of the triplets died. One will most certainly die. When the second one passes, it could very well take the third with it.

Well, enough of that! Today we received wonderful news. Although sicky baby will almost certainly pass away soon after birth, for the first time we’re looking with optimism toward meeting her. The doctor was surprised at how well she was doing. “Delighted” was the word that he used, and I’m delighted as well. She’s doing so well that there isn’t a reason not to expect her to survive until birth. The other baby is doing extremely well, also. Hooray! Now I can definitely spend the day writing with a lighter heart.

Incompatible With Life

2011-03-01T18:04:00.000-08:00

We learned that while one baby continues to develop normally, the other one has been diagnosed with alobar holoprosencephaly. This is what ultimately led to the demise of the first triplet. We just learned that it will most certainly lead to the demise of the second. My sweet girl (they’re all girls! Yay!) has severe intracranial and facial deformities that leave her “incompatible with life”. What a strange phrase. It makes my mind go in so many different directions. It’s intriguing in it’s starkness. While the news was tough to swallow, I’m still very proud of her. She’s such a fighter, and while my ultimate goal is to hold this sweet little one alongside her sister for a few minutes in this life, I’m prepared in case it doesn’t happen. Prepare for the worst and hope for the best. It has become our family motto over the past few years, and I have never regretted doing just that.

As you can perhaps imagine, I’ve struggled with writing for the past month. It’s difficult to focus on a project when my mind keeps wandering away to other things. Suddenly my priorities have become very clear, and it’s remarkably refreshing. I unplugged the phone. I stepped back from activities that take me from my family. I’ve learned how to say no when no must be said.

I also realized that writing is how I cope. As I’m contemplating our changing family, and our changing expectations and dreams, I discovered that I was thinking of this whole situation in essay form. I was carefully choosing my words in my head, trying to find the right phrase so I could accurately express what I’m feeling. “I’m sad,” doesn’t cut it. But the essay I wrote in my mind, the one about the conflicting emotions that come with looking at new strollers for one child while looking at infant caskets for the other…well, that is how I think. It’s how my brain works. I find much more comfort in that than I do in anything else. When I put the words down, it is neat and clear and lines up nicely. It swirls in my brain, but it makes sense on paper. It’s a comfort, and it’s a joy.

I hope that you can read this essay one day. While it’s sometimes difficult to accept the road that life sometimes takes us on, there is always happiness among the sorrow. How truly fortunate are we that we were not only blessed with one, but three children? Losing one was terribly difficult, and losing two will be worse. But how wonderful is it that there is a third, this miracle baby who is completely untouched by the anomaly that felled her sisters? I’m very aware of how there is beauty and joy amid the sorrow and loss.

I typed the words “incompatible with life” into my search engine. I was astounded by how many hits came up, how many pictures and stories. That, too, was comforting. Sometimes it seems that we’re the only ones going through whatever situation it might be, but I’m learning that is never the case. There is an army of us out there.

Why Am I Thinking Of The Rolling Stones?

2011-01-17T15:15:00.000-08:00

At a time when my heart is breaking?

We were calling the triplets Winkin, Blinken, and Nod, but discovered today that Nod has passed away. It’s funny how you can become so attached to somebody that you haven’t met, but that’s the way of it. While I mourn for the child that we almost had, we’re still excited that we have what seem to be two very energetic twins, and that’s a blessing.

I do believe that things happen for a reason, even if it’s only to teach us strength and empathy. I wish that this wasn’t a lesson that I needed to learn, but that’s where the Stones come in. You can’t always get what you want. I just need to focus on the rest of those uplifting lyrics, and remember how much I believe in hope.

Thank you for your kindness concerning all of this. I’ve been a bit overwhelmed for a few weeks and haven’t been able to respond as personally as I would like to, but please know that you’re very appreciated.

Surprise!

2011-01-10T19:42:00.000-08:00

I wrote a post a few weeks ago celebrating our tenth wedding anniversary. I’d been feeling a bit unwell lately, so imagine my darling husband’s surprise when, after our anniversary dinner, I shouted “SURPRISE!” and announced that I’d just discovered that we were having our third child. How wonderful! How unexpected! A surprise indeed.

Then we were robbed ten days later. SURPRISE!

Today’s surprise took place at the first ultrasound. My dear friends, I am not exaggerating in the least when I tell you that my breath was taken away. We saw the baby for the first time. Then, SURPRISE! There’s another baby! Twins! We’re having twins! I couldn’t believe it. Can you believe it?

But since we never do anything halfway, SURPRISE, SURPRISE, there are actually three babies. That’s right. Triplets. Suddenly we will go from two kids to five. I can’t wrap my head around it, yet. Although excited, I don’t think that my heart can take any more surprises. At least for another day or two.

So let me reel for a while. And then we party! Celebrate with me!

The Best Part About Marrying Young...

2010-12-15T09:02:00.000-08:00

...is that you get to grow up together.

We met when I was barely 20 years old. He was 21, and had been back in America for two weeks after living in the Baltics for the last couple of years. He spoke Russian and sometimes had to search in order to find the correct word in English.

I fell in love with him the night that I was ranting about the injustices in the world and he said, "We always need someone to fight the losing battles." We were married when I was 21 and he was 22. Nine months into our marriage, 9/11 happened. That same day, I had my first cancer scare.

We moved to Seattle, had a baby, and then moved to Finland. We moved back home and found out that our baby had a rare genetic syndrome and might not survive. I was 24. He was 25.

I lost my wedding ring and cried for five years. He never once got angry about it. He was just sad that I was so upset.

He got a very cool, super mysterious job and we moved to Vegas. We had a baby girl. I started getting published. He was promoted. He sings to our kids in Russian, does magical things to make our backyard a children's wonderland, and he's just as sexy in a suit and tie as he is in ripped jeans. And I love the ripped jeans.

For our tenth anniversary, we planned to go cage-diving with great white sharks in Africa. We've been planning it for years. Instead, we drained our savings on medical procedures, ballet, and speech therapies. Our previously nonverbal seven-year old son just said, "I want toast, please." Our daughter danced as Clara in the "Nutcracker" yesterday. My husband took an hour off of work in order to see her. Tonight we're going to stay home and watch a movie instead of going diving with sharks. It's absolutely worth it.

I have a new ring. I finally accepted that I'll never find the old one after moving five times. I love my husband more now than I did when we were first married, and I was pretty head over heels then. We all know the responsibilities of marriage. The hardships. The frustrations and the joint decision making and the bills. Nobody ever mentions that marriage is like a slumber party that continues on forever and ever. There's dancing in the kitchen. Throwing a pillow at somebody and knowing they'll laugh every time. Knowing that when you call him, his cell phone starts playing "Girlfriend in a Coma" and nobody understands why we both think that's so funny.

Today is our ten year anniversary. I've never been so happy! And I still feel like we're children.

*By the way, the picture was taken by our friend Rachel Miller. She's fantastic at everything that she does. Thank you, Rachel!

Nina the Ballerina

2010-12-07T17:34:00.000-08:00

I lose a lot of sleep worrying about Nina. I feel like so much of our life revolves around Niko and his needs. We don't go to loud places because it disturbs him. We don't go to restaurants because he can't sit still for that long. Twice a week I pack up the kids and we travel for a three hour round trip therapy session. While Niko is in with his speech therapist, Nina and I talk and sing. We play games. We put together puzzles and it's our special time. I was delighted to find out that Nina thinks therapy time is for her. But still, is she being pushed to the sidelines?

We started her in ballet. She loves it! If you ask her about ballet, her face lights up. She tells complete strangers that she spins and then falls down. She works on technique for the first half of the class, and then they read a story and dress up for the second half. The best part? Not even Mommy is allowed inside. Once they step through the special Fairy Door (a tiny little girl sized door) it's all about them. Parents stay outside and watch through a window until it's time to come in and take pictures.

It's all about Nina. It's only for her. I don't think I've ever seen her so happy.

Reading For A Podcast

2010-10-26T17:30:00.000-07:00

My friend RB Wood invited me to read some of my work on The Word Count Podcast. I'm reading a short essay about being a writer, and the day that I got a call from Niko's school saying that he needed to go to the hospital when, in fact, he only had a dirty diaper. Egads. This essay has been published on my writing blog before.

Anyway! You can download the podcast for free here. It's podcast #1 and is titled A Double Feature. While the podcast does contain explicit content on it from other writers, my piece is clean. I begin at around the ten minute mark. Won't you listen? :D

Recommitting

2010-10-06T10:04:00.000-07:00

I had an epiphany the other day. I realized that I never spend time here. I keep up with people via Facebook, or I'm always on the other blog. I miss this place. In fact, I wrote a blog post titled "Something Humbling" on my writing blog, which is http://www.abrokenlaptop.com/. I'm going to repost that here for you. I feel very strongly about being more active on this blog, and also about inviting my writing friends over to experience this section of my life, if they so desire. They're so kind and supportive; they're like a second family. Just like you guys. So! This is what I posted a week ago at my writing site:

I’ve been a blogger since 2005. I wasn’t blogging about the wonderful world of writing; I was writing about my son. He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that. Few had seen the syndrome before. We were alone. I started my blog at www.williamssyndrome.blogspot.com because I was standing atop my raft and I was screaming for somebody to hear me. More than that, I knew the feeling of absolute isolation. If only one person stumbles across my experience and it helps them in any way, then that is what I want. I would have sold my soul to read somebody’s blog when our diagnosis hit.

The Williams blog is a much more honest blog than this one can ever be. “Blah, I got a rejection!” is far less visceral than, “My son is dying today.” The Williams blog is a blog of happiness and even more so of pain. I updated religiously for about three years until somebody said, “Hey, I found your blog. My child has Williams, too.” Somebody finally heard the screaming.

I started this blog in 2008. I kept updating my other blog as well, because there was a lot to say. Then I gradually started spending more time here. I apologised for my long absences on the Williams blog, and I urged them to come here if they wanted to keep their finger on my pulse. Why? Because this is my safe, happy place. Because sometimes it’s too hard to write about the struggles that we’re going through, and also because I’m embarrassed. I’m embarrassed that I can’t always be strong. I’m ashamed that things in the Williams World have temporarily broken me to the point where I didn’t know if I would ever be able to stand up again. But look, I’m standing. We all are.

I received an email the other day. A mother told me that my blog was her introduction to Williams Syndrome when her child was diagnosed. She said that she read my blog start to finish. She was my one person, the one I wrote it for. But the very next day, another mother told me about when she started reading my blog. I had written about looking for a park with few children so they wouldn’t tease my son as he played. She said she sat at her computer screen and cried, because she did the same thing.

This humbled me. Greatly. These women are some of the strongest that I have ever met. It’s humbling to hear that some of the tiny things that I said affected them. I know that these women have greatly affected me.

My Williams blog updates have become extremely sporadic. I keep in touch with most of these women via Facebook. I cry privately to my friends instead of crying publicly on the blog. I spend more time here, in my whimsical little writing world, because it’s easier, quite frankly. I love the joys and challenges of writing. And compared to genetic testing and seven years of potty training before it finally took hold (Hooray, it finally took hold!) writing challenges are a breeze. And the best news is that my son is doing so extremely well lately that I simply choose to enjoy it instead of writing about it.

I’m realizing, though, that simply because our life is taking a delightful turn for the better, that doesn’t mean that other people aren’t still struggling. It had never occurred to me that I was being selfish by not keeping up the Williams blog, but I realize it’s true. When you child is diagnosed with something scary and seemingly insurmountable, you scour the universe looking for hope. My son is speaking. He’s holding a crayon. Today he washed his own face. There was a time that we didn’t know if that would ever be possible. These are things that I need to write about.

I’m going to recommit to my other blog. I’m telling you this here because…I’m not sure why. Perhaps you’ll be hearing from me less. Maybe you won’t. I need to figure out how to balance life, family, Shock Totem, writing, and two separate blogs. We’ll see how it goes. But I wanted to let you know that you feel like family. And if you ever want to pop over to the Williams blog, you are definitely invited. Come over and play.

The Magic Switch Has Flipped

2010-08-04T16:20:00.000-07:00

Oh, my dear friends! I have so much to tell you! You know how the negative just piles on, and it becomes harder and harder until you think that your back will break under the weight of it? You think about given up until you finally stand up and shout, "Bring it on, Universe! I can take ya?" And then suddenly the clouds part and all of these magical wonders fall from the sky. It's a direct reward for surviving, I think. Let me tell you about the rewards that we're enjoying.

The most important is that Niko's magic switch has flipped. I attribute a lot of this to his school teacher this year (who, unfortunately, isn't going to be there next year) but I attribute it even more to his summer school teacher. To recap, Niko has had a terrible time at school, and especially summer school. Last year we learned that he had cried all day every day, and the teacher had set him aside to focus on the kids who behaved better. We didn't even know he had a problem until his report card came. But this year? A woman from my church walks up to me and says, "Hey, I'm Niko's teacher this summer!" I couldn't believe it. Somebody who knew him and his needs was going to be his teacher?! It was a direct answer to my prayers. She and the other teachers were so wonderful! Niko was excited to go to school and he came home just beaming. They reinforced everything that we were teaching him at home, and what's more, they made a big push for potty training with us. NIKO IS POTTY TRAINED!! I didn't ever see this day coming, and it's so delightful! Lots of high fives and smiles all around, I have to tell you. His language is getting better and better. He can say things like, "Hi Mama," "apple", "water", "I love you", "Daddy", "cheese" (for cheese crackers) and "Nina". They're not spot on, but they're consistent and we treat them as words. Can you imagine the relief that all of us feel now that he can ask for a drink of water when he's thirsty?

Also, we took him to the hospital for his sedated heart echo, which was much better than the nightmare that I posted about last year. Niko's care was wonderful, and his heart looked so fantastic that we don't have to come back for two years! I am not afraid to admit that my eyes were tearing up as I hugged the cardiologist.

Next: my writing. Oh my goodness, it couldn't be going any better! I have finally found a wonderful agent who hit the ground running before the ink on our contract even dried. I announced my happy agent news a week ago today on A Broken Laptop, and I am so excited! For those of you who are curious as to the process, I now send the agent my completed manuscript and he uses his connections to send it to publishing houses. That means that A) I don't have to spend the time researching and sending it to people who most likely won't look at it without an agent anyway and B) I get to use this new-found time to work on a new manuscript. This opens doors for me that wouldn't be opened any other way, and I'm simply thrilled.

Also! I'm going to a writer's conference in Las Vegas called KillerCon, and I am going to be on two panels there! That means I'll sit on stage with a handful of other writers and answer questions that the audience asks. I'm quite humbled and excited to be there. It's a privelage.

The magazine just reopened to submissions so I'm quite busy with that. It's my husband's busy season, so I took the kids and fled to my parent's house for two weeks. Vegas is too hot and Nina's seizures started up again, so we bolted. We see her neurologist in a few weeks. It can't come too soon. Nina is so sweet that I think she's made of sugar, sometimes. When she isn't made of spice. She's everything that I always wanted in a daughter. Today my mother gave her a doll for her birthday, and she immediately named her Bird. Life is pretty sweet for us. :)

Writing Time! And Niko's Book! And The Anthology!

2010-06-21T14:11:00.000-07:00

My father is down visiting for a day. He took Niko to speech therapy, and when Nina bounced around (in her pink tutu) and said, "Imma come too!" he took her as well. He's giving me two and a half hours of unanticipated writing time. I am so wonderfully grateful! I will have another chapter finished in my Williams book by the time he returns, and that makes me very happy.

Today is the first day that I really sat and read through what I had written so far. I'm struck again and again by what an amazing journey it has been, and will continue to be. Niko has come so far, and I'm very proud of him. In fact, I'm very proud of all of us.

In other news, I was able to officially announce that SUPER SPECIAL AWESOME anthology that is coming out in October! It has an absolutely amazing list of authors that I'm delighted and awed to share a table of contents with. (Anybody ever hear of True Blood? Coraline? Fight Club?!) I am so humbled. Come see the book cover and the Table of Contents here. I can't tell you how thrilled I am! :D

Ai yi yi.

2010-05-03T22:56:00.000-07:00

So I gotta tell ya what happened this week.

It was a lovely day at church where Small Son inadvertently put his hand through the window. It cut his wrist horribly, barely missing the artery. When I took a good look at it, I pretty much hit the floor. While I claim that I was always fully conscious, at least a little bit, this has been disputed by those present. And apparently I wasn’t the only one who fainted when I saw it, either, although I was busy seeing stars and can’t confirm it. Go, me.

But he’s stitched, he’s happy, life goes on and Tiny Daughter now insists on wearing a bandage on her wrist, too. In fact, she insists that the entire family wears them as a reward after cleaning and changing Small Son’s bandages, so for at least half an hour a night we look like the Yardley Suicide Club. It’s grisly, but black humor is pulling us through.

What’s even more ironic is that the night before this happened, my mom said, “If I didn’t see the weird things that constantly happen in your life, I wouldn’t believe it. Your life is a comic strip.”

Yes, yes it is.

So I took a little time off and spent it appreciating my wonderful family. Now I’m ready to get back into the writing grind, and I no longer start sobbing whenever somebody says, “Hey, at least now you have another chapter for your Williams Syndrome book!” Rock on.

Mommy's Little Pwincess

2010-02-24T06:43:00.000-08:00

We can't seem to shake these colds. We had to reschedule Niko's first private speech therapy appointment because they have a strict sick policy. I spent almost all day yesterday holding Nina in my arms and watching Disney's Cinderella on Youtube. "Pwincess?" she asked me tearfully. "Pwincess?" She wore her pink princess pajamas and cried into her star blanket. I think my heart burst from loving her so much.

A Happy Announcement!

2010-02-22T16:20:00.000-08:00

Thank you to everybody that encourages my writing. Sometimes I feel like I'm being selfish by doing something that I love so much, and I appreciate you for reminding me that I can't take care of anybody else if I'm completely depleted.

I announce the biggest sale of my career thus far here.

New Things!

2010-02-13T19:19:00.000-08:00

Niko learned how to blow into the musical recorder today. The mind boggles. Within two weeks, this child has learned how to suck through a straw and blow into a recorder. Oh! And climb our climbing wall! Something has switched on inside of our child. :)

And I talk about my writing life here. Good (secret-ish) news, and I officially announce that I started the Williams Syndrome book. I'm hoping to have the first three chapters finished by Tuesday. This definitely feels like the project that I should be working on at the moment. It feels really good.

The Neverending Paperwork

2010-02-10T18:45:00.000-08:00

Niko was supposed to have his two hour speech evaluation tomorrow, but he (surprise!) came down with a cold. I'm waiting impatiently by the phone in order to reschedule it. I'm feeling out pages and pages of paperwork...things that I've forgotten. How many times has he been hospitalized? Where? How long for each time? What for?

Thankfully I have this blog! It's my journal. It keeps me straight, because otherwise I couldn't remember anything.

Nina and I went to the doctor today. That woman is a sadist! I've been working out really well lately, but I'm still not feeling very well. I went to request a sleep study, but now I have a full physical, fasting blood test, heart EKG and chest x-ray in my immediate future.

"How are your sugars? Are you taking your meds?"

"I....uh...er, no."

I was soundly rebuked, and after TWO HOURS there, managed to crawl away feeling quite chastised. I complained to Luke about what a Nazi the doctor was, and imagine my incredulity that he was firmly on her side! The traitor! ;)

Good news! I sold a short story to a really big venue! I don't want to announce it publicly until everything gets signed, but it's my biggest sale yet. The best part was that it was an invite-only antho, and not only was the editor kind enough to invite me, but I worked hard (Luke will attest) and it paid off. I'm very, very happy! You should be able to walk into practically any bookstore and pick this one up. More details later.

Also, I have decided to write a book about Niko and WS. There are many reasons for this. I write; that's what I do. It's how I process. But more importantly, I met with Noel the other day at the mall. Noel is a fellow MS mom, and it was such a pleasure to talk to her! Not only is she a wonderfully beautiful person, but she is strong. We talked about all of these things that we understood (keeping everything high so it isn't torn apart, for example) but most people didn't. We talked about friends and relatives who don't really "get the Williams thing". I want this to be a book that explains. I want it to be a book that you hand to your mother and say, "Here, Mom, I love you. This will explain my child." It will be sad, of course, because our lives have sadness. But it will be hopeful and delicate and, hopefully, a thing of beauty. I've thought about it for a long time, but I just finished two important projects, and it's time to start this one. I feel like taking a deep breath before I start. Wish me luck. Please pray that I'll do it justice.

All right. Back to filling out more paperwork. Have a lovely day, my friends.

Hooray!

2010-02-08T18:25:00.001-08:00

Niko just used a straw for the first time in his life. I teared up in the restaurant. Just sayin'. :)

Oh, and I lost a challenge and had to write and sing a song. Have you ever heard me? I sound like a child. That is here.

Today Is Extremely Wonderful.

2010-02-03T13:42:00.001-08:00

It just is. I talk about it HERE.

Unremarkable

2010-01-30T19:58:00.000-08:00

Everything came back as "unremarkable". While, of course, I'm thrilled that there isn't anything inherently wrong with Niko's brain, it pulled the rug out from under us again. We were hoping to find something that we could correct. Something that we could treat. And explanation of some sort. Now we're back at square one again.

But Niko is maturing and dealing with things better than he used to. I can look back and see progress, and that's something to be grateful for. :)

Sedated MRI/renal ultrasound/blood tests

2010-01-20T10:16:00.000-08:00

Niko's tests are a go. My sweet boy is being sedated as we speak. Luke called from the hospital to say that all was well and Niko was doing really, really well. I could cry, I'm so happy and relived. They're looking to see if something in his brain is affecting his speech delays. Do I want them to find something? Do I want it to be clear? I don't even know what to pray for! All I know is that we're heading in the right direction, and I'm thankful for that.

Sedation Fail

2010-01-08T04:17:00.000-08:00

I took Nina to the neurologist on Tuesday. She's responding well to the seizure meds, so we're going to keep her on them for another year and reassess then. Funny how reluctant I was to put her on them at first, but how grateful I am now. I never want her to seize ever again.

Niko's labs came back and his calcium is high. We went in Wednesday for his sedated MRI/renal ultrasound/blood tests, but after an hour and a half in the hospital, they told us they couldn't sedate him because he had a runny nose and they won't sedate sick kids. Niko didn't have a cold; his nose was running because he was crying torrentially in terror, but they sent us home anyway and we try again next week. More waiting. More dread. Except now Niko is sick and running a fever, and I bet he won't be better by then. Yes, that's why I'm writing on this blog at four in the morning. I've been up with him for the last two hours.

I can't tell you how frustrated I was! I was enraged. The last time Niko's calcium was high, his kidneys started to fail. And they won't sedate him because he has a runny nose? Really?? Don't you think getting a good look at his kidneys and his, oh, I don't know, BRAIN maybe takes precedence? I have never had anybody refuse to sedate because of a runny nose before! Not ever. Is this where I mention that we've been trying to get these tests finished since September?

So check-in is Tuesday at 11:00. He can't eat or drink anything beforehand, which breaks my heart. His actual sedation isn't scheduled until 1:00, so he'll be tired, hungry, and terrified. I said, "His nose will be running next time, too. He's going to cry. Don't think that he'll magically get over this hospital phobia. What will we do the next time this happens?" They don't know. Maybe he'll be calm and they can do it. I told Luke that I wanted to line the hospital staff up so that I could knock some sense into them. He wisely tried not to smile. He's also taking work off so that he can take Niko to the hospital because I can't handle it again. I have hit my limit. I've become a human shield, standing up in front of my son and taking the blows from the hospital, from the school, from people at church. This time Luke is standing in front of me. My husband is truly my hero.

On a lighter note, my daughter thinks that she's a Disney princess. Mom gave her a trunk of princess dress-up clothes for Christmas, and she likes to bedeck all of us. Yesterday I walked in the door to see Luke wearing a tiara and holding a star-shaped magic wand. Nina was wearing three dresses, one on top of the other, and every piece of plastic jewelery that she owned. Within minutes I was in a Cinderella headband with my own wand. My kids are fantastic. Whenever I struggle to see the beauty in humanity, they pull something like this out of their hats. It's hard to feel bitter when Niko is kissing my cheek and Nina puts a giant plastic ring on my finger and then gasps, "Oh, pretty!"

Terribly Lucky

2009-12-30T00:46:00.000-08:00

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.

You Betrayed Us.

2009-12-17T23:11:00.000-08:00

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.

The Results

2009-11-04T15:59:00.000-08:00

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. :)

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

2009-11-03T06:08:00.000-08:00

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

Oh, You Are KIDDING Me!

2009-11-02T12:47:00.000-08:00

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.

Happy Halloween!

2009-11-01T00:14:00.001-07:00

The Report

2009-10-26T11:45:00.000-07:00

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.

What a week!

2009-10-22T09:10:00.000-07:00

(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!

I Am Just Not Brave

2009-10-07T18:22:00.000-07:00

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.

Newsworthy

2009-10-03T13:37:00.000-07:00

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. :)

Cherishing

2009-09-24T00:05:00.000-07:00

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.

Green Smileys

2009-09-14T16:19:00.000-07:00

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.

Sleeping

2009-09-11T07:01:00.000-07:00

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.

The Specialist

2009-09-09T10:11:00.001-07:00

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.

The Universe Tilts Sharply Part II

2009-08-27T12:47:00.000-07:00

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

2009-08-27T11:44:00.000-07:00

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.

I'm Big Brother. And an Essay.

2009-08-22T22:31:00.000-07:00

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

I Have a Story!

2009-08-21T18:56:00.000-07:00

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.

:)

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

2009-08-18T07:11:00.000-07:00

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.

Better Days Make the World Go Round

2009-08-11T16:25:00.000-07:00

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. :)

Hello, ER

2009-08-10T21:12:00.001-07:00

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.

S'okay.

2009-08-06T09:21:00.000-07:00

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.

The Goose Egg

2009-08-05T21:00:00.000-07:00

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?

I'm Going to be Happy

2009-07-24T19:31:00.001-07:00

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.

Things Are Looking Up!

2009-07-16T07:57:00.000-07:00

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! :)

Really, I Just Showed Up For the Music

2009-07-08T19:01:00.001-07:00

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. :)

It's Nina's Turn to Scare Us

2009-07-01T10:42:00.001-07:00

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? :)

Niko's Test Result!

2009-06-14T15:49:00.000-07:00

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.

A Lethargic Yay

2009-06-11T11:21:00.001-07:00

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. :)

Good news!

2009-06-03T11:01:00.000-07:00

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!

Today is a New Day.

2009-05-28T08:06:00.000-07:00

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.

This is Exactly Why We Hate Hospitals!

2009-05-27T17:00:00.000-07:00

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.

More Tests! Then We're Through!

2009-05-26T21:11:00.000-07:00

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!

I'm...Breathing?

2009-05-13T09:22:00.000-07:00

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!

"Mama?"

2009-05-11T16:44:00.000-07:00

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.

V is for Victory!

2009-05-05T14:58:00.000-07:00

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.

Rally The Troops! I'm Going In!

2009-05-04T07:39:00.000-07:00

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.

My Little Katamari

2009-05-02T15:43:00.000-07:00

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!

Sickity Sick Sick

2009-04-28T03:43:00.000-07:00

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!

What Is This Thing Called A "Blog"?

2009-04-21T15:31:00.000-07:00

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.

All About Niko

2009-03-31T20:07:00.000-07:00

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.

Why My House is Fun

2009-03-26T17:42:00.000-07:00

You can play yourself to sleep here. Yes, with ball pit balls!

My First Sewing Project

2009-03-24T18:57:00.000-07:00

Nina's dress!

Ten Minutes Worth of Stuff! Go go go!

2009-03-24T17:43:00.000-07:00

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!

Guess What I Did Today?

2009-03-18T01:57:00.000-07:00

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. :)

A Meme That You'll Really Enjoy!

2009-03-13T15:15:00.000-07:00

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. :)

End Experiment (And boy, am I glad!)

2009-03-08T17:48:00.000-07:00

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.

Experiment, Day Three. Work and Play?

2009-03-04T16:50:00.000-08:00

Holy smokes! What happened to my life?!

Monday was a day of optimism. "I can do this! I can get a handle on everything. Life will be beautiful, to wit, to woo!"

I said my morning prayers. I got Niko ready, brushed his teeth, kissed his head, and loaded him on the bus. I worked out with Nina underfoot. I started to clean the house. Wait! Play! I need to play! I will, I swear. After I do this. After I do this. After I do...I'm not feeling so well.

Tuesday. My kids are under the weather. Luke came home early, sick. I cleaned. Prayers. Niko, school. Quick but efficient workout. I have eleven pieces to read and critique. I did five. Off to my writer's group, hooray! My head's exploding.

Today is Wednesday. My kids are sick. My husband is sick. I...am sick. Everything is taking me 20 times longer than it should. Do I even know what balance is? Are there really 24 hours in a day? I don't believe it. Perhaps this is an off-week. But then, we've all been sick off and on for the last two months, so maybe this is how it's going to be for the rest of my life. I'm not accomplishing what I want. I was hoping that I would learn to prioritize. I was hoping that suddenly I would realize, "Oh, x, y, and z should totally be at the top of my list!" I expected everything else to settle to the bottom. And scheduling in play should decrease my stress, right? Right?!

Oh, Self, I'm laughing heartily at you. You're so sweet and so naive. But even though this experiment is going down in flames, I'm going to keep trying. I'm learning some things, and that's what experimenting is all about, isn't it?

I'm learning that I don't have any concept of balance. None whatsoever. I'm also learning that you can't divide it neatly into increments, and some things refuse to be defined.

I'm a mom. That's what I do, and it's work. It's also play, but I'd say most of it is work. There's laundry so the kids have clean clothes. There's meals so that they can be strong. There's bath time and nail clipping and disciplining. You can't tell me that disciplining isn't work.

There's also the lap cuddling and soothing. There's putting shoes on, and walks, and kisses. That's play, although 20 seconds ago I was disciplining. (Work.)

What about writing? Is it work or play? I enjoy it (sometimes) and it's hard (sometimes). Does that make it work and play? Researching markets is work. Writing forums are play. Unless it's something necessary, and then it's work. Unless I'm enjoying it, and it's play. Dig?

This is forcing me to look at my life, and it's been a while since I have done that. I still can't decide if my sadness is from what I'm filling my life with, or if it's something that I'm not filling my life with. It might be living in this horrible town. It might be coming from within. Maybe it's genetic. Maybe it's economic.

The best thing, though, is this realization: when I'm down, I struggle to break the surface. I'm very, very proud of that. I'm not the type of person to give up.

So the experiment marches on.

The Experiment

2009-03-03T10:02:00.000-08:00

I’m conducting an experiment that might be interesting. I have an amazing husband, two fabulous kids, security, and the assurance that I am loved. Which means that I should be happy, right?

Wrong. Wrong wrong wrong! Things seem to be harder than ever, and I can’t exactly place why. There’s no crisis, but there is the day-to-day grind. This grind is grinding me down. It’s taking off my sheen. So this is what I’ve decided to do.

I've heard that we need balance in our lives. Eight hours of sleep, eight hours of work, and eight hours of play. I look at that and think, “Pshaw. That was a different time. Things were more simple.” But do you know what? It’s something that I’m going to take a look at.

The experiment is two-fold: First I’m going to try to adhere to the 8-8-8 rule as much as possible. Of course, it most likely won’t be completely feasible, but I’ll do the best that I can. Work has taken over everything else, lately, and all work and no play makes M a dull girl. The second half of the experiment will consist of doing the things that I know I need to do every day. I need to exercise. I need to eat lunch. I need to spend some time outside and I need to ground myself spiritually. Right now I’m doing some of those things, or one of those things, or none at all. Can I fit all of the basics into my day if I trim out the excess work? Can "play" take up eight hours? Let's find out, shall we?

I started yesterday, so anybody interesting in joining is welcome! Maybe we can discuss it later.

Falling Off the High Wire

2009-02-26T18:51:00.000-08:00

I don't know how to balance. I want to be Mom, I want to be Special Needs Advocate. I want to be Writer and Wife and Young Women's Leader. Friend. Daughter. Sister. I want to be The Nice Person in Line. I want to be the Go-To Girl. I want to pick up the slack if you are unable to. I want to make your life better somehow.

I'm not insane enough to think that I can do it perfectly. I'm not even tempted to try! I just want to do my best, and shouldn't that be good enough? That said, I have cried every single day, at least twice, for the last four days. I'm used up. I'm worn out.

And...just as I wrote that, Niko fought his way into my lap, and Nina gave me a open-mouthed kiss on the cheek. I think they're telling me that I'm doing something right. :)

The Twilight Zone

2009-02-24T06:06:00.000-08:00

So why is it six in the morning, and I'm at the computer? With Nina on my lap? And Niko playing Katamari Damacy? What is going on here?

I can't explain it really, unless we all fell into the Twilight Zone.

For the last four nights, my kids have been popping out of bed at the strangest of times. Two? No biggie. Sleeping in until nine? Why not! So this morning Niko wandered sobbing into our room. He didn't want to lie down. He didn't want to be held. He wanted to start the dishwasher. At, you know, 4 AM. And his crying woke Nina, who has been begging for Winnie-the-Pooh's 1-2-3 for the last half hour. So 4:30 and the house was in full swing. We all bundled up and dropped Luke off at the bus stop, in case I get another call from Niko's school. He acts out when he's tired, so I'm prepared. And yes, he's definitely going to school! Being tired does not excuse us from our responsibilities. I have a full day and then Young Women's New Beginnings tonight, and I'm sure I'll be bleary-eyed, but present.

I was up until 1:00 working on queries and things that I can't do when the kids are awake. Printers and unblemished paper are a siren call for my kids. I had more to do, but the printer ran out of ink.

Typical. :P

Celebrities

2009-02-23T10:53:00.001-08:00

These are my thoughts on celebrities: I'm tired of them.

I'm tired of actresses thinking that they're political gurus. I'm tired of actors openly attacking religion. I'm tired of rock stars and their lame behavior. I'm tired of the excess, and the loudness, and their belief that somehow "the little people" care about what they have to say. Their reality is not my reality. I'm sorry if economic times are tough and they have to tighten their belts by waiting until next week before buying their fourth house.

But I love to see their gowns. :)

Good news: It's raining, which always makes me happy. I think that I have become more Vegas than I previously thought, because anything below 70 degrees makes me run for a sweater. (I know, right? And we lived in the land of ice and snow!) It's 60 degrees right now, and I'm bundled up like an Eskimo. Oh, the shame.

Even better news: My old Seattle cohorts got together to recreate our old discussion group. Since we've all scattered to the four corners of the earth ("Scatter! They can't get all of us at once!") they've set it up online. I can't wait to reconnect with these down-to-earth, talented, intelligent women. They're amazing, and I'm giddy to be associated with them.

I received three agent rejections in the last 48 hours. So not only do I have rejections from magazines, but now I have agent rejections, as well! Double the rejections! It's a bit disheartening, but I really believe in my story. It's a tale of hope. Good things are also coming from this, as always. Nothing has ever come easy, and I've always learned a lot from working my way through and paying my dues. This is what I want the most, and it's worth the effort. I know I'll appreciate it more after the sweat and the toil.

The other thing is that I'm getting this amazing support. From Luke, of course. From my friends. From my writing group and the writing and editing community that I've hooked up with. They tell me to chin up and check out different avenues for me. These are the nice things that I'm going to print out and paper my walls with. Rejection is wearing, but people are good and genuinely want to help each other out. I'm grateful. It feels like a net underneath me, when the rest of this is so frightening.

Oh. No.

2009-02-21T03:56:00.001-08:00

Hello, I am alive. Yes, it is true! It is also true that it's four in the morning and I'm posting on my blog! Why? Because I am absolutely nuts.

Niko crawled into bed with us tonight, and I can't go back to sleep. I also realized that when I step on the pergo in our bathroom, I'm feeling wetness from between the slats. So I've been looking up "water damage" and "replacing pergo flooring" and "why, oh why, does this sort of thing always happen to me?!" No, I didn't really look up that last one, although I did google "Run away, screaming," and then hardy har harred for a while because of it.

The nurse's office called the other day. Niko had bit that same aid (remember the black eye two weeks ago?) through his shirt and had broken the skin. They called me to come get him because he refused to let them rinse out his mouth. Naturally, I had the "I don't have a car, let me make a zillion phone calls!" panic (this is where my mother interjects A Loving Silence Heavy With Meaning, but no, we can't swing another vehicle at this time) and since Luke was in town, he came home. We tried to meet with the Principal, but she's out of town at the moment.

Here's the thing. Niko has never hurt himself by headbonking, and suddenly there's a "headbonking incident" that gave him that nasty shiner. And then he out of the blue bites this same aid less than a month later? He has been behaving so well! Not saying that this aid is acting inappropriately with Niko, but obviously something is going on. Perhaps he's acting in a way that Niko just doesn't like, or Niko just doesn't like him, (which I've never seen before) but the end result is that only one new thing has been introduced in the last few weeks, and it's (gasp!) this aid. I don't understand the Principal's policy of shaking up the status quo, which is why I want to talk to her. They switch aids, and my son's coming home looking like he's been scrapping in the schoolyard. When the nurse told me that the aid had to go to Quick Care because of the bite, I was sorry, of course. I laud anybody that chooses to work in a school. But the aid is an adult. Niko is a five year old boy who doesn't fully understand at the best of times. I think he's the one that needs me to speak for him.

I say this courageously, but inside I'm dying. Please don't let this be last year all over again. I don't know if I'm strong enough to go through it a second time. It's my worst nightmare.

On the writing front....well. Things were going well, and then not so well, and then I made a rookie mistake because I have too many things on my plate and I'm completely overwhelmed. Hence "Running away, screaming." More about that on www.abrokenlaptop.wordpress.com. It's just painful, really. But I'll learn from it, yadda yadda .

Oh, and I ran out of Coke today, but only for a few hours. My weeping and wailing and gnashing of teeth prompted my husband to haul the family out to the grocery store. Now I have 10 liters of it, and I'm very, very happy. I like to open the cupboard and see my back-up bottles standing sentinel in their bright, shiny glory.

Goodnight, er, good morning, all!

Hello, I Think That I'll Explode You Now.

2009-02-10T16:40:00.000-08:00

"Do you remember the Great Marshmallow Fiasco of 2009?"

"Do I?! Man, I barely survived it!"

Corn syrup? Check. Unflavored gelatin? Check. Explosions involving glass bowls, lethal projectiles, and delicious marshmallowy goodness? Check, check, and check.

The best part about this whole thing was that just seconds before the explosion, I asked Luke to man the egg beater while I ran off to check the recipe. So after the sound of broken glass diminished, there was my sweet husband standing there in his business suit, covered with glass and marshmally goodness. And then he starts to laugh. Yes, ladies and gentleman, I married a man who became the Stay-Puft Marshmallow Man, and instead of freaking out, he laughed. He left me with cleanup while he ran to his meetings, for sure, but he was still guffawing as he ran out the door.

That said, I'm still undaunted. I'll try the recipe again later when I have the time. Maybe Thursday or so? I'm like a mad scientist in my lab. Failure? What failure? There will be homemade peppermint marshmallows in my near future, by jove!

So Now It's Flooding. And That's Alright, Too.

2009-02-07T13:01:00.000-08:00

I love the rain! It makes me feel like I am home. I don't necessarily love the flooding in the streets, but it's manageable. I'm drinking hot chocolate and trying to figure out computer issues. All in all, not bad of a day. I'm sad that I'm missing my sister-in-law's baby shower (We love you, Ali!) but Luke had to go in for training, and we couldn't make it up north. Sometimes these things happen.

So Niko's brandishing a kitchen ladle and watching the rain. Nina is sick and down for a nap. I'm taking a break from query letters (curse you, query letters!) and I'm looking up homemade marshmallow recipes. I despise cooking, most of you know that, but baking and treats are completely different. In some other parallel universe, I'm a chocolatier.

Niko's eye is looking a bit better. I can't tell you the feelings that it triggered in me, seeing him come home hurt like that. I was flashing back to the abuse investigation from last year. I was talking to my friend and I told her, "I don't know if I can do this again!" She caught me in an extremely vulnerable moment, to say the least. And she said, "You can. And you'll probably have to. Niko is most likely going to be a target for the rest of his life." Well, ouch. But so true. She's absolutely right, and she said what I needed to hear. So thanks, Jan! I can pull myself together when I really need to.

I received some positive feedback on "The Boy Who Hangs The Stars". It's a tough thing, because it's in print (which is more desirable) but then nobody can read us unless they buy the anthology. I'm sorry in a way because I think it's a lovely story about friendship and hope, and I wish that you could all read it. But at the same time, not a lot of people buy books anymore. I could wax on about the sad state of the economy and how people don't read like they used to, blah blah blah, but who is really interested in that right now? Not I. Anyway, it was nice to hear that somebody liked it, even if it wasn't his usual genre. It made me smile a little to think of a huge bear of a man, a horror writer, pawing through a story about stars and feathery wings. Just goes to show that we can all use some whimsy, yeah?

The querying is tedious. (More about that at www.abrokenlaptop.wordpress.com.) But as soon as I get it going, I think that I'm ready to start thinking about another novel. Do I finish my demon one? Do I rewrite my second in the Ray series? Do I start the third, which I've been thinking about lately? Or do I veer off into something completely new and different? It's delicious. It's getting me excited about writing again!

A Land of Wonder

2009-02-05T21:41:00.000-08:00

This is my front yard, and it makes me happy.

I wrote more at www.abrokenlaptop.wordpress.com.

Headbonks and Black Eyes

2009-02-04T13:53:00.001-08:00

Another day, another phone call from the school nurse. Actually, it's been a while since the last few phone call fiascoes, where I think that Niko is dying and actually he needs a diaper change, or whatever. Apparently they switched aids today, and I have no idea why they would do that. Niko is like most children: routine is paramount. Switch it up and he goes crazy. In this case, crazy meant headbonking a new aid who wasn't savvy to his tricks, and said headbonking resulted in this black eye.

I completely feel that this school is different than his last school in terms of abuse. Or "possible abuse" or "suspected abuse" or "alleged abuse" or whatever it is that I'm supposed to say, since an investigation was conducted, some discipline was meted, and all of the rest that they couldn't tell me due to confidentiality. His current school feels very different to me, and they're quick to call if they feel it's necessary. (Twice this week, in fact!) But one thing that the school district dragged me over the coals for was not taking pictures of the bruising. So I've learned. Do I think Niko is being abused in his new class? Not at all. Not in the least. But here's a picture, anyway.

That said, I'm working on a rather gentle new story right now. Its working title is "Iris" and it's unfolding a bit differently than I had originally intended, but I'm pleased with it. Novels are a lot of fun, but short stories are beautiful, joyful things. Their brevity is refreshing.

I'm also a top ten finalist in the OTP writing contest! Woo hoo! If I win, I'm buying a sewing machine! If I lose...I'm still saving up my writing money to buy a sewing machine, so yay! As always, I cheerfully yammer on at http://www.abrokenlaptop.wordpress.com/. I also had a piece go up today! Avert your eyes from some of the others if horror isn't your thing. It isn't mine, necessarily, but most of the pieces were tongue-in-cheek.

Oh! And this made me happy! Go see my friends' band site! http://www.athalastakesaim.com/. They're really fun to listen to, but even more amazing to watch. Read their blog. Wait, where is it that they're sending you? That's right! Hobnobbing with rockstars, people. :P

White Winged Butterflies

2009-02-01T13:50:00.001-08:00

Niko and I have some sort of monstrous cold (As always). Luke and Nina managed to slide through relatively unscathed, knock on wood.

So I've been drinking hot chocolate and looking up butterflies for a story that I'm revising. I'm particularly interested in the Appias Albina, because it's wings are so translucent and lovely in the pictures that I'm coming across. Simply stunning. Do yourself a favor and look them up. I'm so pleased that such things of beauty exist in this world.

Today...

2009-01-30T12:15:00.001-08:00

I'm going with my husband to see Atlas Takes Aim and Hello! Astro play. Rock on!

I talked to an author for half an hour about querying, and received some awesome advice. And he didn't bite. www.abrokenlaptop.wordpress.com

Niko crawled on my lap and cried before climbing carefully onto the school bus.

I decided to jettison the negative. Sometimes things. Sometimes people.

Nina, wearing a pink dress and pigtails, tried to dress Jack Skellington in her purple heart pajamas. She also carefully combed his bald, skully little head. I think I saw him smile.

I'm going to drink Coke Zero until I explode, because I've earned it.

Two Ships Passing in the Night

2009-01-29T12:14:00.001-08:00

That's what Luke called us. As soon as he gets home tonight, I'm running for the door. He'll actually be running for the door, too, but he has to bring the kids along, since Leader Training takes precedence over Church Ball, the Brawl that Begins with Prayer. Maybe if he has the kids, he won't manage to get hurt this time.

Actually, I'm not holding out too much hope for that. :P

I've been throwing myself into researching agents lately. It's hard work, quite honestly. It feels like I'm in college again, working on research papers where you have to familiarize yourself, and make notes and document. It's something so daunting, but it's becoming easier. I'm definitely getting a handle on it. I want to work hard and make sure that I'm picking agents that fit well so that I'm not wasting anybody's time.

Nina's coming down with a cold. She's pink cheeked and runny nosed and super snuggly. "Uppa, uppa," she says, and holds her arms out. I realize that I'm missing Niko right now. He has been so sweet lately, really taking on the big brother role. Nina goes to put something strange in the dryer, and Niko will take it from her and bring it to me. Never mind that just three weeks ago, HE was the one that wanted the tennis ball in the dryer, oh no! He's outgrown that. He's a man now. Tennis balls don't go in the dryer. He's become the Dryer Nazi.

Still no speaking. Still no sounds. I'm frustrated at his regression. I'm frustrated that nobody has brought it up to me. Where are his "mamama's" and his "dadada's" that he used to do at 18 months, but he won't do now? I dislike the idea that he is "trapped" in this body. In fact, I fight against that quite a bit. He expresses himself. We can figure out what he wants. But maybe I'm in denial. Maybe he really does wish to tell me things that I can't figure out. Maybe he saw something at school that he would like me to explain, but he can't ask me about it. It's too much to think about sometimes.

So I'll focus on the fact that he is extremely loved, and I can tell that he knows it. Speech will come; we'll just have to keep working and praying and hoping.

I Hate Mornings.

2009-01-26T08:27:00.000-08:00

This is how my mornings began the past two days.

Yesterday was The Dream.

Me: Luke, I just had a strange dream.

Luke: Mmmm.

Me: I was on a tour bus, and there was a kennel with little tiny dogs and two kittens. Kittens, Luke.

Luke: Kittens.

Me: Yes. Kittens. Anyway, this dark gray kitten escaped, and I befriended an angsty teenager while trying to find it. And I open this door, and this room is full of kittens. Full. This woman was buying them by the bagful. Bags of kittens. I was trying to locate this particular kitten in this roomful of sweet, warm, cuddly, playful baby kittens.

Luke: That's...not anything like what you usually dream.

And as for today...Niko has been crawling into bed with us at night. I'll wake up with his bony elbows in my side or he'll have clawfuls of hair. Last night he crawled in with us.

Then he threw up.

Stranger Valentines

2009-01-22T12:06:00.000-08:00

My friend came over today, and although we see each other every Sunday (she plays with Nina while I teach the girls in Young Women's) we haven't had a chance to catch up in a Very. Long. Time.

It was a lot of fun. We talked about adoption and the school system and the election and Williams Syndrome. We talked about glucose allergies and her Master's classes and music and writing. We discussed Niko being five years old and never having said a word. We cheered her son about being four and playing the violin. It was really very nice.

In other news, it's almost Valentine's Day! And you know what that means!

"Yay, it means that you'll send V-day cards to us, trying to make up for the fact that you never sent Christmas cards!" you say.

Well, yes, that too. (And with a family picture!) But most importantly, it means cracked Valentines in The Stranger. I can hardly wait.

I don't have wings! Of course not. You're a boy!

2009-01-21T19:42:00.000-08:00

We're all a bit under the weather and we're hanging around watching The Dark Crystal. I haven't seen it in years and years, but it's amazing how many lines I remember. This is my childhood, right here. Kind of opulent and whimsical and elegantly dark. This is a joy.

I have been SO frustrated on the writing front! Comes and goes, highs and lows, etc etc, but it's true. I've been mentally scattered, and it has been suggested that I keep a singular goal in mind. But if you want to hear about writing, there's always www.abrokenlaptop.wordpress.com.

After The Dark Crystal, I'll have to watch Labyrinth. Not while the kids are around, though, because Brian Froud in all of his creative splendor is still a little too scary for them. My gosh! When I was a kid? The Skexis with their whining "Hmmmmm" and bony bodies were mad crazy! Now I think that Jen looks a lot like Michael Jackson. Which...is its own kind of scary.

I'll be perfectly honest.

2009-01-20T18:54:00.000-08:00

Sometimes I come to this blog site just to listen to my playlist.

That is all.

A Poem!

2009-01-15T10:07:00.000-08:00

I took some images directly out of my Record of Dreams and made it into a poem. It was just accepted this morning, and is already running live. Rock on!

http://abrokenlaptop.wordpress.com/

But They're Healthy Cookies!

2009-01-14T22:59:00.000-08:00

Niko's teacher sent home a note saying that he and Cookie Monster went down the slide five times. He has never gone down the slide at school, so "Hooray Cookie! Hooray Niko!" she wrote. I'm very proud of my curly-headed little boy.

After Nina's bath, I braided her hair into two tiny, inch-long braids. They were very sweet. Luke is still her favorite, but I'm a very close second now, which sure beats being chopped liver.

Today Luke informed me that the Nevada Nuclear Test Site is bigger than Rhode Island. He's full of cool little tidbits like that. We were discussing whether people on the east coast had the same concept of space that people on the west have. Growing up where I did, I'm very comfortable driving forever and seeing...nothing. The isolation isn't oppressive like it feels to some people. It's just comfortable and natural.

I currently have 39 pieces submitted to different magazines and anthologies right now, and if I can do one more tonight, it'll be a nice and even 40. But now that Luke is asleep, it might be a wonderful time to make some oatmeal chocolate chip cookies! He is being very good and eating delicious and healthy food. I'm craving sugar like a demon. But if I throw oatmeal in there, well, then it's practically health food, right?

I thought so. ;)

Things That Have Gone Wrong.

2009-01-12T08:37:00.000-08:00

1) Crack in the windshield. It needs replaced.

2) Garage door mysteriously broke. It will not open.

3) Car died. It is now resurrected.

4) The fan and light blew out in our living room.

5) Water is now coursing out from behind out our bathtub faucet. This looks bad.

Things That Have Gone Right:

1) Almost everything else

Stand Back! That Little Girl Is Armed!

2009-01-08T11:41:00.000-08:00

With a brush! Nina is constantly brushing her hair, Niko's hair, and my hair. Somehow Luke manages to escape her incessant grooming. Sufficeth to say that we're a houseful of beautiful, shiny haired creatures, thanks to her scrupulous care.

Speaking of hair! My friend is coming over tonight to help mine. I have...too much hair. Wild hair. The type of hair that deserves to be punished for its wicked deeds. My friend, former model and just devastatingly beautiful, perked up. "That's what my hair is like!" she chirped. (She's lying, she has to be lying!) "I'll come over, take the bulk out, and we'll style you like a pin-up." Well, all right! I'm looking forward to it. It'll be my reward for cleaning the house and doing productive writing things!

Speaking of, I have a new story that went up today. You can find the link at http://abrokenlaptop.wordpress.com/. It's a simple, sweet, and sad story. I had sent a poem to the editor of the magazine, who politely rejected it but asked for a short story instead. I sat down and wrote this right away, and I'm quite pleased with it. It makes my heart hurt a little.

Also, feel free to leave a comment on 52 Stitches, if you like. You certainly don't have to, but it's always fun to see. I'm trying to leave comments back, as well. Good cheer and good will make the world go 'round, after all.

Yesterday was a particularly lovely day, and I'm not sure why. I took care of the house. I critiqued two friends' stories. My children were no less obnoxious than usual, but I pulled them onto my laps and just loved them. They gave me sloppy, open-mouthed kisses. They loved me back. Luke came home and we were sitting there all snuggly-like, with a batch of fresh cookies cooling on the rack for him. The kids went to bed well, and Luke and I watched an anime. Not his favorite, but he didn't mind, and it made me happy. I told somebody the other day that life hands out shards of happiness, and it's up to us to cobble them together. I truly believe this.

Lots o' Randomness!

2009-01-05T09:08:00.000-08:00

Ahhh, winter vacation is over and it's time for life to get back to normal. Who ever thought I'd be the kind of girl to say that? I'm extra thrilled that Niko gets to go back to school, which he loves. I wrote a catch-up note to his teacher, telling her all of the things that Niko picked up over vacation. He's learning to share. He's learning how to hug his sister without headbonks. (intermittently)

I received a comment on an old post yesterday that made me laugh. It was this post, comparing Niko's fits to a banshee on crack. It's still accurate. And the comment was timely, because on Saturday we took the kids to a pizza place that happened to have a little arcade area in the back. You know, the kind of place that we never frequent anymore.

Nobody loves a good arcade more than I do (hello, our daughter is named Nina. Tekken, anybody?) but Niko caught a glimpse of the flashing lights and went insane. Back arching, eyes squeezed shut, body tensing for what was going to be a long, drawn out battle. It was a noisy place, but he cut right through it like butter. I turned to Luke and I said, "You know, I am really embarrassed right now," and he nodded, teeth grit as he tried to hold Niko to calm him. Nina laughed and tried to feed him pizza. That girl is a rock, I tell you.

The pizza fiasco came after Luke and I ran a 10k that morning out in the desert. Correction: Luke ran it. I did my very best, which consisted mostly of trudging up the gigantic hills and running down them, trying not to die. Luke came back for me with a power bar so that I didn't turf it by the side of the road a mere two miles from goal. That's why I love him. It was so cold! I ran the entire thing in my hoodie, and didn't even pull the hood down until mile four. I was still getting over that awful cold that kept me in bed on New Years, and I have to admit that I started out in a pretty bad mood. Hence the picture, yeah? But after the race we were happy and tired, and we went out for breakfast, and a good time was had by all. I think that running makes me happy.

Yay, you can buy the anthology that I'm in online, now! They mention my story in the blurb, and I'm pleased that it's blurb worthy. It's all on A Broken Laptop.

I'm sorry if you're annoyed that I constantly send you off to my site. But it has a separate counter, and it's helpful to see how many people actually check something out. I'm sure that one fine day it can be useful for marketing purposes and all of that, but for right now, it's all about, "Yay! Somebody actually came to look, hooray!" It really makes my day. :)

An Essay

2009-01-04T09:16:00.000-08:00

I wrote a short essay about motherhood, writing, and Williams. I posted it on my site, if anybody wants to read it. It's basically a day in the life, and I wrote it back when I was getting calls from Niko's school everyday.

A Broken Laptop

Also, I have a new story up today, and another one up later this week. Hooray!

I Feel...Like I Was Repeatedly Thrown Against A Velcro Wall

2009-01-01T11:59:00.000-08:00

That lipstick? Stayed on all night with one application. OH YES.

Happy New Year, everybody! I was reading the newspaper this morning, and apparently I am out of the loop because I don't detest 2008. It's a year, it's a measurement of time, and I didn't feel that it personally erupted from its hidey hole to try and devour me. Call me strange.

Yesterday was a day of insanity. My friend Sarah and I were helping to throw this huge New Year's thing for the kids in our stake. We work with the Young Women in our church, and hey, this is Vegas, and where are the kids going to be if they're not with us? So we planned, and decorated, rang in the New Year and then cleaned up. It was awesome!

We had a dance, (of course) and movies playing in two separate rooms. We had Guitar Hero going on, and a couple of wii consoles set up. We had a living room area by the dance, so whenever the DJ said, "Girl's choice!" all of the girls could zip over to the couches and look bored. We had giant inflatable obstacle courses that doubled as jump houses, and a Velcro wall. Yours truly spent quite a lot of time flinging herself to the wall, and it was great. There were fresh cookies and french fries, candy and bottled waters, and after screaming and yelling and blowing on noisemakers at midnight, we had a breakfast for everybody's families. It was all free, and I think the youth really had a great time, as did Sarah and I. It was fun to just dance. Luke hates dancing, and we haven't gone since...oh, sheesh. His old frat dances, I guess, which I totally hated. I had forgotten how freeing it is to just close your eyes and dance. I'm thinking I'm going to take some girl friends to check out the clubs.

Anyway, yay for us. They had triple the attendance from last year, and I think it's good for the kids to see the leaders actually doing things with them (dancing, racing, Velcro wall) instead of sitting on the sidelines and watching. Sarah and I were the only leaders I saw that actually participated in anything, but then, we're a good ten/twenty/thirty years younger than the other leaders. We're old enough to be big sisters, not mothers and grandmothers.

The only sad thing for me is that Luke and the kids are out of state with family. Although I love time alone because it's so precious, it was hard to come home on a holiday and find an empty house. It was freezing, and I crawled into Luke's pajamas and shivered in bed until I fell asleep. Today was supposed to be My Big Writing Day, sans distractions, but I woke up with this horrible cold. In fact, I'm still in bed with my out-of-control hair, and just might not get out of it today.

Happy New Year. *tweet*

Aren't We Pretty?

2008-12-29T18:56:00.000-08:00

Merry Christmas, ho ho ho! We had a wonderful holiday, full of Grandma and Grandpa and lots of presents. Riley couldn't make it because of a storm, and although we missed him, we were glad that he wasn't smashed to smithereens in the snow. So it's all good. :)

The kids were insane today, wondering why I was the only one home to entertain them. Where was everybody else? I'm trying to ease us back into our routine, but it's difficult. Soon Luke and the kids will head off to join his family for New Years. I'll be staying behind because I'm helping to throw a New Year's Dance for the Young Men and Young Women of our church. I'm sad that I won't be with my family, but the teenagers of our area really need this. Where else are they supposed to be? Yeah, that's what I thought. ;)

I queried an agent of RunStarGirl today. Originally I was going to go the small publishing route first, but a few of my friends suggested that it was agent time. Which is terrifying, quite honestly. But it's a challenge. And I am all over challenges, mmm yes.

It's Christmas Eve Eve!

2008-12-23T10:44:00.000-08:00

Last night we went out and bought stocking stuffers with the kids. "Why don't you leave them at home?" you ask. Because. It's more fun this way. It's trickier. Luke takes a cart and a child, and I take a cart and the other child, and we zip this way and that shrieking, "Don't look in my cart!" "Oh yeah? Don't look in my cart, either!" and try to be all stealthy as we buy last minute items for each other. Most of you wouldn't expect this, but Luke gets all wacky at these shindigs. I talked him out of buying Dad a Homer Chia-Head (you can thank me later, Dad), and we stayed out too late and it was wonderful.

I spent so much time editing yesterday! I hate it, no, I abhor it, but I worked hard and I'm more than halfway through. In fact, I was up until about 1:30 last night working, and Niko stayed up with me for quite a while, playing happily with our electronics. When he was tired, he left and I heard a closing door. When I finally went to bed, I was dismayed to see that Niko was lying in my spot with three stuffed animals and a fistful of peanut butter toast. I grabbed a blanket and headed for his room, where I slept in Cookie Monster splendor.

We're going to my parent's home tonight. It's a seven or so hour drive, and we're not leaving until Luke gets home at 5:00 tonight, so it's imperative that we get on our way ASAP. This is a place of chaos. I'm packing. I'm wrapping. I'm tripping over ribbon and trying to keep the kid's from opening the neighbor's gifts, and attempting to leave the house in something other than shambles. Can I do it?

Yes I can.

"The Boy Who Hangs The Stars" is coming out very, very soon. In fact, they said that my contributor's copy is in the mail, so woo hoo! That was a few days ago, so perhaps it'll be there today, and that would be exciting.

Merry Christmas, everybody. Be well. Know that I love you.

We're Christmasing!

2008-12-20T12:35:00.000-08:00

Finally. And it's all thanks to Luke, who put up the village last night (we get him a new piece every year for our anniversary. We've been married eight years now, yay!) and is putting up the outside Christmas lights as I type. Hooray! Which will make us the third house to do so in our little neighborhood, because we're apparently a bunch of grinches. Even the mysterious festive note taped to the communal mailbox ("Let's all hang lights on our house because it will be fun!") didn't move anybody. It just made us arch a brow and try to figure out who was stalking our box.

It doesn't feel like Christmas. It feels like work. It feels like stress, and it doesn't have anything to do with the holidays. It has to do with life and all that jazz. It has to do with Grinchy McGrinchersons everywhere. Here's my solution to it: if you're going to be crabby, people, just stay home. :)

That said, things are going swimmingly on our front. Niko is obsessed with my video game, the labels inside of our jeans, and locking the front door. Nina has become a flasher, and I'm trying to instill in her the idea that "Modest is Hottest!" but it's not working. She's cracking me up. Luke is cheery despite old man stiffness, or whatever it was that befell him, and I'm exhausted to the point where I was slurring on the phone. (Sorry, Jan!) But writing is going well, and I'm happy. I kind of felt out where I want to send RunStarGirl, and I really enjoyed the people that were involved with that particular press. For one thing, they understood my references, and that's gold. As always, more about that at
here!!! It's fueling my confidence.

It's Snowing in Vegas!!!

2008-12-17T15:29:00.000-08:00

Cars are running off of the road in gleeful ecstasy! Hot chocolate is being doled out in portions previously never heard of before! All is well with the world.

Niko came home from school today with construction paper antlers (made out of his handprint) and a dab of red fingerpaint on his nose.

"He's Rudolph," the bus driver explained, and this was quite a reasonable explanation, and made me happy. I left the paint on so that Luke can see him. He's lying on his back killing my characters on my PS2 game (Final Fantasy XII, the most boring FF game that I have ever, ever seen!) and Nina is tottering around on her pretty little legs, practicing this walking thing. This girl is a dancer, there's no doubt about it.

I have hooked up with some in-town writing friends, and it's been really nice! Previously it was only June and I, and now there are three more! My cold, black heart is going to burst with joy, I just know it. And wouldn't that be a splendid way to go?

I'm watching the snow fall. It reminds me of home, and I can't wait to spend Christmas Eve with my parents. I finally overcame that wall that I had been beating myself against, whether you call it "Writer's Block" or "a quiet time" or "an incubation period" or simply "a darkness of the soul" where I wanted to create, but couldn't. It's like being told that you're going to eat oatmeal for every meal of every day for the rest of your life, or that the world will be colored beige from now on: you know that you're going to survive but you're not really sure if you want to. Anyway, I reported on my success and the reasons behind it at http://abrokenlaptop.wordpress.com/

Hello, I've Met My Match!

2008-12-14T21:14:00.000-08:00

I think that maybe I have been taking too much on. My body has been crying out things like, "Stop!" and "Give me rest!" and "I hate you!" for a while now, and today I just sort of hit a wall. Dizzy, feverish, hot and cold, only there wasn't anything I could do about it because it is Sunday, and Sunday is NOT a day of rest, I don't know who says that. Oh, yes, that would be our Lord. But it was 7:30 and Luke had spent the entire day in his suit, he was so busy. I finally called in sick to a meeting that I should have been at, but it seriously wasn't going to happen. Also, I started taking my medicine again, because I so desperately want to feel better, but it...always makes me more sick. Gr.

I have a lovely list of library books to read! Neil Gaiman's Fragile Things: Short Fictions and Wonders, and Roberto Bolano's Nazi Literature in the Americas. Something by Jonathan Kellerman, whom I still enjoy. An off-the-wall thriller written by a woman whose name I can't remember. I haven't had a chance to crack a book since I checked them out, but soon, I hope!

It never feels like Christmas in a land without snow, but I hear there might be a massive snowstorm hitting...wait for it...wait...Las Vegas! Which would just be awesome. I'm comfortable with it, I can drive in it, and you won't find me on my knees sobbing because I don't know how to navigate to the store. Maybe it'll make it feel like Christmas. Maybe it'll stun everybody enough that they'll be forced to take a break.

I met with some friends yesterday at an internet cafe and we were all writerly. Kind of. I had a hard time forcing myself to work because my brain was all over the place. Somebody asked me a question, and I was looking at his face when suddenly I realized that the last words out of his mouth had that inquisitive cadence, that they had gone up at the end of the sentence, and that means that a question had been asked.

"I'm sorry, what did you say? I was thinking about rabbits," I said (I actually said!) and I hope they don't kick me to the curb because I can't keep my thoughts in my thought basket sometimes.

Also, hooking up with old friends on Facebook? So awesome.

Daddy!

2008-12-08T22:46:00.000-08:00

This is my favorite picture of my father. He is wonderful and kind and generous, but people are on their best behavior when he's around. He swooped in to rescue me for a few days, and the kids are in seventh heaven.

Insanely busy, but I have some good writing news! Rock on! I talk about it here.