The Best Part About Marrying Young...

...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

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

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

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

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!

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.

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

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!

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!

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

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!

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.

It just is.  I talk about it HERE.

Unremarkable

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

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

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!"