Monday, October 26, 2009

The Report

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

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

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

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

Have a good one, everybody.

Thursday, October 22, 2009

What a week!

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

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

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

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

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

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

Have a good day, everybody!

Wednesday, October 07, 2009

I Am Just Not Brave

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

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

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

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

Saturday, October 03, 2009


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.  :)