Thursday, September 24, 2009


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

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

Monday, September 14, 2009

Green Smileys

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

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


Friday, September 11, 2009


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

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

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

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

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

Wednesday, September 09, 2009

The Specialist

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

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

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

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