Odds, or, what you wish for

We still have a letter in James's file from our July 2006 visit to the genetic counselor when Julie was pregnant with him. We had had a minor blip on a 20-week ultrasound, then a second minor blip on the follow-up perinatal ultrasound. But after some more blood work and a meeting, we got our 2 1/2 page letter, which said in the Summary and Results section at the end:

"Your quad screen gave you a risk of 1 in 2,614 that your baby would have Down syndrome."

I remember e-mailing a colleague of mine around that time about a book I was reading, a Philip Roth novel called "American Pastoral," a gut punch of a book about the American dream going horribly wrong for a man and his family in post-World War II New Jersey. I remember telling her that, reading the book and worrying about the ultrasounds and test results, I was hoping hard that we wouldn't be the "1" in the odds—that even though I usually wanted my kids to stand out, to be exceptional, that this time I was hoping to be just like the other 2,613 cases where everything was "normal."

That's how I was thinking before James. This time around, we knew going in that the risk for another child with Down syndrome was 1 in 100.

We had a perinatal ultrasound in early August, standard this time around because of Julie's age and James, and met with another genetic counselor. I remember asking her how many families she had seen with two children with Down syndrome in her career—she said one, in 17 years.

A few weeks later, the word came back that our odds were 1 in 1,300. We first heard that in a phone call from the counselor we had met with—she was very excited to deliver the good news, since from her perspective the odds had decreased by a huge number. Of course, from our perspective, that meant that they were double what they had been in July 2007 with James—which we noted with wry laughter.

Another test on the blood, though, kicked out another number, this one dated September 2: 1 in 3,500. Still, if we learned anything last time, we learned that the numbers don't really matter, and that none of us would know what we were talking about until the baby arrived and let us know itself.

By the time our 20-week ultrasound rolled around on October 1, I wasn't thinking about odds very much any more, but I knew that 20 weeks was where our worries started last time, and that I'd be hoping we wouldn't see another little thing like the thing we had seen then. My friend Tim asked me at work the day before the ultrasound if we were nervous, and I said that we hadn't been (or I hadn't been, anyway), but that I thought I'd start sweating it pretty good when we actually got into the waiting room.

A funny thing happened at the ultrasound, though. I found that, even while I was holding my breath to see if they'd find chorid plexus cysts, or an echogenic foci, I was having another series of thoughts: what was I wishing for? A healthy baby, of course, just like with the other three. But I also knew that I was wishing again not to be the "1," though I wasn't saying that directly. I was wishing that the baby wouldn't be James. When the genetic counselor was calling with her happy news, she figured it was happy news because the baby wouldn't be James.

I'm certainly not saying that I, or the genetic counselor, was doing something wrong or insensitive. I think we were both—parent and scientist—having pretty normal, understandable thoughts. But I started to realize that I had never really questioned the implications of those "normal" thoughts before.

I have been thinking that we don't really know how to deal with the idea of the "1" when it's still an abstraction. And in the abstract, it seems like it would be better if things went one way rather than another. It certainly seems like it would be easier some days when James is pulling hair or has just thrown his bowl of pasta across the room, or when we start to worry about his life too far into the future.

But of course it doesn't really matter what we want—we're going to get what we get and not throw a fit, as the kids like to say. And when I was sitting in the ultrasound room and looking at the little person on the screen, it wasn't a "1 in x"—it was just a one, whoever he or she is going to be, just like James, and Luke, and Megan. I felt kind of bad for hoping that this one is some other bigger, safer number. Well, that's not quite right—I felt like I didn't need to worry so much, that I could let it go, that there is a new normal I'm learning, and will probably always be learning—and James is the one I have to thank for that.

Play ball!

James has been doing great lately—he has made noticeable strides in how he interacts with the people around him. He loves playing repetition games—he'll come up and swing-clap and then when you copy him do three little dainty claps and giggle when you copy that too. He likes to fly; he'll come up to me and pull on my leg until I ask him if he wants to fly, and then he'll try to make an "f" sound (it sounds more like blowing, or, sometimes, a soft "p" sound), and when he gets it I'll fly him in the air. A few weeks ago at cousin Beau's birthday party at Drace Park, he made a beeline for the playground, but he didn't just want to do the swings. Instead, he was climbing all over the different equipment and making his way down various slides by himself. There has been an independence and a deliberateness about his play lately that seems to be a step forward—small, but a step nonetheless.

Language has been coming a little bit too. He started signing "car" a little bit ago (it's one of his favorite cards in the Learning Program, and he loves to go sit in the back seat of cars, especially but not limited to Grandma's). At school he's apparently been having lots of success pointing to pictures of what he wants. At home he's more consistent with asking for more by signing, or signing for water. And lately, he's been emphatically asking for ball, as you can see by the video below.

Little gymnast

Megan got her new team uniform and warm up last week. As you can see from the pictures above and video below, she's pretty proud. Although she's not always wearing her uniform, the floor routine in the video gives you a pretty good idea of what Megan is doing most of the time she's in the house—including talking while upside down.

Spellbound

Luke participated in a Macy's spelling bee a few weeks ago. Below is video from the event. We got a kick out of how he asked for a definition or to repeat the word. He did really great—Julie thought there were about 35 8- to 10-year-olds there, and Luke was 7th-to-last out. When the bell dings him you can see the flicker of Luke heartbreak cross his face, but he held it together and even wanted to stay to see who won. He's already talking about next year.