I started work on Penny’s baby book a few months after she
was born. The first few pages were easy–showers and gifts and memories of being
pregnant. And then I got to the section that asked me to describe her birth. I
wrote down her full name, her birthday, her length and weight and eye color.
But when I got to the bottom of the page, to the part that said, “I also had my
own distinctive characteristics…” I couldn’t fill in the blank. I put the book
aside for a long long time.

Every so often, I would vow to finish it. I’d add some
photographs–her first birthday, visits with great-grandparents and friends and
trips to New Orleans and bathtime and all sorts of other quintessential baby
shots. But that page with the distinctive characteristics. I always flipped
past it and left it blank.

Penny turned five a month ago, and I pulled out her baby
book a few days later. I filled in photos from holidays and birthdays. I sent
away for a copy of the first page of the New
York Times on the day of her birth. I found the hospital bracelet she wore
when she welcomed William into the world. And I came back to that page from her
birth. Somehow, it didn’t seem so daunting anymore.

It took me five years, but I finally responded to the prompt about distinctive characteristics. I wrote, “Because I have Down syndrome, I stuck my tongue out a lot and I have a special line running across my palm. And just because I’m me, I made lots of funny faces, especially in the bath. I have the most beautiful eyes my mom has ever seen.”

There are still a few blank spots in the book. I didn’t keep track of when each tooth erupted, for instance. I don’t really want to write about the major news events surrounding her birth, as they mostly involve violence and destruction.

But I’m done with any sense of discomfort over the ways Penny is distinct. We’re starting to talk together about the fact that she has Down syndrome, and we’re trying to figure out how to convey to a five-year old what that extra chromosome means. I don’t have all the answers, and I’m sure that I will stumble over my words again. One thing is clear to me. She’s not a baby anymore.