Up the Down Staircase

A New Times writer tells one family's unique story about life with Down Syndrome, and then shares her own

But when I got home, there was an e-mail waiting.

"Listen," Laurie began. "I'm really embarrassed about our conversation this morning about Sophie. I didn't know what to say. And I've been thinking about her and you all morning, and I just want you to know that I said the wrong thing. I mean, when I said that I was sorry about Sophie and Down syndrome, that just came tumbling out. Since then, I've realized it was a stupid thing to say, because Sophie is going to be fine. She's just going to be Sophie."

Laurie continued, saying what good parents my husband and I would be, what a good big sister Annabelle would be. And this is how she concluded:

Tia gets a hug at play group.
Tia gets a hug at play group.
Tia and Elmo
Tia and Elmo

Details

Photographs by Peter Scanlon

"Now this may not be an appropriate story for right now, I don't exactly know what's appropriate and what's not, but you are one of my dearest friends, and I think you'll understand. My neighbor, Jean, has a daughter, Paula, who has Down syndrome. Paula is about 40 now, she works at the library, and she and Jean are always together. One day, I saw them both walking home from the library, and they were holding hands, but they were swinging their arms back and forth. And I watched them for a while, and I thought, 'Wow, when's the last time I held hands with my mom? Probably not since I was five, six. When's the last time I held hands with my mom like that? Probably never. And I remember thinking, Jean is so lucky to have Paula, and Paula is so lucky to have Jean. It seemed to me at the time that Jean got all of the wonderful, little tender moments of being a mother, and she just got to hold onto them a little bit longer than other mothers.

"Okay, that's enough of an emotional outpouring [from] this black-hearted girl. But know that I'm here, know that I'm thinking about you, and know that I can't wait to meet our sweet Sophie. I bet she's just a doll."

A couple months later, Laurie told me that, at about the time Sophie was born, she was working on the final galleys of her third book, I Love Everybody and Other Atrocious Lies, and she went through the book and took out the words "retard" and "retarded." That's a huge sacrifice, since, next to "dork," "retard" is Laurie's favorite word. She admitted that she left "retard" in once because it was in a direct quote, and it really fit. I actually found it twice, when I read the book.

I can't imagine a better tribute to Sophie.


When I decided that I wanted to write about the Huff family, I e-mailed Gina Johnson from Sharing Down Syndrome to ask for contact information. She was gracious, and invited us to the Buddy Walk, the organization's annual fund raiser. I didn't want to go. Sophie is beautiful and fun and sweet (and I am personally convinced that she is very smart), but I wasn't ready to face what she'll be like when she grows up. There were certainly going to be adults with Down syndrome at this thing. I imagined a whole throng of them, walking toward me.

But I figured I needed to go to the walk as part of the story. So I did. It wasn't so bad, although Tyler was sick and the Huff family didn't make it. I saw only a few adults with Down syndrome. Mostly, there were little babies, like Sophie. Before the short walk, a DJ played some really cheesy dance music, and a bunch of people, including Gina Johnson's son David, got up and danced. I watched them and thought about how I would never dance like that unless I was very, very, very drunk. They were having a lot of fun.

And so began my Down syndrome education. I finally dug up a copy of Expecting Adam, and was able -- through tears -- to read it, telling myself, again, that it was for this story. As part of my research, I spent a long time with the Huffs' genetics counselor, and this time I actually paid attention and took notes.

After meeting with the genetics counselor early one morning, I went home to play with Sophie. I looked at her, and all I saw were chromosomes. I had to shake my head hard and look again.

Let me try out my new knowledge:

DNA (deoxyribonucleic acid) is a grouping of molecules that hold the instructions for operating the body. These DNA molecules link up in a twisted ladder shape called a "double helix" to form strands that are genes. These genes are stored in chromosomes, which are tight packages of protein and DNA strands. Each cell in a human being is made up of 46 chromosomes -- 23 come from the mother, 23 come from the father. For unknown reasons, sometimes an error occurs at the time of fertilization, and instead of 46 chromosomes, there are 47. This can happen with other chromosomes, and in those cases the pregnancy usually doesn't progress or a baby is stillborn. Where live births are concerned, the error most commonly occurs with the 21st chromosome.

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