Emily went in for her first sonogram when she was 16 weeks pregnant, and halfway through the procedure the technician walked out of the room. Something’s wrong, Emily thought.
At 32, she was enjoying her first pregnancy. She could eat whatever she wanted and her clothes would just expand, and she loved the idea that there was a baby growing inside of her. She and Mark, who’d started dating in high school at Walter Johnson and married in 1993, had been trying to conceive for four years. She didn’t want him to know she was concerned about whatever the technician had just seen.
Looking back, Emily says, the tech probably noticed the hole in Delaney’s heart, but when they asked what was going on, she said she couldn’t tell them anything—only the doctor could. Emily was already scheduled for a triple screen, a blood test offered to pregnant women in their 15th to 20th week to look for signs of neural tube defects and other chromosomal abnormalities. “They probably said, ‘Let her have her blood test done, and then her doctor will talk to them,’ ” she says.
A few days later Emily was sitting in her cubical at work when her office phone rang. “Your AFP is low, you have the chance of having a baby born with Down syndrome,” she remembers the obstetrician saying. (The level of alpha-fetoprotein, or AFP, in a mother’s bloodstream typically increases during certain weeks of pregnancy.) “You need to come into my office—we have to talk about whether you want to terminate [the pregnancy] or not.”
He didn’t ask if it was a good time for her to talk, Emily says. He just said it. He gave her a statistic she doesn’t remember—a one in something chance—and that was it. “I just was like, ‘Oh my gosh, OK, OK, well, what do I do next? We’re not going to terminate the baby, so do I have to make an appointment with you for something?’ ” she says.
Emily left work early and called a friend who’s an OB-GYN. “What does this mean?” she asked. “It’s most likely a false positive—that happens a lot,” the woman said. “Don’t worry,” friends told her.
At her appointment the following week, Emily’s doctor recommended an amniocentesis. “I don’t want to risk having a problem happen from the amnio when there might not be a problem to begin with,” she told him. “Refuses amnio,” she saw him write on his paperwork.
For the next five months, Emily tried to come to terms with the fact that she might be carrying a child with Down syndrome. None of our friends have had a baby born with special needs, she’d think. We’re the ones. “She got prepared for Delaney; I went the other direction,” says Mark, now 52. “I prayed every day it wouldn’t happen—I didn’t think it was going to happen.”
During a trip to Bethany Beach that summer, Emily was on the beach with friends when a child she didn’t know started playing with her ponytail. “I turn around and it’s this cute little boy with blond hair, and he has Down syndrome,” she says. She was two months from her due date. “Then we saw the little guy again on the boardwalk.”
That night, she and Mark went for a walk, and she told him she’d been getting some signs. “Everything’s going to be fine—we have a healthy baby,” he responded.
“I just want you to prepare yourself,” she said, “in case.”
The nail polish drawer in Delaney’s bedroom is just about full. “One hundred and fifty-one,” she says, as if this isn’t the first time she’s been asked how many bottles she has. “I’m kidding.”
She likes to alternate colors, which can mean two or three polishes on the same hand at once. Emily thinks her daughter might enjoy working in a nail salon one day, but worries about her inhaling the fumes.
“Here’s all my dresses. These are my Girl Scout vests, and all my cheerleading stuff,” Delaney says as she looks through her closet. On her wall is a fabric tackboard covered with pictures and keepsakes: a ticket stub from a Hannah Montana concert; a photo booth strip from the Down Syndrome Network’s winter dance; her varsity letter—a big green W—which she earned playing on Walter Johnson’s bocce ball team. She also has framed photos of her family and a wooden sign from her parents that reads: “I love you to the moon and back.”
There’s a pink karaoke machine on Delaney’s desk, which she turned on 10 minutes ago because she was in the mood to sing Katy Perry’s “Roar.” “Sometimes for my birthday party I’m like, ‘Hey guys, come in, settle in, take your shoes off or whatever,’ and then we go upstairs and then we’re hangin’ out and talking. Talk about boys a little bit, talk about girls, kinda like friendship updates,” she explains. “Then we start saying, ‘Hey, you guys wanna do a band in my room?’ We sing…I do a little bit of guitar.”
Delaney often says one of her favorite things to do is sleep, because that’s what teenagers do. She loves when friends spend the night and watch her favorite movie, Miracles from Heaven, which is based on a true story about a 10-year-old girl with a rare disorder who’s miraculously cured after a freak accident. She’s seen it at least 15 times.
Whenever Delaney talks about her friends, she’ll make comments—without being asked—about whether they have special needs or not. “One of my friends, her name is Theresa, she has Down syndrome, with me,” Delaney says. “That’s OK, ’cause we’re different.”
She’s always been sensitive about it, her mom says. Delaney has talked about wanting to baby-sit children with special needs, or work with them in a school—she says her brother, Patrick, can be the teacher and she’ll be his assistant. When Delaney sees someone with disabilities, she’ll usually walk right up and start a conversation. “She does things that maybe we all want to do,” Emily says.
Emily’s never forgotten the moment an older girl approached Delaney, with good intentions, and told her something she’d never heard before. Her daughter had just started third grade when the girl came up to her at the Labor Day parade in Kensington, put her hands on Delaney’s shoulders and said, “You have Down syndrome, just like me.”
“No I don’t,” Delaney said.
Teachers at Kensington Parkwood Elementary School, where Delaney was in a mainstream classroom, had recently asked Emily if her daughter knew about her condition and suggested that maybe it was time to tell her. But Emily told them she wasn’t ready. “Mom, what is she saying?” Delaney asked at the parade. She knew the girl from the neighborhood; their families were friendly. “Why is she saying that?”
I can’t believe this is happening, Emily thought. “It’s OK,” she told the girls, not knowing what else to say. “Don’t worry.”
When they got home, Emily waited to see if Delaney would bring it up again, hoping, in a way, that she wouldn’t. A week passed. “I’m lying with her and we’re reading, and all of a sudden, out of the blue, she says, ‘Mom, do I have Down syndrome?’ ” Emily says.
Yes, Emily told her, you do. Then she wanted to know why. “Well, you were born with it,” her mom said. “What is it?” she asked. “Will it go away?”
Emily held back tears as she answered. She knew if her little girl saw her crying she might think Down syndrome was a bad thing. “You’re perfect,” she told her. “You’re you. You’re Delaney.”