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Two Hearts Beating As One
Comments () | Published February 1, 2006

At 19 pounds, Erin is still too small for a wheelchair. Melissa and Kevin are thinking about how they'll widen doors and build ramps. They wanted a pool--doctors say the water would be good therapy--but their yard is too hilly. Maybe one day they'll get a Jacuzzi.

For now, Erin uses her red car and her "scooter," a crawling frame molded to fit her body. She lies in it and pushes herself around. "Walk," she tells Melissa when she wants to get in. She wears an abdominal brace to keep her spine from curving. The first few days, she didn't like it--she couldn't touch her heart.

When Melissa was a college student in Minnesota, she worked as a lifeguard at a camp for kids and adults with disabilities. Some of her campers were paralyzed. She became close with an eight-year-old girl who was in a wheelchair. The girl wore a diaper and had a brace on her torso. Melissa held the little girl's hand and helped her get ready for bed.

The girl told Melissa it was hard seeing other children running around; lots of campers said they didn't like being stared at. Melissa sees people staring when Erin has her leg braces on.

Erin likes doing things on her own, the same way Melissa's campers did. When Taylor and Jade run around, Erin says, "Run, run, run" and crawls as fast as she can. She wants to sit in a chair by herself, so she pushes Melissa's hands away. If she thinks she's falling, Erin says, "I got you"--the same thing Melissa has told her so many times.

On a warm fall day, Erin is rolling marbles down the small plastic slide in the sunroom. Melissa sits next to her so she doesn't fall backward.

"Do it again!" Taylor says.

Jade steps up behind Erin--she wants to slide now. "No, no, Jadie," Erin says.

Jade backs down and starts dancing. She rarely needs music.

Soon the slide is old news. Jade picks up a toy cell phone: "Hello?" Erin wants one, too, so Melissa grabs another. "Hello?" Erin says. They enjoy pretend conversations.

Melissa and the girls spend most of their time at home. A cold can be life-threatening for Erin. Her chest muscles are weak, so it's hard for her to cough. She's at risk for a respiratory virus that can cause pneumonia.

At night, Erin and Jade help bathe each other. Erin falls asleep on her parents' bed, where Kevin reads to her while Melissa tucks in Jade and reads to Taylor. Lately Jade's been getting up in the middle of the night.

"She'll go back to bed for Daddy, but not for me," Melissa says. "He's the Marine."

Kevin and Melissa drive to Children's Hospital a few times a year, where Erin and Taylor see their urologist, physiatrist, orthopedist, and neurologist in one visit. Melissa does most of the talking. Kevin tells her she should be a nurse. She's thought about it--she likes medical shows--but she'll probably go back to teaching once Erin and Jade are in school. She wants summers off with the girls.

Besides, she says, "if I had a patient die, I don't know how I'd deal with it."

Jade doesn't need special checkups anymore, but she still sees Dr. Boyajian, the plastic surgeon. She's learned to say his name. Jade has a bone sticking up from her chest--she got more of the chest wall during surgery--so she'll need another operation to correct it.

Melissa e-mails photos to the doctors, nurses, and volunteers who helped them. A card hangs on the wall of their house, a gift from intensive care staff for the one-year anniversary of the surgery. "Separate and apart," one note on it reads, "but together forever in our hearts."

Kevin and Melissa have seen Erin move her legs in the bathtub and when she first woke up, but they weren't sure what it meant. Doctors said it was reflexes.

At an appointment at Children's Hospital in September, a doctor saw the movement they'd seen.

"Are you doing that?" Dr. Sally Evans asked as Erin lay on the examining table. "You are! Congrats."

Melissa says she believes miracles happen--she lives with two of them. She's seen talk shows about people who were told they'd never walk again but did.

"When she hears music, she dances," Kevin says of Erin. "I can't wait to dance with her."

They look for signs.

"Yesterday," Melissa says, "I was tickling her and I started low, down by her stomach, and went up the sides. . . . It was probably right when I got to her lower rib cage that she would start giggling."

When the girls sing "If You're Happy and You Know It" and they get to "stomp your feet," Melissa usually changes the words. She'll say, "pat your tummy" or something else Erin can do. Lately she hasn't had to: Erin grabs her legs with her hands and pushes them toward the floor.

Kevin has wondered whether Erin will resent Jade's abilities. He thinks Jade will be protective--she likes feeding Erin snacks and giving her water.

When Melissa gets sad that Erin can't walk, she thinks about the four families she's heard from since the twins' surgery. None of their conjoined twins survived. She talked to one pregnant mother every Friday for months. She and Kevin visited another couple at the hospital, then went to their babies' funeral. Melissa reminds herself that she has a lot to be thankful for.

Sometimes she dreams about Erin. In one dream, Melissa and the girls were going grocery shopping. She took Taylor out of her car seat and put her down, then Jade and Erin. Erin stood on her own, then took a few tentative steps. Taylor screamed, "Erin's walking, Mommy! Look--Erin's walking!"

When Melissa turns on a video about the separation, Erin and Jade know it's them. They say their names. Melissa thinks: What might Erin and Jade remember?

She wishes she knew what sensations they shared. Some conjoined twins are older when they're separated, so they can talk about what it felt like.

Erin and Jade turn two this month. They'll form memories through pictures and stories. On their bedroom wall is a photo of their faces when they were newborns. When they flip open Melissa's cell phone, they see a picture of themselves joined together. They love looking through photo albums. Melissa points to a collage from Children's Hospital above their changing table and tells them: "That was the day of the surgery."

Melissa thinks about what Erin and Jade will ask her when they're old enough to understand. Will they realize how lucky they are? What will they say to people?

She wonders about the bond the girls will share. They were sitting together on their little bench recently when Erin started talking to Jade. Kevin's mother, who was watching them, couldn't understand a word Erin was saying. Jade laughed and laughed. 

Miracle Girl: Cindy Rich's November 2007 follow-up story on Erin's physical therapy, and how she's defied all odds.

This article first appeared in the February 2006 issue of The Washingtonian. For more articles from that issue, go here


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Posted at 12:00 AM/ET, 02/01/2006 RSS | Print | Permalink | Articles