Adopting a new purpose: After the Clarks’ daughter was born with Down syndrome, they felt called to parent more special-needs children
By Julia Duin,
Everything was in place: the four balloons, the “Welcome home, Elizabeth” banner, a ready supply of tissues, a gaggle of family and friends. Then out of a bank of billowing white clouds under a blue summer sky emerged United Airlines Flight 965 from Moscow. The moment its wheels touched the Dulles Airport tarmac at 2:42 p.m. on Sunday, Aug. 14, 7-year-old Elizabeth Clark became a U.S. citizen.
Her adoptive family, including three big brothers and two younger sisters, patiently stood outside the international arrivals area as Elizabeth and her new mom, Nina Clark, made it through customs, then through a review of Elizabeth’s papers. Finally, all was signed off, and at 4:50 p.m., the gray doors to the baggage claim area opened, and Elizabeth made her entrance.
Dressed in magenta pants and a striped shirt, the girl was perched, princess-like on the luggage trolley pushed by her mom, with a barrette tying back her light-brown hair. Nina paused at the sight of the welcoming crowd, then abandoned the cart to dash over to her husband, Jon.
Elizabeth hopped off the cart and cautiously approached her new sisters: Emma, also 7, and Abby, 3. Like Elizabeth, Abby is adopted. All three have Down syndrome.
As the adults brushed away tears, they cast covert glances at the little girls. Would Emma feel upstaged? Would Elizabeth bond with two strangers? Would either Emma or Abby understand Elizabeth was a sister, not just another playmate? Elizabeth gingerly ruffled Abby’s hair. Then, “Momma,” she said, pointing toward Nina. “Poppa!” she said, pointing toward Jon. Then, pointing toward Abby, “Happy!”
The Clarks are part of an unusual subset within the world of adoptive parenting: people who seek out special-needs children. The Germantown couple had led ordinary lives, working at McCarthy Wilson, a civil litigation firm in Rockville where he’s a partner and she’s a legal secretary. Eight years ago, they learned that after having three boys — Andy, now 14; Jacob, now 13; and Matthew, now 10 — Nina was pregnant with a girl.
Nina, then 34, never thought of having an amniocentesis test; after all, she was younger than 35, the age when women are believed to be at increased risk for a Down syndrome child. (The American College of Obstetricians and Gynecologists now recommends that women of all ages be screened.) When Emma emerged on Oct. 16, 2003, the couple knew life would never be the same.
Children with Down syndrome, a genetic condition in which an individual has three — instead of the usual two — sets of the 21st chromosome, are at risk for intellectual disabilities and health problems, and it wasn’t long before medical issues began to arise with Emma. Breathing problems resulted in a three-month hospital stay when she was 5 months old. Then there was the open-heart surgery to reroute a pulmonary artery at age 3 1/2.
Finally, Emma began to flourish when she turned 4, and Nina began thinking the unthinkable: adopting a child just like her.
After Emma was born, Nina, a member of Neelsville Presbyterian Church in Germantown, had searched the Bible for guidance, especially its command to care for orphans and widows. She began to believe that her seeming misfortune might be part of a divine plan. “I thought, ‘What do I do with this?’ ” she says. “I decided not to have more of our own but to save those already here. For me, it’s like a mission and a calling. If Emma wasn’t born, I would not be adopting a child with Down syndrome. So, her life already has had meaning.”
Nina decided she didn’t want to adopt domestically, since plenty of families are lined up to offer such children a home. But in some countries, she found, handicapped children are often left in dark rooms with poor nutrition and no stimulation. Many have rickets, the vitamin D deficiency, from lack of sunshine.
Especially poignant were the images from Reece’s Rainbow, a Gaithersburg-based “adoption ministry.” The charity, founded in 2006 by Andrea Roberts, whose oldest son, Reece, 9, has Down syndrome, facilitates adoptions of special-needs children from overseas by finding families for the children and sponsors to donate toward expenses. It has found families for 500 kids and offers an average grant of $10,000, covering a third of the average cost of an overseas adoption.
Nina was instantly drawn to the group’s Web site. “I thought, ‘That could be Emma,’ ” she says of the heart-rending list of dozens of “waiting” children. Two girls in a Ukrainian orphanage caught her interest, but they both died in a flu epidemic.
“That was my turning point,” Nina says. “I thought, ‘I have to do something. We have a strong marriage, a good family and a house that’s big enough for more.’ I wanted the kids no one likes.”
Roberts helped her locate a child from China, and in September 2010, the Clarks brought home Abby, then 2.
Emma and Abby took to each other like little magnets, and after a few weeks, Nina began wondering if the couple should try for one more. It was back to Reece’s Rainbow, where a picture of a Russian girl named Elizabeth Tsypkina, who was two months older than Emma and lived in an orphanage just outside St. Petersburg, spoke to Nina.
Jon was incredulous. “You want a what?” he said when his wife suggested a sixth child. They’d both be 42 years old by the time they got the child home.
“I’m non-adventurous,” he acknowledges now, “and a bit more nervous about doing this.” He soon calmed down, “because of faith,” he says. “Faith in Nina’s conviction that all would work out one way or the other. Faith in God that He would provide.”
One reason for Jon’s caution was that Russian adoptions are among the most expensive in the world, typically costing $50,000. Though the Clarks’ agency, the Tucson-based Hand in Hand, was willing to give them a price break for adopting a special-needs child, the $36,000 fee was daunting.
Another concern was that the Clarks would be bucking the conventional wisdom in adoption circles that one does not disturb the birth order in a family. How would things work between Emma and a slightly older new sibling?
On the other hand, Elizabeth’s situation was urgent. Once children are past age 7 in Eastern Europe, they are transferred to orphanages for older kids and effectively disappear off adoption lists.
Jon and Nina knew that if they were going to offer Elizabeth a better future, they needed to act quickly. They made their decision in December, just three months after adding Abby to the family, and Nina began to chronicle their journey on her blog, Our Journey ( saveanorphantoday.blogspot.com ).
Nine months, three trips to Russia, tens of thousands of dollars and endless paperwork later, Nina came home with Elizabeth, the first child to be adopted from her orphanage in 10 years.
Nina is not alone in seeing adoption as a divine calling. An evangelical Protestant “orphan care” movement has spawned conferences, Web sites, books and an annual “Orphan Sunday” in November (National Adoption Month) involving 2,000 churches.
The McLean-basedChristian Alliance for Orphans includes 100 organizations nationwide and urges Christians to adopt, foster or help care for children who might otherwise be aborted.
“Christians wanted to put their lives where their mouths were — both aiding mothers that chose to keep a child and standing willing to adopt whenever a child needed a family,” says Alliance President Jedd Medefind. “God adopted us and invited us to live as His children. When Christians take concern for children without parents — either by adoption or fostering — they feel they are reflecting God’s character.”
Some of these believers have opened their homes to Down syndrome children. Robin Steele, adoption coordinator for the National Down Syndrome Adoption Network in Cincinnati, arranges 26 adoptions a year for a pool of 200 waiting families. The majority identify themselves as Christians, Steele says, and 20 percent tell her they wish to save a child from being aborted (according to research cited by geneticist Brian Skotko at Children’s Hospital Boston, 92 percent of fetuses internationally that receive a Down syndrome diagnosis are aborted). As for the rest of the adoptive parents, “they have infertility issues, they want to adopt and they feel drawn to our program, but they don’t need a healthy infant. Or, they know someone with Down syndrome.”
She adds, “I talk with birth families who are devastated at hearing something is terribly wrong with their baby and tell them the birth of that child can be the most joyful event in another family’s life.”
The shadows are lengthening on a chilly November afternoon when a yellow Montgomery County school bus pulls up to the driveway of the Clarks’ six-bedroom white Colonial. A driver lifts Emma and Elizabeth out of the bus along with their pink backpacks. After months of paperwork for Elizabeth, both girls are now in the same special-needs program at a local elementary school — Elizabeth in second grade and Emma in first. Abby, 3, is at a special-needs public preschool and gets home at 11:30 a.m.
Nina relates that Elizabeth’s teacher “says she’s really smart, picking up words right and left. She’s using Starfall [a learning Web site for kids]. She’s using magnetic letters to spell her name. The teacher says she is very high-functioning.”
Nina parks herself at the curb to make sure her daughters make it to the front door. A few weeks before, the driver let Elizabeth off at the wrong stop. Another time, Emma was put on the sidewalk before Nina got there — and Emma took off down the street. Emma, in Down syndrome parlance, is known as a “runner”; she sprints off the moment she gets outside the house. Once, she made it to a nearby creek; another time she ended up on the median of a busy highway. She now wears a monitor bracelet around one of her ankles.
Today, Emma, who has a habit of taking off her shoes wherever she goes, gets off the bus barefoot. As Nina is trying to collect the two girls, Abby slips out of the house and goes charging toward the street. There’s brief pandemonium until Nina manages to corral all three inside the front door.
“Did you have a good day?” Nina tries to ask Elizabeth, who has dashed into the bathroom yelling, “Cookie! Cookie!”
Nina herds her girls back outside and into the family’s new 12-passenger van to pick up one of her sons from school. After buckling them in, she tosses a package of cookies on the seat beside them.
With special-needs babysitters nearly impossible to find, Nina takes her daughters with her as she carpools her sons to soccer and art lessons. But she puts her foot down when it comes to food shopping — taking the three girls is “impossible” — and leans on friends if Jon can’t be home.
“Yes, I am organized,” Nina says as the van makes its way through several neighborhoods. “The calendar is my best friend, but it’s tight. There’s no leeway for anything. I highlight all the doctor’s appointments in yellow just to make sure I see them. Sometimes, I forget things. Emma was supposed to have repeat blood work for her thyroid done. That’s two months late. Sometimes, I can’t get to everything. Sometimes you have to pick and choose what’s most important.”
Fitting Elizabeth into the household regimen has been a priority since she arrived in August, extremely nearsighted and never having seen a bathtub. She had no sooner joined the family, her brothers report, than she tried bossing around the other kids. When she didn’t get her way, she’d lapse into Russian, with “nyet” here and there.
“The house has gotten a bit louder,” says middle brother Jacob.
“She likes to be in control, so she tells Matthew to be quiet,” explains Andy, the oldest.
Matthew describes her as “bossy but smart.”
Despite their parents’ fears, Elizabeth and Emma seem to have completely bonded. The girls tend to get into mischief together, which is one reason the Clarks have installed a new wrought-iron fence in the back yard and extra locks on the doors. Elizabeth, now 8, sports new wire-rimmed glasses and had seven baby teeth pulled, as they had never come out and were crowding her permanent teeth.
Once the van has returned to the house with Matthew and all the kids are unloaded, Nina asks her son if he can watch the girls as they play in the basement, which has been outfitted with a swing set and a slide that dumps children into a pile of multi-colored plastic balls.
“Mom, I don’t feel like it,” Matthew says. “Sorry. Do you really need someone down there?”
Though the boys often help out, “they all have days when they say, ‘I don’t want to watch such and such while you go out and do so and so,’ ” Jon says. He and Nina try to mitigate the impact three needy younger sisters can have on the boys. Occasionally, one parent takes a son out to dinner for some one-on-one time, plus, when the girls are in bed, the parents have movie nights with the boys.
Nina decides the girls can be alone, then stands in the hallway, thinking. “The worst part of my job is dinner,” she confesses. At 4:30 p.m., she hasn’t figured out what all eight of them will eat.
Dinners tend to be tumultuous affairs. The girls have constant requests, for food, condiments, chair adjustments. Emma, who has apraxia, a speech disorder, often bellows her way through the meal. With all three girls bouncing about, Jon and Nina barely sit down. The boys seem to take it all in stride.
By 7:30 p.m., Emma, Elizabeth and Abby have had their baths and are dressed in pink and blue flannel sleepers. Giggling, they pile on Nina and Jon’s bed for a quick cuddle time. As Nina takes her place next to the three little bodies, Elizabeth reaches up and caresses her mother’s knee. “Mommy,” she murmurs.
It’s not likely Nina and Jon will get a full night’s sleep. Emma is usually up at 2:30 a.m. for a potty break, then Elizabeth at 5:30 a.m.
“Right now, we are young and we can do this,” Nina says. As for years from now when the girls hit their 20s? Both parents confess they haven’t thought much about it, though they hope that at least Elizabeth might live independently someday and that their sons can pitch in to help.
God will provide, the Clarks say. He already has, they point out. Thanks to a grant from Reece’s Rainbow and the proceeds from investments that Nina sold, Elizabeth’s adoption fees are paid off.
“My husband makes decent money,” Nina says, “but things are tight.” She has returned to work two days a week at the law firm. “Work is my vacation,” she says. “I can clear my head and sit on my butt and talk to adults.” Friends take care of the girls when she’s at the office.
One such friend is Bethany Nagel, a mother of two preschool-age boys.
“It was a huge learning curve for me to even watch them,” she remembers. “The first week, I just went home afterward and went to bed. But then I learned each of their individual needs, and the Clarks have set up things so the kids get what they need,” such as the play set in the basement. “And they have three brothers who love on them. Those are some of the coolest boys I’ve met in that age group.”
Bethany and her husband, Andy, the associate pastor at the Clarks’ church, have decided they, too, will adopt a Russian child with Down syndrome through Reece’s Rainbow. “Nina and Jon have been so encouraging,” Andy says. “We have a conviction that these children matter, and we can make a difference for one of them.”
Nina hopes that more people will face the fear of having a handicapped child — and come out on the other side, as she did. When she was pregnant with her other children, she says, she would think, “ ‘Oh, my God, what if I had a Down child?’ ”
Now she says, “Why was I so afraid?”
Julia Duin is a contributing writer to the Magazine. She can be reached at email@example.com.