Communication and Community are critical.
Just hours after Susie and Grahm Jones welcomed their daughter Ella into the world, they received news that would forever change their family dynamic.
"They came into the room at 1 a.m. and gave us a status update," Mr. Jones said. "Then they said they were seeing some signs for Down syndrome."
Ella was born 6 weeks early, so the Joneses' primary concerns were the multitude of medical issues that accompany a low birth-weight baby. The diagnosis of Down syndrome did not actually sink in until after they took Ella home, and the doctors and nurses were gone.
"That was the scary part when they handed her over for us to bring her home where we didn't have doctors and nurses 24/7," Mrs. Jones said.
Mr. Jones added, "Every sigh or whimper during the night had us tripping over each other to get in there to check on Ella."
Like many couples who face the sudden challenge of a child with special needs, the Joneses were under a tremendous amount of stress that most new parents do not have to endure. Their sense of "normal" was jostled. And they were forced to arrive at a new kind of normal for their child and for their marriage.
Ella is now 21 months old. The family routine is supplemented by physical and speech therapy sessions, schooling, support groups, parent classes and many doctor appointments. And that is just the beginning for the couple who both work full time.
"There is always something additional," Mrs. Jones said. "That's where it gets a little hard juggling all of it."
Lori McCullough, a social worker for the Child Development Center at Nationwide Children's Hospital, sees many couples with a special-needs child struggle as they face the fear of financial difficulties, medical bills, insurance and tough decisions about jobs and managing medical care.
"What is supposed to be a very joyous time becomes the end of hopes and dreams," McCullough said. "They are pulled into a world of hospitals, doctors, medications and sometimes forced to manage care at home."
All of these stressors, McCullough said, are not conducive to nurturing a marriage.
McCullough said couples have to be advocates for their marriage. It becomes too easy to divert all their energy and attention to their child and have nothing left for each other.
"Even little things, like holding hands, remind each spouse how valuable that relationship is," McCullough said.
Advocating for the marriage begins with communication. The Joneses, married for 11 years, are both quiet people. After Ella's diagnosis they said they had to learn how to openly communicate their feelings and their individual needs to each other.
"I feel like we are more proactive bringing things to the table about Ella and about everything," Mrs. Jones said. "We make sure we are both on the same page and know how each other feel."
While the Joneses still have frustrations, they say they also have perspective and now face their challenges together.
"It's not like you get handed a handbook - 'Down Syndrome 101,' " Mr. Jones said. "When we get frustrated with something or somebody is at their wit's end, it has nothing to do with Down syndrome; it has to do with a cranky baby or just general kid stuff."
While the Joneses consider their marriage a best-case scenario, Dr. Cynthia Gerhardt, a pediatric psychologist at Nationwide Children's Hospital, said not all couples are as successful.
Gerhardt's research on the risk and resilience factors in families with children with chronic conditions shows how essential it is that couples reach out for help. That could be in the form of counseling or, for the Joneses, support groups.
"Couples who reach out for support see the most success and resiliency," Gerhardt said. "Those families tend to be able to make sense of their child's condition and that allows them to see the silver lining."
Some couples, Gerhardt said, can build a stronger marriage by facing this together. The Joneses are one of those couples.
Grahm and Susie Jones acknowledge that their world changed with the news that little Ella had Down syndrome. But they say it also opened their eyes to a world they never would have seen without her.