Amid the challenges of caring for children with Down syndrome, families experience unexpected blessings

by Colleen Rouleau

Joseph Fahlman races down a hill near his house in Prince Albert, Saskatchewan, as his father and brother look on from the top. (Photos by Dani Van Steelandt)

Watching the falling snow, 7-year-old Joseph John Paul Fahlman wants to go tobogganing — immediately. At other times, he loves spending time with the animals on his family’s rural property 10 kilometers (six miles) northwest of Prince Albert, Saskatchewan. Joseph has an irresistible smile and enjoys playing video games, reading and riding his bike. He has also introduced his parents, Robert and Theresa Fahlman, to the joys and struggles of raising a child with Down syndrome. Also known as trisomy 21, the genetic condition is caused by the presence of an extra chromosome that leads to both physical and mental challenges.

Theresa, a registered nurse, was 43 when she learned that she was pregnant with Joseph, the couple’s seventh child. Though surprised by the news, they were happy to welcome another child into their family, and routine ultrasounds gave no indication of any abnormalities.

During the pregnancy, the Fahlmans chose not to learn the sex of their baby. They were thrilled when a boy arrived three weeks early — just after midnight on Jan. 1, 2005 — as one of Saskatchewan’s first centennial babies. Although the labor and delivery seemed ordinary, Robert felt apprehensive.

“I had a sense that we were in for something,” recalled Robert, who is a member of St. Michael’s Council 9949 in Prince Albert.

Soon after Joseph was born, the medical staff put him on oxygen and whisked him away. While Theresa was resting, the doctor delivered the diagnosis of Down syndrome to the concerned parents. Both Robert and Theresa felt devastated.

“There were some pretty tough moments for both of us,” Robert said. “Yet, at the same time, Joseph was accepted — completely.”

THE SCHOOL OF SUFFERING

Steve and Donatella Brown of Silver Spring, Md., shared a similar experience with their fourth child, Carlo. In December 2001, several days after birth, Carlo was diagnosed with Down syndrome. He had difficulties breathing, and the Browns spent the first two weeks shuttling between home and the neonatal intensive care unit.

“It was totally out of my horizon,” said Donatella, who had never known anyone with Down syndrome. “If I had a prenatal diagnosis, it would have been a very long nine months, full of preconceptions. Discovering after his birth, I already had someone real in front of me, a person. He had all the same needs as my other children: feeding, sleeping and changing. I had to respond to him very concretely.”

Theresa Fahlman also did not have a prenatal diagnosis, but she wasn’t entirely surprised that Joseph had Down syndrome. The pregnancy, she said, was a little different from the others in that the baby had not kicked or moved as much as her other children. The Fahlmans learned that this is because babies with Down syndrome do not have the same muscular strength.

Joseph remained in the hospital for two weeks on oxygen — a stressful time for a family concerned about his health. “But the fact that Joseph was given to us on the Solemnity of Mary the Mother of God was so reassuring to me,” Theresa said of the Jan. 1 birth. “I knew that God would take care of us.”

As Joseph continued to face health challenges, particularly during his first year, Theresa experienced several other moments of consolation. During a hospital stay in March 2005, she watched television reports of Pope John Paul II’s suffering during his final days.

“As I was lying beside Joseph, hooked up to the ventilator, I prayed for the Holy Father. I thought, ‘If he can go through this suffering, then so can we,’” she said.

One night, before Joseph underwent more tests, Theresa opened a booklet of meditations while holding her son. The booklet read, “Joseph, son of Jacob, faith perfected through the school of suffering.” Reflecting on that moment, she said, “God always provides for us. It is not easy, but he gives us the grace.”

The team of pediatricians that cared for Joseph was superb, but the doctors could not pinpoint the cause of all of his ailments, especially his trouble breathing during sleep. After months of testing, Joseph was finally diagnosed with gastric reflux and required a feeding tube inserted into his small intestine. Together with the oxygen tube, it would remain until Joseph was almost one year old.

At about the same time that Joseph finally had the tubes removed, the local paper mill where Robert worked shut down. This necessitated that Theresa return to work full time. For Robert, though, this proved to be an unexpected blessing.

“I was now the one caring for Joseph full time,” he said. “I think I’m particularly close to him because of that. I’ve seen a lot, been through a lot with him.”

SEEING IN A NEW LIGHT

The Fahlmans have learned a whole new set of skills in parenting Joseph. Because their expectations have changed, each milestone is something momentous. Nothing is taken for granted.

Joseph enjoys participating in Fundamentals, a program sponsored by Special Olympics that encourages children to have fun while being active. Last winter, Robert also became involved with Special Olympics, helping his council build a large snowshoe track for a competition. Knights also volunteered at the event.

“Joseph has taught us to slow down and look at things in a new light,” said Robert. “He has been a real witness to the potential of anyone.”

Likewise, Donatella Brown sees clearly how her son Carlo, who is now in third grade, has the gift of enlarging the hearts of those around him. “His presence has made me realize that the value of your life doesn’t depend on what you do, but because you are,” she said. As a part-time math teacher, this appreciation influences the way Donatella sees her students.

“Their life is positive no matter what their condition,” she said. “They’re all of value in themselves, not based on their accomplishments or achievements.”

Since Carlo’s birth, the Browns have been blessed with two more children, Michael and Anna-Maria.

“As the older children have grown, Carlo falls somewhat behind,” said Donatella. “But his younger siblings are there as playmates for him. They are a blessing from all points of view. Carlo has these two little friends who continue to push him along.”

A few of the Browns’ other friends have since had children with Down syndrome, and knowing Carlo has made it easier for them, Donatella said. And the Browns have recognized that despite the difficulties that come with caring for a child with special needs, there are also special graces.

“When I lose my patience with Carlo, someone else in the family comes in and is ready to start over again with him,” said Donatella. “He has a strong capacity for relationship. Carlo demands totally, but he gives totally.”

The Fahlmans have also noticed that Joseph has a tremendous desire to love. “He’s a bit shy at first, but once he knows you, he just loves you,” said Theresa. “He has really reinforced everything we always believed was important.”

Robert added that his son’s cheerfulness and unconditional love inspire a greater passion for life. “Joseph is just the happiest little guy. There is so much joy we have been given,” he said. “I almost can’t describe it, but I can hardly wait to see him every morning.”

COLLEEN ROULEAU writes from Edmonton, Alberta.