Pope John Paul II gave encouragement to families whose members include children with disabilities in an address in 1999. He acknowledged that the birth of a child with special needs can leave his parents “deeply shocked.” However, echoing his 1981 apostolic exhortation Familiaris Consortio, he insisted, “it is important to encourage parents to devote ‘special attention…to the children, by developing a profound esteem for their personal dignity, and a great respect and generous concern for their rights. This is true for every child, but it becomes all the more urgent the smaller the child is and the more it is in need of everything, when it is sick, suffering, or handicapped.”
The late Holy Father continued, “When children are more vulnerable and exposed to the risk of being rejected by others, it is the family that can most effectively safeguard their dignity, equal to that of healthy children. Illness, indeed, must prompt an attitude of special attention to these persons who belong in every way to the category of the poor who will inherit the kingdom of heaven.”
He added, “To welcome the weakest, helping them on their journey, is a sign of civilization. Thus [those with handicaps] should not be left alone, but to be welcomed by society and, according to their abilities, integrated into it as full members.”
The following is an interview with three Catholic families who have welcomed children with disabilities, in which they discuss the challenges they’ve faced and the blessings they’ve experienced.
“He’s made me a better human being, and a better Catholic”
Francesca and Frank Pellegrino of Kensington, Maryland (a Washington, DC suburb), have a 20-year-old son, Alex, who has a significant mental disability. As an infant and small child, Alex was in and out of the hospital frequently, and once had to be resuscitated. Dealing with the health issues was emotionally draining, as well as taxing on the family’s financial resources.
“It went on for many years, and threw me into a crisis of faith,” Francesca recalled. “I was angry at God, and everyone else.”
The problem was aggravated by the fact that the pair had no family in the area to support them.
Francesca stopped going to Mass for a time, but Frank didn’t. In fact, he began “dragging” her to Mass with him. There, she met a priest who had worked with a child with special needs. He spoke of the challenges of working with that child in his homilies, which Francesca said “spoke” to her.
As Alex grew older, Francesca and Frank had the challenge of preparing him for the sacraments. It was difficult for him to sit through Mass, as he was constantly moving and fidgeting. She spoke to other parents of children with disabilities, and found they encountered similar challenges. Francesca decided to see what other religious groups were doing for children with special needs.
One of the most impressive ministries was offered by McLean Bible Church in Virginia. She recalled a large mural in the church with painted scenes from the Bible which were enhanced with things children could touch—Jesus’ hair was made from threads of silk, sheep were covered in actual wool. Such a tactile experience can help children with special needs better understand stories in Scripture.
Additionally, the mega-church had a nursing staff on stand-by that could help persons with health issues, and staff members specially assigned to help those with special needs.
Francesca thought, “I could leave the Catholic Church for this.” But she says that she realized, “No, I couldn’t—being Catholic is what I am.”
She returned to her parish, Shrine of the Most Blessed Sacrament in Washington, DC, and started a ministry for persons with disabilities. Activities of the ministry include Special Olympics sports events and groups for special-needs teens encouraging them to engage in social activities.
“Children with disabilities want to have friends, and be involved in social activities, just like other children,” Francesca said. “Starting at middle school, social activities for persons with disabilities are lacking, and it leaves them feeling isolated.”
Her efforts led to the creation of a part-time special-needs coordinator position at her parish, as well as a similar position in the Archdiocese of Washington, DC. Additionally, she has helped raised awareness in the community about the need to welcome and include children with disabilities. Francesca founded a group, the Catholic Coalition for Special Education, to help parishes and schools in the Archdioceses of Washington and Baltimore better serve persons with disabilities.
Alex received his first Holy Communion at age 12—“A wonderful day,” said Francesca—and today, he is an altar server. Despite the difficulties involved in bringing up Alex, Francesca is grateful for his presence in her life: “He has given me a greater appreciation for the sanctity of human life, and made me a better human being and a better Catholic.”
She’s also grateful for the steadfast support of her husband Frank. In special-needs circles, the challenges of having a child with a disability can bring out the best and the worst in husbands. Some, like Frank, rise to the occasion and devote themselves to the care of their families. Others can grow distant and abandon the family.
Francesca is also grateful for the network of families with special-needs children which gave her support during “dark days.” She said, “I’ve met many wonderful people in a similar situation to mine, and they’ve helped me come closer to Christ.”
Trisomy 18, and defying expectations
Magdalena (“Lena”) and Tom Hudson live in Wauconda, Illinois, a suburb of Chicago, with their eight children (a ninth is on the way). Their seventh child, Sarah, age 4, was diagnosed with Trisomy 18 Edwards Syndrome, a genetic disorder caused by the presence of all or part of an extra 18th chromosome.
In some ways Trisomy 18 is similar to Down Syndrome, but with more severe effects. It is both rare and life-threatening. Most children born with the condition die within their first year of life. Former Republican presidential candidate Rick Santorum’s daughter Bella was diagnosed with Trisomy 18 and, coincidentally, was born the day after Sarah.
After giving birth to six healthy children, Lena suspected something was wrong with Sarah when the child was still in the womb. For one thing, she was much smaller. In fact, Sarah was born full-term, yet only weighed four pounds. Looking at a newborn Sarah, Lena counted 13 abnormalities, such as deformed hands and feet, a tiny nose and mouth, low-set ears, a strawberry-shaped head and eyes which didn’t close all the way.
“I panicked, but I hid it well,” Lena recalled. “I felt like I needed to put her back inside me, so she could grow some more.”
Feeding Sarah was the biggest challenge. She attempted to nurse, but her jaw didn’t have enough strength to access breast milk. For Sarah’s first year of life Lena had to pump breast milk round-the-clock, and then slowly feed it to Sarah with a special feeder.
In Sarah’s first year, Lena survived on four hours of sleep per night, and had to devote virtually all of her time to caring the baby. Lena’s sister moved in with the family to care for the other six children. “I thought getting so little sleep would drive anyone crazy, but I survived,” Lena said. “I’m glad that period is just a memory now.”
Today, at age 4, Sarah is about the size of a toddler and developmentally is on par with a four-month-old baby (and probably will never move beyond the level of a nine-month-old). She doesn’t talk or intentionally communicate in any way; the family must anticipate her needs. She has extremely low muscle tone, cannot stand, and can only sit for brief periods. She can only eat puréed foods and must be slowly spoon-fed. Drinking fluids is also difficult for her.
Sarah is susceptible to illness; a simple cold can be life-threatening as she has weak lungs and trouble coughing (pneumonia is a common cause of death for children like Sarah). When she does get sick, she needs round-the-clock care. She’s already beat expectations, as doctors didn’t expect her to live past one year.
The family does not like to take Sarah out, as she doesn’t like to sit in a stroller, is susceptible to picking up germs from others, and doesn’t like cold or hot weather.
She also has social needs like other children, and benefits from having her seven siblings, who are all homeschooled, around. “It’s really sweet to see the other kids play with her,” Lena said. “They know she’s vulnerable, and relies on us for everything. They do things for her out of pure love.”
The strain of having a child with a disability has not caused stress in her marriage, Lena said. Tom stepped up to take care of Sarah as Lena prepared for the birth of her eighth child, and has done so again as they await the arrival of their ninth. “He came through for Sarah 100 percent,” Lena said. “It was the sweetest thing watching him care for her. They’ve developed a real bond.”
Despite the many demands, Sarah has brought much good to the Hudson family. “Sarah’s so happy,” explained Lena. “I look at her laughing, and it makes me laugh. It also teaches the other kids to be selfless. They see someone who needs more attention than they do.”
The Hudson family are devout Catholics, and Lena sees the spiritual benefits of having a child with a disability. “Sarah is our path to heaven,” she said. “It’s hard to be selfish when you have a little baby that depends on you for everything. During Lent, I don’t have to go looking for sacrifices to take on, they come to me through her.”
“The Faith was the glue that held us together”
Elise and John Pascale of Santa Ana, California have five children ages seven years to four months. Their third child, four-year-old Sofia, was diagnosed with Turner Syndrome. Turner Syndrome is a chromosomal abnormality affecting girls. Although each case is unique and symptoms vary, some common manifestations are physical abnormalities, sterility, susceptibility to a variety of health problems such as congestive heart failure, and learning disabilities.
“I felt something was askew in the pregnancy,” recalled Elise. “When she was born, there was something about her that looked different than my other children.”
Sofia was initially given a clean bill of health, but a nurse soon discovered that the baby had an irregular heartbeat. Once home, the baby would cry hour after hour, was prone to sickness, and wasn’t eating.
“The first 10 months were hellish,” Elise said. “It was a rough go.”
A cardiologist diagnosed Sofia with Turner Syndrome, and she was admitted to the hospital. John and Elise already had one- and two-year-olds at home, and it was a rough period in their marriage. John was working much of the time, and then would go to the hospital to relieve Elise. Elise recalled that she and her husband were like “two ships passing in the night.” Adding to the stress, Elise discovered she was again pregnant.
Their Catholic faith was invaluable to them at the time. “I don’t think we’d still be married without the Faith,” Elise said. “Having a child that was constantly sick was hard on us. The Faith was the glue that held us together.”
The couple also relied on the ongoing prayers of family and friends. They received numerous letters of support, prepared meals, and money to help with the bills. “People knew we were a young Catholic family and reached out to us,” Elise said. “Their prayers got us through the worst of it, and they continue to pray for us daily.”
Despite the challenges, the couple is grateful for Sofia. She’s a joyful child, Elise said—when she enters a room, “it’s like a light bulb turning on.”
“She makes us laugh and is caring and loving,” said Elise. “When we’re having a hard time, she laughs, and everything is fine. She’s really a gift from God.”
At the moment, the future is uncertain for Sofia. She could live a long, healthy life with few health problems, or die young of congestive heart failure. When Sofia is seven, her parents will have to decide whether or not to give her growth hormones. The philosophy of parents with Turner Syndrome, Elise said, is, “Take it one day at a time.”
“God gives us what he knows we can handle,” Elise said. “If we rely on him, there aren’t any challenges we can’t meet.”