Siblings Rally Around Their Sister With Down Syndrome
IRVING, Texas — “Don’t forget to turn your clock forward; it’s daylight savings tonight.”
“Remember to give your dog his heartworm medication; it’s the first of the month.”
“It’s April Fool’s Day; want to hear a joke?”
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“It might be a bad word, but I’m a grown woman, and I can say it.”
The Marcellus siblings love their 51-year-old sister and her phrases they’ve dubbed “Xanisms.”
Xan, short for Alexandra, is the youngest of 13 children of the late Rose Mary and John Marcellus of Irving. She was born with Down syndrome in 1969, a time when the medical world often did not have great advice for families.
Amy Marcellus, 52, remembers asking their mom what it was like when Alexandra was born. “The doctors told my mom that Xan would never walk, talk or feed herself. ‘Just put her in an institution,’ they said. ‘She won’t live past her teens.’ Mom said she told them, ‘That’s my baby, and I’m taking her home.'”
Alexandra turned 51 on July 23. Throughout her life, her family has cheered her on and supported her in living an independent life, going to school, working, and, lately, as her health has deteriorated, taking care of her basic needs. For this close-knit family, there’s simply no other way.
“Xan felt responsible for us. Now it’s our responsibility to care for her,” says Rosie Marcellus Blake, 56.
Amy Marcellus agrees. “I know I can speak for my siblings in saying that taking care of Alexandra is one of the best things we’ve ever done in our lives, and to paraphrase the great Elton John: ‘How wonderful life is while she’s in the world.'”
Rallying around a single mom
The siblings lost their father in 1973. “Growing up in a family of 13,” I never thought much about it,” says Pete Marcellus, 58. “Now, when I might think my life’s tough, I think what Mom must have thought when Dad died: ‘I just lost the family breadwinner, and I have 13 kids!'”
“In a way,” Amy says, “the best thing that happened after Dad died is that Mom went back to work — and all of us kids, including Xan, had to be self-sufficient. … I remember doing chores at age 7, and so did Xan. As she got older, she was able to dress herself, bathe, make dinner.”
“We encouraged Alexandra’s independence,” says Mike Marcellus, 60. “We kept an eye on her and helped her in the way she did things.”
The family attended St. Luke’s Catholic Church in Irving, where they learned about the Helping Hand School for preschoolers with learning disabilities. “The headmaster came and talked to my parents and told us the worst thing we could do was to coddle Alexandra,” Mike says.
Alexandra attended Helping Hand School for several years and then transitioned to the Notre Dame School of Dallas, on the campus of the University of Dallas. The school’s mission is to help students be independent in the outside world with the assistance of vocational training. In fact, Theresa Francis, the school’s principal, advised Alexandra and the Marcellus family and helped Alexandra find a job at McDonald’s.
Alexandra loved the job, where she made fries and cleaned the lobby. Later on, she volunteered at Irving Hospital (now Baylor Scott & White Medical Center — Irving), the same hospital where her parents had been told Alexandra would never walk or talk. Xan went on to be nominated as one of the volunteers of the year and received honorable mention at a luncheon she attended with her mother and sisters Amy and Rosie. “She was so excited to see her picture flash on the big screen — ‘That’s me!'” Amy says.
Before Rose Mary Marcellus died, she told Pete to promise that Alexandra would never be put in a home. “We’ve never had a health care aide,” Amy says. “We do it ourselves. We bathe her and feed her.”
Today, Alexandra lives with brother Damian, 57, in the family home. The siblings call it “Alexandra’s House.” Damian is her primary caregiver. Sisters Rosie and Eleanor live across the street. Amy, Monica, Pete and his wife, Theresa, and Chris all live in the Dallas-Fort Worth area and participate in the shifts. Mike and Kathy help out from afar but not in day-to-day care. Brother John Paul, a.k.a. Bo, was killed in a car accident in 1995. She also has brothers Matt, 64, and Antone, 61.
Like many people with Down syndrome, Alexandra has developed dementia as she has aged, and her health has deteriorated. Family members say they noticed a decline following the death of their mother in 2013, and she was diagnosed about three years ago. She started to lose her ability to walk and talk, which frustrated her and led to some depression. “She started to fight us when we tried to dress her because she didn’t want help,” Amy says. “She was very stubborn and headstrong. This is part of Down’s but also a Marcellus trait!”
Today, Alexandra cannot walk, and her speech is limited, but Amy believes her sister recognizes all of them. And once again, the Marcellus family has rallied around her care.
The family determined that they need to be present two at a time in two shifts, from 9:30 a.m. to bedtime. One person is designated as the on-duty person; the other is on-call. Theresa emails the schedule to all the siblings every Friday, letting them know what shifts they have for Xan’s care.
The schedule, Rosie says, has helped the siblings keep in touch. “We are all busy in our own circles, but taking care of Alex brings us together. When Mom was alive, we all had dinners together, but when she died, that kind of fell off. When we are together taking care of Alex, we communicate well. We’ve developed a trust among ourselves. I really enjoy hanging out with my brothers and sisters.”
Going with the flow
How do the siblings manage? “It just works,” Rosie says. “We run short sometimes. When my brother Pete had the (COVID-19) virus, Eleanor had to pick up the slack. Damian does a lot on his own. I try not to stress since El and I are across the street and more than happy to pick up a shift.”
Pete says, “Life would be a lot more difficult for all of us if it wasn’t for Damian. Xan clearly loves Damian, and Damian clearly loves Xan.”
Rosie manages Alexandra’s Social Security benefits. Theresa and Pete negotiate the bills and taxes, including the homestead exemption.
John Mrozek grew up next door to the Marcellus family. He says everyone on the block gravitated toward Xan. “I’m one of four in my family, and it’s tough keeping family together once the parents are gone. But Alexandra brought these kids together. They are selfless in their devotion to her. … As I’ve told Pete, I bet their mom, Rose Mary, is looking down on them proudly. I believe that Alexandra is Rose Mary’s legacy.”
“Alexandra,” Mike says, “has always been protective of all of us, like we were of her. … She’s the bow in our knot. She’s the glue.”
Life with Alexandra: As told by her family
Chris Marcellus: When Xan was about 8, she helped fold laundry. “Mom had gotten me some new underwear and forgotten to put my name inside the label. When Xan saw the underwear with no marking, she took a marker and crudely wrote ‘CRIS’ on each one.”
Mike Marcellus: “I always used to walk our German shepherd when I got done with (high) school, and before I left for my job at Irving Hospital. One day I got a call from a neighbor who said there is a little girl on the street with a big dog. When they tried to check on her, the dog wouldn’t let anyone near her. I went to investigate. Turns out it was 10-year-old Alexandra. ‘Junior needed a walk,’ she told me.”
Rosie Marcellus Blake: “She was our secretary, very confident and organized. She loved everybody. We once got her a sign for her bedroom door that says ‘Manager,’ which she loved.”
Monica Marcellus Winters: Alexandra loved to make brownies, or “browns,” as she called them. Every Friday at 10 a.m., Alexandra would chop the nuts; then at 2 p.m., butter the pan; and at 2:55, just after General Hospital ended, she would go to the kitchen, set up the ingredients and make brownies. Monica says she got the recipe from her. “She made them from memory, and they always turned out great.”
Kathy Marcellus: In 1995, the family lost brother Bo, the victim of a drunken driving accident. At his funeral, Kathy, the oldest, went to the pulpit with Alexandra. Kathy introduced herself and her sister, saying, “‘I’m the oldest, and Xan is our youngest.’ There were hundreds of people at the church. Xan came forward and, with a flip of her hair, told the crowd, ‘Bo loved my brownies, and he loved me very much, and I will miss him.'”
Theresa Marcellus: Theresa likes to say the reason she married Pete Marcellus was so she could become Alex’s sister. Theresa says that she became a special ed teacher in part because of Alexandra.
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