Paula Umana thought her life was under control.
The Costa Rica native — who, in the 1990s, achieved the remarkable feat of becoming the No. 1 tennis player in her country — was enjoying an active lifestyle in Atlanta, raising her four daughters alongside her husband, Serge.
But things took a turn during her fifth pregnancy in 2014.
What started with an odd sensation of extreme weakness soon progressed into losing strength and movement in her legs only two months after giving birth to her son. She was diagnosed with “the most aggressive version” of chronic inflammatory demyelinating polyneuropathy not long afterward, a neurological condition that left her paralyzed and in bed for six months.
Ten years later, Umana, a tennis coach, motivational speaker and author of “40 Gifts of Hope,” shared her story during a May 10 webinar on “Where Faith and Disability Meet,” organized by the National Catholic Partnership on Disability, whose aim was to shine a light on the experience of disability through the lens of Catholic mothers.
“Disability knocked on my door, and it was very challenging,” Umana said, adding, “A lot of beautiful things happened after that: My body started to come back, but from my knees to my feet is still paralyzed, so I am considered a person with ambulatory paraplegia.”
While learning to be a mother with a disability was difficult in the beginning, for her and her children, she found solace in surrounding herself with people who shared her situation and within her faith community. The local Knights of Columbus helped make her home more accessible to her needs by donating wheelchair ramps and grab bars; also, a Catholic school contacted her to offer scholarships for her children.
Umana said that it was feeling embraced by the love of her family and community that allowed her to “survive the disability,” igniting in her a passion for its ministry.
“I have a big passion for helping people dealing with suffering. What can we do for them? What tools can we give? Because we need to help each other,” she said.
Another panelist featured on the webinar was Debra Evans, an East Coast transplant to Los Angeles who, while pregnant with her son John David, became ill with “an acute onset of eclampsia,” which led to a premature birth at 26 weeks in 2008. Her son went on to spend the first 94 days of his life in the neonatal intensive care unit, during which time Evans “discovered a strength that I never thought I had.”
As she was going through this difficult period, Evans realized many people were facing similar challenges, and, similar to Umana’s experience, a new passion for advocacy was born in her: a desire to support families of children with disabilities.
Evans founded an organization that “provided opportunities for moms to break bread together, to share resources, and support each other on our journeys,” she said.
“I was committed to securing access and inclusion for people experiencing disability in schools, religious settings, the arts, and the community,” Evans added.
Then, when her son became of age to receive formal religious education, Evans, who holds a master’s degree in pastoral theology from Loyola Marymount University, joined the Los Angeles Church of the Visitation, first as a volunteer and then as its coordinator of religious education and sacrament preparation, “to develop a fully inclusive religious education program, where my son, and others like him, would not only feel included but would also feel a sense of belonging.”
The third speaker of the webinar, Lori Wieder, of Stillwater, Oklahoma, echoed the sentiments voiced by Evans and Umana, especially those regarding building community and cultivating a sense of belonging for her two young adult children who have “this rare genetic disorder that causes intellectual disabilities.”
Wieder, who converted to Catholicism when she married her husband, Mike, had a vast experience of working with groups that have a history of being marginalized — including individuals with intellectual disabilities and mental disorders — before becoming a mother, something she sees as God preparing her for what was to come in her motherhood journey.
“When I then had children with disabilities, I wasn’t afraid of it. I knew what they could do; I knew … they were going to be OK,” said Wieder, who serves as the disability advocate at her parish, St. Francis Xavier Church.
Despite her children not always behaving in a socially appropriate manner during Mass — including times when her son, Luke, jumps and claps following the reception of the Communion host — Wieder says that her children are very much welcome by the members of her parish community, who tend to acknowledge their atypical behavior with a smile. For her, this is a simple yet powerful gesture.
“Individually, when there’s a family in Mass, and a child is disruptive or loud or doing something that may be unusual, the best thing you can do is catch that momma’s eye and smile,” she said.
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