Alissya is my angel

A Conversation with Deborah

May 2021

Alissya is an adult who is sweet, patient, and has a beautiful smile. She doesn’t speak, yet she communicates in subtle ways with a nod of her head and facial expressions. Alissya communicates kindness and patience with caregivers who provide complete 24/7 care. With few abilities, she uses a wheelchair, and requires special people who can anticipate her needs. Alissya’s caregivers describe her as their angel. What she enjoys most are horseback riding, music, gatherings with family and close friends, and being outside at night.

Alissya lives in Aptos, on California’s central coast, with Deborah, her mother, and Deborah’s husband, David. Their home is a few minutes from the beach, where they go for what Deborah calls their “walk and roll.” The state park provides a large wheeled chair that anyone can borrow, yet its one-size-fits-all dimensions don’t work for Alissya. It’s Deborah’s dream to design a beach wheelchair that will fit her daughter.

Deborah shares, “As a Christian Scientist raising a child with special needs, I find so much support to do what is thought to be difficult. Raising a child to adulthood is challenging enough without disabilities. Disabilities make it uniquely challenging and uniquely a blessing. Meeting these challenges with Christian Science gives me so much strength.” 

Since the pandemic struck a year ago, Deborah has served as Alissya’s sole caregiver while continuing to work as a real estate agent from her home office. “During this period, I take only one client at a time, because it can distract from the attention I give Alissya. I am able to work online via email, phone calls and, of course, Zoom meetings. Alissya has gone with me when I meet clients face-to-face at a property. Clients are very understanding. We make work fun!

“I am the only Christian Scientist in our family,” she adds. “Even without Christian Science, the rest of the family has no answers. The world has few answers to what we face day-to-day.” Alissya’s physical diagnoses include cerebral palsy, epilepsy, quadriplegia, and disorders associated with those labels. “There are some answers, but they are not healing answers,” she discloses.

“As practicing Christian Scientists, we can expect to have healing answers. It’s not necessarily the big, dramatic healing like the man at the pool in Bethesda; but moment-by-moment, when Alissya needs to be fed, lifted, changed, bathed, comforted or just wants companionship—the answers are there. I like looking and listening to God for what’s right, what’s happy, and what’s good.”

‘I was born to ride!’

Alissya participates in an adaptive horseback-riding program. “It’s hard for people to imagine—when someone can’t sit up and is fully supported upright in a wheelchair—that she can get on a horse,” Deborah says. The first time she took Alissya, the program manager didn’t start by asking how to position her on the horse: She lifted Alissya out of the wheelchair and laid her on the horse in a prone position, with her elbows alongside her chest near her shoulders. Deborah recalls, “Alissya lifted up her head and smiled like she never had before, as if she was saying, ‘I was born to ride!’ It was wonderful.” That’s when you’ll see Alissya with her biggest smile. That riding position on a horse in motion is Alissya’s opportunity to exercise her own ability to lift and hold her head up and look around.

Developing the spiritual ability, rather than just physical and mental abilities

Five years ago, a practitioner friend mentioned CherishAbility to Deborah. The friend knew that CherishAbility offers financial assistance for practitioner services, and suggested Deborah get in touch to learn more. “CherishAbility reaches out to families, providing regular opportunities to support each other through its Family Support Network. I’ve really enjoyed hearing about other families’ needs and accomplishments,” comments Deborah. “In this network, we look to develop the underlying spiritual ability, rather than just physical and mental abilities.

“Sometimes people don’t know how to respond when seeing someone with disabilities and special needs. We can be gentle with them, too. It’s true even in church. They are kind people who offer prayerful support and even want to help practically. While we often need help, we also learn to manage without much assistance. Yet, I feel it’s important for us to give others opportunities to help by humbly accepting their kindness and generosity.” 

CherishAbility continually develops ways people with special needs and their families can connect with one another. Last December, Deborah and Alissya participated in RVRN’s first online Christmas gathering. They had fun playing bingo, decorating cookies, and singing hymns and Christmas carols. “Alissya enjoyed the whole event,” Deborah says, and they both look forward to attending more online programming offered by CherishAbility.

‘She’s my angel’ 

Though she doesn’t communicate verbally, Alissya’s joy and love are evident to those around her. One young woman has been Alissya’s caregiver for 20 years and they are close in age. “She told me, ‘Alissya is my angel. I tell her my secrets.’ This caregiver is not currently working for us because of the restrictions we’ve followed during the pandemic, so she’ll text and check in on Alissya to see how she’s doing,” Deborah explains. “She looks forward to working for Alissya again. Alissya continues to be her angel and they will always be friends.” 

Deborah feels, “Alissya is serving her purpose. She has a nonverbal language, although it is not an unspoken language. She’s fulfilling God’s purpose in other people’s lives. I say almost daily—‘Alissya is a blessing.’ Her presence has turned me to God and made me a better mother. She is my angel in that way. I feel like she’s an answer to my prayer to be a better person. There is evidence of God’s care and blessings that bring all us together to participate in Alissya’s life.”