Taylor Ponds, 16, rolled groggily into the bathroom to start her morning ritual. She showered and listened to rap music, pausing frequently and skipping a song she just didn’t feel. She decided on J. Cole, and proceeded to spend an extra 4 minutes under the water because she wanted to listen to the song twice.
“I love music,” she said. “I don’t know what I’d do without it.”
After adding a final touch of lotion on her hands for the day, Ponds crossed the hall and helped her brother Malachi, 4.
He is one of the more than 400,000 people diagnosed with Down syndrome in the United States, according to the National Down Syndrome Society. Malachi’s needs shape Ponds’ life and her outlook on many things. Every morning, Ponds puts his thyroid medication in his milk.
“It has made me a more tolerant person,” she said. “I wasn’t the nicest person before…”
Regardless of the added responsibility, Ponds works actively in school and extracurricular activities. An incoming sophomore, Ponds attends Harding Fine Arts Academy, a high school in Oklahoma City focused on arts and academics. In her free time she takes pride in cheering for the school squad, and loves hanging out with friends.
Although she enjoys being a self-described “giddy person” and has a vibrant smile, at home, where she lives with her mother and brother, she carries more responsibility than many others her age.
“I’m the rock of my family, especially because of my brother,” she said. “But I’m OK with it.”
Doctors diagnosed Malachi with acute myeloid leukemia two years ago. Ponds visited her brother in the hospital daily for nearly a year, working on school assignments in the uncomfortable chairs of the sterile-looking break rooms.
“Or I’d just get it done at school if I could,” she said, shrugging. “When I saw my brother I didn’t want to have to study.”
Malachi fought cancer into remission, and the experience made Ponds thankful.
“You only get one chance. Make your time worth something,” Ponds said.
She first learned this lesson in her neighborhood, where fast food businesses in the area close early each night because of the crime in the area, according to locals. The reality of the danger has hit home for Ponds, who a few years ago lost a close friend in a drive-by shooting.
She was again affected by personal tragedy in May 2013, when her 9-year-old cousin, Ja’nae’, was one of seven people killed in a tornado at Plaza Towers Elementary School in Moore, Okla. Ponds said the loss impacted her deeply, especially since, Ja’nae’ joined Ponds’ family for dinner a day before the tragedy.
“She begged not to go to school (the next day) because she wanted to spend more time with me,” Ponds said.
She said she takes the time to enjoy life when she can, and one of her favorite pastimes includes playing Marco Polo with her brother. Ponds’ outlook was not always so bright, however. Soon after Malachi’s birth, she found herself struck by initial embarrassment over the stigma of the disability.
“People would stare,” she said. “They were rude, and it was hard for me.”
Ponds admitted she struggled having patience with him. Since becoming more involved in the Down syndrome community, she has heard many stories about the judgment and social isolation other diagnosed children experience. Ponds, who is admittedly overprotective of her brother, confessed to sometimes overreacting to strangers’ questions.
Many teenagers clash with their parents over things such as curfew and chores, but Ponds said her relationship with her mother faces different challenges because of the stress of the situation. Regardless, Ponds said she hardly complains. Her compassion for children with disabilities leads her to want to dedicate her life to helping others. In 10 years, she sees herself settling down and starting the non-profit organization of her dreams: a safe-haven for children with special needs to have therapy sessions and social time in a comfortable environment.
“I want to be independent … and an advocate for the children,” Ponds said.
