[dropcap]A[/dropcap]malia Gonzalez, 24, has been caring for her 29-year-old sister for the majority of her life. “I didn’t really have a childhood. I spent all of my time taking care of her,” said Gonzalez. Her sister has microcephaly and cerebral palsy, which makes care intensive.
“I babysit her. I change her diaper. I feed her. Everything you would do for a baby. She can barely speak,” said Gonzalez. Gonzalez said the biggest challenge is social. When Gonzalez takes her sister out in public, her sister often yells and acts aggressive.
“It’s been really hard because people judge without really knowing,” said Gonzalez. But Gonzalez said she doesn’t care.
“I try to be as social with her as possible. It’s not fair that she is treated differently because she has a disability,” Gonzalez said. She said that caring for her sister is rewarding, especially when she can see her growing and learning new things.
Recently, Gonzalez was selected as one of the six finalists in the “Champions of Care” contest, hosted by the Johnson & Johnson Company. The winner of the “Champions of Care” contest will go to the final match of the 2014 FIFA World Cup in Brazil.
“I was excited when I found out I was a finalist,” Gonzalez said. It was also a bit of a surprise. “Everyone else was doing these big national things. I didn’t think I’d be noticed for something so small,” she said.
Gonzalez’s family is from a small town in Mexico, where people don’t have too much money. She said that this heritage has inspired her in caring for her sister. “When I go to Mexico, everyone is just so caring, helping each other out. That’s where it comes from,” she said. Gonzalez cares for her sister along with her mother, but said she herself sometimes feels like her sister’s mother too.
“It’s between me and my mom. We switch off. It’s always been just me and my mom,” she said. In addition to caring for her sister, Gonzalez juggles a busy schedule and volunteers often. Volunteer work, she said, has always been part of who she is.
Gonzalez said she is always running 5Ks for various causes. She also volunteers for hospitals, animal shelters and works with middle-schoolers in the Pilsen neighborhood. Gonzalez also worked with the Chicago branch of Special Wish, an organization that grants wishes to children with various diseases and disorders.
Gonzalez worked on a lot of video projects with Special Wish and eventually wants to produce a feature-length documentary about her sister called “Baby for Life.” While lack of funding and equipment has been the main challenge, Gonzalez said she is ready to get her sister’s story out to the public.
Specifically, Gonzalez wants the documentary to take a look at the educational opportunities for individuals who have disabilities. At many schools, there are age limits with 21 generally being the cut-off, Gonzalez said.
“[My sister] is 29 now, stuck at home. It’s not fair that she can’t go to school,” Gonzalez said. While her sister was enrolled in a day program, Gonzalez said that she didn’t feel it was a good fit. “It was more just a place to keep her. It wasn’t offering the education she needed,” she said.
Gonzalez graduated from Columbia University in 2011, and says that her main focus for the future is to keep doing what she is doing. She wants to find a job and get going in her career so she can give her sister what she needs.
“Everything I’m doing is for my sister,” Gonzalez said. She said her experience with the Care contest has been great so far. “A lot of people know more about my story. Even friends who know me, or thought they knew me, know a lot more now.”
The support Gonzalez has received from family, friends and even strangers has been welcoming. “Everyone has been so proud. That’s something I’m really grateful for,” she said.
“Care comes in different shapes and sizes. It doesn’t matter who you give it to. Even if you’re smiling at a stranger, that’s something you’re giving,” she added.
Voting for the final winner ends on May 25. More information about the contest finalists can be found on the contest website at careinspirescare.com/en/champions-of-care/consumers.
This post is also available in: Spanish