Lindsey Combs, 13, enjoys listening to music and watching old episodes of "That ’70s Show" with older sister Alissa. It’s the typical sort of thing sisters do.
But there is little else typical about the relationship between Lindsey and 17-year-old Alissa, who has cerebral palsy and a seizure disorder.
A photographic journey featuring works of and by siblings of seriously ill children in HUGS (Help, Understanding and Group Support), sponsored by ProjectFocus Hawaii:
Lindsey has taken on many of the duties for caring for her sister, including feeding her through a tube. "I read to her lots. She loves colorful picture books. We also sing in the car," Combs said.
Seeing how people react to Alissa has been hardest for Combs. "When we are in public, people will stare. I know what’s going through their mind, and it makes me feel protective," she said. "Alissa makes me appreciate the small things in life. She has inspired me not to complain about unimportant issues."
HUGS (Help, Understanding and Group Support), a nonprofit agency that supports families caring for a seriously ill child, provides a comfortable setting for Combs to hang out with her sister. "When we are at HUGS, nobody stares, which is nice," she said.
Over the 14 years the Combses have been involved with HUGS, the agency has become a second family to them, according to Lindsey’s mother, Catha.
"It’s nice to have someone who truly understands the turmoil that you are going through," she said. "Everyone’s medical story is different, but we all have a common thread in our lives. It’s nice to know that you are not the only one. At HUGS you can be yourself and just recover.
"People really don’t get it. They think of HUGS as a really sad organization, but it’s a really happy place," she said.
Families can take advantage of an array of HUGS services, including a teen program, monthly family dinners and respite opportunities for parents. "For some it is one of the few times that many families can have fun. There are no doctors, no hospitals," Combs said.
This year, HUGS was the human services agency chosen to participate in ProjectFocus Hawaii. ProjectFocus was founded in 2005 by professional children’s photographers Laurie Breeden Callies and Lisa Uesugi to enhance the lives of youngsters age 10 to 18 by conducting a 12-week photography internship. During the program, participants are both photographers and the subjects of photos themselves.
The effort culminates in a series of professionally staged exhibits and a coffee table book containing the group’s images.
The HUGS youths were charged with photographing their sick or disabled sibling. Each pair also wrote short essays about their sibling for display alongside their photos.
"We decided to focus on the siblings of seriously ill children," Callies said. "These kids are oftentimes the ones who feel neglected and alone."
This year’s theme, "Kindred Spirits," is a reflection of the compassion and care the siblings share, she said. "The exhibit gives them a chance to be recognized for the time and support that they have invested to enhance their sibling’s life."
"Our main focus is inclusion of the whole family. … Everyone receives individual attention," said HUGS coordinator Sherri Vallejo. "This is the first time that we have branched out and focused on a specific sibling. We try to increase the quality of life while they are going through this situation."
The ProjectFocus program has allowed 10-year-old Zachary Rodriguez and his family an opportunity to draw closer. Zachary’s 9-year-old brother, Josiah, was diagnosed with cystic hygroma when he was 11 months old. Cystic hygroma is a mass that commonly occurs in the head and neck area as a baby grows in the womb. It often isn’t diagnosed until the child is older. For most of his life, Josiah had to breathe through a tracheotomy opening in his neck and also had a stomach-feeding tube.
Zachary shared his feelings during ProjectFocus meetings and in his essay that he felt the family loved Josiah more than him. The boys’ mother, Lucy Rodriguez, said she was unaware of how her older son felt. "When I read his essay, I was in tears," she said. "I felt like a horrible mom. My husband and I were doing our best."
Since then the family has been working to make Zachary feel more appreciated. "Zach is not good about expressing himself. He keeps everything inside," she said. "Now he’s more confident, more talkative and interacts better with his brother."
Zachary explained that he felt sad for his brother, but it was hard to see him receiving all of the attention. His anger has subsided, and he now just wants Josiah to be healthy. Now that Josiah’s tubes have been removed and he is functioning more normally, Zachary is feeling less resentful. "Now that he is better, we play games, look for bugs and we want to work on a treehouse," he said.
"I hope people won’t think I’m a bad brother because of this. But I don’t always see Josiah the way other people see him," Zachary said. "I see him as fun, kind, talks too much, lazy and sometimes annoying. I still love him so much."