In October 2001, 9-year-old Ava Conklin of Elkridge was diagnosed with a brain tumor. After surgery to remove it, Ava contracted meningitis, which in turn, caused her to have a series of 13 strokes that left her in a coma. After 10 days, she woke up, unable to move or breathe. But she could blink.
“One blink for yes, two blinks for no. That’s all we could do,” her mother remembers. After 41 days in pediatric intensive care, Ava was transferred to Kennedy Krieger Institute to begin the long recovery process. She spent a total of four months hospitalized.
But she recovered, slowly. “First she was moving her arms. She could push a button on a screen. Then she was in a tilted wheelchair. Then a normal wheelchair. Then she got her speech back. It took her a whole year to [go back to being able to] speak. She had to relearn everything.”
While Ava fought to reclaim her former abilities, her parents were there to support her every day. Anne says she and her husband “rotated out sleeping at the hospital or staying home. It took a huge toll on the family. At that point, our youngest wasn’t even in school yet.” As they dealt with Ava’s medical crisis, Anne claims Ava’s siblings “got the shaft.” Their middle child, Charlotte, “took it the hardest. She had to go from little sister to big sister. It was really hard,” Anne remembers.
The staff at Kennedy Krieger knows the Conklin’s experience was not unique for the families in their care. Kelley Marcue, a therapeutic recreation specialist, says eight years ago a group of therapists and staff from Kennedy Krieger discussed the idea to start a camp for the medically fragile children in their care — and their siblings.
Camp S.O.A.R (Sibling Outdoor Adventure Retreat) was held at Hashawha Environmental Center in Westminster for one summer weekend and every staff member volunteered their time for the endeavor.
It was not just for the campers, but “for families’ respite. Some families have never had that time for themselves,” Marcue says. Additionally, camp siblings get to meet peers. They may feel like they’re the only one with a medically fragile or disabled sibling, so meeting other kids like themselves is important, she says.
The first weekend was such a success it became an annual event. This summer, Camp S.O.A.R.’s eighth year, 23 campers — all current or former Kennedy Krieger patients — from 10 families converged on the camp for a weekend in late July. Campers could bring any sibling between the ages of eight and 16. Marcue says returning families are common. “This year we had six or seven,” she says.
On Friday, campers arrive, settle into their cabins, set up their bed and unpack. After dinner and some ice-breaking games, a nature scavenger hunt “helps the kids get lay of the land,” she says.
Most activities take place on Saturday. “We wake up bright and early,” Marcue says. “After breakfast, there’s canoeing on the pond. We have enough equipment and staff to make sure every child can participate safe and sound.”
Amidst the traditional camp activities of campfires, s’mores, swimming, tie dye, arts and crafts, Camp S.O.A.R. tried something new this year, color wars. “We had four different teams with competitive but fun rivalries,” Marcue says.
Camp S.O.A.R. has helped her kids bond, Anne says, because Ava generally gets all the attention. At the same time, her long hospital stays and recovery kept the siblings apart.
At Camp S.O.A.R., “they get a whole weekend of bonding. Just them, without the parent dynamic,” says Anne, who noted a change when the kids returned home. “It felt more like [they were] a team. They’d never been to sleepaway camp, and they bonded together as this was their first experience away from home.”
The experience was great for Ava’s confidence too. “Ava could do everything they could, because they have nurses, [physical therapists] and staff to help them kayak, swim, and do all the same activities, together. Usually it’s just Ava watching.”
This was the family’s fourth year at Camp S.O.A.R., and according to Ava, Charlotte, and Owen, it was their best.
“The first year I was crazy. I was so nervous. I reluctantly sent them.” Anne remembers. “It was the year after Ava had been discharged from inpatient. I kept texting them: ‘Can you send me an update?’ They texted me pictures.”
Charlotte, 14, says she was also a little nervous about leaving home the first time. “I wasn’t scared for myself,” she explains. “I was nervous for Ava. I’d been to sleepovers, but Ava hadn’t before.” But the counselors and staff “took such good care” of Ava and they had “such a good time,” her anxieties subsided, she says. Owen wasn’t scared. “I was pretty glad” to go, he remembers.
Ava says her favorite part of camp this year was the addition of the color wars. Charlotte says her favorite part of camp is “getting to come back each year, and seeing everyone improving physically from last year.”
The Conklin kids say they also loved being awarded camp nicknames. Charlotte was “Glampiest Camper.” Ava was “Jammiest Jammer,” because “Ava loves music, she knows every word to every song,” Charlotte says. Owen was designated “Loudest Speaker,” and although the title doesn’t require much interpretative effort, Charlotte explains: “He would yell so much. They made him the bingo caller.”
Camp S.O.A.R. still draws its all-volunteer staff from Kennedy Krieger’s ranks, and although Marcue says they’re all exhausted at the end of the weekend, she wishes camp lasted longer. She’d love to expand Camp S.O.A.R. to a week-long camp someday. “It’s really hard to fit all of it in to one weekend,” she says.