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Her heart’s in the effort
Lake Elmo woman who started heart camp is one of 10 Bakken honorees worldwide
Not long after a chunk of metal was embedded beneath her skin and wires became a part of her heart, Sara Meslow quit her job.
She found a more pressing mission: starting a camp for kids with heart disease.
Now, about 13 years later, the Lake Elmo resident is among 10 people worldwide who recently received a Bakken Invitation award, along with a $20,000 grant, from Medtronic, which named it for company co-founder Earl Bakken.
Founding a camp, staffing it with professionals who understand kids with heart problems and can address their complex needs and providing an environment where both kids and their parents feel comfortable weren’t the only things that lifted Meslow to the top 10 nominees.
Because she used the “extra time” granted to her by an implantable cardioverter defibrillator -- which would shock her heart if it beat at a dangerously high rate for too long -- to go to extraordinary lengths to improve the lives of others, Meslow was named one of the very few “Live On, Give On” recipients.
A child with heart disease
“I honestly couldn’t believe I won this award,” Meslow says. “It has helped to create so much awareness for Camp Odayin throughout the world.”
Meslow is also thrilled about the broader message.
“It’s helped to create awareness about kids with heart disease, because so many people think that heart disease is for people that are 80 and ate too many cheeseburgers,” she explains.
One of every 100 babies is born with congenital heart defects, meaning the heart or blood vessels form abnormally, according to the Mayo Clinic.
Meslow was diagnosed with an irregular heart rhythm at 13, and soon learned the term “supraventricular tachycardia,” though her rapid heartbeat didn’t seem like a big deal at the time.
“Supraventricular tachycardia, at that point in my life, was really something that was just an annoyance. I would sit in class and it would ‘dit-dit-dit-dit-dit’ -- it would race. I was like, ‘This is a pain.’”
And she was different. There was no other kid with a heart monitor on the softball field; no kid taking daily meds or going to the cardiologist.
At 23, she had a procedure that fixed the irregularity. For the next six years or so, her heart didn’t race and she didn’t have to take medication.
“I thought, ‘Oh, I am done! I am graduated!’” Meslow says. “And then when I was 29, I started having some different heart rhythms that felt very different.”
Close to cardiac arrest
Now, the rapid beats were in her heart’s ventricles, the bottom chambers that do most of the heart’s pumping work. Ventricular tachycardia is considered just a step away from cardiac arrest.
Meslow’s heart rate at times shot up to 240 to 250 beats per minute when she was just sitting down. She’d become lightheaded, as blood struggled to pump to her brain, but she didn’t know what was wrong.
“Those rhythms were scary because I would almost pass out,” Meslow says. Her cardiologist found out her heart was the problem, and a defibrillator was the solution.
One of the mornings she spent in the hospital, one of those quiet, freezing-cold January mornings, the first person to visit her was a nurse to explain what was about to happen to her.
“I remember the tears rolling down my cheeks and she’s showing me this device: ‘Well, this is going to be buried under your skin and the wires going to go down into your heart,’” Meslow says. “You kind of wanted to blink and go, ‘Is this real?’”
After the surgery, Meslow lived in fear for about a year, afraid she would damage the device she could feel just beneath the skin on her chest. She found herself leaning to one side or putting her hand over the foreign object, guarding it.
She knew it was her “built-in paramedics,” but was afraid to experience the shock that would reset her heart rhythm. She’d heard all about that.
“It’s the equivalent to getting the paddles, only it’s internal,” she says. “It’s like a kick in the chest from a horse.”
In 13 years, she hasn’t received one. Her heart sometimes beats wildly, but not long enough to receive the jolt that would zap her heart back to normal.
‘It just felt right’
Meslow worked at the Forest Lake School District for a while. When she wasn’t slinging iced teas at the Freight House in Stillwater during her summers off, she volunteered at a camp for kids with heart disease in California.
Her parents suggested maybe she could start something like Camp del Corazon. The idea stuck with her.
“I like to say it was just on my heart,” Meslow says earnestly. “It was something that I thought about for a whole year, and it just felt right.”
Plus, there wasn’t anything like it in the Midwest. Meslow quit her job, and spent a year researching and developing her plan.
The first summer of Camp Odayin -- named for the Ojibwe word for heart -- was in 2002.
“I always say that I birthed two things in the same year: one was my daughter and one was this camp,” Meslow says.
A pure gift
Meslow’s office is dotted with artistic renderings of hearts. The heart-shaped stones and coral pieces she’s collected are now flanked by the new award and the flag that waved above the U.S. Capitol the day Rep. Michele Bachmann recognized Camp Odayin in a statement, making it part of the Congressional Record. A collage of camp photos hangs on a wall.
Looking at the framed pictures of smiling faces and kids outdoors -- given to her in recognition of the camp’s five-year anniversary -- Meslow pointed out a couple of campers who have passed away.
It’s a “pure gift” to be able to be a part of the campers’ lives, she says, and the camp is often just as special for the kids and their families.
So many negative things crop up when a child has heart disease: bills, medications, restrictions during gym class.
“Camp Odayin is … something positive,” she says. “This is something your kid gets to do.”
A full life
Not only has Meslow freed parents and children to spend time away with people who understand what they’re going through, she’s become free herself -- of her early fears.
Meslow says she no longer worries about her device, except maybe when she’s having a tickle fight with her 11-year-old daughter.
“Now, my life is very full,” Meslow says. “I hardly have any restrictions. I have to talk on cell phones on my right ear and I beep at the airport.
“That’s about it. I live my life very much as though I don’t have a defibrillator.”
At the Bakken awards reception in Hawaii, Meslow stood next to a man who received the first heart valve transplant in Rwanda and now helps others get the care they need. A woman from Spain who uses a drug pump to manage symptoms of cerebral palsy created an organization to support and connect others with spasticity. Being around the other nine honorees was “completely humbling,” Meslow says.
Her takeaway: when bad stuff happens to people, they can either turn inward or outward.
“So many people turn inward and they feel sorry for themselves and they are angry,” she says. “These other nine people have all turned it outward and said, ‘Boy, yeah, I was dealt a crummy hand, but here’s what I’m going to do about it.’”
Kaitlyn Roby can be reached at 651-748-7814 and firstname.lastname@example.org. Follow her at twitter.com/KRobyNews.
The power of belonging
Camp Odayin is growing. The organization recently moved to a larger office in Stillwater, and is expanding camps throughout the Midwest, including retreats in the Twin Cities area and near Milwaukee.
The first year the camp served 53 kids. Last year, 260 kids ages 8 to 17 attended the residential camp, which has extensive medical staff to meet their needs.
The five-day camp stay includes hiking, swimming and horseback riding, among other activities. Day camps, winter camp and family camp are also available.
This year, Camp Odayin is adding a family camp near Milwaukee and a young-adult retreat for kids who’ve grown out of the youth sessions but still want to connect to their “heart family.”
“We talk a lot here about the power of belonging,” camp founder and executive director Sara Meslow explains. “You combine the power of belonging with the intention of camp; that is a pretty powerful experience for these kids.”
Tony Gross, a Medtronic employee, was one of four people who nominated Meslow for the Bakken Invitation award. His 13-year-old son has been going to Camp Odayin since 2007. “She gives all her time, essentially, to Camp Odayin and trying to help children with heart defects,” Gross says. “She epitomizes that award.”
His son underwent three open-heart surgeries before he was 3, Gross says. He was on blood thinners and other medications, so even small cuts and scratches were a big deal. Gross and his wife didn’t trust the child to any other caregivers for years.
But Camp Odayin was a safe place the family, and eventually just his son, could go to experience camp with kids and parents facing similar joys and struggles, Gross says.
“He’s developed friendships. He knows he’s not alone.”
The family has gotten to know Meslow well over the years, Gross says.
“She’s very sincere,” Gross says. “She draws you into conversations. She’s very passionate about what she’s doing.”
More information is available at campodayin.org.