Heart and soul

Finding the right summer camp for your kids can feel like a monumental task. 

It needs to work with your schedule, but it also must fit your children’s unique interests, keep them busy and offer a safe place to learn, explore and grow. 

And when you’re the parent of a child with heart disease, your definition of a “safe place” can take on a whole new meaning.

Enter Camp Odayin. 

Founded in 2002, the organization — named after the Ojibwa word for heart — offers special medically supervised summer programming for children with heart disease and their families.

That includes overnight residential camps for children in grades 1 to 11 at Camp Knutson in Crosslake, Minnesota and at Camp Lutherdale in Elkhorn, Wisconsin, in July this year. 

Camp experiences — complete with traditional activities such as swimming, boating, arts and crafts, volleyball, horseback riding, nature experiences, basketball and music — last a week and are tailored to meet the emotional and physical needs of kids with heart disease. 

Each cabin houses 8 to 10 campers and includes a staff trio — a camp counselor, a co-counselor and a nurse.  

Additionally, three to four cardiologists accompany campers during each session to provide support and medical attention, if needed. Having nurses and cardiologists on hand to dispense medicine and provide medical assistance means counselors can focus on mentoring campers. 

Jamie Mailer of White Bear Lake said it wasn’t easy, at first, sending her son, Andrew, to camp. She was used to protecting her son, who was born with heart disease, by scheduling his sports activities close to paramedic stations,
just in case he had a medical emergency. 

But Mailer found confidence in Camp Odayin’s specialized mission and its staff. 

“While we were sad to see our child go away for a while, we were very comfortable putting him on the bus and super excited for that next adventure,” she said. 

Camp Odayin will also offer a one-day summer camp Aug. 7 for grades K-3 at Dodge Nature Center in West St. Paul. This year, family camps will also be offered Oct. 16-18 in Amery, Wisconsin and Nov. 6-8 in Camp Lake, Wisconsin; and a moms’ weekend retreat is set for May 16-17 in Stillwater.

And guess what these camp cost? Thanks to donations, each camp costs $25 per child or less, depending on a family’s level of need. 

A cardiologist must recommend each camper’s acceptance into the programming, but that’s a small price to pay for families whose children typically take daily cardiac medications or have had cardiac surgeries.

Themed activities are part of the fun of Camp Odayin, which caters to kids with heart disease.

New experiences

Once at camp, children are separated into small groups. The campers in each group stay in the same cabin, share the same counselor and co-counselor and spend time together. During day activities, campers from all the groups come together to explore activities of their choice.

Campers wake up around 7 each morning and start their day with a flag raising and breakfast at 8:15 before moving on to rotating morning activities.

Next, campers eat lunch before taking a rest hour, followed by a variety of afternoon activities and choice time, including waterfront fun such as swimming.

After a period of down time, campers start their evening program, which is a surprise themed activity. One summer included a space night. Campers that year were delighted to explore the dining hall, which had been decked out with tinfoil to look like outer space. 

Though Camp Odayin sounds like a traditional summer camp, parents said the healthy and empowering environment makes the camp special for their kids. 

Mother Becky Shuck of Webster, Minnesota, whose daughter, Ella, was born with a congenital heart defect, said her 7-year-old went to residential camp for the first time last summer. 

Ella had a blast meeting new people and participating in all that camp has to offer, including riding a horse for the first time, Shuck said.

Summer camp director Brooke Byrd said many kids can experience another kind of first at camp: They might meet someone with a similar form of heart disease.

“Most of the kids who come to our residential camps don’t know anybody else like them,” Byrd said. “And a lot of the kids tell us that when they’re at home, they don’t share their story; they don’t show their scar. But when they’re at camp, they’re the majority, and they get to connect with other kids.”

A support system

Camp Odayin has also fostered a strong community of children and parents who are dealing with heart disease. 

Mailer said building relationships with other Odayin families that extend past camp has helped her son and family navigate life with heart disease.

“Just being able to connect with different families who understood what we were going through was huge,” Mailer said. 

When Andrew had his first open-heart surgery, campers who had gone through the procedure explained what it was like from a child’s perspective. 

“For him to be able to connect with somebody who he has built a relationship with through camp, who he is very comfortable with, who has shared his scar and his story — and then be able to actually help Andrew maneuver and really manage through that situation — was really monumental for us,” Mailer said. 

Jill Berends, who’s been a Camp Odayin counselor for more than nine years, said she enjoys seeing the kids grow and build new friendships. 

One year, when a girl from a group of campers wasn’t able to attend camp because she had recently gone through a heart transplant, the other girls made a care package for her to receive in the hospital.

In addition to building strong relationships and community, the children have grown their resiliency and confidence
at camp.

“To see them going off into middle school, it warms my heart a little, because I used to have to help them pack their bags and now they’re cleaning all their tables and packing their bags, and the homesickness is less and less every year,” Berends said. “It’s really cool to watch them become really independent and on the path to become young adults.”

Camp Odayin’s Chippewa week includes kids in grades 1 to 6, and offers traditional overnight camp activities, such as swimming, archery, campfires and more in a medically supervised environment.

Looking to expand

Camp Odayin continues to grow each summer and is always looking to further support children with heart disease and their families. 

In 2018, about 320 children participated in its residential and day camp programs. In 2019, that number increased to 345 campers. Throughout all of its year-round programming, Camp Odayin served over 1,000 people last year. 

Though Odayin has reached its capacity in expanding its Minnesota residential camps, it’s hoping to grow its Wisconsin camp, which started in 2017. 

Additionally, Camp Odayin is researching how it could support siblings of children with heart disease through a siblings camp. 

But regardless of any changes to its programming, Camp Odayin will remain a safe and welcoming place where kids with heart disease can just be kids. 

“Our lives have changed since having Andrew,” Mailer said. “Your whole goal, your whole focus changes when you find out that you have a different plan in front of you, but for us this is the plan. And for some people — and some kids — that’s really difficult to come to terms with.”

Camp Odayin, however, bridges that gap.

“Camp helps them find the fun in it and understand there are good spaces to it, and there are ways to celebrate it — and there are ways to enjoy life because of it,” she said. 

Helen Sabrowsky is a University of Minnesota journalism student. She served as the 2019 summer writing intern at Minnesota Parent.