Lea Weldon is sitting outside near the playground at the Island School preschool when her daughter, Kawehi, rushes up with a big smile.
The 4-year-old is fearless as she pulls her shirt down to reveal a scar running down the middle of her chest.
“I’m a heart warrior,” she shouts proudly.
Her mom beams with delight as her daughter turns and talks to adults sitting there on a sunny Saturday afternoon.
“She’s had so much fun,” Lea Weldon said. “She would be totally winded before this last surgery. Today, she’s been climbing on the jungle gym. It’s been kind of awesome to see her in the last month or so having way more energy than normal.”
Kawehi was born with heart defects and has had three open-heart surgeries, the most recent Aug. 1. Her mom said the operation was a success and the recovery has gone well.
“She’s doing pretty good,” she said.
The family recently was connected with the Kauai chapter of HUGS (Help, Understanding and Group Support), a nonprofit organization founded on Oahu dedicated to helping Hawaii families facing the challenges of caring for a child with a serious illness.
The gathering included a train ride at Kilohana Plantation followed by a picnic lunch with games and prizes.
Kawehi, who has a twin brother, had a blast on the train ride, and was particularly thrilled to see the pigs. At the preschool, she ran around the playground with other kids, showing no signs of slowing down.
“It’s been an awesome day,” Lea Weldon said.
She said they were grateful for an organization like HUGS.
“It’s means a lot to be able to connect with other families who have gone through similar journeys,” she said. “It can be a very lonely thing.”
Since 1982, HUGS has helped thousands of families across the state with seriously ill children ages birth to 21 years who suffer from a range of diverse illnesses.
HUGS programs, like peer-to-peer support and emergency assistance, are free. They address the emotional, social, physical and financial needs of the entire family.
Marilyn Allen, Deborah Gillikin, Julie Hagensen and Melissa Gregory established the first neighbor island chapter of HUGS on Kauai.
Through St. Michael and All Angels Episcopal Church in Lihue, Allen chaired a steering committee for HUGS that has focused on identifying Kauai families who are caring for children with life-threatening illnesses and in need of support.
“What we were hearing is, these families were separated and didn’t know about each other,” Allen said. “We thought, ‘Wouldn’t it be incredible if we could bring them together so they could have some fun, but also network?’ So, this was the perfect group for us. We felt we could reach out into the community.”
There are 17 HUGS families on Kauai, and five were at Saturday’s celebration.
Allen said the support for the event was wonderful, with volunteers she didn’t even know were coming showing up to help.
The kids all got whistles on the train ride, which was a highlight.
“It was just so fun,” Allen said. “The little children just squealed with delight, and the pigs squealed back.”
HUGS, bottom line, is all about helping families.
“We’re just here to love and support, bring some joy into their lives and put those worries aside to come together,” Allen said. “The thing is, people really want to make a difference.”
Dad Jeremy Lee said his family was glad to be at the HUGS celebration.
“It’s been wonderful,” he said. “It’s been an awesome day. We had an opportunity to come and meet the folks from HUGS and also connect with other families from Kauai that have similar life experiences with our children. So it’s a great opportunity for us to fellowship and network.”
He and wife Nikki have four sons, Kahekili, Pa‘akamana‘o, Na‘auali‘i and Manawanui.
Pa‘akamana‘o, 8, was born with heart defects, and has had open-heart surgeries.
“We had a real rough going in the early part of his life,” Jeremy Lee said.
They spent several years traveling back and forth to a children’s hospital in San Diego. Ohana was there to help them through, Jeremy Lee said.
“One of the things we realized early on is the folks from Kauai are really unique in the way they responded and supported each of the families that go through something like this,” he said.
HUGS lets families share their stories and know they are not alone.
“And it helps us to heal,” Jeremy Lee said.
Pa‘akamana‘o’s health is stable now, but more challenges are ahead, including a heart transplant.
But Saturday was all about the families and kids having fun, feeling the love and having a worry-free, laugh-filled day.
“My son is thriving right now,” Jeremy Lee said. “We get to enjoy just being parents and kids.
“Today has been an awesome day for him and all the rest of his brothers. It’s a great opportunity for us to just enjoy.”
Which is exactly what Allen and the other HUGS volunteers love to hear.
“We’re lucky,” Allen said. “We can see we make a difference right away. We get to give hugs, have fun and introduce families to each other. We’ve got a great job.”
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Bill Buley, editor-in-chief, can be reached at 245-0457 or bbuley@thegardenisland.com.
