February’s Heart Month is personal to this family
“When you are sitting in the hospital with a sick child, it’s a level playing field,” said Wendy Wilson sitting at the E Dock at Faro Blanco Marina on the family’s 32-foot Bayliner. “It doesn’t matter what your social level is, or what kind of car you drive. It’s kind of like boating. We are all rooting for each other, all here to help each other out.”
Wendy, Bobby and their four dynamic daughters, Nina, AnnaMay, Ella, and Mia are on the “loop” – an almost yearlong trip from Ohio down the Mississippi, around Key West and back up the East Coast. And they are doing it with youngest daughter Mia, a happy, bright ball of sunshine who is battling a congenital heart defect.
Mia takes about 40 medicines a day. The chatty preschooler loves to draw and paint, talk on the phone and take selfies. She wants to know your name, who you’re married to, what everyone’s job is, and if she can wear your sunglasses and watch. She can’t swallow food, so she’s hooked up to a feeding machine almost 24-7. But, that doesn’t keep her from swimming in the pool with her sisters, or riding on the fly bridge with her dad out to Sombrero Reef.
Mia was born flat-lined on Feb. 19, six years ago. Doctors prepared Wendy and Bobby to expect five hours, then five days, and now she’s about to celebrate her sixth birthday. Her sister, Nina, was in middle school at the time and remembers the kids at school worrying about what kind of shoes they were wearing. “It all just seemed so minuscule when a little baby is fighting for her life,” she said.
The next five years were spent in basic quarantine for little Mia, with three open heart surgeries, and issues with her eyes, ears, stomach, and even a broken leg. Bobby and Wendy always said they wanted to do the loop when they retired, after watching friends complete the journey in the pre-social media days via emails and dial-up AOL. Those same friends sold them their boat, and with zero big-boat experience, they packed up the family, and all of Mia’s medicine, and got underway.
One hundred eighty three days later, they found themselves in Marathon. “We have to stay in marinas and close by medical care, just in case” said Wendy, pointing out the converted shower where they store all of Mia’s medicine. “We also need a real shower.”
In Marathon, they have already been on a tour of the Coast Guard Station, the Turtle Hospital and the girls’ favorite, Aquarium Encounters. Mia’s favorite was the stingrays; she likened them to dogs. AnnaMay’s was the sea slug in the touch tank, and Ella loved the angelfish. The girls are looking forward to seeing the Butterfly Conservatory in Key West, if Bobby can find a spot at The Galleon to dock.
While in port, family in Ohio send Mia’s medical supplies down via FedEx and there is constant communication with her doctors via a wifi hotspot, the same hotspot Bobby uses to work as an electronic processor. And, there are harbor hosts – complete strangers – who accept packages for them, or give them rides to the grocery store. “The deliveries aren’t little either. It’s usually like eight huge boxes that fill the entire cabin,” said Wendy. “We are waiting on Mia’s heart meds today. It’s a little nerve-wracking.”
But, while one daughter paints her toenails on the dock, and two are paddleboarding and kayaking in the harbor, and little Mia catches rides on the golf cart with her new friend Celina, Bobby and Wendy said they wouldn’t have it any other way. “It’s great to be together as a family,” they said. “We had to do this now; we don’t know when we’d get another chance.”
To follow the family, Mia is on a Facebook group at “Mias Big Heart,” and the family’s loop adventures can be found at “Wilsons on the Water.” They plan on being finished with the loop by mid-June, when Mia has to be back home for more tests and surgeries. Since February is Heart Month, the family wants to raise awareness for future research.
“If we can do something now that will help someone 20 years from now in our same shoes, then we have to,” said Wendy. “If someone five years before Mia hadn’t tried something new, we may not have her here with us today.”
Mia’s Big Birthday Party
The Faro Blanco crew has come to love Mia and her family. They are throwing Mia a birthday party, and the family a bon voyage party on Sunday, Feb. 19 at 4 p.m. in the Captain’s Room at Lighthouse Grill, and then probably moving poolside, since Mia loves the pool. *Remember Mia has a very susceptible immune system, so please don’t bring unnecessary germs.