Ray and Wendy Meddaugh tried for years to have their first child, Rachel, and when she was 16 months old they discovered she had cystic fibrosis. In the beginning, they only knew there was no cure and it was terminal.
"We were devastated," Wendy said.
A few years later, they had another child. The chances were 75 percent in their favor that the baby would not have cystic fibrosis. Unfortunately, Jacob — who likes to be called Jake — was also diagnosed. There are about 30,000 children and adults in the country who have CF. The Meddaughs have two. It is an inherited disease that makes a person's mucus thick and sticky, clogging lungs, obstructing the pancreas and creating havoc with digestion.
The Meddaughs — Wendy, 39, is a part-time surgical technician and Ray, 44, is a corporal with the Pasco County Sheriff's Office — don't know of any relatives with CF. Ray's father had a brother who died in childhood, though the cause is unknown. They think now maybe he had the disease.
Years ago, children with CF were lucky to live long enough to attend elementary school, according to the Cystic Fibrosis Foundation. But now many people live into their 30s or 40s.
Rachel is 11. Jake is 7.
They are doing really well.
"This is a story of hope," Wendy said. These two children have had multiple hospitalizations and several surgeries. They are at All Children's Hospital so much that the Meddaughs send the nurses Christmas cards.
Every day, there are rounds of medication — things to inhale, things to swallow. Sometimes they have to be on steroids, which make their bones brittle and easily broken.
Rachel has had five broken bones. She and Jake burn so many calories just trying to breathe that getting enough calories is a huge issue. Their sinuses get packed and have to be drained. Rachel has a feeding tube for injections of extra calories when she can't eat much. The kids spend 20 minutes twice a day strapped into vests that inflate and shake them to loosen the mucus in their lungs. They constantly use hand sanitizer to ward off infections.
"It's just our life," Wendy said. "It's not who they are — it's what they have."
Ray said well-meaning, good-hearted people give him sympathy. But he doesn't look for it.
"This is our world," he said. "This is our life. This is all we know."
Rachel, a blond fifth-grader who is quiet with a beautiful smile, loves to play the guitar. Jake, the first-grade spitfire, plays the piano and does karate.
"Our goal is to keep them as healthy and normal as our life can be," Wendy said on a recent afternoon in their Holiday home.
"I mean, Jake climbs on things," she said and her husband nodded for her to look behind her. Jake was climbing on the arm of the sofa, wiggling to a nearby chair, a grin on his face. Then he ran off and brought back a small toy lung to show how CF affects his respiration.
"It's not contagious," said Jake, who also made it clear he does not like IVs.
"I hope soon there is a cure for CF," he said.
When asked if she's sad or upset about her diagnosis, Rachel shook her head.
"Not really," she said. "It's pretty much just life."
Ray served in the Army prior to joining law enforcement. He has a logical outlook on life. After getting the news of Rachel's diagnosis — a phone call from a doctor at 3 p.m. June 21, 2001 — he sat on the edge of his bed and his mind shut down. Then, after a bit, he wanted to know what they could do to save their little girl. The doctor gave Ray and his wife a big, thick book about CF. They read it and understood the disease more, which made it less scary. They trusted their doctors and followed what they told them to do. Their daily routines take much dedication.
"This is the way we do it," Ray said. "Is it not fun? Yeah. But this is the world we live in."
Ray and Wendy feel blessed. Money is tight but the family laughs and hugs a lot. They have three dogs that cuddle with Rachel and Jake.
"My kids are wonderful," Ray said.
Erin Sullivan can be reached at firstname.lastname@example.org or (727) 869-6229.