Following my heart

From a very young age, I always knew what I wanted to do when I grew up. I was fascinated with television and spent my childhood dreaming about working at the TV station.

Saying “the TV station” above is not a mistake, because there was one station to which I was drawn, WESH-TV.

I watched the station religiously and was fascinated with the many facets of local TV news. It wasn’t just the glamour factor. I was intrigued by everything about it — the live trucks, cameras, sets, control room, editing, videotape, master control — every bit of it.

In junior high, I learned even more about it by becoming a media aide and was on the fast track to a place in the television production class in high school. I was even more excited to learn I could be a part of the school’s weekly newscast.

Instead of dreading that I had to go to school each day, I began to love it. I learned all about those facets of TV that amazed me. We operated cameras, edited stories, wrote scripts, created graphics, learned how to operate a switcher — I was in heaven.

I decided I was going to break into the business at WESH-TV and called just before I graduated and asked if I could be an intern. I was told they didn’t have a program like that, and I said I would be happy to be their first intern. It worked.

I spent 18 months as an intern and was hired as a production assistant in 1989. I eventually became a producer and moved to the growing field of online journalism when WESH launched NewsChannel2000.com in 2000.

But my world took a detour two years later when my wife and I had our first child. Our son, J.P., was born with a form of cerebral palsy, holoprosencephaly, and numerous other disorders, like hydrocephalus, diabetes insidious, epilepsy, spastic quadriplegia — the list goes on and on.

Some things happened in the days before J.P. was born that changed me and my outlook on life.

Minutes after learning that our precious boy would be born with significant disabilities, doctors were telling my wife and I that she was putting her life at risk by carrying J.P. and needed to be admitted to the hospital to terminate the pregnancy. They said we needed to make the decision immediately.

I have always been the type to listen to what a doctor says, but this was a decision that just couldn’t be made that fast. Somehow, Paige and I were able to get out of the hospital and learned that there was really no additional risk to Paige. They considered the additional risk to be due to the fact that our boy would have no quality of life, so there was no reason to put her through the risks of the pregnancy.

We changed our doctor and decided to deliver at Florida Hospital in Orlando, where the staff supported our decision and surrounded us with the hope and belief that God had a plan for J.P. That plan is still going on 14 years later.

In that time, I’ve learned a great deal about the importance of care that is patient- and family-centered. I’ve learned how that type of care improves patient safety. I joined Florida Hospital for Children’s Family Advisory Council and served as chairman of it for three years. I’ve also served as a member of the Nursing Governance Council and currently serve on the Patient Safety and Quality Committee.

When the Florida Legislature was considering deep cuts to Medicaid funding, I traveled to Tallahassee with a team of doctors and nurses to share the importance of protecting the program for our kids. I delivered a speech at the State Capitol and talked to legislators. The hospital also paid for me and two other family advisors to attend a conference in Tampa by the Institute for Patient- and Family-Centered Care.

My world has changed since I began my career in TV news 27 years ago. There were the jubilant moments when my son was born and he was in such good health that he didn’t even have to go to NICU, and there have been times when I wondered if J.P. would survive to see the next day. I’ve seen parents broken by the loss of a child, and doctors who needed to discuss a care plan for a baby whose parents never came to the hospital or even returned a phone call.

My experiences have led me to a decision to leave WESH-TV at the end of December. I tell people it’s the only place I’ve worked other than McDonald’s.

But the battles my family has conquered since J.P.’s birth have taught me plenty, and I need to use the skills I’ve learned in the journalism field — great communication — to help other families who are facing situations that seem insurmountable.

So even when J.P. isn’t a patient at Florida Hospital for Children, I plan to be there to help the many families in need make sure their care is family-centered and that they’re playing a role in the care plan.

For now, I’ll be doing that on a volunteer basis, but I’m confident that the position will grow into something permanent, and the hospital’s commitment to family-centered care makes taking the chance worthwhile.

I’m so excited about this opportunity to make a difference for families and children who need help to get through tough times like my family has faced.

I consider myself twice as lucky that I get to again create something that doesn’t currently exist just like I created that internship at an incredible TV station so many years ago.