Advocacy

By Trey and Nicole Flynn

What is it like to lose a child? Silly question answered in two words. “The struggles.” It’s an understatement of epic proportions.

We’ve been together since 1999, before cell phones became capable of sending text messages to replace the everyday conversation. We were high school sweethearts, waiting through college, post graduate school, marriage, and a career to have our first child. That’s the most mature plan, right?

The date? January 5, 2014. The time? Please. All we can recall is a world that hurriedly raced around us as we struggled to place one foot in front of the other. For 26 months we had circled our entire lives around Holden. It was worth every moment. Now, we were suddenly feeling a gut wrenching low that we knew would never go away.

“A few hours earlier he was here. We could touch him, hug him, tell him we loved him, and have him say something funny back not knowing how much it meant to…and now he’s not.”

Congenital Heart Disease took the future from us. It took our hopes, dreams and the life we imagined. Within minutes, it crushed everything we had planned so carefully for. We couldn’t breathe without the ever-burning thoughts of what he would be like or how our life should be.

Throughout Holden’s life, we have always taken the positive approach, often using humor to offset those most stressful moments in the hospital. It was our way of realistically dealing with what we knew was a very serious and brittle situation.

The positive thoughts and gentle laughs were now gone, and over time we were grasping at emotional straws to just stay afloat mentally. It came when those obvious ‘older couple questions’ began, and we were thrust into a world where we found ourselves having to constantly have to explain the disease that took the greatest thing that has ever happened to us.

That simple question, “Do you have children?” needed a better explanation. It needed one that allowed us to deal with the untimely sense of emotion but also helped people understand why we were parents to a child who was no longer with us. It was unfair to Holden, and it was unfair to our ability to cope with the situation.

Oddly enough, that’s when we noticed that talking about his disease made us feel better. We knew that at some point dropping the sword would have probably been a lot easier, as there were probably half-a-million other ways to deal with a loss of a child. But the ‘easier’ didn’t matter. It was about being able to work through the severe bout of emotions that often clouded our days.

We noticed we were able to move the needle ever so slightly. It might seem strange, but talking about Holden continued to be one of our favorite things to do. It was therapeutic in so many ways. The reality was, Holden was so much more than a kid with a CHD, but at the same time, that “so much more” was the biggest reason we needed to educate others on the relatively obscure disease that took him from us. Advocacy. We weren’t sure we could commit to it. The emotion. The stress. The potential for failure. Would we disappoint the son that we had watched fight so hard for so long? But here we are.

We’ve been to Washington, DC twice to talk to legislators about Congenital Heart Disease. We’ve started a foundation. We’ve moved needles. Advocacy. We’ve come alive.

Trey and Nicole Flynn met in 1999, when both were still rocking a pager. They reside in Orlando, Florida where they run Yellow Brick Road: The Holden Flynn Foundation with family and friends. Find them on Facebook.