My Boy

One of the hardest things to deal with is when my teammates bring their kids into the locker room to play around. You know everybody’s having a good time. All the kids are roughhousing and causing trouble, and then I’m getting questions like, “Ziggy, where’s your son at? How come you never bring him around?” I never really knew how to respond to that. What am I supposed to say, “My child has special needs and he can’t do the things that normal kids do because of I’m afraid of him getting hurt.” I play defensive tackle in the NFL — this isn’t a profession where you talk about weakness that often. But every time I saw those little boys playing and making memories, I cried a little bit on the inside.

Five years ago, my wife, Sara, and I went to the doctor excited to find out the sex of our first-born child. When we got there, we were informed that Josiah, our son, was probably going to be born with a severe case of Down syndrome. Hearing that news as a first-time father just shattered me. I went through my entire life having all these visions for my son. So many of the firsts that I had looked forward to experiencing with him suddenly went out the window.

I began questioning everything. Was it something I did? Am I getting punished for all the wrongs and sins I’d committed in my life? I carried so much pain and confusion, and I didn’t feel comfortable expressing it to anybody except my wife. Unless you experience something like this, it’s difficult to find the words for what you’re feeling. When Josiah was born, we found out that he didn’t have Down syndrome but there were definitely some complications. We just didn’t have all the answers. He just wasn’t functioning as a normal baby should, and it became clear that he would require close care for the rest of his life.

I’m supposed to be this big, strong NFL player. When you’re an athlete — someone who makes their living from their physical abilities — the thought of having an unhealthy child never crosses your mind. There have been countless times when I’ve driven to work crying, trying to figure out what happened and how I could fix it. Years later, Sara and I have seen numerous specialists, but we’ve never been given a concrete diagnosis for Josiah. It makes it that much more difficult to know how to help.

He struggles with his growth and motor skills as far as hand-eye coordination and balance. He’s very hyper and has a lot of difficulties focusing so we’re always on the lookout for the toys that make a lot of noise and have bright lights to keep him interested. Sara and I spend nearly all of our time with him trying to develop his skills as best as possible.

Over the years, we found great people to surround Josiah with to help his progress. Today, I still believe that the Pittsburgh area was the best place for him because the medical professionals who helped him were on top of everything. It was so much more than a job to them. I knew they actually cared about my boy. Even though I’m no longer a Steeler, I’ll always have gratitude for what that city did for me and my family.

One year after we had Josiah, my second son, Jeremiah, was born. Jeremiah is completely healthy and he loves to play with his older brother, even though we have to step in whenever he gets too rough. Right now, he doesn’t realize the challenges Josiah faces, but I think a lot about how their relationship will evolve once they get older. I’m so protective of Josiah — if I ever hear a bad word directed towards him, I’m ready to throw down. But I know that I’m not always going to be there to defend him. There’s going to come a time when Jeremiah’s going to have to step in and defend his brother in front of bullies. When you love somebody who is completely dependent on others, you’re constantly thinking about situations like that.

While Josiah does not function like a normal four-year-old, he’s my boy and I’ve developed a very special bond with him. When I’m with him, we do the usual stuff, such as watching Bubble Guppies or Dora the Explorer, but we also do exercises and activities to improve his mobility and motor skills. I’ll never forget being in the living room with him when he was two-and-a-half, and we had just completed some exercises helping him walk from Point A to Point B. We were all sitting down when, all of the sudden, Josiah’s eye must have caught something and he got up and took off on his own across the room. It was unbelievable. Everybody was in shock. It might sound like a small thing, but when you’re a parent of special-needs child, you recognize how precious those victories are.

When I’m at my most stressed, I step back and say, You know what, things could be worse. You hear these horror stories about parents who have children who are terminally ill, and it provides perspective. I’m incredibly fortunate to have two beautiful boys. And I also have the opportunity to play in the NFL, which I hope will give me the opportunity to make sure Josiah gets every resource he needs for the rest of his life. There are so many parents who have a child with special needs and don’t have the funds to adequately support them. I can’t even imagine what they go through. Since moving to Jacksonville, my wife and I have gotten heavily involved with HEAL, an organization that assists the families of those living with special needs. Connecting with other families going through this and being open about the struggles associated with it has helped me a lot.

Now, whenever I hear someone use the word “retard” in passing, I have to remind myself that the person simply hasn’t had the experience of having a loved one plagued with a disability. It can happen to anyone.

There are still times when I’ll wake up in the middle of the night and the only thing on my mind is, What happened? Did we not treat Josiah with the right vitamins? What could I have done differently? I still run these questions through my mind, and I’m not sure if they’ll ever go away, but I’m getting better each day.

It’s taken me several years to feel comfortable talking about my son. But I’m opening up now because I want every parent going through this to know they’re not alone. Whatever pain and embarrassment I felt before has been replaced by a desire to help raise more awareness about this issue.

After all Josiah has done for me, it’s the least I can do.