How I Survive … Raising a Blind Child

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Bridget Skvarla, of Anaheim, on learning to let her son face obstacles and live his own life


My son Andrew was born [prematurely] at six months. He weighed 2 pounds. It was hard to watch, but my husband, Jim, and I were strong together, and Andrew was doing well for how little he was.

 

We didn’t learn about the blindness until he came home. He had an outpatient eye exam and they found retinopathy of prematurity, where the retinas detach. So by the time he was 4 months old, we realized there wasn’t going to be any vision.

After the diagnosis, we met with the director of the Blind Children’s Learning Center in Santa Ana. We took Andrew, walked around campus, and watched all those kids at 4 and 5 walking with canes. There was hope. They sent someone to our house once a week. They would walk with him, and play, and show us how to play with him and what to do, until he was 6 months old. Then he started going a couple of days a week for several hours. Finding the center was the most important thing we did.

We had to let him be a normal kid. His exploring was challenging: He’d bump into this or hit that, but he needed to find his boundaries like any other kid. After a while, he would run through the house and run in the backyard. I would hold my breath because he would miss a wall by two inches … but he’d never hit it. He knew exactly where to go. But when he was in junior high we started having conversations about things that he couldn’t do: “Why can’t I be a ref at a soccer game? Why can’t I be the pitcher?” That was heartbreaking.

But we’ve tried to create possibilities for him. He’s played in the school band; he’s in wrestling. He’s out in the world. He’s piloted a plane, a helicopter, and a glider. He has an instructor with him, but they say he has a natural ability. He always knows his altitude. He can feel it. We learned early on at the center that these kids need to be out there with other kids, sighted kids. Looking back, that was hard for me. When he was little, I wouldn’t leave his side. I just wanted to make sure he was safe. And accepted. One day I walked him to school. I walked behind him, just to make sure he knew where his first class was. Then some girls yelled his name and ran away. I said, “Oh, Andrew, don’t worry. They’re just being silly.” I’m not there all the time, so I don’t know if things like that happen a lot, but he comes home every day from school happy.

It’s his senior year. He’s handsome, he’s athletic, but he’d like more friends. I’ve always coordinated his time with other kids. But it’s harder now—with everyone driving, and meeting at different places. I’ve learned over the last couple of years that he’s more social when I step back.

My girls say, “Mom, he can do this.” My husband says, “You’ve got to let go.” I know he needs to get out there, go to college, and learn on his own. Jim says we have to do it. I wasn’t on board at first … but I know it’s the right decision.

I had this dream recently and it kind of freaked me out. Andrew was flying and there was a crash. The plane hit the side of a cliff and tumbled down. All I saw was dirt and smoke. And then he came out of the smoke, happy and laughing and raising his hands. I just think it means that I have to let him go. Whatever is going to happen in the future, he’s going to be happy doing it.

 

The Odds

According to the National Eye Institute, about 400 to 600 U.S. infants become legally blind from retinopathy of prematurity each year.

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