FamilyConnect

From the day he was born two months early, Stacy Baumann has considered her son a miracle. In fact, she considered him a miracle from the moment she found out she was pregnant because she had been told she could never have a baby.

Ever since, this sense of gratitude has been a guiding light for Stacy, whose son, Gabriel Maduro, is blind.

“The kid just can’t get a break with his eyes,” Stacy said. “His original diagnosis was cataracts, then retinopathy of prematurity, and by the time he was two, he had glaucoma. But when you get your miracle, you take it any way it comes.”

In some ways, Stacy thinks Gabriel, who is now 10 years old and has been totally blind since early childhood, has it easier than people who lose their vision at a later stage in life and have to learn how to navigate the world all over again.

“He’ll never know what he’s missing, and I’m not going to tell him,” Stacy said.

Gabriel is her only child, so Stacy doesn’t have a point of reference for all the ways raising a child who is blind might differ from raising one who is not. “I can’t say it’s inconvenient or anything—it’s just different from most mothers’ experiences.”

Searching for Every Resource Possible

From the beginning, Stacy has searched for every resource possible for her son, although she admits it’s much easier now than it was when Gabriel was a baby.

“Thank goodness for the Internet,” she said. “When our journey started, it was bleak and depressing. Now you can type in ‘my kid is blind,’ and you find all of these incredible websites that are full of colors and smiling kids—it’s just wonderful.”

Stacy uses WonderBaby.org, the American Foundation for the Blind (AFB) Facebook page and website, and is a member of FamilyConnect.

Despite turning to the Internet when needed, a lot of what Stacy does for Gabriel has come from gut instinct, like narrating everything around them. She says no one told her that was something she should do.

“I knew he needed to know what was going on, and with my background in writing and my vocabulary, I can describe things. I’ve always believed he was meant to be my child, and I think my ability to describe things to him was meant to be too.”

Accepting a Child’s Blindness

Stacy’s faith in destiny has given her strength, although she admits it has not always been easy to accept Gabriel’s blindness. That’s one reason she started a blog called “Beyond the Darkness,” as a way to work through her emotions. The blog also serves as an inspiration for other families and features a story in progress that Stacy is writing about a mouse family with a child who is blind because she says there aren’t enough examples of characters who are visually impaired in books.

But in the beginning, Stacy’s blog was mostly a place to express her feelings.

“Sometimes there is a sadness inside of me for him, and I will carry that for the rest of my life, but I carry it very privately because I don’t want him to carry it.”

Stacy is also very protective of Gabriel when others try to express pity about the fact that he is blind. She knows people mean well, but she doesn’t let them place the burden of sorrow on Gabriel. She feels the same way about false hope.

“People will tell him that one day they’re going to come out with something and he’s going to be able to see, and I shut that down,” Stacy said. “It would be amazing if that happened, but I’m not going to give him false hope. I think false hope is the most devastating of all the emotions, and I don’t want him to grow up feeling like he’s just waiting for the day until he can see. That day might never come.”

Overcoming Perceptions of Blindness

Stacy is deeply proud of her son, who is mainstreamed at school with the help of an aide. He uses a Perkins Brailler and, other than the challenges every kid can face in school—from having to make new friends after a class change to dealing with bullies—she says Gabriel is a smart, charming, funny, and polite kid. In fact, Stacy says the biggest problem he faces is other people’s perceptions of him.

“I don’t know if they’re terrified of blind people or if they just have never known a blind person so they don’t know how to act,” Stacy said. “I don’t think people mean to be disrespectful. I think they just don’t know.”

For example, at restaurants waiters will typically ask Stacy what Gabriel wants to eat, even interrupting him after he begins placing his order. “He’s an independent, well-spoken kid and knows exactly what he wants,” she said.

“Remember that behind every person who can’t see is a person who’s just the same as you, except that they can’t see,” Stacy explained. “Don’t treat them any differently.”

Advice for Other Parents of Visually Impaired Children

Stacy also shared some encouraging thoughts for parents of children who have recently been diagnosed with an eye condition or who are losing their sight.

“I don’t think there are many things in life more devastating than finding out there’s something wrong with your child,” she said. “At that moment in time, it feels like the world is crashing down, but I want people to know it’s going to be OK—so much better than you think. You just have to have faith and love your kid fiercely, but don’t coddle them.”

Stacy has high hopes for her son, given his intelligence and cheerful attitude, and she knows that advocating for Gabriel in ways like seeking out more braille books or hosting fundraisers to buy the technology he needs will make a big difference in his life because it will shed light on the world around him.

But perhaps even more important, Stacy is grateful every day for the difference Gabriel makes in her life.

“The fact that I get to be the mom of this incredible little child is my greatest pleasure and honor,” she said. “He’s the coolest kid ever, and I’m so lucky to be his mom.”