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SEEING THE SILVER LINING
One mother’s mission to raise awareness around the leading form of childhood blindness.
An alarming study conducted by the University of Bristol Medical School shows that one in every 30 children might be unknowingly suffering from a form of visual impairment that often goes undiagnosed or misdiagnosed. Cerebral visual impairment (CVI), sometimes referred to as “brain blindness,” occurs when a child’s eyes function properly but their brain fails to interpret the images being seen. Previously thought to be extremely rare, CVI has become the most common form of visual impairment impacting children—and yet it remains largely unknown. It’s one of the few forms of visual impairment that can be improved if it’s detected early enough, but due to a general lack of awareness around it, CVI often remains a hidden disability. Nantucket summer resident Lauren Fornes is on a mission to change all that.
Lauren’s third child, a boy nicknamed Brick, was perfectly healthy when he was born. However, at four months old, Brick became gravely ill. On Christmas Eve, he suffered a series of strokes that impacted the cortical part of his brain, which serves as his visual processing center. The days that followed were long and heartbreaking for Lauren and her husband, Don, and their two older children. Brick endured hundreds of seizures a day. He was diagnosed with epilepsy and cerebral palsy. As they were coming to terms with the new reality facing their child, Lauren and Don were informed that Brick also had been diagnosed with CVI.
Just as with optical visual impairment, CVI affects people on a spectrum, from some only slightly impaired to others suffering complete blindness. “In my son’s case, he doesn't recognize my face,” says Lauren, now almost eight years since Brick’s diagnosis. “He can smell me and hear me, but he has never seen me.” Brick’s visual impairment was compounded by other disabilities related to his illness. He was relegated to a wheelchair, struggled to learn to speak and experiences tactile defensiveness. “There are good days, and there are great days, and there are hard days,” says Lauren. “It’s very physically taxing—there’s a wheelchair in and out of the car all the time, there’s lifting his body, there’s diapering an almost nine-year-old boy—it’s a lot. But more than the physical part, it can be extremely emotional.”
Along with caring for their son, Lauren and Don needed to learn how to educate him. Early on, a friend recommended they consult with the Perkins School for the Blind where his son was a student.
The couple was living on the West Coast at the time, so attending the school in Watertown, Massachusetts, was not an option. However, when Brick was preparing to enter kindergarten and the couple wanted him to attend the same public school in Marin County as their other children, they arranged for a teacher for the visually impaired at Perkins to come advise the faculty on how to teach their son. Despite their efforts, at the end of the week, the principal told Don and Lauren that he thought his school would be unable to adequately support Brick.
"That was really scary,” Lauren says. “Because one of the things that we most agree on as Americans, no matter what your political affiliation is, we all agree on universal education. It’s one of the constitutional rights that doesn’t get challenged.” And yet now they felt denied that right because of their son’s disability. As a result, the Forneses decided to move their lives to Massachusetts so that Brick could attend Perkins. Their son not only began to thrive at Perkins, but Lauren identified her mission to raise awareness around the prevalence of CVI and how to educate children with this form of visual impairment.
“You can teach the blind,” she says. “It’s not impossible or even expensive—it’s just not intuitive. It requires awareness and education. Hopefully I can help continue a conversation that might spotlight this so that schools around the country can have the tools they need to educate these children, so they don’t have to pick up and move three thousand miles across the country.”
Meredith Hanson brings Lauren’s words to life through beautiful illustrations
Lauren turned to storytelling as her vehicle for delivering this message. Shortly after Brick’s illness, she began writing a story, more of a poem really, that she would tell her children or occasionally read at their schools about children with CVI. Over the years, the story evolved and became more refined, centering on Nantucket, where the family bought a home after moving to the East Coast. During the pandemic, Lauren decided to turn her homespun story into a book that she would sell and donate all the profits from to Perkins. She partnered with local artist Meredith Hanson for her story, and Magic Eyes was released this July.
“If I can help one mom like me not feel alone and realize that this really hard thing in her life is one day going to create a silver lining that she never imagined, that there is something positive that comes out of heartbreak, then I have achieved the goal of the book,” Lauren says.
In the two months since the book has been released, there have already been several instances—what Lauren calls “Brick Moments”—to this end. A fourth grade teacher created an entire curriculum around the book. A group of mothers with children with special needs found a community around the book.
“Diversity and inclusion are important topics right now, but I think disability inclusion is the last frontier,” Lauren says. “Although there are more people as part of the conversation right now, I think it’s really hard to include the people who can’t speak, that can’t hear, that can’t walk. They need us to speak for them.”
Lauren Fornes and Meredith Hanson’s Magic Eyes is available at Mitchell’s, Pinwheels and several other island shops. Learn more about Lauren’s mission at magiceyesbook.com.
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