A young woman graduates from college and lands her dream job as a teacher. She settles down in Bucks County, gets married, and becomes pregnant. Life was grand for Kristin Smedley until a devastating life event changed her world and would eventually change the lives of others.
As parents, we have big dreams for our little ones even before they arrive. We wonder if they will be athletic, musical, or theatrical, but mostly we hope they live happy, healthy, full lives. Kristin was no different, so when the doctor announced “It’s a Boy,” the new mom envisioned cheering her son Michael on at baseball games, taking him for his driver’s license, sending him off to prom, his wedding, and more. That vision quickly changed when she learned that Michael, then 4 months old, had a rare mutation in a gene by the name of Leber Congenital Amaurosis (CRB1-LCA), causing him to be blind.
Known for her smile, Kristin became consumed with darkness; grieving the life she once pictured for her son and replacing those images with loneliness and isolation. One morning while questioning “why me” and if her son would ever enjoy a normal life, “it” happened. Michael, then 3 years old, came skipping down the hallway to Kristin’s room proclaiming, “Today is the best day ever!” It was in that moment that Kristin awoke to the fact that her son was one of the happiest little guys she had ever seen. This new perspective made Kristin realize that the dreams she had for Michael were just that, “her dreams”. She acknowledged, “It was me who was blind to the possibility of my son having an amazing life”. When she no longer saw blindness as a barrier, her fears and anger disappeared. With the return of Kristin’s smile came love, light, and the determination to empower and equip her son with the tools he would need to successfully navigate the world.
A few years later, Kristin gave birth to her second son, Mitchell, who also inherited the CRB1-LCA gene. But this time she was armed and ready. Like other suburban moms, she overenrolled the boys in all the mommy-and me classes, but what she didn’t know at that time was that, as a result of her relentless efforts, she would later be cheering on her sons at football and soccer games, as well as wrestling tournaments. In middle school, both boys were voted “All Stars” on championship baseball teams. The boys were thriving and while they could not see with their eyes, Kristin notes, “they could experience the world with their entire selves. They could hear, taste, touch, and feel their way through everything life had to offer.” At a TEDx talk Kristin explained how during a trip to Hawaii, Michael mastered the rhythm of the ocean and knew just the right time to catch and ride the perfect wave. There was so much more to her beautiful sons and Kristin was determined to never let their lack of sight define them.
As the years passed, Kristin’s family was blessed with a (sighted) daughter, Karissa, as well as advancements in technology. About the same size as an iPad, the Apex Braillenote became a game changer for Michael and Mitchell. At that point, the boys were reading and writing in Braille and by simply hooking the Braillenote device up to a computer, their work was able to be translated, printed, and e-mailed to teachers and classmates.
While her sons were thriving, Kristin was concerned with the fact that 70% of blind people were both unemployed and without a high school diploma. Kristin made it her mission to become the voice of change for those living without sight. In 2011, she co-founded the CURING RETINAL BLINDNESS FOUNDATION and raised over a million dollars to improve research and resources for the visually impaired. In 2016, her blog went global. In 2017 at a TEDx talk, Kristin spoke about raising expectations for those without sight and was one of 12 people invited to testify before the FDA to advocate for the approval of the first gene therapy to reverse blindness. If that isn’t enough, Kristin is a celebrated two-time bestselling author for her book, THRIVING BLIND: REAL STORIES OF PEOPLE SUCCEEDING WITHOUT SIGHT and BRILLIANTLY RESILIENT, an incredibly inspiring piece where she and her co-writer, Mary Fran Bontempo, share their personal experiences to help those facing adversity navigate their own journey. Reflecting on the significance of her personal journey, Kristin says, “When I had to walk away from teaching in the classroom, I had no idea that I was walking onto the world’s stage to teach people to see blindness and challenges differently. I’m so, so blessed.”
Once Kristin refocused her energy, she became unstoppable. To say that she and her boys have achieved and continue to achieve greatness is an understatement. Michael has a passion for music and is currently a senior at Penn State University with a double major in Sound Design and Music Technology. Mitchell is a freshman at Kutztown University in pursuit of a degree in Broadcast Journalism. Karissa is a happy teen who enjoys sports and learned the meaning of acceptance and inclusion at a very young age. Kristin continues to make strides for the blind community and works diligently to eliminate the stigma affecting those without sight. Most of all, Kristin and her children are enjoying full lives filled with love, pride, and gratitude. “I am so grateful that I get to be the resource that I never had, for so many people, all over the world.”
IG and Twitter: @kristinsmedley
Facebook: Facebook.com/ThrivingBlind and Facebook.com/BrilliantlyResilient
Contributing writer Beth Crawford is the founder and former director of BC Discoveries Dance and Theater Arts Co. After many years of working in dance and theater production, including writing scripts for large scale musical theater productions, she has shifted gears to serving the local community as a social media manager and freelance writer.