In the opening of her Ted Talk this past May, Kristin Smedley shared a very honest story about one of many very hard days as the mother of a blind toddler. Michael was three years old, bouncy and delightful. She was paralyzed daily by the fear, anger, and grief that his CRB1 diagnosis caused her. One day, in particular, she couldn’t make it out of bed. Why was this happening? Why would this happen to her child? In that moment, she could hear her son make his way down the hall to her room.
“Mommy, are you in here?”
“Yeah, buddy, I’m right here in front of you on the bed.”
“Mom, I just had to come down here and tell you, isn’t this just the best day ever? The sun is shining, and I’m playing with all my stuff, and I’m just so happy.”
That moment of awakening, which occurred over 16 years ago, to a woman who had never known a blind individual before her son’s birth, set an unstoppable force in motion. For 17 years, with stops and starts, Kristin has learned to see through the eyes of her two blind sons, Michael and Mitchell. They see a world of opportunity and potential, and they taught their mom to as well. Over the last 17 years, Kristin has dedicated her life to initiating fundraising and awareness-raising campaigns for research, policy reform, and demanding that full inclusion is provided to blind and visually impaired kids in school, sports, employment, and in all aspects of life. Here, she shares her most memorable lessons and achievements and some of the harder times with us. They demonstrate the unruly road she’s taken to a point where she can look around her house and know, yes, we can always handle what we are given.
Inclusion in School, Inclusion in Sports, Inclusion in Life
When Kristin’s first son, Michael entered the elementary public school in their district in Bucks County, PA, it was clear that he was a bright kid who liked a challenge. He was outgoing with many friends and liked going to school, and aside from his visual impairment, Michael did not need special assistance during the school day. He needed a Teacher of Students with Visual Impairments (TVI) to facilitate his braille lessons and an O&M Specialist for mobility skills, but Kristin was adamant that Michael should not miss classwork with his peers to receive such training. “I’m a very kind person, but I didn’t really offer any options on that front—I didn’t want him pulled out for anything; he needed to feel included in all the classroom activities, not 80 percent or 75 percent of them.” Seeing her point, the elementary and middle school arranged for a TVI to arrive 60 minutes before elementary school started and 40 minutes before middle school started to provide the necessary lessons and assistance to Michael and Michael’s younger brother, Mitchell. When the first school bell rang, they were just as much a part of the classroom as the other sighted students.
This determination for full inclusion did not end there. When Michael was old enough to join sports teams, and he was playing on a baseball team for blind and visually impaired students, he told his parents that he wanted to be on the regular township team. They talked about the chance that he might not be ready to play in the sighted league, but as it turned out, he was. Mitchell followed a similar path. When he was ready to join the regular sighted league, he spoke up and joined. Both boys have won a championship in this league. “If my children were not ready athletically, we would have found a different option, but they both proved that they were ready.” After playing on sports teams, Mitchell and Michael even decided that they wanted full inclusion in the school theater. “Full inclusion in sports and all activities, really, is possible, as long as it’s done in the years that make sense to push for it.”
Role Models in Siblings, Athletes, Engineers, Politicians, Musicians
“My sons are very lucky because they have always known another person who is just like them, experiencing the world in the same exact way.” Mitchell has always had Michael, someone who has done it all—school, sports, social life, and any extracurricular activity he wanted to try"to guide his path. Once Mitchell was born, Michael gained a lifetime partner in crime, and, as Kristin notes, this compatibility has meant so much for both of their social development and confidence. This foundation was integral in the early years.
Looking toward the future though, Kristin believed her sons needed a much broader spectrum of blind role models—blind men and women who had tried and achieved whatever life path they set out to achieve. As a family, they attended conferences, presentations, fundraisers, and benefits. Her sons have met world famous mountain climber, Erik Weihenmayer, who climbed to the top of all seven summits. They’ve met the blind ultra marathon runner, Simon Wheatcroft; they’ve met a blind architect, blind fathers, and a blind Army Captain. “I wanted both boys to know that anything on any level is important, and I think they do now.”
Hard Days Will Always Exist, but They’ll Come Around Less
Kristin does not mind sharing that she’s had really bad days, and years, and sometimes, it’s just the way it is. After Michael was born, she collapsed under the weight of his diagnosis. “I spent three years on the couch,” she said, unable to move forward, stuck in this whirlwind of fear, anger, and sadness. When Michael was still young, Kristin attended the LCA Family Conference where one mother Kay Leahy, shared her journey as being the mother of her blind son. At the end, she opened up for questions, and Kristin raised her hand: excuse me, when did you stop crying every day?
In that moment, she received the best piece of advice that she’s ever received in all her years as a mother. This woman told her she’d get to a point where she got to the end of a day and realized she hadn’t cried at all. Then she’ll get to a point where two or three days would pass, and she hadn’t cried. “Middle school will be hard,” the mother said, “so know that before you get there, having kids in middle school will be tough, but you’ll be prepared. Then you’ll have a week, then two weeks, then a month, then six months straight. You’ll always have a bad day, but they’ll come around less and less.”
Fixing Something We Always Said Was Fine
On the advocacy side, Kristin is the founder and president of Curing Retinal Blindness Foundation; a TEDx speaker; an author of her new book, Thriving Blind; and organizer of Bike the Basin, a benefit to raise money for the research necessary to find a cure for CRB1. They have raised 1.5 million dollars to fund research that could potentially restore the vision that children and adults living with CRB1 lost at birth.
“This has been tough because when you think about it, it’s confusing. We’ve always told the boys there’s nothing wrong with them, they just experience the world differently. Now, we’re trying to do away with that thing that makes them different. Why are we fixing something we’ve always said was fine?” Kristin said about the dilemma.
When her son Michael was approached regarding his interest to participate in the study, his response put his mother’s mind and soul at ease. While participating may be a no-brainer for some blind and visually impaired children, adults, and their families, Michael saw his responsibility from a very different angle. “Michael said, ‘you know, I’m blind and going to college, and those are two really big things. I’m going to have to focus on them for the next four years.’” He told the family’s supporters that in four years when he graduates from college, he’ll consider this other really big decision.
“That was my proudest moment as a mother,” Kristin said, “because if these kids are comfortable with who they are and where they can go no matter what is in their way, I did something right.”
Resource for Parents of Teenagers with Visual Impairments
Emotional Impact of a Child’s Blindness