After you read this article, close your eyes for a moment ... long enough to erase any trace of an image. When you are seeing nothing but darkness, you are seeing the world as my granddaughter Taylor has seen it for her entire life of 14 years. But, unlike us, Taylor does not have even a single visual memory. Taylor was born without eyes ... a very rare condition known medically as anophthalmia.
Doctors performed tests, but are not certain of the cause of Taylor's anophthalmia. However, after loving every minute I'm with my granddaughter and being amazed by her accomplishments, her attitude, and her gifts, I believe Taylor has a God-given purpose and she is fulfilling it beyond our comprehension. Oh, people will say "If there is a God and He is so loving, why would He do this to a child like Taylor?" I want to tell you my answer.
When my daughter Kim and her husband Mike were told of Taylor's condition at birth, their lives became very different from ours. Yet, they somehow knew what had to be done. Taylor was fitted with her first set of "conformer" eyes at the age of two weeks. These implants had rigid one-inch stems that protruded straight out from her eye sockets to facilitate the frequent conformer removal and replacement procedures during her first year. Eye implants are necessary during child growth to maintain normal skull development. But the conformers-with-stems drew unwanted attention and astonished reactions from everyone who saw baby Taylor. Soon, the conformers were incrementally replaced with increasing sizes of life-like prosthetic eyes designed and built by one of most uncelebrated, humble, and talented artists I've come to know, ocularist John A. Kennedy, BCO.
Kim, being an elementary school teacher, knew the importance of eventually main-streaming Taylor through the public school system. To prepare for that, from the age of 11 months to the age of three Taylor was driven 20 miles daily to The Blind Children's Learning Center where she was introduced to Braille and the use of a cane.
As Taylor grew in Braille proficiency, she blossomed in many other areas. She began piano lessons where she additionally learned musician's Braille from Beth Syverson. She began Jiu-Jitsu where she earned a yellow belt and continues in competitions. She takes singing lessons from Tina Wilson and has performed at many public, school, and church events. She recently earned admission into the Huntington Beach Academy of Performing Arts. For each of the past three years, Taylor has submitted an original piano composition to the Huntington Beach School District and won first place each time at that level. This year her compositon went on to win first place in the state of California. This Saturday she will perform for the California PTA Convention in San Jose to determine if her composition will advance to the National level.
More important than achievement awards, Taylor is the life force of any social event. She is forever the optimist, the prankster, the lover of life, and the lover of God. She supports everyone, particularly her sister Lauren. She does not seek attention; attention just finds her. She has confidence, poise, and a lack of self-consciousness which combine to let her openly enjoy life.
For instance, last year Taylor and I were sitting together behind the backstop for her sister Lauren's travel league softball game. To help the coaches, Taylor keeps track of the number of pitches thrown. For this game, Lauren was the leadoff hitter for the visitors. The first pitch of the game was a fastball below Lauren's knees. The umpire called "Strike." Taylor immediately stood up and yelled back at the ump, "That was low!" Many heads turned toward "the blind girl." I knew that Taylor had learned some degree of echolocation, but I had no appreciation for the accuracy of the process. Maybe it should be a compulsory course taught at Umpire School.
Taylor has learned to compensate and live with many limitations. For example, Taylor has never seen or emotionally felt a color. Neither does she dream in color. She wishes that she knew what her family looked like and what she looks like. She does not know the age of strangers speaking to her. She cannot play music with both hands while reading musicians Braille. Simple gestures like "waving goodbye," or "blowing a kiss," or "running and hiding," are not intuitive.
But nothing is an obstacle for Taylor. She now prefers to walk alone four blocks home from school with only the aid of her cane. She's an honor student who is well connected to the internet and she has learned to ignore, conquer, or bypass anything blocking her purpose.
In school Taylor meets daily with Miss Jamie her Braille teacher and Miss Jill her instructional aide. Also, Mr. Andy gives Taylor cane instruction twice each week. Last year, at the age of 13, Taylor asked Miss Jamie, who is a member of the California Transcribers and Educators for the Blind and Visually Impaired (CTEBVI) if she could address the members of that group at their annual conference which was to be held in Los Angeles. Taylor wanted to give her personal evaluation of the technologies she uses routinely which include devices such as the Braille Note, Braille Display, Color ID, Pearl Camera, and her laptop computer with screen reader apps like Jaws and NVDA. Taylor's request was extraordinary ... a 13-year-old blind girl asking if she could make a presentation to approximately 80 professional educators! Miss Jamie enthusiastically supported Taylor realizing this was a first. Taylor's presentation was later summarized in the CTEBVI Journal with the excerpt shown below.
Reflections Upon the CTEBVI Conference 2016
Ralph Cioffi
Immediately following Rob Schulenberg's very insightful presentation, the other workshop I attended, surprisingly presented the real life manifestation of what Rob was talking about!!!! "What's In My Technology Toolbox" was the title of the workshop. Taylor Cox, a middle school student who appeared to be totally blind, was the main presenter. Of course, her VI teacher and tech advisor were also there and available, but minimally needed for this event. Here was a young middle school student who was totally blind, and able to demonstrate that she could hold the interest of a room full of people who came to see exactly what she could do with the assistive technology that was available to her within her school district. To the amazement of the audience, she confidently demonstrated that she was aware of what she needed to use to succeed on an academic level, and then went on to demonstrate how to use it. Ironically, she seemed more adept at using the assistive technology than most of the VI professionals in the room! I only surmised this because of the sounds of admiration that were coming from the audience as she went on to demonstrate the use of each digital device. When asked what she had planned for her future, she quickly responded with a statement of her intention to eventually work for a tech company such as Humanware! Imagine the dream-like anticipation available to a student of this age. As a parent, who could ask for more for their child? As a teacher, who could have been more satisfied with the outcomes? As a student, who could be more proud of herself? And, as an outside observer (that would be me!), who could not refer to all of this as the culmination of the responsiveness of her school district, the adeptness of her VI team and especially, the expansive input and futuristic outlook of her VI teacher!
In short, Taylor Cox had the audience riveted to her expertise as well as her presence throughout the presentation. What more can I say? I left the conference feeling that the professional field of working with blind and visually impaired students, is truly on the verge of new horizons for all involved with it!
Taylor's presentation was so well received in 2016 that she was invited back, with expenses paid, to this year's conference in San Francisco in February. Once again she received a standing ovation from the 65 attendees. Imagine, she is now a two-time presenter at the age of 14.
Taylor has been an example to all of us of a far better way to lead life. There is no self-sorrow and no obstacle to fulfilling her purpose. Challenges have only made her stronger, smarter, better. And through it all she has retained her humility and sense of humor. She was deprived of the gift of sight, but through hard work and commitment she is now giving back to others her vision of life.
