Future Reflections         Summer 2009

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The Girl at Disney World

by Kim Cunningham

Kayleigh Joyner riding the Teacups at Disney World in 1995.From the Editor: Kim Cunningham is president of the Texas Parents of Blind Children. A few months ago she posted a note to the NFB Blindkid Listserv, describing an incident that had inspired her when her daughter Kayleigh was four years old. She expanded her post into an article for Future Reflections, and here it is.

I'm sure that every parent remembers the day their child was diagnosed as blind or low vision. For me, it was a life-changing moment. My mind was consumed with one thing -- fear! It was the fear of what I thought it meant to be blind. I had never known or even met a blind person. How in the world was a regular stay-at-home mom like me supposed to have the abilities to raise a blind child? What would this mean for my precious daughter and for the life of our family? Would my daughter be happy? I had fought so hard to save her! Now I knew I would have to fight equally hard to insure that she had a good life. And so our journey began ...

My daughter, Kayleigh, was born severely premature. I never knew if each day would be my last chance to see her. Every trip to the hospital was agonizing, knowing another major complication was right around the corner. After fifteen surgeries and a four-and-a-half-month stay in the NICU, we brought home a healthy four-and-a-half-pound baby. We were told that she had a severe vision loss; however she should be able to see "some."  Some . . . What the heck did that mean? She could see but she couldn't see? Boy, was I confused!

Kayleigh Joyner uses her long white cane on a summer outing.In the following weeks, we were shuttled between doctors, therapists, and teachers. Our new life began as we tried to learn how to parent a partially blind child. Our first teacher of the visually impaired kept using the B words -- blind and Braille. I couldn't even say those words. My fear was all-encompassing. I remember one day crying and asking my mother, "What happens if my little girl grows up and is angry because she is blind?" In that moment I realized that I would not give her the opportunity to think or say those words. I knew I must let go of my fear and learn all I could about blindness. I began reading books, attending parent support groups, and asking questions of all the professionals who were now in our lives.

During this time, I kept hearing words like "disabled," "handicapped," and "special." These words strongly connoted not being able to do this or that. The words made me sad. These labels just didn't seem to fit my little girl, who was making progress in every area of development. Don't get me wrong. She was months behind according to her birth age, but during each review of her development, she was climbing the ladder of success. We were on our way -- to where, I had no idea, but nevertheless we were heading in a positive direction.

When my daughter was four years old, we decided to take the family to Disney World in Orlando, Florida. I hoped the trip would take us away from all the therapies and doctor's appointments, and give us some time to be an ordinary family. Kayleigh had had a cane since she was two, and I knew that she would have a blast exploring the park with her newfound independence.

Disney World is a magical place for children, but this trip made it a magical place for me also. While we stood in line, waiting our turn to get on yet another ride, I saw a group of teenage girls laughing and giggling like most teens do. They were headed to one of those giant roller coaster rides, I'm sure fully anticipating that this one would be even better than the last. Then I noticed something very familiar. One of the girls was holding a cane! They were typical teenagers doing typical teenage things, and one of them was blind. No one was holding her hand. No adult was supervising her every move. No stigma kept her from having friends. There was nothing "special" about her except that she was using a cane.

That young lady will never know the impact she had on my life. She showed me what I wanted for my daughter. Now I had a sense of direction and a picture of what my goal would look like. I would raise my daughter to have the same opportunities her friends had. I would no longer listen to the naysayers who painted a picture of gloom. Now I knew that Kayleigh truly was able to have a typical life. I could have the same expectations I would have if she were sighted.

Kayleigh Joyner and her family on a summer outing.Over the next thirteen years we struggled to educate everyone in my daughter's life about blindness. Most people only thought of their own fears, as I once had myself. There had never been an academic blind child in our school district before, and no one expected Kayleigh to be an accomplished student. Every step of the way I refused to allow her blindness to excuse her from doing her best.

Kayleigh is now a junior in high school and a member of her high school choir. This year the school planned a trip to Disney World. Since I have chaperoned many school events, I assumed that I would have the opportunity to go along on the Disney World trip. Then, a few months before the trip, my daughter informed me that she preferred me not to chaperone this year. She wanted to go by herself. She felt confident in her abilities and wanted to hang with her friends without Mom around. WOW! This was the very picture that I had in my mind when I saw the vibrant blind teenager thirteen years ago. I did it -- I really did it!

Kayleigh returned from her four-day trip full of stories. She told me how she rode the fastest rides, watched shows, had her picture taken with the Disney characters, and shopped in all the stores. As she talked about her trip, my mind kept going back to the blind teenager I saw years before. I thanked that unknown girl who made such an impact on my life. I pray that our children are able to change the lives of other families that are on the same journey. Who knows . . . maybe another family saw my daughter at Disney World, and maybe, just maybe, she made an impact on their lives.

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