by Loretta White
Coming to terms with the fact that your child is blind and is going to stay that way is perhaps one of the most difficult challenges a parent can face. There are at first the terrifying questions: Does she live in a world of darkness? Can she go to school? Can she be happy? What will happen to her when I die? These are the questions Loretta White, now a leader in the National Federation of the Blind's parents organization, had to deal with when she learned her daughter Niki was blind. Here is what she says:
My name is Loretta White, and I live in Maryland with my husband and four children. Their ages are sixteen, six, almost five, and almost three. I am also a licensed day care provider, so most of my time is spent with and around children.
My daughter Niki will be five in November. Niki has been totally blind since birth. It's most likely due to retinopathy of prematurity, but since she was adopted from India, we don't know for sure. Niki came home from India when she was five months old.
We took her to a pediatrician for a check-up a couple of days after we got her. He told us that her eyes didn't look quite right, so he wanted us to have her checked by an eye doctor. The doctor he sent us to didn't do children, so all he did was take a quick look and tell us that, yes, she has cataracts; he then referred us to a pediatric ophthalmologist.
I took Niki to the appointment by myself while my husband watched the other children. I was expecting to have her seen and then scheduled for cataract surgery. I spent the entire day there.
The doctor had a wonderful reputation, but I quickly found out in the waiting room that he had the bedside manner of Attila the Hun. I was pretty nervous to begin with. Once the technicians had examined her eyes, done their tests with the drops, and completed the sonograms and what not, the doctor came in and quickly looked at her eyes.
Then, with the same demeanor one might use to comment on the weather, he told me that my daughter's blindness was total and permanent. I'm sure he must have read the look on my face and realized that I had not known.
Then he added, "Well, it's not that bad. It's like a Hershey bar. If you've never eaten chocolate before, you wouldn't miss it because you can't miss what you never had." Then, after a couple of minutes of very uncomfortable silence, he gave me the name of a doctor who might try some heroic surgery, wished me luck, and left the room. I never saw that doctor again.
Somehow I collected myself and my baby and made the hour-and-a half drive back to my home. It took me a long time to forgive his brutal honesty, but I will never forget it. On that afternoon I would really have appreciated some compassion. Also I did not appreciate the belittling of my child's condition. Things could always be worse, but so what? Right now they feel awful.
We went through anger at the doctors and also at the adoption agency who had placed her. From what we were later told, anyone who examined her should have seen the detached retina and scar tissue mass. And yet we had paperwork that said she had an eye examination and that her eyes were in good condition. Knowing probably wouldn't have changed our minds about her, but we certainly could have been prepared and avoided the shock.
We also tried the heroic surgery. We took her to a doctor in Tennessee who had had some success at reattaching retinas. We put ourselves in debt mustering up the finances to make three trips to Tennessee (two for surgeries and one for a check-up).
We did all this knowing initially that her chances of regaining any usable sight were less than ten percent. But at that time we were so frightened of blindness we were willing to try almost anything.
Before Niki came into my life, I had virtually no experience with blindness. The only blind person I had ever known was Tammy, who lived across the street from my family for a short while when I was six.
I can still see this eight-year-old girl in my mind. All she ever did was sit and rock, sometimes poking at her eyes. Her speech consisted mostly of repetitions of what she had just heard. She never played with the other kids or even went to school. She just sat and rocked. As you can imagine, that memory haunted me for a while after we found out Niki was blind.
If the only experience you've had with blindness is seeing a man begging on a city street, you're hardly going to feel excited about your child's future. And if the parent doesn't have a positive image of blindness, how can the child hope to develop a positive self-image?
As we began to deal with blindness, we were full of questions. We wondered what children with little or no sight are really like. Do they live in a world of darkness? Do they grow and develop like other children? Where do they go to school? Do blind people ever get married? How do they earn a living? Can they be happy? Can they live inde-pendently? What will happen to my child when I die?
When we finally decided Niki was going to stay blind, we began to look for help. I made a form letter requesting information and sent it everywhere. Then one day I got a phone call from the National Federation of the Blind. This was a turning point for me and for my daughter Niki.
Through the Federation I have met successful blind individuals from all walks of life and from all over the country. By observing and interacting with these people, I have been able to revise my perceptions of blindness. Reading about it in a book will teach you in your head, but by living it, you learn it in your heart.
Children learn what they live. I want my child to know in her heart that she can be successful and independent because she has grown up watching successful and independent blind adults around her.