The Braille Monitor                                                                                               __May 1997

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Reaching for the Stars

by Julie Hunter

From the Editor: The following story appears in Beginnings and Blueprints, our latest Kernel Book. Beginning with Dr. Jernigan's introduction, here it is:

Bob and Julie Hunter rejoiced at the birth of their new baby daughter--perfect in every way. Aglow with anticipation, they brought her home from the hospital. Then, as their baby's vision faded, so did their hopes and dreams for her future. Here Julie relates the heartwarming story of how she and her husband Bob not only rekindled those dreams, but learned to reach for the stars as well.

Fifteen years ago on a warm June morning my husband Bob and I drove to the hospital for our appointment with destiny. Because of delivery problems with our first child, we had the luxury of choosing the day and time of our second child's surgical delivery. Later that morning we were overjoyed to welcome a baby girl into our family--finally, a girl where for generations (on my husband's side) there had only been boys!

She was a perfect baby--healthy, dark hair, big blue eyes, and a pretty little face. We couldn't have been happier! Little did we know that this tiny, innocent babe in arms would turn our world on its ear.

Our new daughter Lauren thrived in her first few months at home. She was begrudgingly accepted by her two-year-old brother Mark, and gradually our family life fell into a happy new routine. But as she grew, some little concerns tickled the backs of our minds. She squinted when she was out in the sunlight--typical of newborns, we were told.

She didn't smile when someone came to her crib, but she would smile when held or spoken to. Finally, a jerky eye movement that we assumed would pass with her infancy became more and more obvious.

Then came that fateful day when the doctors' tests concluded that our daughter's retinas were not functioning properly. She would have visual impairment, but no one knew to what extent. She might even be able to drive, we were told.

Of course we were optimistic and clung to the best-case scenario--that the condition wouldn't worsen, that she would be mildly visually impaired, but not (God forbid) blind. As the months passed, it became obvious that this was not a stable condition. Her visual acuity was gradually fading. We mourned for every lost dream. We felt guilty that we had unknowingly passed on what we were told was a recessive genetic defect. We felt depressed about the future.

But it's no fun living in depression, so something had to give! That something was our first change in attitude about blindness. This was our child! She was bright and charming, and we vowed that vision or lack of it would not define her life. We didn't want to hear any more sympathetic words from well-meaning neighbors and friends. Give up your dreams? Not on your life!

So we were inaugurated into a whole new world--a world which has caused us to re-examine our values and broaden our horizon--a world which has brought us support, friendship, and a cause we believe in. Who would have thought that such a tiny baby born on a warm June morning would be responsible for all of that?

At what point do we move from seeing the glass as half-empty to seeing it as half-full? For us it came gradually as we learned, through the National Federation of the Blind, that the possibility was there that our dreams for Lauren could be fulfilled. That foundation was in place for us when we sustained our second blow--discovering that Lauren also has a progressive hearing loss.

As with the vision loss, which is now total, the hearing loss has been gradual. Lauren is now fifteen years old. She got her first set of hearing aids when she was eight. Her hearing loss has progressed from mild to moderate, and now hovers on the line between moderate and severe. Again, doctors are no help to us. They don't know why and can't predict what the future holds in store. We just live our lives and take what comes.

But one thing we have learned over the years is that fear about the future results from ignorance and failing to take control. If you do all you can to learn about your nemesis, never lose sight of your goal (which in our case is to achieve maximum independence), and stay in charge of your destiny, then the future is not so frightening. The more we learn, the less scary the future seems.

As we meet and talk to other parents with deaf/blind children and with deaf/blind adults, we are reassured that a quality life is possible for an individual who is blind and deaf. Our job is to make sure that Lauren has the adaptive skills necessary to remain an interactive member of society. There is work to do, but I feel confident that my daughter will achieve her potential, and no matter what the future brings, we will never stop reaching for the stars.