Reaching for the Stars

Reaching for the Stars

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.