REACHING FOR THE STARS

by Julie Hunter

 

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 being able to choose 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!

And 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

there can be a quality life 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.