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Transmissions
A frequently updated glimpse into our world, forever
changed by Batten Disease.
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Monday, April 30, 2007
The Sound of the Ocean
We took T to the beach this past week.
Ever since I was a little
girl, the ocean has been a part of me. The sound of the waves, the sight of a sunset on the water's surface, and the feeling
of the soft salty breeze on my cheeks and in my hair is literally in my soul.
Taylor can no longer watch the sun
set over the ocean. She may never see another sunset in her life, no matter how long or short it may be. She can still feel
its power, though.  This past week, she could feel the wet sand give under her toes. She could hear the seagulls as they circled her and our dad
and their bag of chips.She could feel the wind as it blew through her beautiful, long blonde hair. Though she couldn't
see the water, she listened to it. Listening to the ocean allowed her to run from our chairs to the surf and back again without
losing her way. She's amazing in that way. If you closed your eyes, you could probably still find the ocean from your
spot on the beach, but could you find your way back?
Children are more amazing than adults in so many ways. They
find beauty in the smallest things. Taylor's love for the ocean is evident in the way she runs, laughing, into a
tidal pool, or the way she flops belly-first into the sand. Her disease has made finding beauty more difficult, but I
believe that it has also made beauty-when she does find it-more fulfilling. We took Taylor to Ripley's Aquarium one day
during our vacation. John and I suggested it, but we'd forgotten how dark it is inside the building. As soon as we walked
in, we both knew-as did my parents and grandparents-that T wouldn't be able to see a thing. Even on her "good"
days, as she sometimes has, she can't see anything in the dark; the night vision went first. For just a moment, I felt
sorry for bringing her, but then I reminded myself that the worst thing you can do to a Batten child, or a blind child, is
to deprive them of things you don't believe they can possibly enjoy because they live in a world of darkness. We never
tell T that she can't do something. She may have to do it more slowly, or while holding someone's hand, but she deserves
to try.
We took Taylor to the stingray pool. There, the stingrays swim to the sides, and children can reach out
and touch them. T couldn't see them, and for almost 15 minutes, she held her open hands and outstretched fingers over
the edge of the pool, not once feeling the brush of a stingray as it glided past. Then, one of the aquarium employees appeared
in the pool, wearing a wetsuit and holding a container of raw shrimp and squid. The rays crowded around her, and she went
around to each group of children with the food, making sure each was able to touch the rays. The first time she came to T,
T missed the rays before they darted off. I watched as she went around the pool again, praying that she would still have food
in the container when she got back to T. Several minutes later, she did come back-and T reached out and touched one of the
biggest rays in the pool. She couldn't tell you what it looked like, but she could tell you that it was slimy and smooth.
The joy on her face in those two seconds that the ray glided beneath her fingers showed just how worth the wait had been.
If T could never see again, but she got the chance to live, it'd be a gift from God. I pray every day that
she comes back to us just the way she was before any of this started, but I don't measure her worth, or our happiness,
in the pieces of her that we still have. I just want her to experience the joys I've experienced in my short life. I imagine
watching an ocean sunset with my younger sister years from now, when we're both old and gray. I describe to her the hues
of reds and golds glittering on the waves, and the sun, a burning ember in the sky that suddenly flickers, then fades away.
She describes to me the fading warmth of the dying sun on her skin and shares with me the words the ocean is saying to her,
words I cannot hear because I have never experienced beauty in quite the way she has. She is holding my hand.
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Last Updated 7/2/08
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