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Orchid of the Bayou A Deaf Woman Faces Blindness

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And that was that.

They say news travels through the deaf community faster than the hearing community. This may be true. Once any of us finds out information of any sort, we feel obliged to inform our friends. Usually, immediately. After I told Rachel, I felt that everyone knew, and that helped me to be able to talk about it more easily. Somehow that made me feel better.

*

From the beginning, Lance and I had wanted two children, but the dramatic loss vision during my first pregnancy scared me. My mother-in-law came with me to the doctor’s again. Again I watched her hands and lips as the doctor spoke. The doctor agreed a second pregnancy was dangerous; it might destroy more of my remaining vision. “Do you think the child would have Usher Syndrome?” I asked. It was the most important question of all.

He and my mother-in-law exchanged talk for awhile before she turned to me.

There was little chance that the child would have Usher Syndrome, said my mother in law. There was nothing like it in her family or Lance’s father’s family. Lance’s deafness had been a total surprise, and there was no instance of blindness at all.

Our children would probably be safe? I asked.

She nodded.

I glanced from my mother-in-law to the doctor. His face was impassive. It was as if he were describing earth weather to a Martian.

When I was pregnant testing was impossible. A few years later as we near the second millenium, we could test, but usually didn’t, for a number of the really outrageous recessive genetic mischief makers—cystic fibrosis, sickle cell anemia, Huntington’s chorea, Tay Sachs, and some forms of breast cancer, mental retardation, and Usher Syndrome. Testing was no easy matter, however. Chromosomal material put through its paces to check for Huntington’s chorea, for example, would yield no information about Tay Sachs or Usher Syndrome. Each test had to be performed separately; each cost a bundle; and most were not covered by insurance. No wonder testing was rarely even considered until one was in terror for oneself or one’s children—and then it was almost always too late.

Still our dream was for two children. We both felt Jason should have a brother or sister—just as Lance and I did.


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