Chapters (15)
“It’s a recessive trait. It comes from both of you. You are both what we call unaffected carriers. There would have been no way for you to know.”
Meg pushed my hand away, gently, but away, ostensibly to find a tissue in her bag.
Empidonax sp. A right humerus with a damaged head was taken from the 20–25 cm level. Too few properly prepared reference specimens of the various species were available to make accurate species determination. The characters of the subfossil appear nearer E. hammondii than E. difficilis, but it is closer to the latter in size.
There was no other way to say it, except of course that we were left to say it ourselves, though not out loud; that would have been too much. Our daughter was dying. My little Sarah would not survive this genetic defect. I was lost. Meg was lost. She couldn’t even blame me for what was happening. For her sake, I wished that she could have.
Over time, my daughter would suffer worsening seizures, her sight would finally fail altogether, her speech and motor skills would grow progressively worse and fade, and she would suffer mental impairment; she would become demented. I would lose her before she was gone. Selfishly, my first impulse was to find the cheap, old, five-shot .38 that had once been my father’s but was now hidden away in a trunk, put the muzzle inside my dry mouth, and pull the trigger. My usual response to all situations (namely, to search for and implement a solution) had been effectively taken away. There was no solution. Even the quickest study of the disease left no room for doubt. My daughter would not be cured; her life would not be made better in what abbreviated time remained for her. And worst of all, worst of all, my daughter was all too capable at that moment of understanding the gravity of her situation. How does a parent tell his daughter that she will not only die young but that she will essentially fall apart on her way to her end? Does a father tell his daughter? I looked at Meg. I wondered if she would be able tell her daughter, my daughter, our daughter.
We did not tell her that night. We told her that the doctor thought she had epilepsy, that she had to determine what kind of medication she would take, that we believed everything would be all right, that she would live a long life. Our lie was made okay because we left ourselves an out: we had said we believed she would be well, not that we knew, not that it was a fact, not that it was true. Belief was a wonderfully plastic notion. We put her into bed and tucked her in, as we did when she was two, warm under her blanket and our lie.