6.26.2012

soul window

Written by my friend Catherine Taylor

Last night I dreamt that my son Leland hugged me. I put his floppy arms around my neck, hugged him gently and then released. I did it again, never taking his arms from around me, but continuing to alternately hold him lightly and then in a stronger embrace so that he could tell the difference between the two. Finally, I felt him tighten his arms around me, so lightly it would’ve been imperceptible to anyone else, but I was acutely aware of the difference. When I woke, I told my husband about the dream and cried in that way that good dreams can make us cry—as If they’re a portent of what will be some day; that we shouldn’t worry, these things will come to pass, its only a matter of time. In dreams, I’ve seen my son take steps, communicate with us, run.

Leland can’t walk, can’t communicate. He contracted viral encephalitis from a mosquito bite on his twelfth day of life. His brain swelled as much as it could within the confines of his unfused skull plates and fontinel, but it wasn’t enough. He was left with global brain damage, cerebral palsy, Cerebral Visual Impairment (CVI) and refractory epilepsy. Drug after drug eventually fails him, as has the ketogenic diet. Two weeks ago, we had a vagus nerve stimulator inserted into his chest—this device cycles automatically with the goal of short circuiting seizures by sending out an electric impulse to his brain. All hope rests on enough of a decrease in seizure frequency and severity to allow him the chance to develop some skills without the constant interruption of seizures, so that someday, perhaps, my son will hug me back.

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Give to cure epilepsy: http://www.calvinscure.com

Sweet Leland

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