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A Piece of My Mind
September 15, 2020

Finding His Voice

Author Affiliations
  • 1Department of Psychiatry and Human Behavior, Warren Alpert Medical School, Brown University, Providence, Rhode Island
  • 2Edith Nourse Rogers Memorial Veterans Hospital, Bedford, Massachusetts
JAMA. 2020;324(11):1039-1040. doi:10.1001/jama.2020.16334

I’m sitting in my son’s intensive care unit (ICU) room, on the window seat that transforms into an overnight bed with the help of a sheet and a pillow, watching the medi-flight land on the hospital landing pad across the way. For 19 years this scene has played out before my eyes. Ben is recovering from his 50th surgery, to address respiratory, orthopedic, or eye issues resulting from Schwartz-Jampel syndrome, the neuromuscular disorder that my husband and I unwittingly passed on to him at conception. I call these medi-flight landings my messages from God; each one is a reminder that no matter what is happening in this ICU room, it could certainly be worse.

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