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Yearning for Normal

by Susan Ellison Busch

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I phoned for an ambulance. As I called, Mike paced back and forth in the kitchen saying, 'Just drive me. I'll be okay.' He told me that he had been cooking meatballs and his shirt caught on fire. While waiting for the ambulance, I got him some pants for modesty, covering his burnt waist and buttocks. I remembered a little from nursing school about burns, so I tried to get him to lie down on a quilt since I knew he was in danger of going into shock. This heartbreaking journey will take Susan Busch and her son, Mike, through hospitals, backyards, schoolrooms, psychiatric wards, a court room, a burn unit, and the corridors of Susan's own heart. But beyond the struggles of adjusting to life with this deletion, there is a tale of humanity, with all its sorrow, love, and hope. This story is not just for the parents of children with 22q.11 Deletion syndrome, but for their friends, neighbors, doctors, nurses, teachers, speech therapists, social workers, police officers, paramedics, firefighters, ministers, and whoever else likes a good story.… (more)
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I phoned for an ambulance. As I called, Mike paced back and forth in the kitchen saying, 'Just drive me. I'll be okay.' He told me that he had been cooking meatballs and his shirt caught on fire. While waiting for the ambulance, I got him some pants for modesty, covering his burnt waist and buttocks. I remembered a little from nursing school about burns, so I tried to get him to lie down on a quilt since I knew he was in danger of going into shock. This heartbreaking journey will take Susan Busch and her son, Mike, through hospitals, backyards, schoolrooms, psychiatric wards, a court room, a burn unit, and the corridors of Susan's own heart. But beyond the struggles of adjusting to life with this deletion, there is a tale of humanity, with all its sorrow, love, and hope. This story is not just for the parents of children with 22q.11 Deletion syndrome, but for their friends, neighbors, doctors, nurses, teachers, speech therapists, social workers, police officers, paramedics, firefighters, ministers, and whoever else likes a good story.

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