When Vicki Forman’s twins were born at twenty-three weeks, weighing barely one pound each, she pleaded with the doctors not to save them. They bluntly informed her that the State of California required the hospital to resuscitate them, and with a flurry of high-tech intervention, these super-preemies, Ellie and Evan, were sent to the NICU to start their long and painful journey to not only survive, but if possible to dodge the many devastating complications such extreme prematurity could bring.
Tiny Ellie died in her parents’ arms within days after her birth, but after a matter of many months, Evan, blind from retinopathy of prematurity and dependent on oxygen and a feeding tube, finally went home. Soon Evan was given other heartbreaking diagnoses – a congenital heart defect, a hard to control seizure disorder, developmental delays – and the Formans found themselves in the world of special needs children, of endless doctors’ appointments, therapists, medications, and alternative therapies.
Despite Evan’s multiple disabilities, This Lovely Life is not so much the story of raising a special needs child, but of a mother’s journey from the person she was before Evan and Ellie, to the person she became; from believing that the word “disabled” didn’t apply to her son, to “loving Evan, no matter who he was”; from anger that the doctors would not let the twins die, to forgiveness and the understanding that being Evan and Ellie’s mother had taught her priceless lessons about love and life.
This Lovely Life: a memoir of premature motherhood by Vicki Forman