Reading Marianne Leone's book, one gets a sense that she is an absolute force of nature. Writing from her heart in this deeply moving memoir, Marianne conveys a jumble of intensely felt emotions: sadness and anger co-exist but are far outweighed by the joy, love and pride she feels for Jesse, her brain-damaged son.
Marianne, an actress who is married to actor Chris Cooper, gave birth to Jesse at 30 weeks of pregnancy. On the Jesse's third day of life, he suffered a massive cerebral hemorrhage. He developed seizures, and as he grew, severe cerebral palsy; he remained nonverbal. This led many in the "helping professions" to assume he was an "idiot", to write him off, and even to suggest that his parents institutionalize him.
Marianne has harsh words for the medical profession. She describes one neurologist, who announced that Jesse would never be intellectually normal, as "an ice-cold genius who didn't know the basics of human compassion. He murdered the futures of brain-damaged children every day by making absurd hubristic pronouncements... If we had believed him and stopped trying to teach Jesse new things, the neurologist's dire prophecy would have been fulfilled." Marianne's response: "As far as I was concerned, our son was brilliant and we would raise him that way." In the process of raising Jesse, Marianne was a "vigilant, feral ... mother grizzly (who rose) to towering monster heights" to protect and advocate for her child. She fought every step of the way to ensure that Jesse received appropriate education, and that he was mainstreamed. She and Chris took Jesse everywhere with them, including him in their rich, full lives, all the while wondering where all the other disabled children and their parents were.
Once Jesse got an adapted computer set-up, Marianne's belief in her son was vindicated when his intelligence was tested and found to be in the 99th percentile. He loved to write, especially poetry, and he speaks to the reader through writings Marianne has excerpted. "The most important lesson I can teach is to see people for what they can do and not for what they cannot do," he declared in a sixth-grade autobiography.
Jesse was plagued with seizures throughout his life. As Marianne searched for a doctor who could relieve them, she came to realize that no neurologist would be able to "regenerate Jesse's damaged brain cells." Having heard numerous "worst-case scenarios and gloomy predictions (that) foster(ed) a sense of helplessness ... compounded by anxiety and depression," Marianne hoped to "at least find one who could show us some mercy and who had the moral strength to see Jesse as human." Fortunately, she did find some doctors who were able to see beyond Jesse's disabilities to connect with the talented, loving and caring boy he was on the inside.
Ultimately Jesse's seizure disorder led to his sudden death and plunged his parents deep into grief. However, out of that wellspring of grief, Marianne has given readers many gifts: for parents of disabled children, a message that they must be their child's greatest advocates; for care-giving professionals, a dictum to recognize and respond first and foremost to the humanity and spirit of our patients; and for all, a portrait of what it means to love passionately and unconditionally.