This amazing blog is the story of the life of the parents of January, a 7 year old girl with severe, birth onset schizophrenia. What struck me most about the writing here is how searingly honest the father is about his and his wife's emotions and reactions. Read this, the ending to his introduction, and try not to be both incredibly moved and struck by both the heartbreak and the honesty:
Even then, it did not occur to us that our daughter was mentally ill. Now I wonder who was really delusional. Susan and I held fast to our belief that Jani was just a misunderstood genius. Then Bodhi was born. The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage. We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.
My grandfather was a paranoid schizophrenic, a man who hallucinated and feared and refused to take his medications in the manner which could have provided him a life more accessible to the heart by those who loved him. My mother's cousin was diagnosed with schizophrenia as a teenager, my grandfather as a man in his twenties, and my father's brother, also in his twenties. This is, for my family, more than a disease: it feels like a curse. Living with someone suffering from this disease is like the most severe LSD trip you can imagine, only much worse, because it's real, it's happening to someone you love, and like Alzheimers, it robs that person of who they are meant to be. I try to imagine the pain these parents feel when they look at their beautiful January- and cannot. Of course I cannot. But I can read his blog. I can connect. And I do. Maybe you want to, as well.
This amazing blog is written by the talented and very kind writer and mother, Vicki Forman, who has just had her first book published: This Lovely Life ( which you can find in major bookstores and Amazon.com ) Here, a summary of her memoir:
Vicki Forman gave birth to Evan and Ellie, weighing just a pound at birth, at twenty-three weeks’ gestation. During the delivery she begged the doctors to “let her babies go” — she knew all too well that at twenty-three weeks they could very well die and, if they survived, they would face a high risk of permanent disabilities. However, California law demanded resuscitation. Her daughter died just four days later; her son survived and was indeed multiply disabled: blind, nonverbal, and dependent on a feeding tube. This Lovely Life tells, with brilliant intensity, of what became of the Forman family after the birth of the twins — the harrowing medical interventions and ethical considerations involving the sanctity of life and death. In the end, the long delayed first steps of a five-year-old child will seem like the fist-pumping stuff of a triumph narrative. Forman’s intelligent voice gives a sensitive, nuanced rendering of her guilt, her anger, and her eventual acceptance in this portrait of a mother’s fierce love for her children.
Heartbreakingly, Vicki lost her little boy last year. Evan died of a complication revolving round his physical problems. What is left is the love the family had for him, and his legacy in this memoir. I highly recommend Vicki's graceful memoir, as well as her incredibly soft spoken but simultaneously intelligent and firm style of writing. She reaches me.