What to make of the author? Is she the Mother of the Year or a guilt obsessed person with religious fears that if she doesn’t do everything to save her son she will be a failure in God’s eyes? As I began reading the book I wondered if she would be in the two thirds who die before the recipient of their care does. Read the book and decide for yourself.
As a caregiver for my wife and a daughter and a son with serious medical problems and disabilities I have some idea of what she endured as she fought for the best treatments for her son. I hope you never have to deal with the arrogance, the insensitivity of those medical professionals that Susan faced to even get an idea of what were her son’s problems?The reality is that we have placed doctors in the impossible position of playing God with our lives. I know many and the best realize there is no way they can live up to these expectations. Unfortunately, many, fearing malpractice suits and in HMO’s with insurance and administration pressures, treat their patients according to the dictates of those who wield the power - or suffer the consequences. It is one reason a good doctor who has listened to his patient, diagnosed correctly the problem, and has outlined a proper course of action can have someone miles from the patient he’s never seen tell the doctor he can’t do what the doctor knows will work. My years teaching I experienced the same frustrations and stupidity from those with more legal power. I had tenure and I was willing to do what I thought would work and proved that I was right. I paid a heavy price for doing the right thing.In Susan’s case, from the moment he was born, most doctors had no clue what was wrong with Mikey. Deletion 22q11 was not in their training so they treated him on the basis of his symptoms or, with some, a syndrome that fit their knowledge. Of course,