Dec 11, 2013 by

9781625106728medParents and teachers can benefit from this book as its ramifications are wide.

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, they often almost killed him.Her husband Art and Susan were nurses, but, even when she began to understand what Deletion 22q11 was and would try to tell the doctors and nurses about it, she was considered (she says it nicer) “a pain in the a..” It seemed the more educated she became the less they listened to her and she would have to watch helplessly as they continued to almost kill him. One of my daughters was diagnosed with an ileus, treated for it, even to the point of an ileostomy. During the year before they reversed it, she (has only one good hand so couldn’t change the bag) spent $30,000 on home care. Then, they decided correctly that she had Ogilvies syndrome and the diet and treatment is very different for the one for an ileus. Recently, they were going to remove two thirds of her colon, but I told her not to agree with it and found (on the Net) that neostigmine pills would and did keep her from constantly being hospitalized.

My role as caregiver is nothing compared to Susan’s and Art’s. I have had moments, times where I considered divorce, suicide, or homicide. Beside the problems with the medical community, she had to cope with Mike’s serious disabilities and his psychotic episodes. Although he had a few years of almost normal existence (and surprisingly he had many friends who cared about him) most of her life with him was spent sleepless, exhausted, and terrified that either the doctors would kill him or Mike would kill himself.

A psychiatrist asked my daughter (then she had only 23 of her 26 operations), “Why haven’t you killed yourself?” I think Susan would say two things. First, she believes that God’s will is mysterious and she must accept what he wills. The other is her suffering with Mike as he went through terrible pain and disfigurement brought her closer to him as she admired his courage and so her courage and her love was what kept (and keeps) her going. I guess if anyone deserves Mother if the Year, it is Susan.

Get to know her personally a we discussed her life, Mikey, and her book.


Education News
by Education News
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