Following Ezra; A Few Thoughts

A friend sent me a book.  Not just any book, but a special one which has received a lot of good press, Following Ezra..., by Tom Fields-Meyer.  Many lessons are gleaned from what the autistic boy, Ezra, teaches his father over a nine years period in Ezra's childhood.

Dad learns to appreciate Ezra, in spite of all the frustrations of raising a child with autism.  He truly appreciates and marvels at Ezra. The author holds on as strongly as his son does to what he knows is right for his middle son.  When he insists Ezra must work on good behavior for a month in order to earn a new Homer toy, Ezra indeed does earn the inflatable Homer. I laughed that actually Ezra got little from the lesson regarding good behavior, other than that persistence pays off. " I Got Him!,"  Ezra says.

Sometimes the lessons we try to teach only enforce our own stubbornness and show us up in our own rigidity. 

In the prologue of Following Ezra, Fields-Meyer describes his quest of searching for the right doctors, diets, medicines and therapies. But what he discovers is that he has been focusing on the wrong thing: "It wasn't about finding the right expert for my child; it was about learning to be the right parent," he writes.  (source)

Those preceding words written, my diatribe follows.  Do not read if you are an advice giver.  Because I really do not want advice, I just want to vent.

A woman called me yesterday afternoon, shortly after I had returned from visiting Julie at the nursing home.  She is a Very Busy woman, reinforcing this message as she told me of her active working life.  Her take-away message was that I needed to take care of myself, and that not only did I need to wean myself away from being Julie's main source of consolation, but that I also needed to help her find new friends and new interests.

I hung up the phone, amazed that this Person had both the audacity and undertook the right to tell me how to take charge of middle aged Julie, a person whom she has never met.  Then I thought back to the Ezra book, and realized the irony of Busy Woman believing she had the privilege to tell me how to best shepherd my daughter Julie, whom she has not taken the time to meet or to visit (who actually wants to go to a nursing home? ... I get it).  I doubt she has been around very many handicapped people throughout her lifetime.

It is not like I am devoting my life to Julie.  I spend two or three hours daily with her.  She cannot even turn over in bed by herself, much less bathe, make wheelchair transfers or care for her pressure sores.  How would she eat without food being taken to her on a tray?  Julie's strabismus makes reading difficult.  She has poor fine motor skills, prone to dropping objects.  And what activities could I help her engage in?  Bingo at the nursing home is a highlight on weekends.  She does that alone. How else can I help goad her on to other "activities" when all such outside interests must be wheelchair accessible, along with an aide to accompany her because of the colostomy and urostomy bags always underneath her chair, ready to blow at the most inopportune times? And how is she supposed to make friends?  Where in the world is she to find friends within the confines of the walls of the nursing home, when most there are one or two generations older than she?  (She has made "friends" with her aides, but a prisoner cannot consider the jailer a friend, even in war time.)

What was this Very Busy woman thinking in telling me to help Julie find new friends and outside activities?  

Dear reader, do not worry too much about me.  Yes, I have lost weight.  Yes, I am anxiety ridden.  But I am taking good care of myself.

Ezra's father took care of his son in a way not many understood or condoned.  The Dad pulled screaming Ezra off a wall without losing his temper while onlookers made judgment about an adult allowing a child to throw a tantrum; I have made similar accusations many a time.  But Abba (daddy) did what he thought best.  With God's help, I plan on continuing looking out for Julie in a similar manner.  It all goes back to the Sisters of Charity Mission Statement that I have adhered to even after my retirement from health care administration: providing for the vulnerable, marginalized population in a caring, loving way.

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