Squint, It Makes Things Prettier

Trying to see things in a better light, here goes another rant. Why is it so difficult to get people to do their jobs?  

After over two months waiting for a physician specialist consult for Julie, the paperwork still has not been forwarded to the gastroenterology group practice.  Every time I have asked about when the specialist would see her, the answer was that it "just takes time" or that "it is in the orders, just wait."  Conceding that the inquiry had been made and we were just waiting for follow-up, I got fed up after waiting over two months with nothing happening. So in tears, I created a minor stir-up at the nurses' station yesterday. Sure enough, the orders were not sent to the physician group by the person responsible for this seemingly minor task.  

And that inhaler Julie asked for three weeks ago?  Still not in hand. Thanks to her diligent nurse, yesterday we at least got some answers and medication now is available for J's asthma.  We shall see if the consultation is forthcoming.

Sigh.  I hated to channel Shirley MacLaine in Terms of Endearment, but, yes, I was ranting.  JUST GIVE HER THE DAMN MEDICINE!  Thank you, Debbie.  Blessings on you. Maybe the consult will come through, also.

Julie asked for red highlights from the beautician at Mesa Manor, similar to Julianne Moore.  She got highlights for sure, but more like Cyndi Lauper...

Just squint...and the red looks softer

I can, with one eye squinted, take it all as a blessing.

The Habit of Being: Letters of Flannery O'Connor

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.

source

The Kindness of Strangers

Friend Carol (we met in 1973 while at MSU in Lansing, Michigan) sent an email to her friends, none of whom is known to me.  She asked her acquaintances to mail Julie a card on her birthday to cheer her. After all, our daily visits while she lives in the nearby nursing home can only occupy her for a few hours during the day. And Carol knew that, so she sent out a mailing asking for people to send Julie a birthday card, her first one as a widow.

The response was gratifyingly sweet with over a dozen birthday wishes being mailed out to Julie. Cards came from Kentucky, North Carolina, Texas, Indiana, Louisiana and Colorado.  Julie is a Big Kid when it comes to birthdays and loves the fal-de-rah of a celebration. Gene is making her some Mexican food and purchasing a cheese cake, at her request, for her most-of-the-day visit at our house.  A special van will bring her in her chair for the party.

Thank you, all of you, for the cards.