Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30
Showing posts with label chose life. Show all posts
Showing posts with label chose life. Show all posts

Saturday, December 17, 2011

Sustaining Life....


       Not a day passes by me without a serious reflection upon what sustains life in our severely disabled children and adult children.  Against all medical and mathematical odds, they survive and thrive.  Against the backdrop of a society which stigmatizes the compromised, they survive.  In the world of western medicine, despite cutting, implanting and medicating, which are commonplace routines, they survive.  In the myriad of strangers and others who blow in and out of their lives, the disabled face people who look away...the other way, they survive.  In a system of dwindling resources and respite for their care givers, they survive and live.
       There is suffering, floating in and out of consciousness; bodies deformed by spastic contractures; bodies incapable of many controlled basic functions; bodies which are probed and examined and invaded; spirits which could be crippled by the indifference of people who should care and do not.  There is deep suffering in their cellular awareness that the outside world perceives their lives as not worthy of life itself.  There is suffering in the spiritual knowledge that mom and dad may not be around forever, and that no one has stepped up to fill these voids.  There is an intuitive belief that they may be a burden, that their needs are overwhelming.  Yet life sustains itself, and always with a smile...that smile which sustains the caregivers and that smile which itself is sustained by the unconditional love of the parent and the care-giver. There is no indignity when care is given because of that love.  Unconditional love requires nothing in return...unconditional love is a gift particularly reserved for the disabled.  This love sustains life because it permeates the very core of being; it is sensed at cellular levels and allows life to pursue life.
       I often view institutions, hospitals and group homes as places devoid of this level of love.  Great care, great medicine, great homes never communicate the level of unconditioned love to those who need mom and dad forever.  The greatest  fear of parents is that their children will be alone, alone in living and alone in dying.  We are the mechanism of sustaining that life force in our kids; kids unrecognized for their contributions to the evolution of human consciousness.
      I am amazed that people worship a man who suffered for several days, was betrayed by friends, was given up by supporters to an indifferent government, beaten and killed over a course of three days.  Myth has it he rose a few days later.  Yes, he suffered and yes, he died.  Does the suffering and the betrayal of the Christus compare to the suffering and social and betrayal of our kids?  Not for three days, but for 3 years, for 13 years for 60 years...suffering more intense and more prolonged than that endured by a man who others claimed to be a god.  Perhaps, he did not experience that unconditional love that children have; maybe that's why he folded?  Lessons to be learned? I, perhaps, believe that our children, disabled and pure of spirit are gods.
       I remember a lifetime ago (just after Adam's accident) receiving a card from one of the parents of a boy who played hockey with Adam and who had just seen him.  He said that it "was like looking at the face of god."  The comment has never left me..


      The lost gospel of Mary of Magdala (the supposed wife of Jesus and mother of his two sons) was discovered in Nag Hamadi in the 1940's.  She, of course, was in a power struggle with Peter, who denied the lord. This misogyny continues 2000 years later.  Perhaps that's why the gospel was suppressed?  The fragment found contains her final words which she learned from her lord, "Know ye not that ye are all gods?"  I believe that our vulnerable are gods and their life sustains because of unconditional love, something which was not active in the life of the Christus.  So many lessons to be learned, so much knowledge to be unearthed.  I believe that the source is in our midst and is sustained by unconditional love.
       We can never allow our most vulnerable to be exposed to care and homes without deep unconditioned love; this is a death sentence.  We sustain life; there is no single more important task or event that any parent can share in.
       Of course, I have long abandoned the notion of a personal deity and I believe that religions poison everything. (Hitchens, 2007: "God is Not Great: How Religion Poisons Everything)  Religions also stigmatize and devalue the disabled.  How few churches/temples have ramps and are really accessible!  How many religions still believe that disability is a punishment for someone's sins?  How many religions believe that disability is taken on by a "victim soul"?  How many religions believe that the disabled are here waiting to be healed by a miracle because they are less than perfect?  How many disabled kids are viewed as "pillow angels"?  Without religions, we can fully honor their sublime divinity and full humanity.

“Those of us who write and study history are accustomed to its approximations and ambiguities. This is why we do not take literally the tenth-hand reports of frightened and illiterate peasants who claim to have seen miracles or to have had encounters with messiahs and prophets and redeemers who were, like them, mere humans. And this is also why we will never submit to dictation from those who display a fanatical belief in certainty and revelation.” 
― Christopher Hitchens

Christopher Hitchens
N.B.and P.S.     Hitch (Christopher Hitchens) died a few days ago at age 62.

A recent blog tribute to Hitch written by neuroscientist Sam Harris  HERE


What can be asserted without proof can be dismissed without proof.” 


Wednesday, November 30, 2011

Choosing a Life or Living a Life? (Sharon Dzialo)



     Does that question sound pedantic?  Here I am again, stealing the blog away from the husband. (Ed. It's really ok!)  He has writer’s block OR he is stuck in chronic sorrow (his new favorite topic) OR he has been working too hard – raking, trimming, hauling and helping clean the blocked septic system.  At any rate, he gives me no static when I decide to write. 
     I went by myself yesterday to see the movie THE WAY with Martin Sheen and Emilio Estevez.  The husband does NOT enjoy sitting in a movie theater   (Ed.  He has PTSD and ADHD and .....can't sit still and focus) and I like not being distracted by his sighs of boredom and discomfort (Ed. like when he keeps checking his cell phone for the time.).  I can completely lose myself in a good movie, as well as a good book – love that feeling.  I have been in a deep funk lately and I was not really looking for distraction or entertainment.  I NEED to find my way out .
     The movie was a gentle drama about a father who travels to St. Jean de Port in France to collect the remains of his son who was killed in the Pyrenees in a storm while walking the Camino de Santiago.  Unfortunately, he and his only son had a cantankerous relationship, neither one able to appreciate the life of the other.  When the father arrives he is given his son’s hiking equipment.  He decides to embark on the pilgrimage to honor his son, spreading his ashes along the way.  The father comes to understand and appreciate  his deceased son’s life.    The Camino de Santiago is an 800 mile trek from the Pyrenees to the Cathedral of Santiago de Compostela in Spain.  People have been making this pilgrimage for a thousand years for religious, spiritual or cultural reasons. 
     I cried many times.  I also laughed.  Some people who view this film may be tempted to embark on their own pilgrimage.  I was not tempted because I recognized the stark reality that I have chosen my own journey and I don’t need to walk those 800 miles.  Ultimately, I will probably walk much farther and it will definitely take much longer than the two or three months most folks need to complete the Camino.  The father discovers the difference between the life we live (when one goes through life blindly unaware of one’s actions and how these actions affect not only ourselves but others) or the life we choose. 
     Some may not view our life with Adam post – accident as a choice but it is.  We choose to care for him at home.  We choose to seek the best possible healing modalities.  We chose to retire early and to live by the ocean .  I don’t need churches or saints.  Nature provides my access to the Divine, to the Source.  We choose to work hard daily, always seeking to improve quality of life for ourselves and Adam.
     Seeing this movie gave me a spark, a validation, a gracious reminder about the richness of a chosen life.

   
N.B. (Ed. are  editorial comments by the blog owner....Phil and so called "the husband")
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