Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

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.” 


  1. Strong post..."kids unrecognized for their contributions to the evolution of human consciousness." is probably the most significant sentence that can be written about a severely physically and mentally compromised person.

    And don't forget how Jesus was called to cure the lame and did so without a moment's hesitation at the flick of a wrist.

  2. I agree with Eric that that sentence was the most powerful. A strong and provocative post that I will think about for days --

  3. I'm so glad I found you, Sharon and Adam. Like Elizabeth, I'm going to have to think on this post awhile. Very powerful stuff, my friend.

  4. You hit home for me with so many of those comments Phil. This will be a post that I will refer back to many times. You have reiterated things that I have felt for a long time and brought me to tears. I feel so grateful to know that there are others like you who understand this unique situation we find ourselves in. I feel so grateful that you are willing to share all your thoughts and fears with us. It helps me a lot. It makes me feel stronger.
    Referring to the religious comments - I was brought up a Catholic but as the years pass I find I am distancing myself more and more from the institutional aspect of the church as it has less and less relevance to my life. It doesn't cater to the needs of my family but it does try to encourage people to be more compassionate.

  5. I agree with Eric about that line being the most significant sentence. I plan on reading this several times. I completely agree that unconditional love is what is missing in humanity. We are the lucky few who have truly experienced it and are trying to help others recognise what it is. I too was brought up a Catholic, but am continually disappointed with the church. I read something the other day about how the church here in Australia is 'trying' to make the churches more disability friendly. Note the use of the word 'disability' in that phrase.

    The weird thing is that all through Ryley's life wherever we go, ministers from all religions make a point of coming over to him and touching is head or asking if they can bless him. What the? I usually ask that they not touch him (often too late). Perhaps they are the ones who need his blessing.

    Anyway. I now have a zillion thoughts running through my head and I know I will put them into a post at some stage.

    What a great time of year to post something as profound as this.


  6. Phil,
    clarity & lucid articulation
    is rare these days...
    I thank you for
    coherently exemplifying this...

    I think Adam would say: Home Run Dad!!
    Ya NAILED it!!!!

  7. Eric: I am anxiously awaiting the flick of the long is the wait time?
    Elizabeth, Marcelle, Carolyn, Anna,'s amazing that we all share such a commonality of experience and views of life.
    My last experience with religion and disability was at my mother's funeral in an RC Church. Of course, there we were with Adam in his spiffy ramp just about 20 marble stairs. The funeral director offered to have the six pall bearers carry Adam in the chair up the stairs. I am not sure who went up first: mother in the casket or Adam in the wheelchair (both were bounced about quite a bit). The funeral director told us that "Father" was not keen on installing a ramp because it would detract from the majestic architecture of the front of the church. Shit!!

  8. Sorry Just reeling from the bit about "father" not wanting a ramp in front of the church! WOW! that's just something!!!

    What an amazing post, I just love how you hit the nail on the head every time.

    So true about religions casting "Shame" on having a child with special needs.

    I know the same is for Adam as I've looked into his gorgeous eyes, that my Oatie has a beautiful soul. Today at my daughers class performance, Oatie reached over to my lap and just grabbed my hand, it was magic. When he holds your hand, there is this magic feeling of pure love radiating from his cute little hand.

  9. Thanks, are so right about the magic of the eyes, the grabbing of a hand, the comfort of mom's lap...I know we believe our kids are perfect; we just have to work so hard at convincing the world of this truth. I am glad that you are taking care of that damned flu.....


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