Happy Anniversary to US!!

       Well, this was/is a match made in heaven...and as of August 29 (today), it's now 30 years...we have been through a lot together especially with the cute blond boy in this picture.  And yes, we were once young despite what we appear to be now.  I don't think life is short...this family picture seems about 10,000 eons ago.  But then, time is relative....

Aimee, Sharon, Adam, Phil Dzialo

       To demonstrate the intensity of our journey, we actually thought last year was number 30  and celebrated it with an "elegant dinner on the Cape Cod Mystery Train."  Big Mistake!  Dinner on an antique rail car is not really fun. 

       Love is not measured by time, or any single definable factor or moment or action.  As Adam has always communicated to all..."Love is being there, especially when you don't have to ..."    That's all there is to it folks, it's really that fundamentally simple.  You don't need a self-help book, novel or intense psychotherapy.  Definitions are meant to be simple.

       Here's to another 30; maybe we'll get the date right then!

     

Good Night, Irene, Good Night!

       One of the glorious benefits of living by the ocean on Cape Cod, MA.  We survived and even did three hours of ABR during the hurricane.  What else is there to do?

Falmouth Heights Beach at low tide

View from The Clam Shack, low tide

Falmouth Inner Harbor and the small boats

Falmouth Heights Beach at low tide, wait till high tide at midnight

Not mine, but blocking the shore road

"Ceramic to Clay": Sharon's Interview on Falmouth TV

         Ceramic to Clay by Sharon Dzialo was published in October, 2010 and shares the story of the first twelve years of Adam's amazing healing process after a near drowning when he was under water for 25 minutes during a day at summer camp.  This eight minute video and commentary was produced by Falmouth TV and aired in February 2011.  It contains many insights and "behind the scenes" stories which are a part of our life journey.  It's a very powerful production (but them I'm  a bit biased).  Please take a few minutes to watch it.

"I'm Uncomfortable Around Disabled People..."

     Comments abound when people are questioned as to why Adam is not in the their lives?  Frequently, I hear, "I'm not comfortable....."
     We all have disabilities but some disabilities are not obvious to casual observers.
      We do not avoid you because of your more subtle disabilities.  I become very angry when people avoid my son because of their personal discomfort!  This response eats at my core and brings out an atomic response.

Adam at his Last ABR Evaluation

        Fuck you and get over it!! Get over your discomfort, now!  It's not my job to make you comfortable; it's not my job to make my kid visually appealing to you; it's not my job to make my kid walk and talk like you...It's not my job to blow sunshine up your ass!  Simply, love him as a child of the universe, perfect in all ways important or run and hide in your cave of delusion about how things should be!  Consider him as important as you consider yourself and relate to him out of a belief in the perfection of all humanity.  If you can't; stay far, far away!  Your energy can destroy our harmony and equanimity.

       The internet and blogging world is just a modern day incarnation of a huge smudge stick...smudging (see previous post) will release subtle negative energy to dissipate.  Releasing your anger and rage through cyberspace will dissipate it and release its bonds which bind you.  Releasing is freeing...releasing will make it stick to whatever object it chooses, not you nor your kid nor your home.

        Send your ills into the black hole of cyberspace.

Expelling Evil Spirits...The Gift of Smudging

        All matter attracts energy.  Energy and matter are constantly interchangeable.  Birth brings energy into matter and death brings matter back to energy in the very same way as when wood burns it become energy and that energy provides the building blocks for new wood with the emission of CO2, ash and other plant nutrients.  The total sum of energy and mass (matter) if you believe Einstein is a constant in the universe and there is always a continual process of interchange.  We never really die, our spirit becomes matter, matters reverts to spirit (energy) and then back to matter,  All matter attracts energy, be it electro-magnetic, ionic or emotional...spirit is energy which attracts matter.  Energy is good or bad, positive or negative; spirit is positive or negative.

       Our Native American elders (and I suspect all our ancestors in tune with nature) have taught us that before a person can be healed or be a healer of others, you have to be cleansed of bad feelings, negative thoughts, evil spirits and negative energies...cleansed both physically and spiritually.  The elders have told us that ceremonies of cleansing must be entered into with a good heart so we can walk in a sacred manner and be helped by good spirits to enter a sacred realm.
        The disabled, their parents and care-givers, therapists and advocates are fundamentally vulnerable to  attracting negative energy and having it invade home and spirit.  Need invites negative energy in the form of unresponsive bureaucracies, indifferent family, relatives and friends, unavailability of personal and social supports and the fragility of bodies riddled by disease, by accident, by injury, by cruel twists of genetics.  Without profound need and dependence on the goodness of others, indifference would not play a significant role of devastation of the human spirit.  The vulnerable attract the stares, the glances, the rude and  disrespectful comments of the "uninitiated into the world of disability."  Profound vulnerability attracts the negative energy of "no response" or pity or disdain.
         As children of the "land of disability", certainly not the "promised land", we are called upon by many to forgive, to overlook and reach beyond the negative energies and spirits that we confront on a daily basis.  And while forgiveness is possible and laudable, it is an intellectual process.  Release of the energy of negative spirit and attraction must occur on the cellular, the energetic level where it resides to rear its ugly head.  This release of our evil spirits allows us to move closer to a state where healing is real and our role as "wounded healers" can be an effective tool of caring for those whom we are committed to care for.

        Our elders throughout civilizations used the energy of plants to cleanse us and our homes of evil spirits.  We have been taught that smudge and incense attract the negative energetic fields and the evil spirits and create positive and clean zones of safety at the very core of being.  Smoke attracts itself to negative spirit and energy and  releases it into a space where it can be regenerated.  Smudging is very effective when you have felt depressed, angry, resentful, unforgiving.  It is effective in combating the deep injury of human indifference.  It is a ritual which helps us and our children in their journey.  Certainly effective and certainly worth a try.
         The process is simple:  Gather dried sage, cedar, sweetgrass and rose.  Place it in a vessel like a large sea shell (although some elders would frown about the use of shells.)  Ignite the mixture in the vessel and use a feather (I prefer a hawk feather) and fan the smoldering mixture and fan it about the house, about the participants in the household.  The change in energetics is quite immediate.  Sage heals and expels evil spirits and negative energy; cedar purifies with assistance of the Source; sweetgrass invites goodness, blessing and warmth.  The combination transmutes evil spirit into life force.  Plant medicine, when used with thanks and giving, has the power to heal life and its participants...especially the very vulnerable.

        The shell represents water; the unlit herbs represent earth; the lit herbs, fire, and, the smoke air.  So, this is very similar to the elements of healing of Chinese traditional medicine.
        I offer this as an attempt to make life of the disabled and their families and caretakers easier and holier and purer.  Healing is intensified in a fountain of purity freed from evil spirit.  All you can do is give it a try and believe.  You may need little else from the energetic world.  Do it often and do it everywhere!

Blessings and freedom and health

           

The Hawk, The Messenger, The New Life..

         When the anniversary of Adam’s accident nears, we tend to review some of the most significant events, the moments in time when “meaning and clarity” appear.  Prior to this last anniversary my wife found  herself  at a multi-cultural street fair, looking for a smudge stick to clear the house and our life of any lingering negative energy.  She wandered among the vendors and was drawn immediately to one table.   A beautiful photo of a hawk stood right before her.   It “called to her” so she purchased it and then had a wonderful conversation with the artist.  The artist offered to make a small medallion of this same hawk – a necklace for Adam! 

         So, why the hawk?   Hawks have been in our life on a fairly regular basis since the time when Terri, our loving clairvoyant guide, entered our life.  I have included an excerpt from Sharon’s book CERAMIC  TO CLAY which Terri graciously wrote for us.  It will help you understand why the hawk is such a significant and magnificent creature in our life:

          The light on the phone machine blinked with an urgency, red flash against shiny plastic black. I couldn’t ignore it. I didn’t. I picked up the message from a client needing to speak to me right away about a young boy who had been injured in a terrible accident. I called her back. I listened with the ears of my heart, scanning every word she spoke as she described what had happened to Adam, and no, I had not heard of the story, and yes, I would consider it, and I told her it would take four days of prayer and contemplation to decide if I should take on this case.

......


           So, the prayer and contemplation for Adam began. Each morning I would meditate and ask if it was correct to take on this case. Each morning I heard nothing.

            On the morning of the fourth day I left for an appointment in town, annoyed at myself, realizing I had forgotten an umbrella. The rain was heavy at times, and the dirt road that led from my house to the main road was rutted and muddy. As I approached the main road, about four or five yards from the intersection, I saw something on the ground. With a wet, foggy windshield, I wasn’t sure. I stopped and got out. From behind, it looked like an owl, or maybe a hawk, and very dead, wings splayed on packed dirt and stones.  I went back to the car and got some tobacco to make an offering to the spirit of the bird. I crept close and hunkered down, sprinkling the soft grains of tobacco, watching them float to the ground, and as I did, the bird swiveled around with a fierce, fast swoop.  It stood upright and gathered in its wings. We were literally eye-to-eye, and neither of us blinked. I asked from my heart-mind: Are you okay? What happened? How can I help you?

            The bird had a wide-eyed stare with a deep intensity that sent shudders through me. It did not move. I stood. The traffic on the intersecting road was busy. Often, people drove down this county two-lane like a highway, even in this wet weather. I took a few steps toward the road, thinking, What to do?  How to help?  I put out a prayer from the depths of my heart for help. As the rain pelted me, standing a few feet from the bird, I was now scared that if a car tried to turn in, it would flatten the bird. I placed myself immediately at the juncture of the two roads, praying, sometimes out loud, for help. A truck stopped; it was a yellow pickup truck with an MDC sign on the door. A man in a flannel shirt and jeans put a jacket over his head as he made his way to me.

“What we got here?” he asked.

            “Don’t know,” I replied. “I just came upon it a few minutes ago, and didn’t know what to do.” I explained how I had found the bird and how it had moved quickly upright as I approached.

“I’m the raptor rehab specialist from the MDC,” he said as he squatted down and looked intently at the bird.

Our House Hawk in Falmouth

          He stood up and walked around the bird.

          “Well,” he said, “don’t see any blood. And the fact that it has its wings folded up means that they are not broken….It is a juvenile red tail hawk. Must have been on a trial hunt and got its bearings mixed up. You know teenagers are like that. In a heartbeat they can get themselves into situations that are way over their heads….Probably chasing prey and bounced off a windshield.”

He took off his jacket and threw it over the bird.

           “You got time? To do some monitoring?  I mean, can you stay and watch the bird? Make sure it is okay? I will give you my card, and you can call me. It is in shock, and when that wears off it should fly away. If not, well, call me; more serious injuries may have happened.”

He proceeded to move the hooded bird gently to the side of the road and placed it on a branch lying on the roadside weeds, and then he carefully lifted his jacket as he handed me his card and said, “Well, I’m really on another call. Good luck!”

I turned and faced the bird, squatting eye-to-eye again, my feet wide and back rounded as rain rolled down the curve of my spine into puddles on the ground.

            There was something about the eyes. So wide, unearthly in a way that I told myself it must be the shock. So deep those eyes, like it was telling me a story in a language I couldn’t quite grasp.  I trembled, so close to something this wild. The bird did not move.

            After three hours, cramped and stiff, I needed to finally get to town.

            “I’ll be back,” I whispered, “and, well, I hope you aren’t here then.”

            A few hours later, I did return and the bird was gone. A thrill went through my heart.

            The next morning I called the Dzialos and said yes. I would come and meet them.

Back Cover of  "Ceramic to Clay"

We Are Sisyphus

      In 1942, Albert Camus, the French existentialist, wrote The Myth of Sisyphus.The final chapter compares the absurdity of man's life with the situation of Sisyphus, a figure of Greek mythology who was condemned to repeat forever the same meaningless task of pushing a boulder up a mountain, only to see it roll down again. The essay concludes, "The struggle itself...is enough to fill a man's heart. One must imagine Sisyphus happy."    


       In The Upside of Irrationality Dr. Dan Ariely describes an experiment that tests how people respond when the meaning of their work is diminished. The test condition is referred to as the Sisyphusian condition. The two main conclusions of the experiment are that:

• people work harder when their work seems more meaningful;
• people underestimate the relationship between meaning and motivation.

       This epic myth and Camus' interpretation resonate with me as the parent of a severely disabled child/adult.  Meaning is crucial to the ongoing commitment to care and to care with enthusiasm and commitment.  That care is clearly similarly analogous to rolling the rock up a hill, to making great progress and strides forward and to have the rock slip back down.  We balance increased comfort, increased development, increased presence with consecutive regressions...respiratory difficulty, spasm, contracture, rigidity.  The pendulum swings back and forth as scoliosis diminishes, hips sublux; as hips normalize feet rotate.  Today breath is normalized, tomorrow it is shallow and raspy, the next day, normalized.  Steps forward and steps backward.  The persistence of the journey must continue.  Our commitment to his therapy must be unwavering despite the soul weary residuals.  The force on the rock cannot be mitigated by circumstance.  Our meaning comes from the "work."  Nothing else matters.

In that daily effort in which intelligence and passion mingle and delight each other, the absurd man discovers a discipline that will make up the greatest of his strengths. (The Myth of Sisyphus)

   

  And, so, as parents of severely disabled children, meaning comes not from getting on with our lives; it comes not from making sure that we have a life; it comes not from closely knit circles of family and friends.  Nor does it come from great literary contributions to humanity, nor from scientific discovery, nor the accumulation of money and possessions.  It comes not from curing our son or daughter nor from having the world appreciate the "miracle" of our child, nor from teaching others the value of caring and the sins of indifference.  Meaning does not come from our advocacy or our advice to others; it comes not from sharing our wealth of accumulated knowledge of disability.  Our meaning comes from the unwavering, unceasing rolling of the stone up the mountain, day after day, year after year for as long as it takes.  We have a privilege of meaning that so few others have the opportunity or desire to pursue.

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor. The Myth of Sisyphus The Myth of Sisyphus.

Opinions differ as to the reasons why he became the futile laborer of the underworld. To begin with, he is accused of a certain levity in regard to the gods. He stole their secrets. The Myth of Sisyphus The Myth of Sisyphus.

      

           We have the privilege of stealing the secrets of the gods ...that the belief of the gods was that there was no more dreadful punishment than futile and hopeless labor and their belief was wrong.  There is wonderful and powerful meaning which accompanies the rolling of the rock.  The gods were wrong and it is parents who daily care with passion for their disabled children that have proved the gods wrong.  We have discovered meaning and daily battle never to lose what we have gained and learned.  Our lives are our meaning because we have chosen our work with a fierce determination.  As Mary of Magdala spoke in her gospel, "...know ye not that ye are all gods?"

I see many people die because they judge that life is not worth living. I see others paradoxically getting killed for the ideas or illusions that give them a reason for living (what is called a reason for living is also an excellent reason for dying). I therefore conclude that the meaning of life is the most urgent of questions.The Myth of SisyphusAbsurdity and Suicide

       We are the privileged...the parents of the severely disabled.  We need not search for meaning.  It has been given to us as a gift.  We simply need to accept it.  What others struggle a lifetime to decipher, we have been given in an instant.  Embrace of the gift is all that is required.