July 24, 1998..."If There is a God, He Will Have To Beg You to Forgive Him"*

My dearest son,

       On July 24, 1998 at 1:25 pm, exactly 15 years ago. you drowned.  I have never had the courage to use the word "drown" because of the terror that emanates from the image.  I have always said near-drowning, but the reality is that you did drown, submerged 25 minutes under the waters of a raging river, a foot entrapped in rocks.  Heroic efforts were made to bring you to the surface.  No pulse, no heartbeat, no respiration, just a blue pallor and a peaceful face.  God was asleep, he was absent, he was indifferent, perhaps he never existed.  Yet, you survived; not by any intervention of  divine nature but rather through the remnants of our evolutionary heritage's response to the possibility of drowning , the mammalian diving reflex.  You survived months in Intensive Care - left without speech, the ability to communicate, the ability to move, and a body which gradually froze in spasticity and contracture. You hovered between death and life and eventually chose life.  Everyone pretended to care, at least for awhile.  You were momentarily surrounded by friends, relatives, flowers, balloons and trinkets...for a awhile.  But that was 15 years ago.....
      To this day, I am plagued by images of you being entrapped and enveloped in water.  I am plagued by the terror which filled every cell of your being.  I am plagued by the fear of your impending death.  I am plagued by the image of planning a funeral as I traveled to the trauma center.  I was plagued by the possibility  that you might not make it, that you would be alone...your greatest fear as a child.  I am plagued that you always spoke to me about the need to be cared for, long before the accident.  I am plagued by the unspoken, unacknowledged burden and grief that these events have imposed upon my daughter, Aimee.   I am plagued...wounded, and the wounds can never, ever heal.  Maybe, they should not heal! One never gets over this terror.  For 15 years, I have never eliminated the fear that something can go wrong.  I think and feel the worst; smiling is a rarity for me, even though you, my son, always smile.  The sorrow is chronic and the fear unending.  I never, as a father, yield - always searching for the magic bullet which makes life easier for you.
       But you, son, are alone,   Alone in your fear, your thoughts, your dreams.  You are alone, even as mom and dad passionately and unconditionally care for you every minute of every day for 15 years.  Alone...but, does it have to be so?  Where are those friends, your cousins, your aunts and uncles, your teachers and therapists...all those who should care and reinforce the fact that you are not alone, that you are alive, that your life is worthy?  Why have they run?  Fear, lack of comfort, time and distance, not knowing the words to say. fear of the look in your eyes, my son,  guilt over the lies they told (remember, some said they would be there for however long it takes).  Do they see their souls in your loving and yearning eyes? What stories have they fabricated to justify leaving you alone?  Or is it the evil of human indifference, the "not caring" which renders you only an abstraction.
     July 24 will come and go.  We will celebrate your life and struggle with you.  Will there be a phone call to see if you are still alive?  Will there be cards, flowers, balloons, small tokens of love?  I know one hero who will call, who always calls on that day to say you are never forgotten.  One man, one constant voice in a wilderness and sea of indifference.  There are also a few others of importance and significance who will remember. Yet, your struggle is more meaningful than that of others to whom much is given...but should much not be expected from ?
        I have many questions to ask you?  How intense was the struggle to live..how much fear did you experience? Did you see the other side when you drowned?  Did someone tell you it was not your time? Did someone tell your spirit to return to your body?  How much did you fight?  How much do you remember?  What went through your mind?  Did you see the white light?  Was this side better than that side?  Did you know you would be cared for on this side?  Did you know the intensity your fight would demand of you?  Did you know and believe that  your parents would become warriors for you?  Did you know that your friends and relatives would soon leave?  Did you know that people would be fearful to visit you and to care for you...did you know in that 25 minutes what life would be like and why did you choose this life?  What do you feel about people who have abandoned you, who opposed you in your fight for justice?  Did you forgive them or is that forgiveness for them to find for themselves?  Is there any emotion which evaded your consciousness?  What prompts you to continue the fight on a daily basis?  Someday we will have this conversation...someday I will know and someday I will no longer have to wonder.  And yes, if there is a God, He will need to beg forgiveness from both of us...he was asleep, he was indifferent, he was absent...

       And so we continue, for many years ...as long as life sustains us.  We will continue with care and love to sustain your life.  We will continue with all the therapies and infusions of energy because they support life.  We will appreciate the efforts and energies of those who sustain the flow of that energy.  We will always continue for no reason other than these efforts are WORTHY.  There is no higher tribute to life than to live a worthy life.  To do this because you are my son, because there might be a god and a heaven, because we are linked, debases the reality that we do what we so simply because it is good, it is worthy and that is that sole nature of existence...to do good and live a worthy life.

dad

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the other to an abstraction. Elie Weisel, 1999

*“If there is a God, He will have to beg my forgiveness.” — A phrase that was carved on the walls of a concentration camp cell during WWII by a Jewish prisoner (Mauthausen camp).

Chronic Sorrow: Creating Ceremony for Healing

  
          "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live." (Chronic Sorrow, Roos) This sentence   from my last post on "remembering" echoed in my consciousness.  There are no rituals for chronic sorrow...no baptisms, no funerals, no goodbyes, no parties...Nothing to help the healing and thus sorrow gains the status of "chronic".  That is, unless you create a ritual...personal to each situation.  The following is a brief excerpt from  Sharon's book "Ceramic to Clay" which describes our ritual and shares pictures from the ceremony.  The event occurred in the Summer of 2001, three years after the accident.

How do you move beyond a catastrophic event? Time, everyone says. I was not satisfied with that response. I had an intuitive feeling that we needed to go back to the river. Three years had passed since Adam's near-drowning. He was now 15 years old. Adam was attending my husband’s school; this was the only way I could assure his safety. He was severely brain-injured, tube-fed, in a wheelchair. He was placed in a program for children with severe special needs, and he had Jody, a wonderfully compassionate one-to-one aide who acted like a second mother. Adam needed serious, loving, care-taking. Our daughter, Aimee, now 17, was completing her junior year in high school. I had returned to my job as a high school counselor. 

With help and guidance from friends, we planned a ceremony at the site of the accident. I was prepared for an emotional day, but I could never have predicted the impact of that day on my daughter. 

We began by offering tobacco and honey to the river;
to demonstrate that we knew the river meant no harm!

Aimee sat with us in our living room the morning before the ceremony. Aimee's life as she knew it had come to a screeching halt after her brother's accident. He was severely brain-injured and needed 24-hour care. She handled this with a mixture of anger, disappointment, frustration, and worry. Aimee had held on to her own life with incredible determination; her life was not going to change. She wanted her parents available, our finances solid, and, more than anything, she did not want to feel different from her friends. Aimee consistently challenged the premise that our life could never be the same again.

Our dear friends Terri and Jenny joined us for a quiet prayerful moment before we departed for the river. Terri had created the ceremony and would be facilitating the whole process. We were meeting a large gathering of friends, a few family members, therapists (old and new), and some staff members from the camp. The two counselors who had been supervising the boys the day of the incident had agreed to join us. 

To Aimee, our bright, beautiful, tenacious daughter, almost everything and everyone we had invited into our lives since that day appeared bizarre: the therapies, the alternative medicines, the spiritual practices. 

“Can't you just be normal? Can't you act like you used to? Why do you keep bringing strange people into our life? Isn't there any other way to do this?” 

I tried to understand her feelings. Prior to this life-changing event, my husband and I had not been aware or open to these healing ways. Aimee's continual resistance troubled me immensely. I did not want to lose our daughter while we worked so hard to save our son. 

Aimee invited two friends to join her for the river event. She refused to drive with us. She had chosen friends who might not judge whatever happened at the river that day. In other words, she felt safe with them. 

We arrived at the home of one of Adam's therapists who coincidentally lived very close to the site of the accident. People gathered slowly in front of the house, each one taking a moment to greet our family. Eventually, we formed a huge circle to begin the first part of the planned ceremony. Aimee held back, probably wondering what kind of religion we had converted to—the blessings to the four directions, the prayers, and the burning of sage. I concentrated on the ceremony, pleading for some sense of peace in our life. 

The group proceeded toward the river, singing a song written just for our celebration and gifted to us. 

River, touch our lives today. 

River, touch our lives today. 

Touch the anger and the fears, the guilt and the tears. 

River, touch our lives today. 

River, take them all away. 

River, take them all away. 

Take the anger and the fears, the guilt and the tears. 

River, take them all away. 

River, bring us love today. 

River, bring us love today. 

Bring the healing and the balm, the peace and the calm. 

River, bring us love today. 

Aimee ran to the river, impatient with the procession, not willing to sing. She stumbled down the steep and rocky slope. We had never wanted her to face the scene of the accident alone. It had taken me three years to visit this place, and I had been accompanied by a therapist. Facing the scene, visualizing the accident, had been an overwhelming emotional experience for me. Aimee had no idea what she was about to experience. With the exception of the initial days and weeks following Adam's accident, she had never allowed herself to feel. If she felt sad, bad, or anxious, she could not function, and then she would not feel normal, a condition she would find intolerable. She therefore avoided feeling. Somehow, her stubborn, adolescent mentality worked this out for her. This day, however, would be different. 

When we reached the path that would lead us to the site, we were initially preoccupied with Adam. He had been in his wheelchair during the procession, but now he needed to be carried down the rocky, steep hill and held by the river for the second part of the ceremony. We had baskets of flower petals, each basket symbolizing a different emotion—anger, fear, guilt, and sadness. Phil and I awkwardly held Adam, his rigid body not easily conforming to sitting in front of us close to the shore and not far from the rock that had entrapped his foot nearly three years ago. I held on tight and watched as all of the participants walked in front of us, gathered petals from the four baskets, and offered them to the river with a blessing. 

After some time had passed, I began to search for my daughter. I found her standing away from the group, sobbing intensely. I left Adam with my husband and gathered her into my arms. 

“Mom, I hate this; I just want to leave. All of these people are weird. This whole day has been awful. I don't want to do this.” 

A bouquet of flowers had been set aside for our family, the same type of flowers used in the ceremonial baskets. I gathered them, took Aimee by the hand and brought her to the river's edge, and said through my tears, “This is how you can make peace with the river, the accident, and the huge changes in your life. This is what you can do because you miss your brother. Take these flowers—your anger, your fear, your guilt, and your sadness—and offer them to the river. The river never meant us harm. The river held your brother and brought him back to us.” 

With my arms around her, I watched as Aimee gently tossed the flowers, one by one, into the rushing waters. For one moment, one beautiful moment, Aimee joined us, no resistance. She allowed herself to participate in not only her brother's healing but also her own.

And so, ceremony is created for healing chronic sorrow...and must be re-created over again (still working on this).  To conclude with the amazing...after trying for several years to sell our house in Greenfield, we learned upon re-visiting the site of the river and the ceremony on the 9th anniversary date of accident, that the house sold.  Our broker called us on the afternoon of July 24, 2007...at the river with the news.  So, the Universe does care for its own.
.

Moving from Apology to Forgiveness to Closure ... It Can Happen!

     July 24, 1998 to July 24, 2012...the fourteenth anniversary of Adam's near drowning and we acknowledge this day each year as a re-birth, a time to reflect.  This year, it is important to  remind ourselves  of the power of apology and forgiveness.  The previous blog of a few days ago described the details of the accident and the silence and indifference of the college and the State of Massachusetts.  This caused obvious pain which could not simply dissolve into the netherworld of forgiveness ..."turning the other cheek" is the worst biblical adage.
    I read a book, many years into this process:  On Apology, by Dr. Aaron Lazare.

"One of the most profound interactions that can occur between people, apologies have the power to heal humiliations, free the mind from deep-seated guilt, remove the desire for vengeance, and ultimately restore broken relationships. With On Apology, Aaron Lazare offers an eye-opening analysis of this vital interaction, illuminating an often hidden corner of the human heart.
He discusses the importance of shame, guilt, and humiliation, the initial reluctance to apologize, the simplicity of the act of apologizing, the spontaneous generosity and forgiveness on the part of the offended, the transfer of power and respect between two parties, and much more. Readers will not only find a wealth of insight that they can apply to their own lives, but also a deeper understanding of national and international conflicts and how we might resolve them. 
The act of apologizing is quite simply immensely fulfilling. On Apology opens a window onto this common occurrence to reveal the feelings and actions at the heart of this profound interaction." (Amazon.com book description)


   I bought several copies, passing one on to the college president.  After meeting with him, he agreed to mediate and dialogue about my need for apology so that closure could occur.  We worked regularly, the president, Sharon and I, and our mediator to achieve what all of us initially believed was unattainable.  Six months of work, commitment, tears and brutal honesty.  Not easy...many times either side neared walking away, but no one ever did. There was apology, there was forgiveness and there was genuine closure.  I have never experienced the depth of honesty and dialogue which evolved in the process and probably never will again in this life.  The following is an apt description in the news media.

DIANE BRONCACCIO Recorder Staff *1/12/2008

GREENFIELD -- Almost a decade after young Adam

Dzialo of Greenfield was severely injured in a river

accident during a camp program run by Greenfield

Community College, the family got something that was

important to them: an apology.

At an all-school meeting in GCC's Sloan Theater, about 100 college
officials, staff and faculty members met with Adam, Sharon and Philip
Dzialo to express compassion and wish the Dzialos well as they leave
Franklin County, their home for 30 years, and move to Falmouth, on Cape
Cod. "By offering this apology, we hope to facilitate healing, not only for
you but for our campus and community," GCC President Robert L. Pura
told the family. "I don't think anyone can fully understand your suffering.

The least that GCC can do is to continue to try and understand, as best we
can, the magnitude of your suffering and the ways in which we have been
responsible. Be assured that our remorse is deeply felt, our commitment to
learn from you and never forget is sincere. I pledge on behalf of the college
that GCC will never repeat the behaviors that contributed to your distress."

Adam Dzialo turns 22 on Monday, which will be his last day of school at
Mohawk Trail Regional School. A near-drowning accident during a GCC
summer camp program on the Deerfield River in July 1998 left the then 12-
year-old boy with brain damage and mobility loss. He remains in a
wheelchair and still spends several hours a day in extensive, home-based
rehabilitation therapy.

Philip Dzialo, the longtime principal of Mohawk Trail Regional School,
retired 1 years ago; Sharon Dzialo, who left her job as a counselor at the
Franklin County Technical School to care full-time for Adam during the
first years after the accident, returned to her job for a couple years before
retiring.

In 2004, the Dzialo family received a $936,000 settlement from the state
for Adam, who is likely to need medical care for many years to come.

But the settlement didn't bring the emotional closure that came with
Thursday's meeting, according to the Dzialos and to Pura.

What brought Pura and the Dzialos together this week was a book that
inspired Phil Dzialo, called "On Apology," by Aaron Lazare, the retired
chancellor of the University of Massachusetts Medical Center. Phil Dzialo
said the book "helped me see things and understand them better. It gave us
some tools to make the bridge (to the college)."

He e-mailed Pura, saying the book had given him more clarity about what
the Dzialo family needed for closure on the tragic accident. He asked Pura
to read the book and to talk to him.

Pura read the book, which talks about what constitutes a genuine apology
and how the process can change personal and even international strife.

Then the Dzialos and Pura met in several mediation sessions with David
Singer, beginning in April, to resolve remaining conflicts.

Thursday's meeting between the family and the college community resulted
in more openness, trust and even enough ease for the groups to be able to
laugh together and joke, said Pura. "Many described yesterday's event as a
dark cloud lifting," he said. "We all want that for Aimee (Adam's sister),
Adam, Sharon and Phil."

"There were a great many tears," he said of the meeting. "There were also
tears of joy, in seeing this incredibly strong and courageous family."
"As a family, we had wanted this and needed this for a long time," said
Sharon Dzialo.

In his apology, Pura expressed regret for several mishandled steps
following the river accident. They included the college's failure to contact
the Dzialos right after the accident; instead, the Dzialos didn't know Adam
was injured until contacted several hours later by the hospital. He also
apologized for the lack of contact and support from the college during the
first hours that the Dzialos waited at the hospital, not knowing whether
Adam would survive. The items also included the college's failure to have
written a letter of apology earlier to the family. Most of the incidents Pura
cited occurred before Pura was hired by GCC in 2000.

Phil and Sharon Dzialo, in accepting the apology, acknowledged "there
were many good people" at GCC who "expressed a deep compassion for
our journey. We are aware that, in an atmosphere of litigation, it is difficult
for anyone to express their feelings and to act upon them."

Singer said conflict-resolution "is not the norm" for most people in a
situation like this. "When conflict arises, fear sets in and people are
distrustful. That tends to happen immediately. Sometimes, people stay that
way."

The Dzialos and Pura praised the mediation process that helped them. "I
think the important thing is, for the community to know, that the resolution
of conflict is very possible and very real," said Phil Dzialo. "I hope the
process we went through publicly will help serve as a model of hope for
other people."

As the Dzialos prepare to move to Cape Cod, Sharon Dzialo said, "we
hope to invite new people into our lives." Phil Dzialo, who works with the
ARC of Franklin and Hampshire Counties, says he intends to remain active
as an advocate of the services that the ARC provides for people with
cognitive disabilities.

Adam is also excited about the prospect of moving on, according to his
mother. "I tell him we're going on vacation for the rest of our lives," she
said.

Copyright, 2008, Greenfield Recorder

Forgiveness

   That story led to an editorial by the newspaper which I share:

EDITORIAL *1/17/2008 Time and healing What are

the ingredients necessary to foster healing? Patience, a

healthy environment and a desire to restore one's

health are part of the package.

And, of course, time. Recovery and healing are often governed by time. It's
part of human nature to want healing to happen quickly. After all, accidents
or tragic events seem to happen in a blink of an eye, why can't recovery
move just as quickly?

Healing, though, sets its own pace.

 
Time and the other ingredients were finally aligned in the relationship
between the Dzialo family and Greenfield Community College, to create an
opportunity to bring healing and a sense of peace that has been elusive for
almost 10 years.

There's no person, then or now, who wouldn't want to turn the clock back
to prevent the circumstances and events from unfolding as they did on the
Deerfield River in July 1998, where a 12-year-old boy named Adam
Dzialo nearly drowned while participating in a outdoor adventures day
camp sponsored by GCC.

The accident left the young Dzialo with brain injuries and mobility loss that
are a part of his daily life and which require continued therapy and medical
care.

It changed forever the course of his life and that of his family.

And it led to bitterness from some in Adam's family toward the college
over the way the accident was handled. Now at least that bitterness has
been resolved.

As GCC President Robert L. Pura said during the meeting between the
college community and the Dzialo family, "The least that GCC can do is to
continue to try and understand, as best we can, the magnitude of your
suffering and the ways in which we have been responsible. I pledge on
behalf of the college that GCC will never repeat the behaviors that
contributed to your distress."

For Adam Dzialo's parents clearly there was a desire to bring about
closure to promote greater healing. Making that happen, though required
crossing the divide that had been created with the school.

The methods to do so, said Philip Dzialo, Adam's father, were found after
reading the book, "On Apology" by Aaron Lazare. Dzialo reached out to
Pura and GCC and with more time and the help of mediation, they were
able to find a way to accomplish what was necessary -- an appropriate
apology and the acceptance of that apology.

Paul Boese, a Dutch physician and botanist who lived from 1668-1738, is
credited with writing, "Forgiveness does not change the past, but it does
enlarge the future."

By reaching this point, the Dzialo family and GCC can move forward and
create, we hope, brighter futures.

It has taken time, but this healing can now take place.

Copyright, 2008, The Recorder, Greenfield, MA

       So, we celebrate the 14th year!  Healing, Apology, Forgiveness and Closure are distinct human possibilities, but not with mutual work, outside assistance, honesty, sincerity and love.  It can happen, but not often...it should happen, often!  This is Adam's lesson and one of his contributions to community!

A Prelude to Apology and Forgiveness...

    July 24 will mark 14 years since the near-drowning accident of our son, Adam.  During a summer camp activity, he was trapped under-water for 25 minutes and this blog has chronicled his life, recovery and our journey as a family.  One monumental occasion was an apology, an act of forgiveness and closure to many years of anger and pain.  Apology and forgiveness was a 10 year process and will be described in my next post on July 24, 2012.
    Many readers don't really know the story which ensued from the events of July 24, 1998.  One of the best articles was in the Valley Advocate; devoid of sensationalism but one which captured fact and emotion.  It lays the essential groundwork which culminated many years later (2008) in apology, forgiveness and closure.  All are painful but ecstatic possibilities in the human dimension.  And so the article"  "Who's Afraid of Adam Dzialo?"

The Advocate, September 6, 2001

Valley Advocate (Easthampton, MA)
September 6, 2001

This boy nearly lost his life at Greenfield Community College's summer camp. Now the state college is fighting him in court.
Who's Afraid of Adam Dzialo?
   Joann Dilorenzo

Adam Dzialo's mother says her son wants to return to the river. He wants to go back over the railroad tracks and down the steep embankment to the bend where the smooth current suddenly roils, where the cold dark water turns white and wild, where Dzialo, as a wiry, athletic, brave boy of 12 nearly died in a botched and ill-conceived whitewater drill at a Greenfield Community College summer adventure camp three years ago.

   Sharon Dzialo cannot know with complete certainty what Adam wants, but these past three years she's learned to intimate her son's needs, to understand his coarse utterances, various facial expressions and body language. Since the accident at GCC's Team Adventure camp, Adam Dzialo cannot speak. He can no longer walk, or even sit, without support.

Because on that day on the Deerfield River during an exercise on whitewater safety, the sinewy 80-pound, five-foot-two-inch tall boy momentarily lost his courage. As the current surged, Adam struggled frantically to find his footing. His high-top sneaker got lodged under a boulder. The adult lifejacket issued by the GCC camp was useless: It bobbed about on the surface as Adam's body was pinned under by the force of the current. After 20 to 30 minutes of oxygen deprivation Adam suffered severe brain damage.

   Adam's parents, Phil and Sharon Dzialo, went bankrupt covering their son's medical bills, which top $300,000. But the camp's sponsor, Greenfield Community College, has emerged from the tragedy relatively untouched. The college denies responsibility for the accident, even though the school's accrediting agency had warned -- one month before the accident -- that the Team Adventure camp was inadequately staffed. Even though the camp was not licensed, in violation of state law. Even though the counselors broke the camp's own supervision requirements, leaving one counselor in charge of 12 boys on the river when there should have been two.

This summer the Dzialo family filed a civil rights suit in state court to recoup their mounting financial losses. The Dzialos say their ultimate goal is to get the community college to take responsibility for the devastating accident that happened on its watch, and to engage GCC in Adam's journey to what the family hopes will be a full recovery. The Dzialos say they want to talk, to begin anew a dialogue about the accident.

   But GCC doesn't trust the Dzialos. When the family speaks, sometimes in e-mails sent to the state college's board of trustees, or during the public comment period at GCC meetings, occasionally through the local press, what college officials hear is the voice of their lawyer warning that anything they say can be used against them in trial.

And so, as Adam's family labors to teach their 15-year-old son to communicate again, officials at the local community college remain largely mute. Some of the officials are former friends of the Dzialos, or acquaintances. Adam played baseball and hockey with a few of their sons. Sharon Dzialo, a guidance counselor for 20 years at Franklin County Technical High School, has worked with some of their children. The Dzialos feel betrayed.

"The most bizarre moment for me, I decided, was in January when I decided I would finally address the board of trustees," Sharon Dzialo says from her living room as Adam sits nearby, watching the Disney Channel's teeny bopper action series "Jett Jackson" on TV.

   Sharon was looking for the meeting room, but got lost. Board President Becky Caplice, whose son used to be a close friend of Adam's and a teammate, pulled up and offered Sharon a ride. They chatted on the way to the meeting. Sharon says: "So we walked in together and she went up to her seat at the trustees' table and I sat down in the audience and she said, 'Now we're going to hear from Sharon Dzialo.' I made my statement. I was very emotional. I sat down, and there was no response. Silence."

Adam Dzialo's whitewater accident was the result not of one dramatic act of nature -- a murderous current or some hidden vortex -- but, rather, of the culmination of a series of mishaps, glitches and incompetent acts: from a state license the college's Team Adventure camp never obtained to the pair of waterlogged, laced-up high-top sneakers Adam wore in the river.

   Here's what happened during Adam's last adventure at summer camp. Just after lunchtime on July 24, 1998, Adam Dzialo and eleven other Team Adventure campers were taken to the Deerfield River by their two camp counselors to conduct a whitewater river rescue exercise. The whitewater rescue was to be the final challenge on the final day of the week-long outdoor skills camp.

  "The brochure identified kayaking and boating as possible activities," Phil Dzialo says. "But there was nothing, absolutely nothing in it to suggest that campers would be free-floating down whitewater with nothing but life vests."

At the edge of the Deerfield River, the counselor split the boys into two groups, "rescuers and rescuees." Each camper was told to sit in the water in his lifejacket and, from that position, wade out to the middle of the river. The rescuee was supposed to float on his back about 200 yards downriver, where the rescuers were stationed with rope bags used for river rescues. The rescuers were to throw the bags to the boys floating downstream and pull them to safety.

While the boys were receiving their rudimentary instructions on the riverbank, the Deerfield river was quietly rising. Camp counselors had checked the water levels at 9 a.m., according to a GCC report obtained by Phil Dzialo. However, the local hydropower company had released a surge of water from the dam upstream at 10 a.m., causing the river to swell.

   The boys were getting ready for the drill just as the Deerfield was nearing its highest level of the day. The boys were eyeing the rocks and boulders they'd learned to use as reference points. But it was getting harder to spot them, because the river was rising.

   Several of the boys were afraid to do the drill, according to a report by the Dzialo's private investigator, Robert F. Kerber, of New England Forensic Laboratories. The boy who was supposed to go before Adam declined. Adam volunteered to give it a try.

   "That's my son, the 12-year-old star hockey goalie with an ego the size of the Empire State Building," Phil Dzialo says.

Before Adam Dzialo entered the water, one of the counselors left the site to take two other boys to meet their parents. At this time, approximately 1:30 p.m., one counselor was overseeing a dozen adolescent boys on the river, which far exceeded the camp's own counselor-camper ratio guidelines.

   Adam's camp mates, who stood with the one remaining counselor downstream, watched Adam wade into the Deerfield and waited to do their heroic part. Within seconds, the boys on shore saw Adam flailing, his head bobbing up and down before he was pulled under. One boy quoted in Kerber's report said he saw two rafts go over Adam. When the counselor standing downstream realized what was happening, she sent some boys up Zoar Road to find a telephone to call 911. The camp counselor had no means of emergency communication on hand, nor any sophisticated rescue equipment. All they had were two rope bags.

   Under the direction of a Crab Apple Whitewater rafting guide, a raft was suspended between two ropes strung across the river and lowered down to where Adam's life vest was bobbing in the water. Adam's head was submerged. On the first try, rescuers tried to pull Adam up by his life jacket, but the jacket slipped off. Finally, they freed Adam.

The Charlemont Ambulance Service incident report stated that Adam had been trapped in about three feet of water for approximately 30 minutes. He had no vital signs. At 2:14 p.m. the ambulance rushed Adam to a heliport to be airlifted to Baystate Medical Center.

    "We were working minutes away, five minutes or so, but they never called us," Dzialo says. "The first news we heard was from the staff at the Baystate ER. They said, 'get down here right away and don't come alone.'"

Had GCC abided by long-established commonwealth laws regarding camp regulations, licensing and safety, Adam Dzialo would never have been instructed to float down the wild, rising rapids on the Deerfield River that summer afternoon in 1998. State camping regulations state clearly that a camper may not participate in whitewater exercises unless they have been certified by the Red Cross as a "Level 4" swimmer. Adam was a decent swimmer, Phil Dzialo says, but he never took an advanced course and was not certified at any Red Cross level.

In Massachusetts, standard child care is closely regulated, but summer day care -- camps -- are overseen by the Division of Community Sanitation, a tiny three-person agency within the state Department of Public Health. While the division sets sanitation and safety standards for all camps operating within the commonwealth, it relies on local health boards to license and investigate the camps. Four days after Adam's accident Kate Douglas, the director of Greenfield Community College's Outdoor Leadership Program, received a cease and desist order from Greenfield Health Director Lisa Hebert. Hebert had read about Adam's accident in the local papers. That's when she learned GCC was operating a summer camp without a license.

   Hebert's order was moot. GCC's Team Adventure camp ended for the year on the Friday Adam nearly drowned. It has not reopened.

   These are some of the simple, painful facts the family lives with every day and which the college will be expected to respond to when Adam Dzialo's civil rights case finally begins in Franklin Superior Court.

The family had, at first, filed their lawsuit against GCC in federal court on Oct. 23, 2000. This past summer the Dzialos changed venues, transferring their suit to the state Superior Court. It's difficult to beat the state in federal court because the 11th Amendment to the U.S. Constitution protects states from federal suits. The Dzialos faced the risk that they would have gone through a lengthy trial only to be reversed on a technical appeal, according to Sam Perkins, the Dzialos' Boston-based lawyer.

   At the heart of the Dzialos' suit is their contention that the college infringed upon Adam's civil rights by placing him in a dangerous situation and denying him both adequate protection and the means to protect himself, Perkins says.

"This is not just simple negligence," Perkins says.

Hell, No, He Won't Go.....

     The decision to place a child or an adult of any age in an institution, residential setting  or a group home, the latter which is a contemporary euphemism for an institution, is never lightly embarked upon.  I remain quite amazed and deeply concerned about the numbers of people, both young and old, placed in residential settings of varying types and incarnations.  Part of me acknowledges that some parents and guardians earnestly believe that it is the best interest of the child to receive care in such a setting.  However, I believe that these decisions are often made so a parent(s) can have a life beyond the role of caretaker. Decisions are made for the sake of preserving a marriage, decisions are made so that other siblings in the family are not short changed, and decisions are made because resilience fades and supports erode.  All logical, all meaningfully deliberated, all made with a great ambivalence and with a healthy dose of guilt.  I have yet to read or hear that the decision is purely in the best interest of the disabled child or person.  Away from a loving home is better in a depersonalized institution or home?  I refer not to disabled people who are in the process of learning self-sufficiency; I refer to the fundamentally, severely disabled whose needs and desires can only known by parents.

       I have nothing but disdain for fathers who leave the family to fend for themselves because this life is stressful and hard.  I have  little but  condemnation for fathers who disappear and do not financially or emotionally support their disabled children.  The fires of hell burn especially hot for these dudes, and it is usually the man who fails to recognize and embrace his paternal bond.  Mothers rarely abnegate their love-bond.  This is certainly an unenlightened social darwinism.

       So given the shallow reasons to move severely disabled children and adults into institutions, residential placements and group homes, what lives  do these precious vessels of life-force face.  Physical and sexual abuse is common in these placements, neglect is more common as patients lie in urine and feces, miss needed medications or feedings.  There are so many stories of caretakers ignoring their charges, stealing what little the disabled have, compromising medication and feeding schedules and on.  Employees of these places are more often than not poorly educated and sinfully underpaid.  The result is that people die; our kids die.  It is well established that all people who are deprived of physical touch and contact die much sooner.  Yet these decisions serve the purpose of those who give their kids and elderly away.  It is an early death sentence in many cases.  Stories of abuse in institutions and homes are legion, daily in media by the hundreds and I  will spare you the horror of the many links I have collected.  It just ain't right!

       I am dismayed at parents who want to be something more than the parent of a severely disabled child...what could be a higher giving and measure of heroism?  What could be more consonant with highest calling of parenthood?  Does ethics and morality dictate these decisions?  Does maternal or paternal obligation dictate these decisions?  Or does self trump the need for a  dignified life of the disabled?  Do institutions devalue or enhance the value of disabled people?  Our society justifies poor decisions, condones a lack of resilience, and allows people to feel justified about dumping kids and adults on the state...a quite uncaring, unaccountable and anonymous entity.  Never is there a discussion of the ethics or morality of institutionalization.  "Out of sight, out of mind" is not a hack expression, it is a statement about reality.  Visiting your kid on a weekend or taking him or her home for a day is symptomatic of this hack expression.

       I would guess that one could criticize my thoughts and musings under the guise that I am very judgemental...I am.  I believe that institutions, residential placements and group homes should be abolished and that monies saved should be used to help parents keep their severely disabled charges in the home.  The cost of an institutional placement in Massachusetts is $250.000.00.  Could we not keep the same person home with mom and dad for a small fraction of the price?  Isn't home the only place that true love exists?  Is it not the singular place where the disabled are loved, cared for with utmost dignity and continue to live and thrive.....?
       And when parents are too old and frail?  Can we make a leap and assume that extended family and siblings inherit a moral and ethical duty to assume the same care?  Or are their lives too important?  Is it not the duty and the obligation of society and family to ensure care for the most needy?  Is that not the criteria by which our society and we ourselves will be judged?  And judgement will occur in future time as consciousness evolves to higher planes?  Our children are our children, not the children of institutions.  Yes, I realize the insufficiency of social supports; I realize the indifference of family and friends in assisting us in the care of our disabled family members; I realize the rationalizations on why those closest choose to be the farthest.  Yet, I realize that group homes and institutions, no matter how wonderfully construed, are grossly inadequate in providing the love which is the lifeblood of the disabled. And no matter how cognitively compromised the person, they feel the love and dignity emanating  from loving care....without those elements there is only death.

     Yes, there are some laudable placements in the world, i.e. L'Arche...an intentional community of residents, volunteers and developmental disabled.  But are there severely disabled, medically fragile members in this community?...probably not.  Nursing home, state institutions, yes...death sentences.  Home is where the severely compromised need to live with love and dignity; home is where the hurting elderly need to live with love and dignity; home with family is where the severely mentally ill need to live, with love and dignity.  Responsibility is uncomplicated: family and extended family is home and society has a duty to provide the supports to allow for this obligation to be met.  There is no greater honor than to care for our sons and daughters and mothers and fathers, for our nieces and nephews, our brothers and sisters.  This is the apex of actualization and one does not need a god or a religion to provide us the reward nor the incentive...duty, obligation and love are required.
      So, my judgmental self says close all the group homes, the institutions and residentials....allow the family to care for their own (with complete financial, physical and emotional supports) and counsel them to understand that providing care is the highest reward,  the utmost self-realization and the deepest meaning.

       

13 Years and Remembering....July 24, 1998

       Adam nearly drowned (25 minutes under water) on July 24, 1998...13 years ago.  We honor his new birth every year at this time and recommit ourselves to his continued recovery.  The following is Chapter 1 from Sharon's book "Ceramic to Clay" which was published last October.  

THE FIRST DAY

     I awoke to a beautiful summer morning.  I had an eight-week break from my job as a high school counselor.  A long to-do list awaited me, most of the activities related to my younger child, my son, Adam.  On Sunday, he was to leave for a hockey camp at Providence College in Rhode Island.  A large duffle bag was lying open in his bedroom, overflowing with clothes, supplies, hockey equipment, and a few surprises.  This would be his first week-long experience away from home.  He was excited and nervous, and I was an anxious mother.  Sleepovers were difficult for him.  I half anticipated checking into a hotel near Providence College so he would feel safer.  I shouldn’t have been so worried, because he was attending this camp with his good friend, Stephen.  Both had been playing hockey for at least five years.  Adam had chosen the position of goalie and demonstrated great skills.  Just that year, we had customized a helmet for him with the words “no fear” and a tiger’s roaring mouth.  

     I planned to pick him up later that day.  He had been attending an adventure camp at the local community college and was just returning from an overnight camping trip.  After the pick-up, we were going to head directly to a baseball tournament.  He was playing for an all-star team, and though hockey was his favorite sport, baseball was a close second.

     I was filled with thoughts of my boy this day, missing him and wondering how tired and cranky he would be after this adventure and more adventures to come.  Adam liked to keep busy, so this kind of schedule was nothing unusual for him.

     The day was proceeding according to schedule.  My 14-year-old daughter, Aimee, was working at the YMCA.  She called to say that she needed a ride home.  I left as my husband, Philip, arrived home from work.  He then received the phone call that all parents dread with every fiber of their being.  Adam was at Baystate Trauma Center.  He had been in a swimming accident, and his condition was critical.  Phil was told not to come alone.  He got in the car and searched for me as I was driving Aimee home.  We delivered Aimee to a friend's house and headed to the hospital.

     I drove.  I don't remember what we did with the other car.  I remember thinking that I was in better shape than Phil.  He just kept repeating the words, “Don't come alone. Don’t come alone.”  I focused on driving and was distracted by only a sickening feeling in the pit of my stomach.  I wasn't sure that I could make it to the hospital without vomiting.

     Minutes before we arrived at the hospital and I could actually see it directly in front of us, I experienced a strange feeling. I felt “flooded with calm.”  I looked at Phil and said, “Adam is still with us.  I would know if he was not. . .”  I could not have been more certain of anything. 

     We parked the car directly in front of the emergency room, where a social worker was waiting for us.  She explained the seriousness of Adam's condition and the circumstances of the accident.  No one from the camp was there.    The doctors at the trauma center were attempting to stabilize him.  It was critical; he had been underwater for a very long time.

     The social worker then left us alone in a closed room—no one to talk with, no one to question.  Phil and I just kept looking at each other, repeating what we knew.  We could not make any sense out of this incredibly frightening turn of events.  I remember feeling intense cold.  I could not warm myself.  I kept asking for blankets, wrapping myself as I paced back and forth.

     Finally, the social worker returned.  It felt like many hours had passed.  She informed us that Adam had been stabilized enough to move him to the Pediatric Intensive Care Unit.  He was on a ventilator and had been placed in a medically induced coma.  We didn't and couldn't understand any of this.  Adam was going to his baseball tournament; he would be late.  We were invited to accompany Adam in the elevator with his doctors.

     My son, my Adam, lay on a stretcher.  His eyes were closed, and he looked puffy and gray.  He was receiving oxygen, and two doctors were monitoring his transport.  One doctor was very kind.  He spoke compassionately and encouraged us to touch and kiss Adam.  I was screaming silently, No, no, this is not my son.  My son is not on this stretcher, not in a coma.  I need to leave now to pick him up at the community college.  He's going to be late for his game.  This child on the stretcher was Adam, but he wasn't Adam.  He bore little resemblance to the wiry, hyper, athletic 12-year-old we had said good-bye to yesterday morning.  He felt untouchable—too cold, too gray, too far away. He was freezing; I was freezing.

     Phil leaned against the wall of the elevator and crumpled over, weeping.  Those tears poured out for days.  He would look at me and say, “I can't stop crying. . .”  He felt totally out of control; he was inconsolable.  I had never before witnessed this depth of emotion in my husband. 

     We settled in with Adam in a private room in the ICU.  Our watch began; we were afraid to look away from the monitors that registered continued signs of life in this pale, silent son.  Machines were holding him steady.  I heard the words, “The next seventy-two hours are the most critical.”  The doctors were most concerned about fluid building up in his brain, the “secondary assault” so common in brain injuries.  Several CAT scans were done.  Adam missed that second assault.  What did all this mean? 

     Phil, Aimee, and I settled into a huge chair at the foot of Adam's bed.  Aimee was to begin high school in a few months. None of this made sense to her.  She did not want her brother to die, and she questioned us constantly.  We could not assure her with answers.  We held each other, watched the monitors, watched Adam breathe, and waited.  I remember sitting there, closing my eyes, and reaching deep inside to search again and again for that “flooding of calm.”  Each and every time, I found it.  Though I shed many tears and I felt intense anxiety, I never spiraled down into the deepest place of grief and unimaginable fear.  As long as I could find this “calm,” I believed that Adam was with us and would stay with us.  I did not, however, have any idea what to expect from his brain injury.  When he opened his eyes, what would we see? What would he see?

Adam at a public hearing regarding the accident
four months after the near-drowning

Near-Drowning....Then and Now

A few mornings ago, while watching the news and getting Adam ready for his day...ABR, ABR and ABR...and a walk, reading and the movies, there was an interview with a Colorado family. Their two year old son was involved in a near-drowning in July. He was underwater for twenty minutes, given CPR and flown to a hospital where his body was kept cool using ice while in a medically induced coma. Except for the age of the child, this story was similar to Adam's. However,when Adam was life-flighted to a trauma center (twelve years earlier), they warmed his body and the outcome was that Adam was severely brain injured. Listening to the story with a lump in our throats, we are happy for the fully recovered little boy and sad for our young man. Doctors could give the family little assurance that the cooling of the body would work. Obviously, this procedure should be standard in cases of near-drowning. Wishing that "now" was "then", only takes us away from the present.

People have many misconceptions about the word "near-drowning." The severity of the injury depends upon the amount of time that the brain was deprived of oxygen, the age of the victim and his/her physical condition, temperature of the water, etc. Near-drowning does not mean that the person did not drown and that they are fine. Since Adam's accident, we have seen few near-drowning survivors, though we have seen many brain-injured children and young adults. People often ask if Adam has cerebral palsy because he has contractures at his elbows, wrists, ankles and knees. Basically, it comes down to a lack of oxygen to the brain and the part of the brain that is effected ( in Adam's case, the basal ganglia), This lack of oxygen often results in a collapse of the musculoskeletal system. We have discovered that the therapy ABR (Advanced Biomechanical Rehabilitation) addresses this specific issue. The inventor, Leonid Blyum, refers to ABR as the back door to addressing the structural effects of a brain injury...volume, mobility and then function.

For The Long Haul

One day we were a highly functioning, tightly knit family - two professional parents with two beautiful and active children. Then, a significant life-altering event occurs, the near-drowning of our youngest child, Adam Dzialo. We found ourselves regrouping around a severely brain-injured child. We have been involved in this dance for more than twelve years now. We know about the highs and the lows, the light and the darkness, the confusion and the wisdom. We also know that there are other families who have experienced similar challenges. Our old life, based on family, work and community connections has vanished and we have found it necessary to create a new life and community for Adam and ourselves.

By initiating this blog, we reach out to others who have experienced similar realities and challenges. We choose to keep Adam at home with us, providing a rich and enlightening life for all of us. We are willing to share our story, our strategies and our good and bad days.

Some of our future blogs will include:

• understanding the reality of near-drowning events, possible and probable outcomes
• the concept of "extreme care giving"
• the financial realities of caring for the severely disabled in the home
• the world of therapeutic options, alternatives to western medical ideology
• confronting service systems "intended" to provide help and assistance
• perspective and balance in one's inner and outer life