A Broken Man Cannot Be Broken...a new book

Click here to purchase

     Some publications are memoirs, some are narratives, some are fiction.  It is rare that a book of poetry resonates with my soul.  To touch the deepest parts of my self, the poetry of Eric Fischer, probes the issues of very extreme caregiving, of life with a severely disabled son who lives with Ohtahara Syndrome, of introspective views of other very medically compromised children, of living a worthy life and of death, a topic we all avoid.  

      Eric Fischer, whom I consider a dear friend, lives in Israel with his son Segev.  Caring for Segev, who is a very severely disabled 16 year old, has shaped his life and his view of reality and of the potential of human existence, the sheer pure dignity of life in the world of disability.

      This book of poetry which spans nearly 20 years of writing and reflection probes darkness, doubt, living a worthy life and death.  There is an absence of the superficial and the overwhelming presence of the depths of human experience and understanding.

      For all people, for parents who care intensely for severely disabled and medically fragile children, for those who face the death of their children at any moment, for those who confront the passage of parents, for those who struggle with these battles alone...this book of poetry is a MUST read for you.  You will be able to see the world of disability from a purer perspective and understand the human spirit confronting the unimaginable.  You MUST read this book of poetry...and read it slowly, read it as a daily meditation in your life.  You will leave having learned and experienced.

     It is an honor to call Eric a friend.  It has been an honor to read his collection of poetry and meditate on each piece.  It is a honor to reread the collection.  Of course, the book lives and embodies spirit and any profits contribute to Segev's care.  Please buy a copy of the book using the above link.

      Eric also blogs at: iamabrokenmanyoucantbreakme.blogspot.com/...another place to visit and absorb a real story of living a worthy life.

Terror, Aloneness and My True Community

Adam, January 21, 2014

  

At the Falmouth Hospital ICU, alone with my love, my life purpose. Adam developed bronchial pneumonia quite suddenly. After admission, his chest was heaving so unnaturally, terror racked his face...every breathe is a struggle to live. He was in fear, I was in fear. Fear is a poor word, terror better describes the feeling. Terror is accompanied by tears, many tears, tears shed alone.

His infection compounded by his cellular memory of drowning is more than the human spirit should endure. But, he is a warrior, a fighter with his mother and father by his side every minute.  The pulmonologist placed him on a vent and intubated him to allow for healing and rest.  Waiting to grow a culture to determine the right antibiotic.  He's given five antibiotics and they need to reduce them.

Sharon and I live in his room, sleep in his room, not from worry, but so that he never feels aloneness...the greatest fear that anyone can experience.  He will be ok

My greatest desire is to be surrounded by physical presence of support so that I can be strong although weakness is to be accepted and overcome.  Family, except for my seven month pregnant loving daughter and her husband, have never offered to give us relief and sit with Adam  I have had the love of hundreds Facebook friends, all of who have severely disabled kids sending healing energy and light.  I am wrapped in this love of my community.  A few neighbors brought food and compassion...without asking "what can I do?"...they just did because it was right.

My belief is never to ask terrified, exhausted parents "what can I do?"  Just do it.  Come here, family, and wrap us in the tenderness of your strength.  And, a phone call or an excuse, is woefully insufficient...just do what is good and worthy.  Come and wrap us with your love through your presence...show Adam your love in his time of terror and fight.  It requires time and courage, but all of our time is limited and courage springs from deep within...all of us want to live worthy lives, good lives...it is the meaning of life:  never allowing our disabled kids to feel fear, to feel alone but only to feel love which sustains life.  This is not a time for regret, but a time to learn to be the best we can.

Adam told his clairvoyant many years ago, at a time when we performed ritual to have him keep his spirit in his body, that "Love means being here, even when you don't have to..."; I spoke the same words at Aimee's wedding.  Be here!

To my Facebook community and many of you I have not met personally, I love you...you have taken time to express words of love, hope, presence, tenderness and with you I no longer feel alone.  We will survive and so will our warrior son....My joy, my daughter Aimee had offered to do anything...to take Ollie, who can be a pain in the ass; to sit overnight with Adam in ICU, despite she is a corporate tax manager in the midst of a busy season and seven months pregnant.  It take no skill to recognize true love.  She has learned that "Love means being here, even when you don't have to."  It such a simple formula to life a worthy life...it's all that is necessary to live a worthy life.

Sorry for rambling, but the brain simply rambles...

Because of indifference, one dies before one actually dies.

Elie Wiesel

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).

About Us, But Never, Ever With Us.....Re-kindling PTSD

   Parents with children who are severely disabled inevitably suffer from PTSD, especially parents whose child's disability occurred as a result of an accident.  Sociologist Olshansky and later Susan Roos described this phenomenon in depth as "chronic sorrow."  Adam drowned on July 24 1998 after being under water for 25 minutes during an absurdly orchestrated  summer camp activity.  He was eventually revived at a trauma center.  That was nearly 15 years ago.  The trauma which we experienced  has been dealt with in  many ways, purged through ceremony, therapy and medication.  We "should" have gotten over over it.  We "should"  never relive the horror of imagining a child struggling for life, helplessly, under water in darkness and  fear embedded at the most deep cellular level (physiological terror) .  We "should" have gotten past anger. Right?... honestly, there are some wounds that never heal.  One doesn't get over it because someone else declares "it's time...get over it."  Trauma is relived and then triggered by many events, over and over again.  As a family, we have worked through the many layers of trauma,  We do not walk through this life as "undetonated bombs.'  However, a recent  horrific and unacknowledged experience, found us in the dark throes of PTSD!
     

Robert Kauffman, Ph.D.

 the look of compassion and understanding?

.

        One "academic", Robert Kauffman. Ph.D.  (Rate Mt Teachers Link)  is, in our opinion, very responsible for our recent pain!  Kauffman recently published a college textbook, "Integrated Risk  Management for Leisure Services" in January of 2013.  He has a Ph.D. and is department chair in parks management and recreation at Frostburg State University, not exactly a stellar monument to academia. Frostburg State University's ranking in the 2013 edition of Best Colleges is Regional Universities (North), 124. (US News and World Report).........(and ranked "C" in academics at College Prowler)
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Amazon Best Sellers Rank: #2,883,638 in Books  (as of 7/10/13)
Amazon Best Sellers Rank: #2,922,124 in Books updated 7/13/13)

Well, Kauffman wrote this rather impoverished book with a multitude of references to my son's drowning.  He NEVER communicated in any way with us as he  was "writing" this text", never asked us to proof the text for accuracy, never asked if it was permissible to share Adam's story, never checked what effect it could have on us, never communicated post publication that he wrote about our son.  He never gave a second thought that resurrecting someones trauma was an issue.  We first found out about this debacle by googling Adam's name.  Well, trauma resurrected its ugly head, undifferentiated pervasive anxiety  blew over a calm spirit.  My question was "do you really care about Adam's and the family's true story?"  The book attempted to give advice to institutions to embrace the victim, yet the author blatantly denied the victim's pain and maintained a distant indifference.  Just like you would expect from an arrogant academician.  There was another co-author, Merry Lynn Moiseichik; however, she assured me in an e-mail that she did not have a role in selecting Adam's case nor writing about it.  Publishing the story of a disabled child, who can neither speak nor move, without his or his guardian's permission is classic abelism...outright simple.

        Sharon (my wife) reached out to him to explain the effects of his actions which he casually dismissed.  I confronted his actions and asked that he genuinely apologize for leaving us out of the entirety of the process resulting in re-opening of old scars.  He replied that I would apologize to him someday....the typical response of an obstinate academician.  Mediation has saved our sanity in the past, so I offered to pay all of his expenses to come here for a day, pay for a professional mediator, pay for it all....to close the wound and to have the man understand the effects of his actions or lack of actions on our lives...PTSD.  He never responded.  Our mediator, who worked through issues with us for months, even spoke with him by phone.  No response! It seems like the diametrical opposite posture of embracing the victim.  Use their kids story, never tell them, have them discover this apparent profiteering activity on line and essentially tell them to ......(fill in the blanks).
          In the last 15 years, several stories have been written about Adam's drowning at the hands of a summer camp.  Many journal articles have been written.  Countless newspaper articles were published and at least a half dozen news specials released on local and national television.  In every instance, the writers and producers communicated with us, received our permission, asked many questions and provided us a copy of the product.  Why?  Because they cared and were interested in the truth.  Kauffman NEVER communicated because he apparently didn't care about the effects of his words and then never cared when he was told that they opened wounds and scars which should have been left untouched.  Is there a clearer way to describe a closed heart?   To not even acknowledge a request for a fully paid mediation is a primary sign of arrogance and certainly a sign of a coward.
         Of course his text failed us at many levels, primarily it also failed Greenfield Community College, the sponsor of the summer camp.  He was adept at pointing out how the college failed (adept but not accurate) yet neglected to expound upon how the college and its president engaged in mediation, apology and closure.  Of course, he acknowledges none of this.  Piss on someone by failing to tell a full story and walk away.  He owes GCC a full and sincere apology and acknowledgement of their commitment to do that which  was morally and ethically right.  While Kauffman was legally in the right since Adam is a public figure, I would hardly use the words ethical or moral in describing his approach.  To tell the truth, the book wasn't even that good, not at a $67.00 price tag....talk of my perception of purported profiteering.  I have lived "leisure activity trauma" and its aftermath through six years of bitter litigation and could give advice in one paragraph. Simply and always accept responsibility for any incident which occurs under your care and ask the family immediately "what do we need to do to make this right!"  It is easy to write about something that you did not live on a daily basis.
       And then we have Frostborg's President, Jon Gibralter, Ph.D.  After an impassioned three page letter from me imploring his assistance in intervening with Kauffman...nothing!  Another righteous hero!
       There is a lesson to be learned here.  When dealing with parents of disabled children who hold trauma in every cell of their being, communicate with them.  When they tell you that you have failed to communicate, acknowledge that they are speaking their truth, apologize and do better...do the right thing.  They know their realities, they know their pain, they know when they are being patently dismissed  ... there is no greater evil than the evil of non response to a person in pain.  Traumatized people never just get over it, their wounds do not completely heal, no matter how hard they work. They care for their disabled kids 24/7 for life because it's the worthy thing to do.  To refuse to engage with these wounded warriors when they request it is the antithesis of  a good human being.  There is still much more to come....

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, The Perils of Indifference, 1999

NB: I did inform both gentlemen that I wrote this post which referred to them...

     
       

ALL Good People and Dogs Go To Heaven....the Pope

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Final Days...That It Will Be So For All !!

       Death faces us all; some with an ability to verbally express what life has meant.  Others have an inability to express what life has meant, but, nonetheless, the experience of life is there.  The inability may be a function of severe disability, the suddenness of onset of death, accident or other life circumstance.
       I would hope that we all are able to face death with the grace and dignity of Zach Sobiech.  Those medically fragile, compromised children and adults who have been cared for with diligence, full attention and unconditional love express without words the message of "My Last Days".  I hope that have the experience that their spirits emanate this joy for their existence and for those who are important in their lives.




       The value of life is not measured in years;  it is not measured through accomplishment; it is not measured by philosophical rants.  The value of life is that someone cared very much, even if  that 'care'  may be from a single person.
        We will all have our final days and it bodes well that we have loved and are loved, no matter how small our universe may be.  To parents who have lost a child, the words of Zach ring true...life was meaningful.  To those living under the threat of serious illness and medical complexity, Zach's words are a testament to the care of parents and caregivers.  To the rest of us, we should never want for inspiration, we should not ever overlook inspiration...inspiration is good.
        Able to express or unable, the testament to caring is there!  Know that every act of kindness adds to meaning of a short or a long life.  Indifference diminishes that meaning!  Inspiration takes many forms and it is good!

Breathin'....Sustaining Life Forces

 

 Breathing, respiration, oxygenation, the movement of chi, the life force which sustains, resides in a small set of paired organs.  The breath of the outer and movement of the inner....it is that which sustains every vital process in the body.  The simple exchange of the most basic molecules enables the body and soul to sustain connections to the universal process of life.
      In the world of disability, respiration is perhaps among the most vital and sustaining forces of life.  In the expanse of disability, mucus, stickiness, shallowness, lowered blood saturation levels, hyper or hypo ventilation, compromise the body healing and curing itself.  This exchange between the inner and outer worlds enhances, inebriates, defeats or compromises living.  To me, the lungs are paramount for my son; this organ and its process physically and spiritually maintain the force of life.
      If you not severely compromised, you can learn deep breathing, yoga, various respiratory protocols which enable a decrease of stress, a hyper-oxygenation of the blood, a rhythm of interaction with the outer and inner and an enhancement of immunity.  There are many conscious adaptive approaches.  BUT, what if a child or adult is so fragile, medically complex that conscious controls are not available?  So, so many of our friends have disabled children or adult/children who are challenged by forces of the body and the environment and they develop respiratory issues which make them vulnerable to a diminution of life force, to pneumonia, to shallow breathing, to airways and bronchi clogged with mucus, to.... are there interventions which strengthen the most vital of systems?
      One ABR (Advanced Biomechanical Rehabilitation) protocol which has significantly assisted my son is noteworthy;  it's a modification of a older protocol.  Posted a while ago on my Facebook page, I wanted to share this protocol for parents to assist in strengthening that which is so vital.  I know it is not the only intervention; I am sure others could add various techniques.  Breathin' is so very important.
       Here is our exercise explained by Leonid Blyum, founder of ABR , on Adam in April, 2013.

2013-04-22 Chest Exercises from Phil and Sharon Dzialo on Vimeo.

A Piece about Peace's Piece or "I wish that my child did not exist?"

There are all kinds of stupid people that annoy me but what annoys me most is a lazy argument.
Christopher Hitchens


I must confess that I have been an avid follower of Bill Peace's blog, http://badcripple.blogspot.com/. Reading it often, commenting infrequently....

Recently, Dr. Peace posted about those vile people who take issue with his positions about disability issues and disability representation. Shame on you all! Shame on you if you support the various "Death with Dignity " initiates because laws allowing the terminally ill to receive assistance in choosing a "good death" will suddenly enhance the demise of the disabled...that's because of the "slippery slope argument". Of course, by definition the "slippery slope" is an epistemological fallacy. "A" does not always mean "B". Also a note that extraordinary claims require extraordinary evidence.

Cures? Well, that's another vile taboo subject akin to incest. Isn't it much better to accept your child who cannot walk and look askance at recent developments in light weight exoskeletons?  Is it not better for a child with refractory epilepsy to just be accepted as they are?  Isn't it better to solely accept a child with severe spasticity and contracture than to hope that some day stem cell research will result in cure? Actually, if you didn't realize it,  the cure industry is the Satanic arm of Big Pharma. Just provide sufficient services to the disabled and adequate supports and all will be will in Camelot.  From my sarcasm you can readily ascertain that these are NOT my positions as a father of a severely disabled son.

So let's use a real life example. My son is spastic, very heavily contracted, with rotational scoliosis, and has multiple physical and cognitively expressive issues. Does that say anything to you? Well, try this experiment if you will indulge my ramblings. Tense your body, tense and intentionally contract every muscle you can....see  how long you can maintain this intentional position. One minute, two? Pretty painful; in fact, it's godawful painful; in fact, the pain is unremitting and intractable. Now smile while you're doing this. Interesting...now do this for 24 hours a day, 365 days a year, 15 years. Now, watch this suffering of pure humanity in your son for 15 years...would you hope for a healing cure, for an abatement of suffering?  Would you sacrifice your own life so that your son or daughter would not suffer?  Most parents would, but would the advocate of acceptance?

So, in the context of the argument written in this post by a man dismayed by his critics, he responds to a kindly mother and I when we rather gently question his disdain for the cure industry. Please read with the realization that it may be very difficult.

  william Peace said....
       Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist. Talk of cure makes me decidedly ill at ease. (emphasis is mine) Is a quest for cure not an effort to eliminate those society does not value? I lived the first 18 years of my life as a typical bipedal person. I have lived almost twice as long as a paralyzed man. I consider my existence before and after paralysis to be equally valuable. Yet my existence is often called in question simply because I am not bipedal. Hence I would suggest we accept people for who they are and value that individual as they are.

May 8, 2013 at 12:33 PM

     As I mentioned in the opening of this discussion, this is quite a lazy argument - no proof, no objective validation, just a statement from what I perceive as a skewed academic mind.  Of course, I responded ... privately and by e-mail.  My words were unworthy of publication, private and spurred by indescribable rage (that means nasty, vile words).  I want a cure, I want a relief of suffering, I want life for Adam to be more filled with ease.  The parent of EVERY medically complex, physically and cognitively child wants  something to make life easier for the child, not the parent. Although a bit of reprieve for the caregiver might allow for a few more years of life.

      As parents and caregivers of very disabled children or disabled adults, we have accepted who they are and we fully value their humanity.  We spend every waking and sleeping hour doing what is right...to the very point of a profound weariness of the soul and the body.  I believe my words are the words and the thoughts of most every parent of a severely disabled child I have met.  I have no idea where in the recesses of any mind a human could say to another human, " your desire for cure, your desire to alleviate suffering is a function of an unconscious wish that "your child did not exist."  Vile....

        After a rancorous exchange, w. peace did apologize:

william Peace said...

Single Dad, I am well aware I hurt two people very badly. I deeply regret this. I do not want to engage further because I fear my words will only cause more pain and hurt. I was wrong. I am sorry. This is inadequate I know. Again, I am sorry.

May 9, 2013 at 3:08 PM

Well. many, many more than two people were emotionally battered by a generally respectful and insightful blogger on the area of disability and discrimination. Every single parent of a severely disabled child or adult was pained and hurt...every one that I have every met. We are all aware that cure may not be attainable in our lifetime, our kids' lifetimes or ever. That never precludes the search, the worldwide search for that which will make our sons and daughter suffer less...no matter what the means are.

I am bewildered that such a statement could be made questioning whether any parent could wish whether their child existed?  "I was wrong." does not explain the underpinnings of such a statement, no matter how admittedly wrong it was.  Why was the statement made?  What belief system underlies such rage?  "I was wrong" is insufficient. Not engaging in further explanation of what you said reflects more an attempt to stop a conversation than to avoid further hurt.  I want to understand where such an observation comes from when  it can be directed at the most vulnerable segment of the disability community.  Commentary should be withheld  and one's observations should be limited to one's experience and knowledge...people with limiting physical disabilities.  Please leave the caregivers of the severely disabled alone; it is a world you cannot understand.  Our issues far outweigh handicap access, "inspirational porn", neurodiversity, critical analysis of theatrical productions, etc. Our issues usually center around two simple, inescapable facts of life:  living and dying on a daily basis.  

Each severely disabled person and each caregiver of a severely disabled person experiences their life and their soul in a different manner...there is no standard approach, no model better than another, all barriers are very different.  Each one's emotions, motivations, energies, levels of resilience, levels of depression and levels of weariness are unique and sacred...and all are to be equally respected.  Every experience of this world is valid and it is inappropriate to evaluate or comment on other's experiences and expression of their disability.

You can never claim to be a disability advocate by vilifying or targeting portions of the disabled community.  It is already fractured within..  The assumption of a larger than life position in the advocacy world necessitates a larger than life responsibility to represent and understand all  or either to be clear whom you represent!

Little Job's Book of Broken Poems, Volume 2 by Eric Fischer

        My dear friend, Eric Fischer, has recently published his second volume of poetic reflections from the perspective of a primary caregiver of a severely disabled and certainly medically complex son,  Ohtahara Syndrome is a rare, debilitating disorder marked by epilepsy and numerous other medical complication.  Eric and his son Segev, reside in Israel.  He writes from the heart and soul and express the fullness of an unconditional love of an extreme caregiver.  Eric also blogs eloquently at  http://iamabrokenmanyoucantbreakme.blogspot.com/
         These poetic reflections express the soul of a father and his son in a thoroughly unique and insightful manner.  The book 1s available at amazon.com and also in a kindle format.  It is an absolutely must-read for parents coping with serious medically fragile and medically complex children.  Do not hesitate to order it for a moment, you will not regret.

Little Job's Book of Broken Poems, Volume 2 by Eric Fischer 
(click link above to purchase)

     Get's my highest recommendation!!!

I AM BACK........

     Well, my hiatus from the blogging world in disability land is over!  Many events have occurred over the past six months which re-energized me to continue Adam's story and my commentary about disability issues. I have grown weary of reading about a condemnation of parents of severely disabled kids who seek a "cure."  I am tired of self-styled advocates who maintain that search for cure translates into "I wish my child didn't exist."  I am tired of advocates who equate the amelioration of our childrens' suffering with a failure of acceptance of their condition.  I am tired of groups who rail against "good death" choice for the terminally ill and freedom of choice because they live in perpetual pathological fear that society is out to kill them.  I am sickened by the constant reference and rhetoric about "inspiration porn"; a juxtaposition of  words which are vile expressions unto themselves. I am tired at the times when  disability advocates rail against choices of other disabled people and criticize in an inflammatory manner how they choose to live their lives.
      I am irate at college authors who write books lately about Adam and fail to ever contact us, during and post-publication.  I am tired of college authors of texts about Adam's case who refuse dialogue about why they never contacted us until we only discovered the text on "google."  They negligently inflict emotional distress and could care naught because they seek notoriety and profiteering ....a story which must be told in detail.
      I have grown weary of victims who have become victimizers; advocates fighting discrimination against disability who become discriminators themselves.  I am weary of people who continue to focus on normal, when normal does not exist.  I am weary of those who rob others of hope and attempt to impose their world view on others...they believe they have the one true church where all people with disability must worship.
      It is time for a challenge to conventional thought, a time to review a world view which fails to evolve.  I am back!

Signing Off...

Our National Obsession with the Reason "Why?".....

     We face the horrific death of innocent young children.  We face the grief of parents and siblings whose wounds will inevitably never heal.  We face the person of our President in a display of profound angst.  We confront the heroism of adults who attempted to protect the most vulnerable and valuable members of their community.  We will never know the trauma of the police, first responders and medical personnel who came upon unimaginable carnage; a sight that will plague them in visions and nightmares for their existence on earth.  We can never imagine the loss imprinted upon the parents and the siblings of the slayed.  We can never imagine nor can we ever understand....

    What concerns me as a parent who, in his own way, had to confront a near death and permanent disability of his son 14 years ago, is the persistent search on the part of public for the reason why this happened.  I am perplexed by the disability advocates who jump to the keyboard to announce that autism, that a personality disorder, that Asperger's Syndrome does not make a killer.  I am in a quandary when the media disperse a plethora of diagnoses and bloggers believe that the public will blame the horrific actions of a young man on his appearance of diagnosis.  Although I am an anti-gun advocate, I question the immediacy of requests for more controls because it distracts from a greater national dialogue.

       I am confused by this national obsession to know why Adam Lanza killed his mother and so many others, especially young children.  The reality is that you will never know...but here is what I have heard as some indicators:

• autism
• personality disorder
• Asperger's Syndrome
• mental problems
• developmental disorder
• psychopath
• inability to form bonds with other people
• excessive gaming
• being a "goth"
• lack of gun controls
• mother was a "big, big gun fan"
• divorce of parents
• deeply disturbed kid
• had a rare condition where he could feel no pain
• he was evil in our presence
• a lack of god in our school (Mike Huckabee)

       And so, we have a national obsession with the "need" to know why.  We pour  energies into learning the why of his slaughter of the lambs.  We decry the fact that perhaps he could have been rescued from his problems.  We need to know why and we need to have someone or something to blame; as if that will make the universe right.  We need to make sure that "our disability" is not attributed as a cause of this horror. 

       Knowing the reason for why will not undo the horrific actions.  Knowing will not prevent future incidents which have been with us since recorded history began.  Knowing why will not reduce nor diminish the profound wounds nor grief of the victims and their families.  Yet, it is always what we do, look for a cause (real or not) and look for evil (real or not).  Horror of this type is not preventable nor is it understandable.   I believe that the search for "why" is a fruitless endeavor which detracts from a participation in raw grief.  Really, there is no answer to "why" nor is there a way to "prevent" horror.  The human mind and spirit is too complex and beyond mortal comprehension.  Bad things happen and they happen to good people.  Bad things happen...

      What do we do?  We should grieve and grieve deeply.  We should join our spirit in compassion, empathy and care with victims of horrific events.  People die when they should not, people kill when they should not, people are blamed when they have lost their souls.  We should mourn and we should grieve; we should lend support; we should understand that the wounds of the universe never really heal.  Pursuing an aimless search for why neither soothes the soul nor allows for our human consciousness to evolve.  What should be our national response?  Grief and mourning and a hope for a better day!

A National Example 

ABR redux....

     We are approaching ten years of ABR (Advanced Biomechanical Rehabilitation) in our daily effort to allow Adam the maximal amount of comfort in a body riddled with spasticity and contracture.  We make progress:  the scoliosis resolves, the space between vertebrae increases, the rib cage becomes even, the pelvic floor shifts to a normalized position.  Adam can again sit comfortably in a wheelchair.  These strides have developed slowly without a need to resort to any allopathic interventions.

      People often wonder if the theory of fascial collapse, the need to strengthen the core and the methodical process to move from spasticity to weakness to normalization is real.  Underneath spasticity is weakness and the journey is filled with what I consider "healing crisises." Things never simply just get better, nor is healing a purely linear process, without crisises along the way.  Change produces challenges that you work through...as spasticity gives way to weakness, challenges develop until strength of the core and the supportive fascia returns.  Crisis occurs in many and unique ways.

      Below is a new five minute video from the Denmark ABR Center which traces the real effects of ABR on hip subluxation.  This subluxation is often a function of pelvic and core weakness.  It's a common condition in CP and other syndromes characterized by a manifestation of low or high tone, spasticity or floppiness.  This video traces the effect of ABR through x-rays over years.  Surgery, muscle releases, casting, etc can and are avoided.  Surgery is an intervention which often needs repeat and ultimately weakens the fascia.  Seeing is believing.

       ABR is a slow, intentional methodical parent directed process which can normalize hip subluxation.  The alternative in more severe cases is surgery and casting....

Pins and rods

Like ABRCanada on Facebook...a great, great resource.

Hijacked

      Stealing the blog today – a wife’s prerogative.  Today is a momentous day for Philip, celebrating a Big Birthday (I’m not there yet so I can say that. . . )  Philip, dear husband and father, is 65 years old today.  Not sick, not feeble-minded, capable of being the chief cook,  caretaker to glorious Adam, handyman extraordinaire, adoring and attentive father to our princess bride and her new husband, Chief Financial Officer for all family finances, and my best friend.  Given the last fourteen years of our life these strengths are quite impressive.  And, he has all intentions to keep on keeping on (please listen to this Universe).  I will light a white candle to fortify this intention today!  He will be fussed over today – presents, cake, little to no chores (except when I need his help with Adam) and take-out meals throughout the day (since everyone knows – thanks to Philip- that I do not cook).  Our daughter and son-in-law visited  this week-end, bringing gifts and joining us for dinner at our favorite local restaurant.     Philip always manages to celebrate his birthdays for days, even though he protests that they are not important events to him.  He lies. 

      So, without further ado,  Happy Birthday Philip.  You are loved and cherished!

Happy (U.S.A.) Thanksgiving....

Really, now, are words necessary....

George (dubya), remember him,   pardoning the turkey...

To Everything There Is A Season...

A short wedding video of Aimee and Tony

There is a time for everything,
    and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

Ecclesiastes 3 

Back to "Normal"....

        The wedding is over!  The elections are over!  Sandy the hurricane and the latest nor-easter have passed.   Looking forward to getting back to normal, whatever normal may bring in the coming days...We live in a residential neighborhood near the ocean ...maybe the wind dropped him or her in after the last storm?  On second thought, must be a her.

A visitor to our home on November 9, 2012
Just back to "normal"

I know she's saying something to me, wonder what it is?  Or who is it?

A Dad's Wedding Speech....

    November 3, 2012

     For those of you who don’t know me I’m Phil,  Aimee’s Dad and on behalf of my wife Sharon and I, I would like to welcome you all here today to celebrate the marriage of our daughter Aimee  to Tony.

     I would like to welcome Tony’s parents, Steve and Donna, his brothers and grandmother, as well as all of our relatives and friends. I know a lot of you have traveled considerable distances to be here.

     Many of you have my met my son, Adam, who was severely disabled in a near drowning at a summer camp over 14 years ago.   A special woman in Adam’s life who had the uncanny ability to decipher his thoughts, once told us:  Adam says  “Love means showing up and being there, even when you don’t have to….”  It is with his sentiment that I welcome you.

   Thank you all for coming, it’s very much appreciated.

THE WEDDING

     As father of the bride I have the pleasure of making the only long speech on this magical day…

     I have given much thought about what to say or not to say. For those who know me, I speak my mind, my truth and really don’t censor much.  I often can’t complete a sentence without a profanity thrown in for effect.  But, I promised that I would be behave this evening.

However, for myself, it is has been over 31 of marriage years since I was allowed to say anything without being disagreed with, laughed at or ignored, so this is too good an opportunity to miss.

At the end of the day, it is my speech and I can say what I like.

MY DAUGHTER AIMEE

This is the point where I am supposed to say a few embarrassing things about Aimee when she was younger but unfortunately she has been a perfect daughter. I do know, however, that over the course of the evening, after a few drinks, Aimee’s friends will share more than you want to know.  I am also anxious to hear about those moments from my princess’s life which have been hidden from me with care.

Suffice it to say that Sharon and I are both very proud of how she much she has accomplished and how she has grown up and we are both delighted that she has found someone who she obviously loves and cares for very much.

Aimee is our first child and I can attest to the fact that it was a long and memorable birth…with emphasis on very, very long…

When we spent months in ICU with Adam  in 1998, an elderly and crippled physician pulled Sharon and I aside.  And, as if he could foretell the future, he simply said…”Remember, always, that you have two children…”

We never forgot those words, and I guess that’s how Aimee became a princess.  Despite whatever difficulty we faced, Aimee was always given the best … she was our daughter and our love.  Aimee has made us very proud. All parents want their children to have a good education and give themselves a good start in life.  Aimee accomplished that and we’ll be paying for quite a while.  Today, I look at my daughter and I see an independent, attractive, elegant, stunning young woman. She obviously takes after her mother.

Of course she inherits other traits from me…

·       her cooking…

·       her like of one or two small drinks…

·       her ability to induce others to clean up her messes…

·       her obsessive compulsive need to control…

·       her allergy to people’s bullshit…she, like dad, both have built in detectors and reject that which is false and pretentious

·       her appreciation for the finer things in life (though we disagree about the meaning of finer)

    She learned compassion, sympathy and a zest for living from her brother. She has learned about unconditional and unwavering love from her mother.  She gets her intelligence and drive from both mom and dad…that is the politically right thing to say!

    And, she has well learned about the intricacies of politics from her love, Tony!  Thank god, we’re all on the same page!!!  (four more years!!)

TONY

     Every Father hopes his daughter will find an accomplished, sensible, loving and compassionate  partner and as much as you try not to interfere in their lives, you always hope your children will make the right choices in life.  Aimee, thanks to the power and intention of universal energy, chose Tony.

   I have found that Tony is compassionate, sensitive, loving, intelligent and one hell of a singer.  I am so impressed by Tony’s ability to engage Adam…this a trait and quality of humanity that I rarely encounter in many people.  It is for those and many other reasons, that I welcome you and your family into ours.

     Tony, I hope that you will be able to keep my daughter in the lifestyle to which she has become accustomed and desires.   I’m not sure that either of us knows or understands the depths of princess-hood. To help you with your marriage, I thought I would give you some advice based on my 31 year experience of married life.

    Marriage will teach you many things… loyalty…self restraint…obedience…I am still in daily training on these matters.

     There is no challenge in a marriage that can’t be overcome by one or more of the following:

·       I was wrong!

·       You were right!

·       Yes Dear

·       I love you!

     Finally, never go to bed in the middle of an argument – be a man, stay up and fight and watch some sports or play Angry Birds. You’ve lost anyway, so you might as well get it over with.

    I would just like to leave you with this thought…

     The actor Richard Burton once said that ‘a woman accepts a man for what he is and then spends the rest of her life trying to change him.’… So, if we can all take one last look at Tony as we know him because Aimee’s remodeling work starts first thing in the morning.

Finally, this day is magic.  I believe in magic.  I see magic in their eyes, in their touch, in their embrace …they are magic unfolding in front of us.  It’s the way things should be!  It’s the way things are meant to be…magic!

The Wedding......A Time for Magic

       My daughter, Aimee wed Tony Iannotti on November 3, 2012.  It was a day of magic, awe and wonder.  Sharing a few photos of the day:

Pre-Wedding Preparations

Groomsmen with Aimee and Tony

Bridesmaids with Aimee and Tony

Mon, Dad, Adam and Aimee

Mom, Dad, and the uber-groomsman (Adam)

The Moment

Our Princess!!

Now, Mr and Mrs. Iannotti

One of many floral arrangements (this one for the vows)

Post Wedding breakfast

Dealing with pre-nuptial anxiety

The products of pre-nuptial anxiety



THE BLESSING GIVEN BY THE FATHER OF THE BRIDE (me)

Apache Wedding Blessing

Now you will feel no rain, for each of you will be shelter for the other. Now you will feel no cold, for each of you will be warmth to the other. Now there will be no loneliness, for each of you will be companion to the other. Now you are two persons, but there is only one life before you. May beauty surround you both in the journey ahead and through all the years, may happiness be your companion and your days together be good and long upon the earth.   Treat yourselves and each other with respect, and remind yourselves often of what brought you together. Give the highest priority to the tenderness, gentleness and kindness that your connection deserves. When frustration, difficult and fear assail your relationship – as they threaten all relationships at one time or another – remember to focus on what is right between you, not only the part which seems wrong. In this way, you can ride out the storms when clouds hide the face of the sun in your lives – remembering that even if you lose sight of it for a moment, the sun is still there. And if each of you takes responsibility for the quality of your life together, it will be marked by abundance and delight.

In the middle of the party that never ends.....Aimee, Tony, Juli at the Coonamesett Inn
Falmouth, MA