Nightmares (by Sharon Dzialo)

    

  My nightmare.  You might be surprised!  It had nothing to do with Adam, his accident, the bumps in his recovery, the fear of losing him.  Nope.  I woke up in a terribly dark place this morning.  My night was filled with images of a long-time friend.  We worked together for years, talked often in that heart-to-heart way, socialized.  Then the accident.  Everything changed and our relationship changed.  She watched as I attempted to stabilize my life with Adam.  We met infrequently and she once told me that she could only spend time with me when she was feeling okay (body, mind, spirit kind of okay).  I bought that story at the time.  And, now to the nightmare.  I was back there, in our old workplace, and I saw her.  I really enjoyed our friendship – we could talk about everything.  This time I could feel a huge smile spreading over my face as I approached her.  She couldn’t see me.  She looked to the left, to the right, and she didn’t see me OR she was ignoring me, acting like she no longer recognized me or couldn’t remember me.  I stood there and watched her greet and hug other people who were in the same space.  It was so painful.  Her partner, another good friend of mine, found me and just sat next to me.  We didn’t need words.  He was always like that – hanging out, sharing the same space.  I miss him too.

         My losses – always triggered by the holidays.  I can’t get away from it, no matter how I challenge myself, my thinking, my choices.  My life is so different now and much of the change is related to what happened to my relationships when I willingly and passionately took on the role of extreme caregiver to our son Adam.  I lost most of my family and friends.  I have heard people say, “well, the phone goes both ways.”  Well, I couldn’t – pure and simple.  I accept that now.  I was not capable of maintaining my old life – work, friends, family.  All of my energy, my life force, was directed at caring for Adam and keeping myself together.  I do wonder how folks could not see this, not understand this.  I needed them to reach out, to come to me, to accept that the playing fields were no longer equal.  Obviously they would only do this if the relationship had been important to them.  Since it didn’t happen I am left wondering if folks just don’t care enough.  It was too easy to let go.  Yes, I know all of the excuses:  Didn’t know what to do.  Didn’t know what to say.  Couldn’t handle the intensity and sadness.  Had their own issues.  I’m not saying that it would have been easy.  I am a different person now with new priorities and needs.  It would have been necessary to get to know my new reality and figure out a way to be present in that space and time.  Very few tried. . .

      
 Now, this sounds like it’s all about me.  Well, I re-visit the nightmare and realize that this is my son’s reality.  Few people see him, know him, love him.  He is invisible.  It’s heart-breaking. But, wait a minute.  I am heart-broken; Adam is not.  I live with the awareness of separation, of loss.  He lives in the moment, laughs in the moment, doesn’t worry about the past or the future.  I have so much to learn from him. 

Vacation...Getting Away From Life (A Sharon Dzialo Post)

Phil's Vacation Resort

 I needed a  retreat – also, knew that it would look very different from Phil’s recent get-away.  He checked into a hotel for three days, slept blissfully, wrote a blog, read a book, walked by the ocean, ate “sinfully” delicious food and had NO RESPONSIBILITY.  I want to mention here that Phil has NEVER done this before and I prodded, pleaded and eventually forced him to go.  I have, in the past, when Adam was in stable shape, taken days away, even a 12 day trip once to Hawaii to visit friends.  Adam was in school then and we had several  good people to help with his care.  This, unfortunately, is no longer our reality.   Phil, however,  could not leave his home, his son, his safety (the old PTSD STUFF. . . ) Until recently -  If you follow our story you will know that the last year has been very difficult – many, many challenges with Adam, ones that left us with that “special fatigue” only experienced by the extreme caretakers of the world.  We were both desperate for a break and, given that we have a gravely diminished support system in place, we needed to take our retreats separately.

Kripalu Retreat Center

I traveled to a yoga center in Western Ma., intending to sleep, walk, participate in some gentle yoga classes, eat healthy food, read, and “if the spirit moved me” connect with some other folks.  RUDE AWAKENING – I signed up for a dorm room with five roommates, all of whom had arrived and settled in before me.  Only a top bunk bed was left, with other people’s clothes scattered about – so welcoming (NOT).  I grabbed my book and tried to find a comfortable chair in one of the many sitting areas.  The Center was packed, people coming and going, chatting, chatting and more chatting.  I couldn’t read so I eventually found my way to a yoga class.  Relaxing? Peaceful? Comforting?  No, no and no.  My body was screaming – couldn’t turn my head to the left, had pain running down the middle of my back and this happened just because I was laying flat on the floor.  Wake-up Call!!!!  Hate it when that happens.  My body was talking to me – too much stress all bottled up.  I hobbled back to my room, met one roommate (nice enough) and then settled onto the top bunk worried about the night ahead because I ALWAYS have to get up in the night to use the bathroom. I was envisioning myself slipping down the ladder, crashing on the floor and further harming my fragile body.   As I was trying to drift off another woman entered the room, loudly announcing her presence, flossing her teeth with great drama, brushing her teeth in the sink while loudly spitting and then setting up a laptop on her bed with the lights on.  I could hear her typing.  Tossed and turned all night and, finally, in the wee hours fled the room, took a shower and made a plan.

Kripalu Center

I requested a private room – YES! And, was settled in within an hour.  I scheduled a therapeutic massage and it was perfect.  A tall, gentle man sat me down, listened to my story (which I told in two sentences) and kindly and compassionately talked with me about honoring mothers and, especially mothers in extreme circumstances.  I cried and he then proceeded to massage the stress from my body.  I must admit that I fantasized about taking him home with me – Phil and Adam would have loved him too.  And, my daughter – well, she loves massages. . .

So, I learned that I needed and wanted to be alone.  This seems like a contradiction when you know the circumstances of our life.  With the exception of one committed and loyal therapist who appears at our door every ten days for a four day stay AND visits from our daughter, her boyfriend and Tiki (the grandpuppy) we lead a very solitary life.  A few family visits each year, phone calls, casual conversations with the neighbors and one or two new friends – that’s it.  Being alone afforded me the luxury of NO CARETAKING, unless it was moving in my own direction.  I went to bed when I wanted, walked, read, took a nap.  I didn’t need much – the simple bliss of no responsibility for even a few days. . .  

Sounds like a new plan – every few months?   

Alone is OK!!!

Happy Anniversary to US!!

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

Aimee, Sharon, Adam, Phil Dzialo

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

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

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

     

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

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

Happy, Happy Birthday Sharon....

   
       June 3, 2011 and you are 39 once again!  Your secret is safe with me!!!  It's a great day to celebrate the birth of a very, very special person.  While you weren't born in stable with adoring baby animals, angels and wise men around who were guided by a star, your effect on the people whose life you have touched is remarkably similar.  You are wife, mother, ABR therapist, counselor, consoler of a periodically forlorn daughter, mainstay of a somewhat neurotic husband, unconditional care giver to a disabled son.  You also are a homemaker for a chihuahua who is more neurotic than your husband and a poochon who gives the word "dependent" new meaning.  I could make a long list, but later.....first a song which says it all on your birthday.  It's Iz and  "Over the Rainbow/It's a Wonderful World!"  Great lullaby to put your kids to sleep....among other things.

       Well, let me say that it's difficult to sing your praises on your birthday and Mother's Day which are less than 30 days apart.  I think that you could have planned better.  This is a drain on my limited reservoir of emotion and my wallet.  But what the hell, we have learned to take life together as it comes to us.  For 30 years we have been partners and soul mates on one f....ing incredible journey.  No smooth sailing by any means, but we have learned to depend on each other's wisdom.

       Together, we have spawned two beautiful children: an accomplished daughter and a son who is in the process of accomplishing.  I wish he would hurry up, don't you?  On the other hand, I wish she would hurry up too.  Notice how you have to fill in the blanks on these statements of our dreams?  Your role in their development is inexplicable and short of miraculous.  This selfless, unconditional love is what I admire most about you.  I probably fall short, but you know woman who are saints are often attracted to men who are sinners.  I am happy to have you along on this ride.

       Ollie and Chloe are also happy to have you along on their ride.  They, however, are in the driver's seat.  Finicky, demanding, neurotic, periodically incontinent (runs in the family), always hungry for a gourmet meal....and you cater to their every whim even to the point of allowing Chloe to sleep snoring in your ear all night.  Now, the ear plugs make sense.  My wife, for whom "no" is not a word in her vocabulary, is the ultimate care taker...even of the beasts, even of the children.

        You have accomplished a lot in .... years.  Completed several graduate degrees, worked as a teacher and counselor in education, continue to be great mother when time would dictate that retirement is sitting on the deck with a brew, cleaner,  carer of a handicapped kid, author of a book, learning the piano (again), and learning to be skilled in the fine art of blowing off indifferent people.  (The latter I taught you, but probably will not be given the credit.)  So much is such a short period of time, only....years.

        Anyways, it's your birthday to enjoy, but that doesn't mean that you get the day off...there are no days off in this house.  It does means that you get to know that you are loved, appreciated and admired by adults, children and beasts.  Happy, happy ...th birthday.  I am looking forward to our 30th anniversary (again)!  Oh, by the way, in our next lifetime in the world of normality, keep a reasonable spread between your birthday and Mother's Day.

"Ceramic To Clay" by Sharon Dzialo



Available for purchase at: www.ceramictoclay.com

        Sharon Dzialo, Adam's mom (and Phil's wife), has written and published a new book, "Ceramic To Clay".  This is a story of a mother's search for authentic healing for her son and describes the many paths which were taken to help Adam to move progressively toward recovery.  One of the most significant paths includes ABR (Advanced Biomechanical Rehabilitation).  The press release below provides an overview of this journey.
        The book is now available at the www.ceramictoclay.com (author's site), amazon.com, and barnesandnoble.com. A version on kindle will be available in the near future.
        Also, check out the information at Marcy Marchello's blog: Everyone Outdoors which not only speaks of Sharon's book, but describes great accessible outdoor programs throughout New England.

PRESS RELEASE

FOR IMMEDIATE RELEASE

2010 – New Release Tells Heartbreaking Story of Mother’s Quest for Helping Her Son Heal

Ceramic to Clay: A Mother’s Search for Authentic Healing for Her Severely Brain Injured Son

is released by author Sharon Dzialo

Everything changed when 12-year-old Adam Dzialo nearly drowned, spending more than 20 minutes underwater. The accident transformed him from a healthy, vibrant sports player to a tube-fed, nonverbal and severely traumatized child who screamed without sound and cried without tears. Traditional options such as surgery, medication and therapy of all sorts led not to success but to disappointment. But a meeting with an experienced clairvoyant shows the author a new way to treat her son, opening the family’s minds and hearts to a deeper – and gentler – approach to Adam’s recovery.

Ceramic to Clay tells not only Adam’s story but that of his mother, Sharon, a high school teacher and counselor. She takes charge of her son’s care, and the family transforms its dining room into his bedroom. The early days of recovery prove difficult as Adam’s friends stop visiting, traumatized by his contorting body, and loneliness and depression set in for the whole family. The author realizes that physical healing is just one aspect of the trauma the family faces. As they work with the clairvoyant, getting Adam’s spirit back into his body is the first of many success stories. Sharon also describes his first laugh after the accident and a compassionate aide he works with once back at school.

As Adam’s family continues nontraditional therapies, such as the Japanese healing technique Johrei, which offers healing and spiritual awakening, they open their eyes to other possibilities. Although setbacks occur, eventually they come to realize that circumstances can set them free instead of confining them. For instance, advanced bio-mechanical rehabilitation brings the chance for Adam’s parents to train to perform the manual applications themselves, so no more travel to therapists. The author’s honest telling of her son’s story will resonate long after the last pages of this heartfelt book are read.

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For further information contact: Ray Robinson at 317-228-3656, via email at RayR@DogEarPublishing.net,  or through the website at: www.dogearpublishing.net.

Ceramic to Clay: A Mother’s Search for Authentic Healing for Her Severely Brain Injured Son

Sharon Dzialo

Dog Ear Publishing

ISBN: 978-160844-758-9             152 pages                                                                                                              US

Available at Ingram, Amazon.com, Barnes & Noble and fine bookstores everywhere