July 24, 1998 . . . Born Again!

Better to light a candle, than to curse the darkness (Old Chinese  proverb)

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

We Do Not Take Care of Each Other!

       Every once in a while we confront the Truth.  It hits us in the face like a locomotive plowing into a stone edifice. What to do?

Keith Olbermann: Face It We Do Not Take Care Of Each Other!

Adam's Back, Eggs and Super-Soft Balls...

       The biomechanical changes in the body of a spastic young man (Adam, in this case) resulting from many hours of daily ABR (Advanced Biomechanical Rehabilitation) are never simply linear and even.  Changes happen from the top (head) and cascade throughout the body.  At times, as parts of the myofascial membranes and supported structures normalize, other areas demonstrate their inherent weakness from the original collapse caused by the brain insult, either acquired or present from birth.  As we know, underneath all spasticity is weakness.  The "getting better" part of the process is neither smooth nor linear.  Transitions arise and changes in ABR protocols are necessitated.  ABR produces releases in the myofascial layers which reveal further weakness which must be strengthened.

Our present ABR project: differentiation of
sacrum and illiacs; mobility in sacroilliac
triangle to prevent pelvic tilt when
seating.

      We have now resolved the issues concerning excessive mucous production because of releases in the thorax and increased lung function. And we have fairly effectively removed restrictions in Adam's vertebral column through the mid thoracic area.  Prior to ABR his shoulder blades were rotated high into the clavicular areas and there was little differentiation between upper thoracic and cervical vertebrae.  These areas have greatly improved and alligned.  On the heels of this positive progress, we are now confronted with Adam's inability to sit in his chair for periods of more than an hour without discomfort.  Now, we need to confront the rigidity and lack of differentiation of the sacrum, illiacs and lower veterbral column.  This rigidity causes pain when loads on the column come from below and cause the pelvis to tilt.  Now begins the process of ungluing these structures from each other and strengthening the lower end of the vertebral column.

The EGG...actually we use the orange very soft
version by eggserciser and the red soft by theraband.

         After a video consult with Leonid, we are using the new "egg" rolling technique along the illiacs and the sacrum while Adam is prone so as to release the rigidity which produces the pelvic tilt when seated.  Also, we are using the egg to roll from along the hip bone to the pubic bone to strengthen the lower abdominal wall now that previous exercises have produced needed space.  Parents need to be trained to use this new tool and, most importantly, the necessary targets will be prescribed for them based on each child's physical challenges.

Since ABR, the rib cage evened out, abdomen strengthened
and expanded, shoulders moved to proper position and intercostal
spaces greatly expanded.

         After several weeks of the new protocols, we are noticing more changes in the sacro-illiac triangle and a greater division between the lower rib cage and pelvis on the right side of his body.  All good things!   Our belief in the success of ABR maintains our determination and we do the techniques daily for 3-5 hours and use the machine in the evenings for about 10 hours a night.  While Adam's body is not a pretty sight, it is getting prettier and more comfortable.

Note the finger pointing to the increased division between the lower portion of the rib cage and pelvic area.  For many years these structures overlapped and ABR has allowed for differentiation and production of space which will allow the hip bone to move into its rightful space in the abdominal wall.  No, by the way, Adam doesn't have two navels.  The upper one is the old g-tube stoma which held the mic-key that Drs. Phil and Sharon removed and got the old boy eating via mouth.


Again, ABR is a singularly effective therapy to normalize structures which collapsed as a result of brain injury...it's a parent intensive long haul, but changes develop along a predictable, yet non-linear, uneven path.  Nothing is simple in the world of severe disability.

Prior to ABR, you could not differentiate scapula nor
any of the cervical or thoracic vertebrae...now they are visible and
aligned.  Next project:  mid thoracic to sacrum straightening and
strengthening.  We're getting there!

The Singing Penis....

      This blog generally is full of rants, hope, Adam updates, tributes to mom and dad and periodical articles about pond scum.  Often, I write about ABR (Advanced Biomechanical Rehabilitation) and the resculpting of Adam's body and new devices that we employ to keep him healthy.  So much of this blog is meant to be educational and science based, so I need to continue in that thread...the pursuit of true, raw science.  We have so much to learn from nature.

The Water Boatman

     So I thought that I would share with you new information from the world of research and science. This link will take you to a CBS news article about the "singing penis."  I hope the knowledge allows for an expansion of your frontiers of thought.  You never know when you will need this information or when you want to share it with someone.  When I shared this with my wife, Sharon, she said that she believed I lost my mind...things like that happen.

     Or, if your seek a more authoritative source, BBC nature news.

       Life is learning, more and more each day!