Chapter Ten

              We scurried about the large auditorium like squirrels preparing for winter.  It was September 25, 1988, a beautiful crisp fall morning in New England.  Our little group was preparing for our first Sunday morning service.  Each of us was busy with a specific job, intent on converting the school gymnasium into a place suitable for worship.

              Earlier we extended invitations to many neighbors and friends in town.  For the community we had an informational flyer inserted in the local paper.  On it a picture of our family was prominent with a brief introduction of us and a description of our plans for the new church.

              We wanted to reach the general population of the area with this information for two reasons.  We hoped to spark interest in some who were looking for a church.  We also realized that in this small New England community it would be best to be out in the open and try to head off any misinformation or suspicion about who we were and what we were doing.  With these and other preparations behind us, we eagerly awaited the response.

              Ed Calderwood pulled chairs from underneath the stage, unfolded them and carefully lined them in rows.  For the size of our group, the use of the stage was out of the question. Instead, we placed a small lectern on the floor before the platform.  The chairs began to take the form of a semi-circle, all facing the pulpit.

              In many ways, Ed was a typical New Englander, probably more so than most who lived in Connecticut.  His accent, quiet way and mannerisms revealed that his roots were from a place farther north in Vermont, one of the pure New England states.  Though not very verbal, Ed was a man of spiritual conviction and a key support to my husband in this new ministry venture.  He felt most comfortable quietly serving behind the scenes.

              As we worked, Ed had a way of keeping the atmosphere lighthearted and cheery.  He spotted anyone who was taking things too seriously and failing to enjoy this special day.  At one point, I became frazzled, not being able to locate some of my teaching tools. He approached me, whispering something in my ear as though he had a thoughtful point to make.  Instead, what he told me was one of his tidbits of dry humor.  He stood back with a sly grin on his face, waiting for me to catch his wit.  It worked.  I relaxed, and back to work we went.

              Off to the side Tom was busily setting up a sound system.  An electronics expert, Tom focused on this contribution he was making.  Dressed in a suit and tie, he appeared to be a little out of his comfort zone.  I was accustomed in seeing him in one of the service uniforms he wore the other six days of the week.  A perfectionist, he labored with diligence and precision.  As a single dad and a young believer, Tom never lacked enthusiasm for his daughters or for the way God was at work in his life.  When he saw me watching him, he stopped long enough to say, "Isn't this exciting?  God is really going to do something great here today!"

              Back by the entrance to our "sanctuary," the Harrises worked on setting up a literature table.  Beside the guest book and neatly printed bulletins was the offering box.

Carlton, a carpenter by trade, had crafted it in the shape of a church.  He decided to keep the project a secret until today, and proudly presented it while we admired his work.

              Our group had decided that we would not pass the traditional offering plate.  We didn't want people to feel pressured to give.  We reasoned that if God wanted this church to succeed, He could do it without coercion from us.

              Carlton's wife Renee offered to be the church's treasurer.  She was a bubbly, talkative woman with unlimited energy.  The only one matching her animation was her one-year-old son.  At the moment, she was chasing down young Jonathan who saw our meeting place as a huge playground.  Renee was trying desperately to calm him for the service.

              Paula Calderwood worked with Tom in testing out the sound system as she practiced her special music.  She appeared serene, yet had her nervous smile that told me it would be good to pray for her.  I went behind the large stage curtain and whispered a prayer for her and for the hour ahead.

              Ron and I had arrived early so I could set up my primary Sunday School Class and nurse Ryan before the others came.  Now as I helped with the last minute preparations, the teen-age girls were cooing over my handsome little newborn and fussing with Kari's thick, wavy hair.  Seeing my children occupied, I stole over to Ron's side and slipped my hand in his.  My squeeze was a reassuring signal that I thought he was doing a professional job of greeting the people arriving.

              Some of the folks we knew from the weekly Bible Study, and we were glad to see each one.  I smiled when the Dickinson family came through the set of glass double doors with their four children in tow.  Each one was dressed handsomely, clothed with attitudes prepared to worship.  They filled the front row.

              Quietly, others that were unfamiliar arrived.  They had seen the flyer and had enough of a pioneer spirit to try out this new church.  Their presence added much to our excitement.

              By the time the service began, 42 people had gathered for the occasion.  I gathered the children and led them in singing and a Bible story while the adults met for coffee and Bible study.  Then we joined for the worship time as Ron led us and presented his well-prepared sermon.  I proudly joined him at the back of the auditorium following the service to greet the people as they left.  They seemed truly sincere in their compliments of the day.

              This was our first experience in starting a church and the event left us with mixed emotions.  Both of us had always attended well-established churches with an attendance of at least 100 people.  Because of the smallness of our new congregation, I had the odd feeling that I was a little girl playing "house."  I hoped that, just as those days grew into my being a real mom with real children, so one day this "playing church" would feel like a real house of worship.  On our drive home that afternoon, Ron shared that the service brought back feelings similar to his back porch preaching days.  At any moment, he expected to hear his little sister's bored sigh.

              Our first Sunday service was an exciting adventure.  I felt great joy within me as we ministered to people that day.  Only occasionally did a nagging thought interrupt the celebration I experienced.  I tried hard to keep the dark fear suppressed in a far corner of my mind, for my desire was to give my full attention to these precious people.  The last thing I wanted was for anyone to sense a concern I had over my son -- I prayed it was unfounded.

              Ryan was a chubby, dark haired, dark eyed little boy.  At only two weeks of age, his little round face and squinty eyes had earned him the nickname of "little China boy."  Like many newborns, he attracted attention with his adorable looks, gas-induced smiles, and his cute wiggles.  One of his movements, however, had frightened me since the day I brought him home from the hospital.

              Mother had come from Pennsylvania when I arrived home from the hospital to assist me.  She kept active with Kari and doing household chores, so I usually sat alone while nursing Ryan.  During these quiet times, I noticed his one leg jerk while he suckled at my breast.  Jerking movements were something I was familiar with because of Kari's severe seizure disorder.  What I witnessed disturbed me.  I didn't want to believe my suspicions, so I said nothing.

              The last evening of my mother's visit, she was relaxing with me in our living room when Ryan awoke. In his charming newborn style, he requested his dinner.  I started to nurse him; within a few minutes, Ryan's leg began to jump as it had many times before.  I concentrated on feeding my son but I could sense mom's gaze fixed on Ryan's leg.  Panic rose within me.  The fearful secret was bursting out.  With her stare burning the veil that concealed my heart, I knew I needed to address the obvious.

              "Mom, do you think this kicking is normal?"  I tried desperately to show no real concern.  I only wanted to test her thoughts.  Mom said nothing but I knew by the expression on her face, that she too was concerned. Like me, she was afraid to verbalize it.  We turned our conversation elsewhere, changing the subject, hoping it would go away.

              The day after mom went home; Ryan had his one-week checkup.  The nurse quickly did her routine assessment while Ryan lay quietly with a wide-eyed stare.  Weight, head circumference, reflexes, skin color all were normal for his age.  "Mrs. Denlinger, you have a beautiful, healthy little boy!" she said cheerfully as she washed her hands.

              As she made her exit to find the doctor, I interrupted her.  "Oh, just one question before you leave," I said casually.  "Ryan has been displaying some occasional rhythmic movements of his left leg when I nurse him.  Is this anything to be concerned about?"

              "Mrs. Denlinger," she responded with a patronizing tone.  "Don't be paranoid.  Just because Kari has seizures doesn't indicate that Ryan will.  Jerking movements are very normal for a newborn.  Your son looks wonderful.  Relax and enjoy him!"

              I still felt humiliated when Dr. Kelly came in.  Evidently, the nurse told him nothing of my concerns. Neither did I.

              I left the office convinced that I had been foolish for thinking such negative thoughts concerning my son's health.  Even though I possessed an RN license and a mother's intuition, occasionally I lacked confidence.  My life revolved around nurturing and caring for my kids, and I did not want to neglect something important.

              Driving home, I thought about how fulfilled I was in my mothering role even though it allowed little time for other interests.  Between Kari's disabilities, and my newborn, it felt as if I had infant twins.

              At home, the wall hanging carefully positioned above the changing table reminded me, "There is no higher calling in life than raising the children God entrusted to your care."  I quickly changed the children's diapers and smiled.  Yes, Lord, what a good feeling it is knowing I'm doing exactly what You want me to do at this time in my life.  When the children are older, then I will return to my nursing career.

              That evening, Ron relaxed at home with his family.  He was relieved at not having other commitments, even though it was the week leading up to our first church service.  He sat holding Kari while watching the news, as I nursed Ryan. Again, Ryan's leg began to jerk and my dreadful fear crept out where I could not suppress it any longer.

              "Ron, could you look at Ryan for a second?" I asked cautiously during a commercial.

              Ron watched Ryan intently. "What is he doing?"  I quickly spilled the whole story, including the reassurance of the nurse that everything was fine.  The commercials ended and we both resumed staring at the TV, but I sensed Ron's attention was no longer on the news.

              "How about we just watch him for a few days?"  I said when Ron flicked off the TV.  I thought it best to speak first, before Ron had a chance.  I knew from the expression on his face that his concerns were the same as my own.  I didn't want him to verbalize them, needing to keep our emotions in check for the week ahead of us.

              Ron was focused on the preparations that needed to be done for our opening Sunday as Lebanon Bible Church. I remained at home and very attentive to Ryan's activity but I did not witness any more jerking episodes for days.

              Then Wednesday night Ryan awoke at 2 AM to eat.  I shuffled through the dark bedroom to his crib and sat on the rocking chair with the lights off to avoid disturbing Ron.  Ryan latched on as usual and sucked vigorously.  Subtly, the twitching began in his leg then suddenly his whole body shook, his head repeatedly striking my chest.  He cried out, unable to control the unwelcome wrenching of his body.  During brief respites, he desperately searched for my nipple but each time his face hurled into a different direction than he intended.  Frustrated, he screamed until the jerking subsided.  I sat sobbing as he finished his nighttime snack.  The ordeal did not waken my soundly sleeping husband.

              I crawled back into bed after Ryan settled in his.  As I lay there, with the truth staring me in the face, my fears finally overtook me.  I knew I could no longer deny that something was wrong.

              Thursday morning I awoke to Ron placing Ryan beside me.  Four hours had passed and he was ready to eat again.  As I began to nurse, he again repeated the nighttime incident.  This time it was more forceful.  Ron couldn't help seeing.  I called Dr. Kelly's office immediately and described the body jerking episodes to the nurse.  In her most professional voice she responded, "Mrs. Denlinger, I still don't think anything is wrong with Ryan.  Our schedule is full all day but if you insist on an appointment, bring him in at the end of our hours -- at eight tonight."  I insisted!

              In contrast to the last visit, I entered the office feeling empowered with my husband beside me.  If there was anyone who wanted to deny that my son was having seizures it was I.  Stronger than my denial, was my love for Ryan. I knew something was not right!

              On our arrival, Dr. Kelly listened to our story and then told us to sit in his office while he finished up his paper work in another room.  If Ryan did anything unusual we were to call him.

              Ryan lay awake squeezing my fingers in his tiny hands.  He looked adorable in his little bear suit.  After thirty minutes of waiting and our watching Ryan's every move, Dr. Kelly reappeared.  He suggested I nurse Ryan, since that is when I had usually observed these episodes.  Despite feeling very uncomfortable nursing my son in front of him, I followed through, determined to do whatever it took to get that skeptical look off the doctor's face. 

              Ryan nursed quietly as he often did.  Satisfied, Dr. Kelly dismissed us and turned to leave the room.  Undaunted, Ron firmly addressed his back.  "Dr. Kelly, Ryan has had several episodes of rhythmic jerking.  It does not look normal to us."  Dr. Kelly spun around as though he heard it for the first time. "Did you say 'rhythmic' jerking?"

              "Yes, Dr. Kelly that is what we've been saying!"  We again shared our story in detail. 

              I heard a hint of urgency in his voice as he continued.  "You should contact Dr. Russman tomorrow.  Better yet, let me call him and I'll get back to you as soon as I can!"

              We left the office feeling somewhat rewarded that at least Ryan was getting attention, although we were unsure of what that would mean.

              The phone rang at seven the next morning.  "Mrs. Denlinger, this is Dr. Russman.  I understand you've been having some problems with your son.  Could you have him here at Newington today?  I have him scheduled for an EEG."

              Late Friday afternoon, Ron and I crammed into a small quiet EEG room.  We waited and watched the technician connect the electrodes to our son's small head.

              "Lord are you here?  Do you see what we are going through?"  My mind was racing as Ryan lay sedated on the table.  The technician completed her preparatory work than she turned on the switch.  Reading an EEG print out was not one of my specialties, but I could see immediately there were no hyper arrhythmic spikes that would diagnose the devastating Infantile Spasm disorder.

              Ron searched my face for any clue what the multiple rows of scribble on the sheet of paper indicated.  I gave him two thumbs up at one point and saw the stress lines in his face ease.  The technician turned off the machine and informed us that it was too late in the day for the complete reading of the EEG report.

              After looking briefly at the EEG script, Dr. Russman was hesitant to make any definite interpretation, though he did confirm my observation of no recorded Infantile Spasm spikes.  He said he would see us Monday morning with the complete results.

              We left the hospital relieved, but the nagging questions continued.  Were we paranoid parents?  What were those episodes that so clearly looked like seizures?  We told no one of our trip to the hospital or the warning flags that we had seen.  This weekend we needed to purposely lay aside all our fears, to focus on our first church service just two days away.

* * * * * * * * * * * * * *

              Two weeks passed and Ryan showed no more seizure activity.  We hoped we were wrong in our evaluation of his previous episodes. We wanted life to return to a more relaxed schedule as we anticipated the winter ahead.

* * * * * * * * * * *

Ron's Reflections...

              Shortly before we moved to Connecticut we were at a family picnic – one of those fun Weaver gatherings.  It was there that we received one of our greatest encouragements for our moving out into ministry in spite of our having a handicapped child. 

              Uncle Dale told Joan and me how happy he was to hear that we were going forward with our plans to go out into missionary service.  He shared it so emphatically that we knew he felt strongly about what he was communicating.  He added that, through his work in the medical field, he had seen several families who had a child with a disability who focused all their attention and energy on that child.  I don’t recall what he specifically said about the consequences of that, but I remember him saying that the outcome wasn’t positive.  He acknowledged that it seems right to put all one’s focus into a needy child, but he encouraged us to not isolate ourselves but to serve others as well as our precious daughter.

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Copyright (c) 2002 by Ron and Joan Denlinger