Chapter Twelve

              'Silent Night' drifted softly from the lips of the angels surrounding the manger as the baby Jesus lay quietly in the hay.  Ryan played the part earnestly as if he understood the role of the Holy child – a perfect, sinless baby who came from Heaven for the salvation of mankind.  Would Ryan ever grasp the significance of this Holy Celebration?  I shifted in my seat as the Christmas pageant continued on the stage of our church auditorium.  Kari, disguised in a woolly sheep outfit, traveled in her stroller escorted by a lowly shepherd toward the place where Jesus lay.  I watched them proudly, feeling honored that the people of our new church granted positions for my children in the first Christmas pageant of Lebanon Bible Church.

              Three months after the birth of the new church, this successful event was a reward for the energy Ron poured into this new work.  The desire not to fail in this ministry venture and the commitment to serve God faithfully drove Ron to devote endless hours to this task.  This also allowed him little time to focus on our situation at home – life with two severely disabled children.

              I, on the other hand, absorbed myself in the responsibility of caring for Ryan and Kari.  It was an exhausting job, but my love for them and my desire to understand all I could about the care of raising handicapped children motivated me each day.  Conquering this new world was important for my survival as their mother.

              It took considerable physical and emotional energy for me to endure endless hours of children crying, maintain feeding and medication schedules, and implement therapy programs, while receiving a maximum of three hours of sleep at night.  This schedule blinded me from seeing needs beyond the care of my children, especially those of my husband.  I was hesitant to have too much of an interest in the new church work because I feared it would become a deterrent to my focus at home.

              One week before the contractors delivered our modular home to our well-prepared foundation, I suggested to Ron that perhaps we should have the house directed to Pennsylvania instead, and then move back there.  Instinctively I knew that I couldn't continue the round-the-clock care of Kari and Ryan without help of extended family.

              Ron accepted the comment like dynamite receiving a spark.  "Joan, you must be kidding!  Are you crazy?  Do you have no understanding of the work I have done on our land or my dream to pastor a church?"  My cheeks reddened and I vowed never again to speak about the issue. I was ashamed to have even considered giving in to defeat, being too willing to let go of our dreams.  The decision I made that day to recoil rather than confront the stress of our lives initiated the building of a wall within our marriage bond.

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

              Kari started attending an infant stimulation class three mornings a week shortly after Ryan's birth.  Frequently I would also attend to learn the exercises the therapists instituted with Kari.  I loved the times spent in the busy classroom, and enjoyed learning to know the teachers who loved and cared for my daughter.  They were not awkward around Kari or afraid to involve themselves in her life.  With her thick dark hair, dark eyes, pleasant smile and attitude, Kari attracted the staff.  Acceptance and love were abundant in that room and I felt at home there.

              Even though Kari's progress seemed very minimal, we all worked hard to bring her to her optimal level of functioning.  Beginning with head control, then hands to face coordination, to body rolling, cup sipping, eye acuity and weight bearing, everyone resolved that this two year old was going to complete their state required goals before she moved on to a preschool level.  I worked right along beside them, surrounding myself with these people and the families of Kari's classmates because we were in the same world, facing similar struggles.  We related to each other automatically.

              My surroundings at church, among neighbors, friends, and relatives, were threatening.  It was difficult to face the reality of normal development in healthy children.

              The world around me focused on moving ahead at lighting speed – raising kids to their full potential and encouraging them to be as good as their peers, if not better.  School systems encouraged children to be active and involved members of society.  Parents searched for the best training philosophies and education for their children.  Even within the church, there were advocates pushing for more education, involvement and recognition of our children, so that they would succeed and not look like strangers in our post-Christianized world.  The minuscule accomplishments of my daughter were tiny steps when compared to the fast pace of our society.  Kari was squeezed out of participation in a system designed for "successful" children.

              I felt jealous of other parents whose children measured up to the world's standards.  Parents who didn't appreciate the abilities of their healthy children angered me, and others who talked incessantly of their child's accomplishments intimidated me.  I flip-flopped between feeling like a failure for not having a child that was succeeding and then bouncing to another extreme – a state of anger and determination.  I wanted this world to accept my daughter, yet I knew they would only if she succeeded.  So I threw myself all the more into her world.  I had to draw her out and find her potential!  During this process, I lost God's perspective and my joy.

              I enrolled Ryan, at three months of age, in an infant stimulation program.  I had more hope for his development because he didn't have the devastating Infantile Spasms that continued to bombard Kari's brain.  Because of his young age, a therapist named Amy came to our home to work with Ryan.

              Amy was a dedicated, loving person who fell in love with Ryan and our family.  Ryan was always alert and ready for Amy's attention but he set the boundaries.  When she pushed those limits, he fought back, determined to control his environment.  She loved his feisty attitude and became a good match for him.  She nicknamed him "handsome" and treated him as His Royal Highness.  Kari with her mellow do-what-ever-you want attitude received the nickname "Princess."  I don't believe Amy remembered their given names as these pet names overruled.  Amy received my full attention because she was my guide through this foreign land that had captured me.

              Ron was rarely a part of the children's therapy lessons and I did very little to communicate to him what I was learning about their care.  I assumed that his intense ministry schedule was his way of telling me that the needs of our children overwhelmed him.  He seemed focused on what he could control.  I did not have the energy or desire to keep up with his schedule.  We silently consented to be alone in each of our assignments, afraid to be vulnerable and ask for the nurturing we both needed so desperately.

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

              Christmas season brought with it a break from the therapy and school routine.  We planned on traveling Christmas day to Lancaster, Pennsylvania for a week vacation.  The time there would be busy, celebrating holiday parties and getting re-acquainted with friends and family, many of whom had not met Ryan. The church's pageant was over so I was eager to spend a quiet Christmas Eve at home together as a family before our trip.

              A week before Christmas we had moved into our new home.  Although delivered at least a month earlier, it took a number of weeks until we could complete the requirements to get our certificate of occupancy.  When we moved in, the electric company still had not connected us to their power.  The temperature dropped in the single digits that week, so Ron rigged up a wood stove that kept us warm and a friend loaned us a generator that produced enough electricity to take a hot shower in the morning, and cook our dinner in the evening.

              The day before Christmas, I packed Kari and Ryan into their car seats and drove the ten miles to the nearest grocery store.  Once there, I settled them both in their special chairs inside a shopping cart and pushed past crowds of people who smiled at my charming arrangement.  Their seats occupied the entire cart and left little room for food.

              It seemed much hassle for just the few items that I needed, but I wanted this holiday dinner to be special, containing Ron's favorites: shrimp cocktail and steak smothered in mushrooms and onions.  I wanted to show Ron through this meal that I loved him and I hoped things would be better soon.  I knew we were drifting apart emotionally over the past few months, but was unsure of how it happened.

              When I arrived home, I was relieved to see that Ron was not there so that I could surprise him with this special meal.  I quickly fed the kids, gave them their seizure medication and settled them in their cribs.

              Before I exited their room, I paused at the door.  A warm sensation overcame me.  I allowed the feeling to cuddle me for a few moments before I rushed back to my dinner preparations.  I was a blessed woman.  I had a new house that I loved, I was on top of my kid's health situation at the moment, and Ron and I were providing a warm cozy home for them to grow.  I also had a husband who, despite our recent decline in communication, really did love me.

              For a moment, I felt the joy I had before Ryan's birth and I realized that the worry and stress of his life had been robbing me of this emotion that once was so abundant.  I wanted that happiness back.  Tonight's celebration, I determined, would be the start of our family communication again.

              Enough of reflections, I dashed into the spare bedroom closet, dug out the few Christmas decorations I strategically hid during the chaos of our recent move, and carefully placed them around the house.

              Suddenly, Ron came bursting through the front door with a grin on his face.  As he flicked on a wall switch, light filled the living room.  He picked me up and swung me around the room laughing.  He had persuaded the electric company to connect us to their power in time for Christmas.

              The evening dinner was a delightful success.  Warmed by our electric heat and Christmas candles glowing from all darkened corners, the atmosphere was just perfect.  A newly fallen snow covered the New England landscape outside our dining room window.  I had prepared the food with great care and it smelled and looked delicious on our decorated table.

              Handel's "Messiah" played in the background as we settled the children in their seats.  They both sat quietly, tuned into the activity, aware that something special was happening.  Kari's eyes darted about trying to focus on our celebration.  Ryan seemed content to allow us a few moments of eating enjoyment since his tummy was full.  We bowed our heads in prayer as Ron thanked God for sending His Son and for giving us this special Christmas season.

              Our evening was peaceful and the affection felt that night would certainly nourish us for the months ahead.  God in his great wisdom was showing us what love could look like when we gave to each other selflessly, just as He had sacrificially given His Son as a baby.

              Unfortunately the dismal days of January overshadowed the memories of our Christmas Eve dinner.   Dr. Russman arranged an appointment for our children to see a doctor in New York City who specialized in metabolic, genetic diseases.  The slight elevation in Ryan's blood lactic acid level indicated to the neurologist that he might be getting closer to discovering the disease that afflicted our children.  Dr. Russman noted that if the diagnosis could be made, he could treat the root problem and not just the symptoms.  The hope that something more could be done to help our children develop, made everyone excited; Dr. Russman, the kid's therapist, our family physician, but most of all Ron and me.

              On a bleak, bitter cold January day, we drove the two-and-a-half-hours to the immense Upper Manhattan hospital.  The sky was gray, the ground was frozen, and cinder-covered snow piles lined the city streets.  As we entered Columbia Presbyterian Hospital, we encountered large and echoing hallways.  Ron and I, each laden down with a child, diaper bag and medical records that Dr. Russman sent along with us, searched for the Department of Metabolics.

              Dr. DeVivo was ready for us when we finally arrived at his door.  The oversized office immediately created an eerie sense within me; the room looked as if it may have once housed a Tuberculosis sanitarium.  Even though the room had large stained glass windows, the skyscrapers outside prevented them from displaying their full beauty as they were blocked from much of the sun.  The floor was old tile, stained by years of abuse.  The olive green walls looked as though they had been around long enough to tell many pathetic stories of suffering.

              Chills went up my spine as I wondered what might await us here.  Dr. DeVivo started to speak from behind his large clumsy mahogany desk.  It was obvious by his dull mannerisms that his specialty was research and not in building patient rapport, but that was okay.  We weren't here to have a friendly feel-good chat.  We wanted to get down to business.

              Our family intrigued him – this family with two children two years apart and supposedly afflicted with a similar condition.  The lack of any real clues to their problem added to his challenge.  He seemed determined to conquer their disorder and be the first to treat them and give them more quality of life.

              After a few minutes of explanation of his intentions, he took Kari and Ryan individually into a side room only big enough for an exam table.  He worked silently just beyond our vision, taking a full hour to complete his exams before reappearing.

              With a sweep of his arm he invited us to sit.  He than began explaining in technical terms the metabolic trail he would be taking to search for this mysterious disease.  He gave us the name of a condition that he was hoping his further testing would reveal.  Ron and I intently scratched out on paper, in phonetic spelling where needed, every word he said.

              He wanted to admit Kari soon for the tests he needed to perform to test his theory, promising it would be only a two day stay.  In the meantime he wanted to submit all of her records to a nationwide computer database system with the National Organization for Rare Diseases (NORD).  Through this network, her symptoms could be compared with others whose condition had similar characteristics.  Before we left, a hospitalization was scheduled for two weeks.  We went home to wait.

              During our waiting time, Ryan became increasingly irritable.  At six months of age, he no longer took pleasure in nursing.  He screamed incessantly night and day.  Finally, in desperation, I quit nursing and switched him to formula.

              The change was helpful, but temporary as he soon returned to a constant state of misery.  He cried whenever awake, which seemed a majority of the day and night.  Most of the time, rocking him did nothing more than cause further irritation.  I went about my household chores to the sound of his shrill cry.  He would eventually exhaust himself, sleeping only long enough to recharge him for another two-hour round of screaming.  "Oh God," I wept one morning.  "I'm so exhausted, what is it that you are trying to teach me?"  God seemed silent.  I couldn't remember hearing Him since Christmas.

              The winter days were long.  I felt like a caged animal in my house.  Ron spent hours in his office, meeting with people or preparing Bible studies and sermons.  During his break times, he would chop wood for the stove and do other jobs around our new home, taking great pleasure in each of these tasks.

              Daily I received encouraging cards and letters from friends in Lancaster – the word having reached them about Ryan's symptoms.  They shared their love and concern for our family with promises to keep praying for us.  I sat on the couch each day after the mailman came and devoured every word on each card, looking up every Scripture reference enclosed.  I appreciated their support, but I still felt very alone and exhausted in my daily routine.

              Kari experienced many types of seizures but she now began to have a large increase in a form of Grand-Mal seizure.  With no warning, her body would convulse violently for several seconds before she would collapse in sleep.  This occurred many times throughout the day, despite a recent increase in her medication.

              One morning, I awoke from another night of catnaps.  Between Kari's seizures and Ryan's extreme irritability, there was little time left to sleep.  I needed to find a motivating project to energize me for the day.  I decided to try my luck at playing photographer.

              I had given up taking Kari to a professional photographer when she was an infant.  The ability it took to get her positioned so she wouldn't look abnormal and the patience needed to wait until her eyes were open and focused ahead, went far beyond any normal photographer's call of duty and sitting fee.  At best, the outcome was very different from the perfectly posed, adorable children's prints decorating the walls of his studio.

              My last appointment was a complete disaster.  I left the studio in tears determined that I would never put Kari or myself through that again.

              The only good print we had of Kari was her year-old picture.  Ryan, at six months, still had no picture of himself.  So today, I thought I would set up my own studio in the basement and chase away the winter blues with this industrious project.

              First, Kari needed a haircut.  I packed them both in the car and headed to the first available hair salon.  Kari sat quietly on my lap as the hairdresser snipped away her thick wavy curls, creating a cute bob.  She finished, I paid her, and than placed Kari's cap back on and hurried home.

              When I removed the cap, I gasped in horror.  She looked awful!  Her short hair stuck to the side of her head and her bangs sprayed out like a rooster.  At that moment   her body convulsed in a seizure.

              "Oh God, she looks so handicapped!  I've never seen her look so pathetic!"  I moaned.  For a brief moment I saw her as one of the institutionalized handicapped children in the home where I worked during nursing school.  Even the smell of that depressing place came to mind and made me nauseous.

              "This was to be my special day?"  I had destroyed my daughter with an obnoxious haircut – I, who took great pride in keeping Kari dressed and groomed beautifully, wanting to remove any further chances of her being rejected by the "normal" world.

              I scooped her up and placed her in a hot soapy tub and shampooed her hair, then dressed her in a frilly blue frock.  I stood back and gazed at her, my precious princess having returned to me.

              Ron helped set up his photography equipment and focused the camera.  Than we both spent the next four hours doing physical, mental and emotional gymnastics to get both children to cooperate with my agenda.  The hard work was well worth it.  They both smiled beautifully.  Our reward was pictures that remain my favorite to this day.

              Two days after the photo extravaganza, we had Kari admitted to Columbia Presbyterian Hospital for her prearranged diagnostic work-up.  The large hospital intimidated me – not nearly as child-friendly as Newington in its appearance.  Kari and I chose to stay close to her room.  Kari's first test was a simple muscle tissue biopsy.  She was to have general anesthesia, but even at that the whole procedure was to take no more than one hour.

              As I sat in the holding area cuddling her flaccid thin body, I thought how fragile her life was and how dependent I had become on God for His daily strength.  As we waited, Ron prayed, asking God to send His angels to guard our baby during her surgery.  Soon a nurse, dressed in her operating room garb, arrived to take Kari away, reassuring us as she left, "Don't worry Dad and Mom, she'll be fine!"

              Eight hours later Kari emerged from the Recovery Room with us by her side – exhausted, famished, but finally feeling relief.  While under anesthesia on the operating table, Kari had begun to seize.  The doctor called us in to be with her in the recovery room when her seizing would not stop.  After five hours of potent intravenous seizure medications, frequent suctioning of her lungs and administration of oxygen, her convulsing body finally relaxed.  The experience terrified us.  We attributed her survival to angels who rescued her from another life-threatening encounter.  The incident required her to stay an extra day in the hospital until the completion of all the tests.  We went home, not knowing any more as it would take weeks for all the results to be formulated

              An abundant number of distressing ingredients for creating a family crisis were present as we awaited a hopeful diagnosis for our children.  We had endured days and nights of seizures, rigid feeding and medication schedules in two severely disabled irritable kids, dreary winter weather, and the pressure of a new ministry.  We were exhausted.  The dam was about to break.

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

Ron's Reflections...

              Within a few months time we experienced the birth of a new baby, church and house.  Labor was involved in bringing each into existence.  Much attention and energy was required to give appropriate ongoing care to each.  We had been eagerly looking forward to the addition of each of them in our lives.  We knew it would be a busy time, but we had braced ourselves for that, or so we thought. 

              If Ryan had been a normal infant with typical needs, in the context of the other things going on in our lives at that time, we would have been a couple of tired parents.  But to say we were tired under these circumstances would be a gross understatement.  We were exhausted.

              I don’t remember us ever sitting down for a lengthy conversation about the stresses of our lives, of thinking through what we could cut out in order to reduce the busyness of our schedules.  For one, I don’t remember us sitting down all that much, at least not to relax.  We sat to feed a child, to study, to discuss a church matter.  And there was nothing to talk about as far as reducing the workload. 

              I had a church to care for.  That was why I was in New England.  It was my work, the means of providing for my family.  I couldn’t stop planting the church and hope to survive, any more than a factory worker could stop punching the clock and yet expect the paychecks to keep coming.  Joan couldn’t stop caring for household duties.  Dirt, dishes and laundry didn’t stop accumulating just because we had more important things to do.  These things demanded our attention as well.  And then there were the children – most consuming of all.  We loved them and did whatever we could to meet their many needs.  All of this to say, none of our work was optional.  There was no luxury overtime to cut.

              We worked hard, caught a few hours sleep here and there between feeding and settling children, and awakened to work some more.  And that was okay.  We were willing to do it.  The problem was we were moving at a pace we couldn’t sustain, without any breaks in sight.  But I’m not sure what other option we had.  Our working hard was the loving thing to do. 

A successful family works willingly, even to the point of exhaustion,

in caring for its members.

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Copyright (c) 2002 by Ron and Joan Denlinger