Chapter Fourteen

              I wiped the sweat from my brow to keep it from dripping into my eyes as I pushed the clumsy mower up and down the steep terrain that was our yard. Although the grass was long and thick and the July sun scorching hot, I radiated with delight.

              The change from Connecticut to Pennsylvania had not improved the physical condition of my children, but it certainly had revitalized my innermost being.  Extended family surrounded and encouraged me faithfully.   My mother, who lived only two miles from our country home, came frequently to aid me in the twenty-four-hour care of Kari and Ryan.

              The house we rented sat on the bank of the Pequea Creek in the heart of Pennsylvania's Dutch Country.  From the porch that encircled our house we could see Amish farms sprinkled throughout the plush green rolling hills that surrounded our home.  Sightseeing tourists envied our picturesque setting.

              Not long after we arrived, the news had spread among the Amish community about our 'special' family.  The Amish are known to be generous, a reputation they soon demonstrated for us.  Within the first week of our arrival, many of our neighboring Amish women came to visit.  Several children trailed each mother as they hiked up the hill to our home.  They came to deliver the excess produce from their abundant gardens, fresh baked breads, pies, and homemade soups.  I exchanged a friendly conversation with the mother while the children sat quietly, watching my children.  We sipped ice tea and talked about the weather, but before she left she requested the 'story' of Kari and Ryan to pass along to her neighbors.

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              Kari and Ryan sat on the porch above me as I worked diligently at manicuring our little plot of ground, hoping to keep it as well groomed as that of our caring neighbors. The kids were enjoying the sensations of the outdoor atmosphere, hearing and feeling the warm breeze rustling through the large maple tree shading our house.  I cherished the time working in the yard.

              Growing up on a farm had given me a great appreciation for the open air and hard work.  I loved caring for my children, but I needed a break from their demanding routine. Seeing tangible accomplishments in my yard work was satisfying and rewarding.

              The progress within Kari and Ryan was slow. Their physical and intellectual abilities still functioned at a three-month-old level, despite their true ages.  After arriving in Lancaster, Dr. Clancy, a neurologist at Children's Hospital of Philadelphia (CHOP) followed their medical needs.

              Although they were siblings suffering from the same undiagnosed genetic condition, Dr. Clancy referred to them as yin and yang.  Their personality differences were that significant.  Ryan continued to be very high strung and Kari was quiet and mellow.

              As we settled back into the community in which Ron and I were raised, all was not positive.  It wasn't long before whispers of our "tragic family" rumored beyond our circle of influence.  It discouraged me to learn that others viewed our children as hopeless, time-consuming, and wasted lives before they took the time to know them.  What these strangers were missing or choosing to overlook was that Ron and I loved these two little people.  In return, Kari and Ryan had an extraordinary way of communicating their love for us and for life.  A few, who took time to get to know them, saw it too.

              Lois Woolston was one of those persons.  I first met Lois before ever having children. I had the opportunity to orient her to the Lancaster hospital unit in which we were employed.  Because of her quiet mannerisms and reserved emotions, my coworkers and I titled her the "mystery woman."  Lois was competent in her nursing skills, but I knew very little else about her.  Our conversations had only to do with our employment.

              After we moved to Connecticut, she made one visit to our family that was a pleasant surprise.  She wanted to see what church planting involved and meet our children.

              It was because of that visit and her correspondence by mail, that I learned to know a more sensitive side of Loie – our nickname for her.  She was a single woman with deep a concern for spiritual things.  Her interest in our children revealed her exceptionally caring and giving spirit.  When she learned our reason for moving back to Pennsylvania was our need for more assistance with the care of our children, she responded.  She visited on a weekly basis and became a student of Kari and Ryan.  She watched them and me closely as I performed the routine of their care.

              One day, after weeks of observation, Loie asked to finish feeding Kari.  Confident that she could complete the meticulous process, Loie placed the pureed spoonful in Kari's mouth.  Kari, aware that the change of hands had happened, curled her tongue, spewed the food back at Loie, and kicked the feeding bowl out of her hand.  She had properly initiated Loie into the world of caring for disabled children.  Loie determined to rise to the challenge of getting to know the character of these two children who were trapped in debilitated bodies.  It was not an easy task because their ways of communicating were so different from any other child.  Ryan gave her even a bigger challenge as he was doing for me as well.  His ways of declaring his needs were not so amiable.

              Not even a year old yet, Ryan had the same stubborn strong will of his mother.  On the outside both of us appeared lovable and warm, but inwardly we had a persistent determination to never give up, especially when the going was tough.  It was that will to fight that had caused Ryan to survive his first year of life.  Like Kari, he also was diagnosed as cortically blind; his brain was not responding to the message his eyes received.  Therefore, in his confused dark world he would fight us, the ones who wanted to show him love and acceptance.  He would scream and demand to be left alone in his own quiet space where he could feel in control.

              I, with just as much determination, kept insisting that he be part of all our family events.  I wanted to introduce him to the sights, sounds, smells and movements around him.  I refused to isolate him by abandoning him to a sterile quiet world.

              My efforts eventually paid off at Ryan's first birthday party.  His pre-school cousins, aunts, uncles and grandparents surrounded him.  Children squealing, party horns tooting, relatives hugging and squeezing his chubby body, laughter and conversation engulfed him.  Amidst the activity, his eyes twinkled and he smiled to let us all know he loved us and approved the love we were pouring on him.  Ryan's normally rigid body relaxed as he enjoyed his party.  He had much to battle in life.  Nothing was more rewarding to me than to teach him that there was much in the world around him that was not his enemy.

              The mystery disease that attacked the very core of our children's lives had symptoms that were relentless.  Seizures were the first indication that this disease would prohibit their chance to function as normal children, but as both of them continued to grow, it was also evident that other afflictions would make life a struggle for them.

              Because the condition originated in their brain, it did not send proper signals to the muscles and therefore their responses were inappropriate and unproductive.  Kari was flaccid as a Raggedy Ann doll and in contrast Ryan's muscle tone was very rigid.

              It happened to be Ryan's first birthday, when we had both children examined at a Cerebral Palsy (CP) clinic at A.I. Dupont Children's Hospital in Delaware by an orthopedic doctor, Dr. Freeman Miller.  This was their first exam of this nature.  Dr. Miller's prognosis for our children's future was not a happy one.  With a compassionate expression, he explained to Ron and me the difficulties Ryan and Kari would face as they grew older because of the CP.  We nodded understandingly as we were already seeing his predictions to be true in a significant area – a feeding problem with Ryan.

              We told Dr. Miller about Ryan losing his ability to suck and swallow correctly without choking.  The CP also affected his tongue muscle and he could not conquer the very natural phenomenon of eating.  Dr. Miller referred Ryan to a feeding specialist who explained to us that Ryan would eventually need a Gastrostomy tube (GT) inserted through his abdominal wall so we could feed him directly into his stomach.

              We learned many new and discouraging reports during that initial visit to Dupont, but Dr. Clancy's prediction a year earlier that seizures still would be the most difficult thing to manage, did hold true.

              A month after Ryan's birthday, our family retreated to a cabin in Northern Pennsylvania for a three-day vacation.  Ron wanted time away from his stress-filled job and I desired time off household responsibilities to be with my husband.  We assumed the refreshment and calmness that the mountain atmosphere offered would be good for all of us.

              Within minutes of arriving at our destination, Ryan noticed the change of surroundings and routine, and dealt with it like he did all change – he screamed non-stop for the first two days.  He had difficulty fitting something new into his very private world.

              When he finally realized that his caretakers had remained the same and it was only the house that was different, Ryan calmed on our final vacation night. We all relaxed, hoping for a good night sleep, only to be awakened at two in the morning by Kari who was having a horrible bed shaking seizure.  One-half-hour later and with several administrations of her seizure medication, she showed no sign of quitting the violent contractions.  We had to get her to a hospital – but where?  Unfortunately it was nothing we had researched before coming.  Now this serene setting had become a nightmare with no help or phone.  Ron woke a neighboring farmer and he gave directions to the closest hospital – thirty miles away.

              Over dark mountainous roads we went, winding through seemingly ghost towns nestled quietly along our way.  Ahead in the beam of our headlight we saw two eyes flashing back at us.  Ron swerved, narrowly missing a head on collision with the deer.  I hung on tightly to Kari's thrashing body in the back of the van.  I was grateful that it was dark so I could not see her body turning blue.  I knew we didn't have much time.

              Ron shouted back to me that he saw a sign for a hospital up ahead.  As he pulled into the emergency entrance our hearts sank.  The lights were off.  A sign on the door said "Closed!"

              "Joan, just get her inside that building," Ron hollered. I burst through the front doors with my convulsing blue child.  Immediately a nurse met me.  She took one look at Kari and frantically paged the doctor.  He arrived, grabbed Kari from me, and started an intravenous line while the nurse connected her to oxygen.  I stood in the corner, watching as other nurses arrived to assist.

              A nurse's aid pulled me aside and whispered, "Mrs. Denlinger, you are very fortunate that a doctor is here in the hospital tonight.  We only have twenty-four beds and it is extremely rare for any doctor to be in-house overnight.  Our Emergency Room is only open 8-5 Monday through Friday."  I smiled at her weakly, not sure if I should be relieved or worried.

              The doctor turned to me and asked if this had ever happened before.  In my brief history report of Kari's medical condition, I mentioned a neurologist at Children's Hospital of Philadelphia was following her.  His expression brightened and he asked what neurologist she saw.  Amazingly, he had just completed his training at CHOP and was very familiar with the physicians there.  He promptly placed a call to Dr. Clancy, Kari's neurologist, and received the information on how to treat her.

              Within two hours, we were heading home to the cabin with our sleeping little girl.  The sun was barely peeking above the horizon but life was returning to the same quiet villages we had passed a short time ago.  "Ron," I whispered, "it wasn't coincidence that a doctor was there tonight.  In this little out-of-the-way town, God providentially placed him there to save our daughter.  It wasn't Kari's time to leave us.  God gave her life once again."

              We parked our van in the grassy lot beside the cabin.  As I opened the van door, the fresh scent of the pine trees embraced us, as if to beckon: "come here and relax!"  The sky was clear but a thick fog still covered the floor of the forest.  I took a deep breath, desiring for this beautiful scenery to be impressed on my mind.   

              The time soon came for us to pack the van and say good-bye.  That day we traveled home from our vacation – weary from our attempt to relax.

              Ron returned to life in the fast lane of business, and I continued my vigilant care of the kids with their unpredictable medical needs.  Our marriage existed, but we failed to know how to energize each other.  Life was hard and filled with burdens.  We were blind to the ways we could fulfill each other’s needs.

              We celebrated a New Year, 1990, hoping for a healthier year for our children.  It soon became evident that this year would be no different, as uncontrollable seizures continued to plague both Kari and Ryan.  It was not unusual for me to witness 80-100 seizures a day between the two of them.  In mid January, I made an appointment with a new neurologist at A.I. duPont.  Dr. Marks took great interest in our children and wanted them admitted to the hospital immediately so he could start them on new medication, monitor medication blood levels, and continue testing for an underlying diagnosis.

              Room 233 A & B housed the Denlinger kids for eight days.  To make myself available for both, I placed my cot in the middle of the room in my new home away from home.  Not knowing which child to care for, when both were suffering, tore me apart.

              Wednesday, the first day of admission, was a busy one.  Along with the start of a new medication, each child was scheduled for a different procedure at the same time.  The doctor wanted Kari in the Operating Room for a tissue biopsy and Ryan was to have a Magnetic Resonance Imaging (MRI) scan of his brain.  I needed to decide whom to follow.  Because Kari's previous surgery experience was so traumatic I choose to stay with her and let Ryan go alone for his test.

              I sat in the surgical waiting room, trying to focus on the passage of Scripture before me.  Other parents in the small room either stared at the blaring TV in the corner, or paced back and forth sipping the free coffee available from the small kitchenette adjacent to the waiting area.  A crackling voice across the hospital paging system interrupted the tension in the room.  "Would the mother of Ryan Denlinger please report to the medical imaging area promptly?"  Never having been paged before, I paused, allowing the fact to sink in that this was not a good sign.  I quickly gathered my things.

              I took the steps to the ground floor, hoping to avoid the congestion at the elevator. I ran along the long corridor till I located the sign pointing me in the direction of the MRI testing area.  When I burst through the doors, the first thing I saw was the big red crash cart shoved alongside the table Ryan was resting on.  I had been involved in enough "code blue" crises in my nursing career, so after a quick assessment of the scene, I needed no explanation to realize what had happened.  Ryan had stopped breathing because of the heavy sedation and a team had just resuscitated him.

              When I neared the MRI table, the doctor stepped aside, permitting me to see my little boy.  The nurse quickly provided a rocking chair for me close to the bed and said that I may hold him.  His oxygen mask covered his face, but he fluttered opened his eyes when I picked him up.  As I sat rocking Ryan's quivering body, I wondered how much more this little boy could take.  He relaxed in my arms, as I silently prayed for strength for him and myself.

              The remaining hospitalization went more smoothly.  Both children responded to their new medication.  By the time they were discharged, their seizures were under control again for the time being.

              The remaining last months of winter were quiet ones, but by early spring Ryan's seizures were out of control again.  Throughout the spring and summer of 1990, I traveled with him in and out of the hospital. Kari's daily routine also was demanding and she seemed prone to pick up every virus that passed through our community.  As the summer came to a close, the children's health slowly improved and I looked forward to starting them in new "special needs" preschool programs.

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Ron's Reflections...

              Ryan didn’t enjoy a lot of stimulation.  Rather than be around people, who couldn’t resist pinching his chubby cheeks or would want to hold him, he constantly communicated that he was happiest in a dark, quiet room far away from anything and anybody.  As much as we wanted the little guy to be happy, we couldn’t grant him that wish.  Instead, we increased the stimulation, stretching him, helping him to tolerate more and more.

              We took our children just about everywhere that we went.  We didn’t shelter them from the world and neither did we hide them from society.  We love our children.  They are important members of our family and as such remain with us as much as possible. 

              Are there limits to how much such children can relate to their world?  Of course there are.  Their disabilities make it so.  They can’t communicate with us in ways that we ourselves would long for.  They certainly can’t interact with others as children normally do.  We couldn’t place them in a typical preschool program, expecting them to have the same experience in the world that others their age would have.  Therefore we sent them to that “special needs” preschool program.

              In light of who Ryan was, it was a great achievement for Ryan at that birthday party – when he had all his very noisy cousins surround him. It is true that he didn’t blow out the candles or pin any tail on a donkey (at least not without our help).  But we were so impressed that he didn’t go into overload and scream the whole time, as he previously would have done.  We were so proud that he was able to fit in – in his own little way. 

A successful family helps each member discover their place in the world.

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Copyright (c) 2002 by Ron and Joan Denlinger