Chapter Eleven

              The New England October air turned brisk.  Trees were already barren and deer gleaned the harvested fields for remaining corn.  The autumn celebration days ended on the town green.  Men cleared the area of booths and flooded the large grassy field, creating a skating rink for the cold winter months.

              I also was eager for a new season. Kari and Ryan were both healthy and I desired to integrate them into our ministry work. Ron and I made plans to make pastoral visits and neighborhood contacts, and Kari and Ryan traveled with us.  The church people adored them, and our neighbors opened their doors to us willingly when they saw Ron and me, each laden with a baby.

              I never worried about receiving help with my children when we met for our church services.  Even when hosting meals, I became very efficient in handing off Kari and Ryan to our guests while I prepared dinner.  I enjoyed teaching our friends how to feed Kari and they in return felt honored to help her.  Ryan's chubby grins were attention getting, and it was never a problem finding someone who feed and rock him.

              Our dream of ministry was unfolding and I felt rewarded.  The insecurity that I had felt about leaving my hospital job to become a full-time mother and missionary no longer troubled me.  Helping my husband succeed in his career and working along side him fulfilled me.  Ron and I made an effective team as we ministered, counseled, and worked through many issues concerning church planting.  We were discovering the strengths and weaknesses of our different personalities and were using them to benefit our work.

              The common struggle of overcoming daily life with a handicapped daughter was deepening our appreciation of one another, instead of pulling us apart – what we often observed among other marriages in families with disabled children.  It appeared more common for a family to be torn apart from the added stress of the child's care than to be made stronger.  We hoped this wouldn’t be true of us some day.  After all, right now we had much to be looking forward to – helping a new healthy church grow and raising our son.

              We lay in bed one Sunday evening following another busy day.  Ron held me gently, my face against his muscular chest.  The children were sleeping for the night.  "You know Joan?" Ron reflected, "I think Ryan's life is much like mine.  Soon after my brother Laverne was diagnosed with Cystic Fibrosis (CF), the doctor told my parents that he thought I had it also.  Only after numerous CF tests were negative did they finally conclude that I was okay.  That was a difficult time for my parents.  Now I wonder if we are going through that same experience."  I leaned back into my pillow and thought about what he said.  Certainly he was right.

              Even after weeks of no seizures, we both had continued nagging doubts about Ryan's health.  Could this be God's way of testing our character – checking to see if we would trust Him?  Ryan will be just fine!

              I sat up in bed and impulsively started to tickle Ron.  "Oh no!  This kid is going to be just like you, Honey!"  I laughed, eyes twinkling with mischief, "my job will be to keep him from getting too stuffy!  Ryan needs just a little bit of his mom's fun-loving personality."

              I lied down again and let my mind drift to Ron's statement as he picked up a book to read.  Was this a test of God?  Even more significant, was I passing the test?  I hoped so.

              Despite the nagging fears, outwardly I still displayed a very happy, warm appearance.  I was always ready for a good party and to be in on the latest joke.  Our new friends at the church quickly discovered that I was an easy target to tease and I loved it.  In this sense, I was a typical youngest sibling.  Although during my childhood my brothers and sister and I rarely fought, I, as the youngest, did get my share of being tormented, but I loved their attention.  Now too as an adult, I still enjoyed being the brunt of many jokes.

              Ron, on the other hand, provided me with a view of the more sane and serious side of life. He was always philosophizing about anything from the meaning of life to why people act the way they do.  I kept him from getting too buried in an introspective thoughtful world, with my sense of humor.  He taught me to be sensitive and responsive to the pain in the people around us, even those who hid it well.  We complemented each other well, and I realized our different traits were a huge advantage toward providing a healthy home for our children.

              Ryan would need to know that joy and laughter can coincide with the suffering that his sister daily displayed.  Our hope was that Ryan would grow up having a tender heart towards those who are underdogs in this world, and experience the happiness that trusting God can bring even in troubling circumstances.

              That week I had finished reading the book "Power of the Powerless" by Christopher deVinck.  Raised in a home with a sibling much like Kari, Mr. DeVinck beautifully describes the value of his brother's life.  The book inspired me as I reflected on the ways this wordless, helpless brother affected Paul's life.  The author himself displayed wonderful Christ-like character as he allowed this very weak sibling to teach him wisdom for life – wisdom that is almost impossible to learn except through suffering.  I desired that kind of insight for Ryan.

              Ron and I drifted off to sleep on a pillow of peace.  God was with us and had His best in store for us.

              A few minutes later a loud cry from Kari wakened me.  I lowered her crib rail just in time to see her dispose her evening bottle all over the sheets.  She was burning with fever and struggling to breathe.  The coziness of my sentimental dreams ended with the reality of the night growing cold around me.

              Kari had another upper respiratory virus complete with croup, fever and an upset stomach.  The remainder of the night, I sat in the bathroom with Kari, shower running, trying to humidify and loosen her constricted bronchial tubes.  Ron came in at 6:00 a.m. to relieve me so I could go pacify our screaming, starving infant.  Groping my way to Ryan's room, I picked him up and he quieted to my touch.  He knew breakfast was on its way.

              As I started to nurse, Ryan's leg began to twitch like a cat's tail.  Soon the jerking was so hard he could not suck.  He was victim to this uncontrollable force.  His head thrashed into my chest.  I hugged his convulsing body and cried out for Ron to come.  He witnessed the distressing scene and immediately left to call Dr. Russman.  The neurologist asked us to bring Ryan right away to the children's hospital – an hour's drive from our home.

              "Ron, do you mind taking him?"  I asked wearily.  "I really need to get some rest.  Maybe he just has the flu like Kari and fever induced his seizure."  As they drove off, I envisioned Dr. Russman examining Ryan.  Maybe he would do a blood test or two, ask a few questions of Ron and send them on their way with a diagnosis of Influenza.  Exhausted from being awake all night, Kari slept soundly in her crib, so I crawled into my own bed, feeling somewhat guilty that we had to disturb a pediatric neurologist for a simple thing like a cold.

              The phone must have rung several times before waking me.  Ron sounded a bit annoyed that it took me so long to answer it.  His voice was urgent, "Joan, Ryan is being admitted.  Come right away!  I'll explain everything when you get here!"

              Click.  The dial tone droned on.  Was this a bad dream?  Did I hear him correctly?  What did he want me to do?  My body started shivering as the fog started to clear.  I placed the phone back on the nightstand and ran to check on Kari.  She was sleeping peacefully.  With Ron and Ryan gone, the house was quiet.

              "Ryan's been admitted?"  My legs felt like jell-o beneath me, and my body shook as I tried to pull on my clothing.  I collapsed in bed, tempted to release all my panic in a puddle of tears.  "No Joan, pull yourself together.  Ryan needs you!" I forced my mind to focus on my task ahead and my body to move into action.

              I grabbed the phone again and dialed a familiar number.  "Hello Wallis'," the feminine voice sang into my ear.  "Hi Sylvia, this is Joan.  Hey, Ron needed to take Ryan to Newington and he has been admitted.  Could you drive me over there?"  Sylvia had become my best friend since living in Connecticut.  She was warm, compassionate and always available when I needed her.  Sylvia and her daughter arrived within fifteen minutes.

              Our drive to Hartford was quiet.  The remaining dry autumn leaves carelessly danced upon the highway as we hurried toward the hospital.  The sun, high in the sky, warmed the four of us as our little girls slept in the back seat snug in their car seats.  My mind was numb except for a small voice that started out as a whisper.  "Find rest, O my soul, in God alone; my hope comes from Him!"  I recognized it as a well-memorized Bible verse that I clung to during the early days of Kari's illness.

              Flashes of that experience in Children's Hospital of Philadelphia flooded my mind.  "No, God!  This can't be happening again!"  I started to cry.  Sylvia, with a merciful touch, reached over and held my hand and wept along.  The more my tears flowed the more insistent the whisper became.  "Find rest, O my soul."

              We arrived at the hospital and searched for Ryan's room.  We found it across from the nurses' desk.  Before I entered the room I glanced at the nametag by the door.  My heart froze within me.  "No, that's wrong!  It's Kari that is always in the hospital, not my beautiful son!"

              I entered the room and saw Ryan resting in a metal enclosed crib with a nurse hovering over him.  Before I had a chance to absorb the rest of my surroundings, Ron greeted me and started reporting on the morning's events.

              Ryan had another jerking episode in front of Dr. Russman and the nurse was now preparing him for a three-hour video EEG monitoring test.   Sylvia hugged us both and offered to keep Kari as long as I needed, then quietly left the room with the girls.

              The orderly arrived to transport Ryan to the Neurology lab where they would begin the EEG.  I nursed Ryan while they continued to monitor him on video.  He looked like something from a science fiction movie with the electrode wires protruding from his head.  Ryan had many seizures during the test; therefore they followed the EEG with a CAT scan of his brain.  Before allowing Ryan to rest, the doctor drew five vials of blood from his tiny veins.

              That evening, Ryan lay exhausted from the day's events.  Still under the effects of the sedative given for the CAT Scan, he hadn't awakened for his evening feed. Hungry, tired, and uncomfortable from my not nursing him, I stood by his bedside watching his tiny chest rise and fall as he slept.

              The only light permeating the room was from the fading sunset.  Ron had gone home. The crib next to Ryan's was unoccupied and the nurses were busy with other patients.  I was grateful to be alone.  As I collapsed in the chair, a sensation overcame me – the feeling of despair.  I knew I should resist, but I had no desire to fight its determined grip on my heart.

              "No God, I cannot handle another handicapped child."   I felt a heavy cloud closing in on me.

              "Please get me out of here.  I don't want anyone telling me anything else bad about my child!"  The room darkened as the sun slipped below the horizon.

              "God, is their no one else for you to harass?"  The demon Bitterness was winning.  It clenched its ugly fingers around my neck.

              "Haven't I praised you enough, during my daughter's afflictions?  Have I not satisfied you?"

My heart pounded and I struggled to breathe.

              "Why do you torture me in this way?  Why are you taking it out on my children?"

              I sobbed angrily into my pillow, determined to win this ugly battle, resolved to prove my point before the Almighty.  The blackness moved in and the cloud was now suffocating me.  In desperation I cried out, "God, I'm so sorry.  I'm so scared.  I can't push you away.  I need you now more than ever, even though I don't understand.  I can't do this on my own.  Give me your strength!"

              Silently the cloud of depression slipped away.  Fresh air filled my lungs as I inhaled deep long breaths.  The room seemed larger when I opened my eyes, and feelings of relief overcome me, comforting my distressed spirit.

              "Find rest, oh my soul in God alone.  My hope comes from Him."  I whispered it silently into the darkness to chase away any lingering forces of evil desiring to defeat me.

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

              I spent the next five days at Ryan's bedside while more tests were completed: A spinal tap, eye examination, Medical Resonance Imaging (MRI) of his brain, and numerous blood tests.  The doctor started Ryan on Phenobarbital for the seizure activity.

              Before leaving town on Friday, Dr. Russman discharged Ryan, but we needed to wait until the following Monday for the results of his tests.  Patience – a virtue needed, we were learning, when dealing with undiagnosed symptoms.

              The weekend was upon us, which meant preparing for another busy Sunday.  Still afraid to let anyone know that our son was having seizures, we went through the entire Sunday, without sharing our hospital experience with anyone.

              Ron's message that morning was on perseverance.  He also asked me to sing the little song we had learned so long ago, "It's Amazing what Praising can do!"  Our duet was harmonious but our hearts were heavy.  We realized that even as we led in worship, God was teaching us much more than we could ever share with others.

              After the weekend, we met with Dr. Russman to receive the results of Ryan's five- day hospital stay.  I was hopeful as our family entered the doctor's office.  Over the weekend, the Phenobarbital had done its job of eliminating Ryan's seizures and he acted and looked like a normal infant again. He smiled more than Kari ever did at that age, his neck and trunk muscles were firm, and he nursed well with only occasional irritability.

              "Ron and Joan, have a seat!"  He addressed us as though we were close friends.  We certainly had been through much with him over the past year.  He continued in a very nervous dry voice, his gaze avoiding direct contact with us.  "I want to be straight with you.  One of Ryan's blood tests was a bit elevated.  It's called Lactic Acid.  I do believe it could be related to a genetic, metabolic condition.  What I'm saying is, I believe the seizures you are witnessing in Ryan is a disorder that is a forerunner to the Infantile Spasms in your daughter.  I believe Ryan and Kari are inflicted with a similar condition."  He leaned forward in his chair and quietly continued, "I'm sorry."

              He mumbled more about both children requiring further testing.  Ron and I both nodded our heads without saying anything or showing any emotion. The conversation ended and I slipped from the room while Ron gathered the children.

              Alone in the corridor, I collapsed against the wall in tears, the doctor's words penetrating my suffering heart.  I whispered into the cold hard wall, "Not my son!  This can't be true!"

              Ron approached me from behind to comfort me.  I pushed away his embrace and spoke directly, "I want to leave this place now!  I hate this hospital."  My thoughts continued as we hastily walked towards the main door.  I hated Dr. Russman.  I hated blood tests and EEG's.  I hated seizures.  I hated what God was allowing!  He was betraying me.  Our drive home remained silent as I allowed my hatred to rise within me.  My tears had stopped.

              Entering the house, I mechanically went about the routine of caring for my children without words or emotion.  I avoided Ron; consequently he left.  The children were content in their distant worlds so I was able to desert them downstairs and close myself in behind my bedroom door.

              I threw myself into my bed, burying my head in the pillow.  After sobbing for some time, I felt my heart melting and my spirit opening to the acceptance of whatever lay ahead for my children and me.  As I rose from the bed, I looked in the bedroom mirror.  A weak, pitiful woman stared back at me.

              "God, I'm sorry!  I know I'm so frail but I just don't understand.  I know you are in charge here.  Forgive me for my hatred.  Thank you for the children you have blessed me with, but I desperately need you to help me get through the rest of today!"

              I went downstairs and prepared Kari's dinner.  Ron came through the kitchen door a few hours later.  His face was sad and his shoulders were slumped.  He did not respond to me and went to pick up Kari who was crying.  "I'm sorry, honey, for pushing you away," I said as he brushed past me.  "I know we need each other right now."

              He hugged me without saying anything.  I knew I had hurt him deeply by closing my spirit to him.  He needed me and I, him, even more if we were going to hold our lives together despite this devastating news about our children.  We prepared Kari and Ryan for bed in silence.

              When I had shut Ron out earlier, he had gone to our friends from church.  Visiting the Calderwoods, he poured out our story to them.  After the kids were sleeping, late into the evening, one by one, our church friends appeared at our door with food, hugs, tears and even laughter to encourage us.  At midnight my mother, brother and his family arrived for a visit.  God provided me with the arms that I needed to get through that day and night.

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

Ron's Reflections...

              We’ve always been part of a Christian community.  We’ve never been alone in that regard.  God consistently surrounded us with care through the love of others.  Time and again there has been someone available to listen when we’ve needed to talk.  When Joan needed a ride to the hospital that day, Sylvia dropped everything else and made herself available. 

              We can’t really comprehend what it must be like to be completely and chronically alone.  The only feelings along those lines come when we refuse the comfort of God and others, when we choose to give in to the bitterness of our experience and shut out everything else.

              Why we didn’t inform our church of Ryan’s hospitalization, I don’t know.  I suspect it was because we wanted to hang on to the hope that it was all a bad dream.  If people were to be informed, then they would put their arms around us.  If they extended sympathy to us then the tragedy would feel all too real.  We weren’t quite ready for that. 

              A long time ago we realized that no one fully knows the pain of another person.  Sometimes others don’t have a clue.  The folks of Lebanon Bible Church couldn’t see that behind our praises were broken hearts.  But after we revealed it to them, they were there for us.

              “What should the church be doing to help families with a disabled child?”  We’ve been asked the question on different occasions.  Sometimes it seems that behind the query is the assumption the church is consistently inadequate.  That hasn’t been our experience, at least not when we’ve pushed aside the curtain hiding our pain.  At those times the response has consistently been good.  If anything, we’ve probably been too slow in letting others know how they can help.  We tend to focus on the truth that “each one should carry his own load” and we should.  But we’re not always as good at remembering that when our load becomes too heavy we are to “carry each other's burdens.”

              “Find rest, oh my soul in God alone.  My hope comes from him.”  It is true that we find our needs met in God alone.  At the same time, God uses dear people to deliver his provisions to us. 

A successful family accepts the help and comfort of others

as part of God's provision in times of need.

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Copyright (c) 2002 by Ron and Joan Denlinger