Chapter Eight

              Fred Martin, the pastor of Paradise Mennonite Church was Ron's role model.  Pastor Fred's enthusiasm for Jesus was contagious, motivating Ron to have the same love for ministry.  The people of the church gave encouragement to Ron, graciously allowing him to serve in a broad range of ministries.

              Ron led a Bible study at Paradise.  Although I accompanied him to each meeting, most of the time I found myself outside the room with Kari.  It was difficult trying to keep her quiet.  The longer she was on ACTH, the more irritable she was.  As I walked the hallway, I could still hear the discussion through the open door.  As they studied the Book of Philippians, Ron highlighted the theme: "Rejoicing in the Lord in spite of circumstances."

              I knew I needed to hear this truth from God's Word.  My daughter’s medical issues dominated each hour of my day.  Kari's complex routine allowed me little time to be involved in other interests or hobbies.  I was weary from lack of sleep, but the greatest threat to my happiness was my anxious thoughts of Kari's future.

              Ron's messages challenged me to find joy even in the daily grind of my life.  I received encouragement from my friends at the church while I was there, but I needed more.  I needed a joy that came from within me, one that could sustain me throughout the week.  God's word was told me that His joy was possible in the midst of my trials.  This message had not yet connected with my heart.  I longed for this joy to be a genuine reality in my life.

              Four weeks into Ron's Bible study, Kari was again admitted to our local hospital with pneumonia.  At only five months of age, her tiny lungs struggled for air as the virus raged within her.  I stayed by her side, watching and praying that her life would be spared.  The doctor said time would tell.

              I sang to her, talked to her, and assured her that she was not alone.  The croup tent covered her body with a light mist and the oxygen flowed into the plastic cave to aid her breathing.  I placed my head in the tent beside hers to cry.  The mist joined the tears on my face.  The nurses were silent while caring for her.  What is there to say when a little child suffers?

              The fourth morning of her hospital stay, the doctor aroused me from my vigil by Kari's bed.  Relief is written in the lines of his face.  Kari has improved and is breathing easier.  I call Ron with the great news and he alerts our friends and relatives.

              My parents arrive at the hospital that evening and ask if they could stay with Kari so Ron and I can have dinner together.  Kari continues to breath effortlessly, so I feel at ease about leaving her.  We celebrate Kari's improved health by going out for a steak dinner.

              We order our food and sip on soda while we wait. It is good to be alone with my husband and to talk.  "Ron, Sara stopped in to visit Kari yesterday.  She is a good friend, but something was different this time.  It was as if she didn't know what to say.  Ron, I saw fear in her eyes.  She barely could look at Kari.  It was very awkward.  I felt bad for her, so we walked down to the sunroom.  We talked about her new house."

              I stopped talking when the waitress brought our rolls.  "Did you talk about Kari?"  Ron questioned when we were alone again.

              "No, not really.  You know, after she left, I realized that I haven't been afraid at all this week.  The fear in her eyes surprised me. It seems God is giving me the strength to handle this, but He isn't necessarily giving that strength to others.  I felt like I needed to comfort her."

              Our meal arrived and we focused briefly on our food.  "Honey," Ron looked up from his plate and continued. "Last night I was thinking about Kari and how I would give anything to have her healed.  I wish it could be me instead of her.  This is the toughest thing I ever faced.  Our dream for ministry, our possessions, everything seemed pale in light of her struggle for life."

              "Even the things we argue about seem petty," I interrupted, smiling.

              "Joan, we must stick together through this. I think we can if we don't give up.  I have had an incredible calmness this week that I know is from the Lord.  Our strength does have to come from Him."

              I finished eating and sat back in my chair.  Tables filled with people surrounded us.  Country western songs blared from an overhead speaker.  A singer mourned his lost love. I sighed. "The problems of mankind are so varied, aren't they Ron?  But the pain is felt in the same place. I think I am experiencing this week what you have been talking about in your Bible study.  God has come along beside me in my pain.  He is giving me joy and a greater sense of His power."  I smiled, "He is going to sustain us Ron, no matter what happens!"

              Ron laid down his fork and looked at me with his dark shining eyes.  "Joan, I understand more than ever, when Job of the Bible said about God, 'My ears had heard of you but now my eyes have seen you!'  Jesus is revealing Himself to us."

              We sat in awe in the crowded restaurant feeling the presence of the Lord around us.  The singer crooned on, but we didn't hear him.  We were on holy ground.  We left there, knowing that God had given us a glimpse of Himself. Would our understanding of God be strong enough to sustain us through the days ahead?

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

              By late spring our family started to feel as if we were experiencing a normal schedule.  On a beautiful warm Sunday morning I awoke refreshed.  Kari was up only twice that night.  She had completed her ACTH therapy.  The roundness of her face, caused by the nasty steroid treatment, was subsiding.  I dressed her in a pink frilly dress then prepared myself for church.  It was a few weeks since I had been there.  I looked forward to showing off my newly contented baby.

              Our church had gone through a baby boom the year Kari was born.  Most of the babies were girls.  I entered the church nursery, sporting a "proud mama" smile.  I laid Kari in the middle of the floor while I removed my coat.  Immediately, her little friends surrounded her, crawling over her.  It pleased me that Kari was able to be among these children without screaming.  She seemed genuinely happy to be there.  What progress that was for her!

              I listened to the conversation of the mothers around me, waiting to share my delightful news regarding Kari's progress.

              The mom by the door was speaking to another, "Krissy has been crawling non-stop.  She's into everything!"

              "Ashley is pulling herself up along the couch. It won't be long before she is walking," Marie replied.

              From behind the changing table Joanne looked up, "Marie, do you have an idea how to cure diaper rash?  I feel so sad for Beth.  She is really suffering with it."

              "Look here Wanda, I want to show you Danae's recent picture.  Isn't her smile adorable?"  Two other women by the coat rack chatted happily.  From every purse emerged a picture of an adorable child as the ladies compared baby pictures.

              My heart ached to interrupt: "Kari attempted to kick her legs and made cooing sounds this week."  But I was silent.  It seemed so trivial when I compared it to the comments just shared.  It was so obvious that Kari was different. The initial attention that our family received when Kari was first hospitalized was gone.  Now I was outside their circle.  As they continued to chatter on about their children's achievements, I felt invisible.  It seemed I was alone in my joys and in my grief.

              I left the room taking Kari with me.  Did she scare them?  Had I failed by not joining their conversation?  I squelched the thoughts and joined Ron for the worship service.

              After church I walked directly to the car and avoided stopping at the nursery.  Kari wanted to eat but that could wait until we got home.  The earlier experience in the nursery still troubled me.

              "Joan!" I turned toward Sandy's familiar voice.  She continued talking when I smiled at her.  "I want to tell you that I am happy to see you and Kari here today.  How is she doing?"

              Her concern brought tears to my eyes.  I shared with her the news of Kari's progress.  I could tell my face radiated with joy as I spoke.  As we talked, she lowered her voice and stepped closer.  "I'm sorry about what happened in the nursery.  I saw how no one was talking to you.  Joan, I think no one knew what to say.  I know this sounds awful," she hesitated.  "After you left, someone said that if she had a child like Kari," she paused again.  "She would wish she would just die!"

              I stepped back, horrified.  How could any mother feel that way?  Kari was flesh of my flesh; She was the child God had entrusted to my care.  I knew well the work and patience it took to care for her.  It didn't matter; she was my daughter!  I wanted the best for her like any mother would.  I loved Kari!  She needed my love even more because of her weakness and vulnerability.

              Couldn't that mother see my joy as I cared for Kari?  Could she not see my pride?  Did Kari only look like a burden to live with, a huge interruption to a normal life, a waste of time and energy?  "No!" I wanted to scream.  Tears stung my eyes.  Am I the only one sees any value in her life?  Kari was a child created in the image of God Himself!  I was extremely grateful to Him for his precious gift to ME!

              I hurriedly thanked Sandy for talking to me as I opened the car door to put Kari inside.  Protectively, I placed her in her car seat.  I wanted to escape, and go to the haven of our home.

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

              Our final visit to Dr. Packer's office began like all others.  We anticipated facts that would provide more information about Kari's illness.  Maybe the genetic tests had led to a diagnosis so we could start the appropriate treatment.  In a few weeks we would be moving to Connecticut.  During this visit, we hoped to receive encouraging news for the future.

              The crowded neurology waiting room overflowed with children of various ages and conditions.  One mother was trying to keep her year-old daughter from crawling over a nearby infant.  When I struck up a conversation with her, I learned that her baby also had seizures as an infant. Now she was doing well and was just here for a routine checkup.  My heart began to soar as I imagined Kari crawling in six months.

              I had been researching carefully at the local medical library.  I knew that Infantile Spasms was a seizure disorder that usually accompanied severe mental and physical disabilities, but not in every case. Girls were more likely to avoid the severe disabilities.

              The nurse, interrupting my hopeful thoughts, called Kari's name.  The three of us entered Dr. Packer's cozy office.  He asked us questions concerning Kari's health.  I answered as positively as I could.  He then started to review all her recent test reports.  Everything was normal.  The geneticist had not been able to locate any defect but wanted to do one more urine test on Kari before we left.  My excitement rose as I waited for his glorious words that everything would be fine.  Then the bomb dropped.

              "Mr. and Mrs. Denlinger, I've tried to prepare you for this news over the past few months.  Your daughter is severely mentally and physically retarded.  Since we have not been able to find any abnormal test results except for her atypical EEG, we cannot determine a diagnosis.  Her lack of development indicates that her prognosis does not look hopeful."  His voice was gentle but firm.  "She probably will never walk, talk, sit, see, or understand more than maybe a few basic sentences.  I doubt that she will even be able to crawl or hold her head up without support.  Her life expectancy is about ten years.  You need to start preparing for your future."

              I could hear no more.  His voice became distant, his head a silhouette against the blinding sunlight that was streaming through his oversized window.  The room was unbearably hot.  Through my fog, I heard Ron ask a question.  They were discussing the name of a neurologist to whom Dr. Packer was referring Kari once we settled in Connecticut.  He would transfer her records there.

              Dr. Packer ushered Kari and I into a very small room to wait until she would give a urine specimen.  Ron hugged me before leaving to settle a billing problem.  I sat alone in total silence, shocked and furious.  There were pictures, drawn by children, hanging all over the wall.  I wanted to rip down every one of them.

              I hated the thought that Kari would never be able to litter my refrigerator with her own special artwork.  I hated seeing my daughter's blank stare; knowing she would never see any of those bright colors. She would never see my face!  What was the purpose of all those grueling tests, medications, and hospitalizations over the past six months if my child was just going to be a "vegetable" all of her life?  Why did the doctor raise my hopes by suggesting this one more urine test, when we all knew it would be normal like the others?  Why were we waiting in this claustrophobic room?  I wanted out of this hospital!

              My thoughts on the drive home raced on mercilessly to me.  I once had so much hope.  Where was it now?  I sat in the back seat with Kari, withdrawn in my own bitter world.  Ron said nothing.  The city traffic was heavy and noisy, and he concentrated on maneuvering the car in and out of the congested streets.  In the midst of my turmoil, I heard a whisper.  "My hope is in the Lord who gave himself for me."

              Where did these words come from?  They were only vaguely familiar.  The words grew louder, becoming a melody that pushed away my despair.  "My hope is in the Lord who gave himself for me!"

              Was God speaking to me?  Was He making His presence known to me, even in my pit of bitterness?  Cringing from His gentle correction, I started to cry.  "Yes Lord, now I see what you are trying to teach me!  All these months I thought I had trusted you.  Now you are showing me how much I was still trusting in medication, doctors, tests, therapy, a potential diagnosis – anything except trusting in you alone."

              This must be what God was trying to show me all along!  My joy couldn't depend on my circumstances; it had to come from Him.  My greatest hope was in Jesus Christ Himself!  He was asking me to trust Him for everything in my life.

              How could I not trust in Him?  How dare I not depend on the one who set the world in place?  Certainly He was capable of handling my daughter's life.

              No, I didn't know what the future held, but I had to believe Jesus cared for me.  Because of His love, He died for me. I knew He would give me hope for the difficult days ahead.  Now, could I trust God enough to show me how Kari's blindness and disabilities could benefit her life and others?

* * * * * * * * * * *

Ron's Reflections...

              When Dr. Packer leveled with us and spelled out the condition of our daughter and her future, it was hard to take.  It was almost as though we were back in his office the day he first told us that Kari’s condition was “grave.”  In a way this day was worse because back then medicine hadn’t yet had a chance to give its best shot.  But now, after months of effort, the verdict was the same.  Any hope we had in medicine and doctors had run dry.

              When all the other props are gone, when others can’t seem to find a way to encourage us, we are left with the realization that the answer is found in God – either that or there is no answer, no meaning in life or purpose.  It is then that we are forced to face the true meaning of life.  And God, in his love and mercy, is willing to bring us to this point for our own good.

              As long as there is another medication to try, we don’t need to trust in the Lord.  As long as we see some way to put the pieces together in a meaningful fashion, then we don’t have to put our hope in the Lord.

              Some of our richest times were when the bottom had fallen out, and all that the world offered to us was as nothing, when even dear caring friends had no idea how to encourage us.  It was then that we realized that God was enough, even more than what we would have ever imagined.  The “trick” is to remember that God is our only real hope ever, at any time.  All other ground is sinking sand. 

              We all need hope, real hope, substantial stuff that will prove itself sufficient for the most difficult days.  The question is where we will seek to find it. 

A successful family finds hope in knowing and trusting God.

Previous Chapter          Chapter Eight          Next Chapter

Prologue   1  2  3  4  5  6  7  8  9  10  11  12  13  14  15  16  17  18  19  20  21  Updates  Appendix

Copyright (c) 2002 by Ron and Joan Denlinger