Chapter Thirteen

              Our car sliced through the black night as it raced along the winding, dark country roads.  Afraid to look at the speedometer, I prayed, "O God, please get us to the hospital safely."  Ron drove, focusing on making every turn as smoothly as he could under the threatening circumstances.  I held my thrashing daughter's body gingerly in my arms to protect her from further harm.  This merciless seizure had started thirty minutes before, and by now her face was blue.  "Father, please don't take my baby's life!"  I prayed desperately, looking into the ominous sky.

              The sight of the well-lit emergency entrance brought relief to my anguish.  I rushed Kari through the automatic doors into the quiet emergency room.  Within seconds of seeing my terrified look and blue seizing baby, the staff grabbed Kari from me and huddled around her bed with the doctor in charge shouting orders.  Minutes after starting the intravenous dosage of Valium her muscles went limp and she lay like a rag doll.  An oxygen mask filled her air-deprived lungs and her blue complexion changed to pale.

              The doctor turned to me for information.  The words stuck in my throat and all I could do was cry.  My weary body quivered.  I turned around to see Ron coming through the emergency doors.  I collapsed in a chair to gather my emotions as he explained to the doctor that Kari had been sick since leaving the New York Hospital a week earlier.  She was up every night with fever, vomiting, diarrhea and a respiratory infection.  Now, at midnight, she topped off her week with this finale.

              "Ron," I said as we traveled home with our sedated child, "yesterday's mail included a card that read, 'Life's hardest task is to accept what we cannot understand, and we can do even that if we are sure enough of God's love.'  Just when I think I have accepted Kari's condition, I have to go through a week like this.  I wonder if God really does care!"

              "Joan," he said softly, "we have no other real choice but to know that God is good and He loves us.  He does care for us, and Kari.  If we deny this, our emotions will destroy us."  I knew he was right, but lately my physical exhaustion prevented me from really appreciating God's personal connection with me.  I mumbled a response back to my husband.  "I know people are praying for us.  I guess I need to rest in that."

              Four days later, we were back in the local hospital.  Kari had been spiking high fevers and had difficulty breathing.  The doctor admitted her to the pediatric floor with viral pneumonia.  I sat by her crib and agonized in prayer over her fragile body.  Intravenous fluids were delivering antibiotics to her infected lungs and an oxygen tent covered her body as she struggled for each breath.  "Oh God, here I am again!  Please help my baby!  I know I have been questioning your goodness lately, but please don't punish my skepticism by taking it out on Kari!  Hear our cry for help."

              Four days into the hospitalization, Kari started to improve.  A nurse allowed me to cuddle Kari outside her oxygen tent that evening.  She and I were both enjoying our time together rocking when the phone rang.

              Ron was on the other end.  All week he had been juggling caring for Ryan and working out of his office, trying to keep from falling too far behind in his work.  This evening he was to be leading a Bible Study, so his call surprised me.  "Joan," his voice hinted with fear, "I'm down here in the hospital lobby with Ryan.  He is having terrible seizures like he has never had.  What should I do?"

              I hung up the phone and immediately dialed Dr. Russman at the Children's Hospital.  He was at home but returned my call within minutes.  He told me to bring Ryan immediately to Newington Children's Hospital and he would meet us there.

              I hated leaving Kari, but I knew Ron would not feel comfortable admitting Ryan and answering the endless of questions.  We made a quick decision that Ron would take Ryan and me to Newington, and he would later return to stay with Kari.

              I sat in the back seat with Ryan as we drove along the deserted expressway.  I watched his body racked with yet another new type of seizure, but my exhaustion prevented me from even crying.

              "Ron, what do you think the people of our church think of us?"  I asked, aware that our family situation was again pulling him from the church work.  "One thing I know Joan, they care very much for us.  Why don't we talk about something else?"  He suggested we fill the hour-long drive with taking turns praising God for things we can be thankful for.

              I was glad at the moment I was in the back seat because I didn't want him to see my eyes rolling toward the back of my head.  What's there to be thankful for? I thought.  He started with a simple list and soon I joined him with a few of my own.  As we pulled into the parking lot of Newington Children's Hospital with Ryan still seizing, a duet in perfect harmony came softly and naturally from our lips.  "Lord, listen to your children praying, send us love, send us power, send us grace!"

              Two years almost to the day after Kari's initial EEG showed the devastating infantile spasms disorder; Ryan's brain presented the same dreadful EEG recording.  Dr. Russman immediately started him on the potent steroid therapy (ACTH) in hopes of arresting the horrible abnormal electrical impulses in his brain.

              Kari was eventually discharged from the local hospital and my mother again came to our Connecticut home to care for her while I stayed with Ryan in Hartford.  I hated having our family split, and after five days of staying with Ryan alone, I was eager to be with Ron and Kari.

              My patience was running low; I wanted to be home.  Ryan was improving and I believed I could handle his medical care at home.  I had been through the whole ACTH daily injection routine before, and was capable of performing the nursing care that accompanied it, so I pleasantly begged Dr. Russman to discharge Ryan.

              He granted my wish and we went home.  With our family again living under one roof, Ron seemed relieved to have me undertake the care of both children again.  He worked fervently trying to catch up on his work.

              His men's accountability group was flourishing and Ron seemed highly motivated by the level of interest in it.  He hosted the meetings in our home every week and I provided refreshments.  Apart from the moments while delivering coffee and doughnuts, I was not allowed access to their meetings.  Although I was happy that my husband found support through this group, I noticed he seemed tense.  I realized that I had not been available to listen to his feelings; we were all experiencing stress.

              Despite the daily injection of ACTH, Ryan's seizures continued to attack his increasingly chubby body.  The steroid made him very hungry.  He was constantly crying for food.  When his stomach was satisfied, his screaming continued out of fear from the controlling spasms.  Dr. Russman wanted me to double the dose of ACTH and reluctantly I did.  I hated this toxic drug; it caused horrible reactions in Ryan's body.  Besides the increase in weight, it also raised his blood pressure requiring medication to keep it in a tolerable range.  ACTH made him very irritable and suppressed his immune system making him extremely vulnerable to all viruses.

              For three weeks, Ryan awakened every hour around the clock, screaming in misery.  I mechanically cared for the needs of my kids.  I felt my body and mind shutting down from exhaustion.  I couldn't focus my attention on anything that I once enjoyed.  It was as though a thick blanket of fog smothered my every activity.  Emotionally, I no longer responded to the children's cries for help; they did not even evoke pity within me.  I avoided Ron.  His happiness in his work made me jealous.

              One morning, still in my pajamas, I was preparing Ryan's injection.  Both children quietly sat in their seats, seemingly oblivious to the world that I was experiencing.  Over the past few months they had been so sick that I only had time to care for their physical needs.  I had slacked off doing their therapy, which was to keep them in tune with their present environment.  Their eyes stared blankly into space.

              Though I had so little energy to face it, I could not avoid the suffering that was showing itself in full color in our home.  A somber tune from the "Fiddler on the Roof" album was playing in the background – it's doleful music the perfect backdrop for my feelings.  I looked at both my children sitting there and angrily cried out.  "God, this is not what I had in mind when I had children.  These kids should be running around here, pulling pans from my perfectly organized cupboards, spilling milk on the floor and making irritating noise.  I should be exhausted from their play not their pain!  Would it spoil some vast eternal plan for my children to be normal?"  I received no answer from above.

              I called Dr. Russman to inform him of Ryan's 20-30 a day clusters of seizures each lasting 10-15 minutes.  The ACTH was destroying his body and I refused to have him increase it again; besides it was doing nothing for his seizures.  The neurologist's only answer was to admit him to the hospital again.  Ryan and I spent another full week in the hospital while the doctor attempted to calm his seizure activity and wean him off the destructive steroid.

              I ate Easter dinner alone in the hospital cafeteria.  Ron said he would come later in the day with Kari, after the service.  I felt distant from my church family.  It wasn't that they didn't care for me, the opposite was true, but I had no energy left to devote to my church family after caring for the incredible needs of my children.

              Now again today, I sat on this Holy day feeling guilty that I was not with these people I loved and not available to support Ron.  My son suffered terribly and I couldn't leave him; he was helpless and sick.  Nurses and doctors could provide the medical care he needed, but the love Ryan needed to survive this world had to come from his family.  He searched for me with his dark, scared eyes when disturbed and than relaxed on hearing my voice and touch.  I was the one stable secure thing in his dark frightening world.  He was a human being just like me who needed love, security and a place of belonging.  My arms provided all three.

              Over the past few months I struggled with how God could use our family in church planting ministry when our family needs incapacitated me.  I had not been voicing my concerns to Ron, but today as I again agonized over this thought, I knew I couldn't keep it quiet much longer.

              When Ron arrived that evening we took turns sharing with each other about our day.  I gave the update on Ryan and what the doctor was now trying to control his seizures.  Then Ron went into detail about the events and happenings at the church.  We each spoke fully about our area of expertise, but it was obvious by our body language that neither one of us had the emotion or energy to empathize with each other to provide the encouragement that we so desperately needed.

              The lack of concern we had for one another frightened me, but I did not know how to address it.  Instead I hesitantly asked, "Ron, does the question ever cross your mind how we can keep up this crazy lifestyle?" When he did not immediately respond, I continued on about how I sensed our family was suffering from the kids constant needs and hospitalizations.

              After I exhausted my supply of pent up feelings, Ron answered cautiously.  "I admit, Joan, something must change.  We cannot go on like this.  I need your support as my wife and in the ministry. I'm starting to have panic attacks, and I'm not sleeping at night."

              My heart sank.  Ron so seldom shared his feelings with me and I cringed, knowing he was suffering silently.

              He continued.  "I don't know how to accomplish all that I need to do in my work and provide for the needs of my family.  There are days I feel paralyzed from moving forward. Joan, I feel on the verge of a nervous breakdown."

              This was the first time in months we were vulnerable before one another, laying out all our thoughts and emotions.

              At this point, I had courage to be frank and share my desire to move back to Lancaster to be closer to extended family.  "Ron, I need help and I can't constantly be calling my mother away from her work to help us."

              Ron nodded his head as though he heard my plea, but waited several moments before responding.  "Joan, I have no energy to even process such a drastic solution, but I will pray."  I bowed my head with him as Ron began to ask God to show us how we could be responsible for all that He was asking of us.

              After Ron left for the night, I prayed my own prayer.  "God reveal yourself to us soon!" I spoke with urgency as I prepared my cot for another night of restless sleep.

              Before the sun even arose, I was awakened for the sixth time that night.  This time it was not Ryan waking me, but the voice of Dr. Russman.  I sat up quickly and straightened my sweatshirt, rubbing my eyes, and brushing back my hair.  What is he doing here at this ungodly hour?  I thought to myself as I tried to orient myself on my rumpled cot.

              When Dr. Russman pulled up a chair indicating he wanted to talk to me, I really got nervous. It was his usual practice on morning rounds to assess Ryan's situation and then address me.  When he ignored Ryan, I assumed something must be terribly wrong.

              "Joan, I need to talk to you if that's okay."  By now he was staring intently at me, leaning forward in his seat. Trying to carry on a respectable conversation looking the way I did, did not thrill me.  I had a total of three hours of sleep and my mind was foggy, but I nodded agreement for it appeared that the doctor meant business.

              He continued.  "First, I want to give you the results of the tests that Dr. DeVivo in New York has been working on.  It doesn't look promising.  He can't find anything abnormal.  Therefore we don't have any answers as to how to help your kids.  We can't come up with a diagnosis.  We can only treat their devastating symptoms.

              “Secondly, I know this is no news to you, but your family has been through hell and I can't give you any hope that the future is going to be brighter.

              “The last thing I want to say is personal. I couldn't get you guys off my mind last night and I want to offer a suggestion that I want you to talk to your husband about.  Joan, you are going to need help on an ongoing basis!  Kari and Ryan will be increasingly difficult to care for.  I don't know if your husband's parish will allow this, but I think you guys need to move closer to extended family.  I want to help you in any way I can.  Think about this and we'll talk more later."

              I sat dazed, unable to utter even a word before he left the room.  Did I hear him correctly?  Did he say last night he thought all this?  Could God have orchestrated our talk and Dr. Russman's thoughts in the same evening?  Was God using Dr. Russman to speak to us?  I quickly got dressed and tended to Ryan who was now crying.  He was going to have another EEG conducted today with sedation.  I had already decided that since he would be sleeping most of the day, I would go home and relieve Ron of Kari and complete a few other neglected chores.

              Ron was glad to have me home if even for just a few hours.  I hadn't yet relayed Dr. Russman's advice to him.  Knowing it was a very fragile subject; I hoped that he would initiate continuing the discussion from the night before.

              "Joan," Ron said quietly during our lunch.  "I talked to Trevor Baird this morning."  Trevor was the director of the RHMA organization so I braced myself for what was coming. "He said he would encourage us to do whatever is best for our family.  He will be supportive of any decision we make, but I don't know Joan – I don't think we can move.  What would I do in Lancaster?  Ministry is what I want to do.  I love it here!  What about our new home?  Life just has to get better!"

              I listened to him agonize and then relayed Dr. Russman's suggestion earlier in the day.  Ron said nothing at that point, but the subject was not dropped. I could tell he needed time to process the idea.

              Later that week, I brought Ryan home.  Life did not get better.  In fact, Ryan and Kari continued their burdensome schedules even out of the hospital.  After two more weeks of sick children, uncontrollable seizures, no sleep, buckets of tears, and hours of talk between us, and consulting others, the choice was clear.  Ron made the decision to end our ministry in Connecticut and move closer to extended family.  We were exhausted and the more we had resisted the inevitable, the harder life was for us.

              God provided for us, as we trusted Him for the details of our move and acknowledged that it was His will for us.  Within a week of the news hitting Lancaster that we were moving back, Ron received two job offers.  A field director from RHMA was willing to move into our home and continue the church planting work we had started.  We arranged with the church to lease our home to them.  My parents encouraged us to move in with them until we could find housing in Lancaster.  The most important confirmation to us that God was leading in our move was our church family's affirmation that we needed to take care of our children first.  It was a tearful good-bye on that final Sunday but we all knew it was for the best.

              It was heart-wrenching leaving behind our friends, our new home and dreams, but God was making it clear that this was His choice.  The last thing I picked up as I left my kitchen on the day of our move was a card stuck to my refrigerator. It read, "See, I have refined you, . . . I have tested you in the furnace of affliction.  I do this.  I do this, for my own sake.  Isaiah 48:10."  We closed the door to our home and left Connecticut feeling as though our God was burning our dreams in his furnace.

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

Ron's Reflections...

              Needing to leave Connecticut added to my deep pain.  Had there been a way for us to stay in Lebanon we would have done so.  Dreams for healthy children had disappeared.  Now dreams of church planting in New England had drawn to a close as well.

              What does one do with God and his promises when so much of what one desires has shattered?  Did God love us?  Did he care?  If so, why didn’t he change things?  Was it love that allowed our children to suffer?  Was it love that ended my calling?  Why didn’t he change our circumstances?  Why hadn’t he intervened in the development of my children?  Why hadn’t he contained the electrical currents in their brains, preventing the devastating storms that constantly interfered with their learning?

              A few years before our children were born a book was written, entitled: “When Bad Things Happen to Good People.”  It, like many other books before it, wrestled with the problem of suffering.  Many accepted its conclusion that God loves mankind but is limited in preventing bad things from occurring.  Our study of the Bible taught us otherwise. 

              In God’s Word we found a God who is all-powerful, who not only knows about each sparrow that falls and the number of hairs on every head, but even ultimately takes responsibility for the number of our days and the plans he has for us.  We were amazed to find that God went so far as to say, “Who gave man his mouth?  Who makes him deaf or mute?  Who gives him sight or makes him blind?  Is it not I, the Lord?” 

              One day I came across a few verses from the Psalms that helped me immensely.  In typical Hebraic fashion, David shares with us two truths about God.  “One thing God has spoken, two things have I heard: that you, O God, are strong, and that you, O Lord, are loving.” 

(Psalm 61:11,12)

              If God is not love, then what is there to conclude but that he is cruel?  If God is not strong, then what assurance did I have that he could bring about any purpose or meaning to my life?  Though I could not reconcile these qualities in God of which David spoke, I knew that both must somehow be true.  And confidence in a God who was both strong and loving would carry us through those days and many more dark days ahead. 

A successful family chooses to believe that God loves them

even in the midst of shattered dreams.

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Copyright (c) 2002 by Ron and Joan Denlinger