Chapter Eighteen

              A refreshing breeze blew through the newly budded trees.  I looked over our backyard, watching the branches lazily swaying in the wind.  "God certainly has placed me in a beautiful location," I mused.  Before turning my attention back to the kids I took one last breath, savoring the sweet fragrance of the balmy spring day.

              "Let's get on the road Loie!" I shouted excitedly.  I slammed the van door closed causing Kari and Ryan, who were buckled in their wheelchairs, to jump in their seats.  Before slipping behind the steering wheel, I gave the old vehicle a good luck pat for our long trip.  The engine sputtered to life when I turned the key – it would be a great day!

              Loie and I had completed the children's morning care – baths, breakfast, therapy, medication – and now we had them packed in the van along with their supplies for the day.  Loie was not on call as a home health nurse this weekend, so earlier in the morning I had suggested we diverge from the normal Saturday schedule to do something fun.  Ron's plans for the day could not be so easily changed. Meetings and sermon preparation consumed most of his Saturday schedule, so it would only be the four of us making the trip.

              Our destination was the Philadelphia Zoo.  I knew Kari and Ryan would enjoy the outdoors.  Although neither could see, I would have fun describing the animals' activities to them.  Attempting a spur-of-the-moment trip was not my usual habit but, since having Loie around, I was becoming more impulsive.  Going anywhere with two kids in wheelchairs was always an adventure, but Loie and I decided we were up to the challenge this morning.

              Ryan continued to have difficulty digesting food.  His tummy revolted frequently, increasing his chance of aspiration and making life generally miserable.  Since December he had managed to avoid pneumonia and other life-threatening complications, so today we would also celebrate a hospital-free l993.

              Loie and I chatted freely as we drove down the turnpike.  I enjoyed her companionship and the stimulating conversation we usually created.  I glanced in the rear view mirror and saw the kids were taking advantage of the long drive by falling asleep.

              After exiting the freeway I maneuvered the van through the congested streets, then found a handicapped parking space in the zoo's parking lot.  The sun was warm overhead so we threw our jackets in the van, leaving behind any extra baggage that would encumber us. 

              We patiently waited our turn in the long line at the crowded admission gate.  The sign above the cashier caught my attention, "Wow!  Loie, check out those prices!  The zoo isn't exactly cheap!"  I hesitated before moving ahead in line as I calculated whether my minister's budget could handle this frivolous expense.  My conservative mindset didn't prevail after considering the active schedule I had kept over the past year-and-a-half.  I needed this vacation day!  In an attempt to save a few dollars, I informed the cashier that both my children were severally disabled and blind, and then boldly asked if they could have a discount.

              She glared at me as though she had heard that line before, and then responded with the full admission price.  I reluctantly paid my entrance fee and shoved the kids beyond the gate. Shrugging my shoulders I mumbled to Loie,  "Oh well, I won't let her callous response spoil my day."

              We wove our way through the reptile section, passing the alligators and giggling at the gigantic turtles, which were enjoying a mating session in the sun.  "Well Loie, I'm glad I don't have to explain everything I see to the kids.  There are some advantages to their blindness."  I winked at her as we continued down the path.

              Loie pushed Kari who was attentive to the different sounds and smells around her.  Occasionally when the commotion was too much for Kari, she'd throw her head forward and rub her eyes and then peek upward with a smile when she felt secure.  I escorted Ryan alongside the tiger cages as he kept his little head pushed backward into his headrest with his eyes fixed upward towards me – his tour guide.  His eyes sparkled and he held his hands up in excitement.  Occasionally as we strolled I mentioned to Loie that something smelled bad.  After I repeated this for the fourth time, Loie turned to me somewhat annoyed with needing to state the obvious, "Joan, we are in a zoo!"

              With my olfactory nerve continuing to react, I quietly continued along until Ryan became irritable, indicating he needed a break from his chair. As I began to unbuckle him from his seat I realized that my senses had not been deceiving me.  Ryan was saturated from the back of his neck to the bottom of his toes.  It oozed from his chair and dripped down to the gravel path.  I stood frozen in panic.  I caught a glimpse of Loie's horrified expression and I broke into laughter.  What else could I do in this embarrassing situation?  Quickly the four of us headed to the nearest rest room, with Loie and me in hysterics.

              When we arrived I discovered the bathroom was not equipped with paper towels and the few baby wipes I had were dried out.  "Loie, it looks like toilet paper will be our only tool for the job!" I chuckled.

              Loie poured the rest of her soda in the sink and began dumping cups full of soapy water on the soiled chair.  Ryan lay contentedly on the infant changing table, relieved of his uncomfortable predicament.  Women coming in on our scene politely stepped around us as we finished our task.  Exhausted from cleaning and laughing, we exited the bathroom, my son clad only in a diaper.

              Loie offered to retrieve clothing from the van for Ryan, so I sat down in the grass with him, his wheelchair drying in the sun.  Kari sat beside me in her chair, making melancholy noises to those who would listen.  I watched the hordes of people walking past, intent on conquering the zoo.  All at once I felt conspicuous as I sat alone with my two severely disabled children, one of whom was exposing his feeding tube.

              People smiled at me graciously as they tried to make sense of the situation, but I could tell they felt sorry for me.  Pity was not what I wanted to elicit from these people.  I should have been used to it by now.  I saw it often enough.  Just a week earlier, Ron and I had been out for a walk, pushing the kids near a construction site.  One of the workers said to another while pointing to our family, "Look at those pathetic people!"  Now, as I sat waiting I felt the same silent judgment hurled at me.

              Pathetic or deprived were not adjectives that I would use to describe my family.  Instead, I felt we were very rich.  God was promising our family an inheritance waiting in heaven.  We may not appear advantaged in this world, and in many ways that is right.  On the other hand, it is because of the weakness in my children that I consider myself blessed.

              Kari and Ryan's limitations forced me to look beyond what this culture esteems as valuable.  I know that this present reality is not all there is to life.  The more God withheld from my children and me, the better prepared we are for His heavenly kingdom.

              Having disabled children may appear tragic to these people at the zoo.  Some days it feels that way to me too.  But Kari and Ryan are never a burden to me.  Their suffering is only distressing to me when I view it from my vantage point.  When I allow God to show me His design for my life and theirs, then I receive wisdom and peace that I   otherwise never would know.  Kari and Ryan are not weights that burden me down but wings that elevate, allowing me to soar above the rat race of this world.

              I was not to be pitied, but how could I tell the people who were passing me, viewing this rather odd "exhibit" and thinking how unfortunate I must be.  "Oh Ryan," I muttered as I shifted him in my arms, "we human animals are so fascinating.  I'm learning more about myself than about zoo creatures today!  Does it really matter if people think we are strange?"

              I smiled as Loie approached, hurriedly pushing her way through the crowds with an adult sweatshirt in her hand.  Waving it frantically in my direction she hollered, "this is all I could find, Joan!  Will you be embarrassed if Ryan wears it?"

              I shook my head no and got ready to get back to the fun of our day.

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

              As we traveled home from the zoo to the Upper Perkiomen Valley, I sensed anxiety creeping into my mind like dark rain clouds invading a picnic, pushing away the sunny day.  The tension was becoming all too familiar, but not a welcomed visitor.  I looked down at my whitened knuckles as I gripped the steering wheel.  "Why God?  Why am I troubled in this way?  Why can't I be released from this horrible feeling?"

              The children slept behind me and Loie sat daydreaming out the window.  I drove in silence, not allowing her to be privy to my dreadful thoughts.  I pulled the van into the driveway and Ron appeared at the house door when he heard us arrive.  He greeted us both then hugged me.  I bristled at his touch, feeling guilty for my chilly response.  I realized that the day at the zoo was more than a break from my routine but a reprieve from this nebulous feeling.

              That evening I busied myself with getting the children prepared for bed and tried to ignore the tension between my husband and me.  He went back to his office to complete the final details of his sermon and I relaxed with a steaming cup of herbal tea.

              "We've been through worse times than this.  Why is our marriage strained now?"  I questioned as I reflected on the nine years of our married life.  Since the time of Kari's birth we knew of the disturbing statistic that more than eighty percent of marriages with a disabled child end in divorce.  We both had determined to not become part of that number and I thought we were on the right track.

              I slowly ascended the steps towards my bedroom, realizing that Ron would not be coming home soon. As I lay in bed I continued rehashing in my mind, "Where have we gone wrong?"  Over the past year Ron and I had persevered month after month to set aside at least one evening for each other while Loie provided respite for us.  Even during the lengthy hospitalizations and the uncertain outcome of our children's lives, Ron and I found creative ways to meet the other's emotional needs.  We had refused to allow the devastating illness of our children to disintegrate our love for each other. 

              Despite our efforts, something was still causing us to remain in our separate worlds.  The strain we were dealing with now had nothing to do with the demands of our children's health, but this fact was not obvious to me or to those around me.

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

              I sat crying softly, my tearstained face buried into my drawn-up knees.  Ron was on the phone informing my mother that we would not be attending the family picnic.  He hung up the phone.  A crisis was upon us and he had begun to take drastic action to fix it.

              Turning to me he said, "Joan, I'm calling a counselor today!  We need help!  You and I can't talk without our conversation ending in an argument.  I don't know what is going wrong but we need to figure it out soon or there is not going to be much left to this marriage!"

              We arrived at the counseling office, having driven there in silence.  Besides being confused by how our breakfast conversation could spiral downward so quickly into mayhem, I was also upset about missing time with my extended family.

              Sun streamed through one small window as we were ushered into the counselor's office.  She offered Ron and me the seats that faced her organized desk as she finished writing a few notes from her last session.  I sat with my legs crossed and my arms protectively hugging my heart as I surveyed the wall hangings and bookshelves.  The walls were painted a pale blue, leaving me with a cold feeling about this place.

              The blond-haired middle-aged woman laid down her pen and looked up smiling.  "Hello Ron and Joan!  It's so good to meet you.  I've heard a lot about your new church in Red Hill."  The reference to my husband being a pastor caused me to squirm.  I was hoping to avoid that connection.  She continued speaking, her professional voice bringing my mind in focus as she laid before us the common problems she frequently encountered among married couples.  Her calm, nonchalant demeanor slowly disarmed my emotional defensiveness and soon I found myself connecting with many of the thoughts she was expressing.

              As I started to talk, my evaluations of our marriage surprised even myself.  Avoiding eye contact with Ron, I expressed to the counselor that emotionally I felt as though I was bonded to two partners – ministry and Ron.  He worked eighty hours a week away from home, but even when he was home he talked incessantly about ministry-related issues.  I shared in Ron's passion for leading the church, for I too loved the people.  Many times I acted as his sounding board for things that he was dealing with.  But because of Ron's intensity for his work, I thought I needed to feel it with him or he would lose interest in me.  He was on call twenty-four hours a day, seven days a week, never taking a day away from his work.

              However, after two years of this hectic schedule, I had come to feel more and more competition from what appeared to be his first love – the ministry.  Sometimes in my jealousy I had even concluded that Ron used his busy ministry schedule to avoid the fact that his children could not give him the gratification that parents desire.  I saw him throwing himself into a work that had more tangible rewards.

              Ron watched me intently as I spoke and he remained quiet.  The counselor summarized our time together and cautioned us in problem areas of our marriage relationship.  She then prayed and expressed appreciation to us for coming – an important step in resolving our pain.  Before leaving she reminded us that our problems were not too big for God to handle.  I walked outside feeling encouraged that she saw hope for our marriage.

              I opened the car door and smiled over the roof at Ron before getting in.  He had not yet commented on what I had revealed within the session, instead he started the car and drove toward home.  Just when Ron's silence convinced me that he would never talk to me again, he pulled the car into an ice-cream parlor and offered me a treat.

              As we sat licking our cones, he leaned over and looked into my eyes.  "Joan, I never want you to think that ministry means more to me than you and the kids.  I am sorry for not seeing your needs.  The counselor is right.  I have been working so hard to succeed at this work and to meet my own expectations that I'm failing to see what you need and what God wants.  I love you honey, and I am not going to hurt you like this anymore.  Things will change."

              His words sent shivers down my neck, for I knew he was speaking the conviction of his heart and that he would keep his promise.  The changes occurred slowly.  He committed to taking a day a week away from ministry to fulfill his commitments to his home.  I could see it was a struggle for him to let his mind rest from work on his day off, but he continued to persevere.  He was doing his part at repairing our badly injured marriage and it softened my hardened heart.

              What I could not see during this time was my part in this healing process that kept me from experiencing complete joy.

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

              I quickly finished pushing the final medication through Ryan's gastrostomy tube, prayed a hasty goodnight prayer by his bedside, and kissed his chubby cheek before turning off the light.

              "Ryan's finished.  Now I just have to calm Kari before I go back out there."  I quietly rehearsed my nightly ritual as I continued to rush through the children's bedtime care.  Ron was counseling our guests in the living room, a couple who was having a crisis marital problem.  Ron had asked me join him in the session.  They had arrived late so our kids would be in bed, allowing us uninterrupted time to counsel with them.

              When I entered Kari's room, a sickening feeling entered my stomach.  I immediately saw why she had been crying.  She had vomited all over her bed and it was matted in her hair and soaking her sheets and blankets.  Her body was warm and I could hear the rasping breath sounds coming from her lungs as they reacted to the aspirated fluid.

              "Oh no Kari, why did you have to do this now?  I don't have time for this!  Your daddy needs me!"  My spirit was anything but gentle and compassionate as I rushed Kari through a soapy warm bath and shampoo.  "God, why can't I ever be involved in a ministry-related task without my kids interfering?  What are these people going to think of me?"

              I quickly dressed her in clean pajamas, still determined to return to the living room.  Kari's breathing continued to be very coarse.  I couldn't ignore that symptom, knowing if I didn't start a respiratory treatment soon she would be in trouble.  I pounded on Kari's back, attempting to loosen the thick phlegm in her congested lungs while the aerosol mask blew the misty medication into her face.  Finally she produced a series of weak coughs.  I listened to her lungs through my stethoscope – "clear enough," I whispered.  Kari closed her eyes in exhaustion as I placed her on her side to sleep.

              I was racing around Kari's room, clearing away the dirty linen, when I heard Ryan crying from his bedroom.  "Oh no, not him again!" I moaned, "I must get out to the living room.  I know Ron needs me!"

              I entered the next room and discovered that in my haste I had forgotten to unclamp the tubing that was allowing Ryan's formula feeding to flow into his stomach tube.  It was now flowing out a side port onto his bed and Ryan was reacting to his soggy pajamas and sheets.  It had been an hour since I had excused myself from our guests.  This latest disaster made it clear that I was not going to be able to return before they left.

              I collapsed against Ryan's bedroom wall and cried out to God.  "Father, you have given me these two precious children who need so much care, but you have also made it abundantly clear that we were to go back into ministry.  I don't see how I can possibly do it, Lord.  This is my constant battle; I can never be an effective pastor's wife.  My children are always demanding my time and often seem to be a hindrance to my caring for other people.  Ron can never count on me.  I'm constantly failing at fulfilling my role as mother and pastor's wife!"

              That night when Ron crawled into bed, I kept my back toward him.  Tears were burning my eyes but I stubbornly restrained my body from sobbing.   I felt like a failure but I couldn't let him see my weakness.  I could not be that vulnerable.  We didn't pray together as we usually did.  Instead he turned out the light and said goodnight into the dark.

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

              A month later, on a Sunday night, I sat shaking on my bed.  Ron had not yet returned from the church.  I clutched my arms around myself in a hug and cried out the words from my open Bible.   "Fear and trembling have beset me, horror has overwhelmed me."  Tears blurred my eye.  "Oh, that I had the wings of a dove!  I would fly away and be at rest.  I would flee far away and stay in the desert, I would hurry to my place of shelter, far from the tempest and storm. If an enemy were insulting me, I could endure it… But it is a man like yourself, my companion, my friend… " 

(Psalm 55:5-8, 12-13)

              At that very moment I wanted to run far from this place and never return.  Today my suspicions were confirmed.  I truly was a failure as a pastor's wife – this letter said so.  It was from a very distraught woman whom I had apparently offended by a comment I had made.  Now she was responding in a biting, angry tone, attacking me, aiming at my Achilles heel of insecurity.  Her letter ended with words I had come to fear were true: "You are the worst pastor's wife I have ever had!"

              The letter lay on my bed, burning a hole into my already weakened heart.  "Lord, I never meant to offend her!  How can I ever live up to the expectations of all these people?  You never told me it was going to be so hard.  I never thought Christian people would respond this way!  How can I ever walk back into that church again?  Who is going to attack me next?  Why does Ron allow me to be put in this horrible position?  Why doesn't he defend me?  Can't he see how it is destroying me?"

              By the time Ron arrived home I had expressed all my fear to God, but I still appreciated my husband's arms around me after he read the letter.  I could feel his pain for me as he spoke, trying to reassure me of his love and confidence in me as his wife.

              We went to bed, but I lay awake long into the night, testing Ron's words against my unbelieving heart.  "Is there any way I was pleasing him?  I didn't look like any other pastors' wives that I knew.  They all seem to have such a vibrant role in the life of their church.  I could barely teach Sunday School three weeks in a row without having to cancel because one of my children was sick."  I finally sank into a restless sleep.

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

              He slammed his fist into the edge of the sofa, causing me to jump in fear.  We were steering towards another head-on conflict, our marriage on a collision course.  Ron cried out, "Why can't I make you happy?  All I want to do is to make you happy!  What is it that you want me to do?  Should we leave the ministry?"

              The argument began when I told him that I couldn't handle being the parent of two severely handicapped children and minister's wife of a growing, active church.  God was asking too much in moving me to this town where I do not feel fulfilled.  Loneliness and defeat were my constant companions.

              The pain in Ron's eyes and frustration in his voice jolted me to look candidly at what I was saying and see the agony I was putting my husband through.  I attacked the very core of his life, and he responded defensively to my hopelessness.  Underneath all my passionate arguments, I knew none of what I was saying created my unhappiness.  Neither Ron nor the church caused the turmoil within me, but both were easier to blame for the pain inside me.  It was too painful to face the truth of my heart.

              "No Ron, you are not responsible for my happiness or my unhappiness.  Only I can be accountable for that.  You are responsible to do what God is calling you to do.  I don't want you to be anything except a pastor."  I spoke quietly as though I was convincing myself of these truths.  I sensed that the Spirit of God was confronting my heart and I was treading on holy ground.  The Creator of the universe was again trying to show me that the pressures I had placed on myself were created by me only.  Neither Ron, the church people, nor God Himself were to blame for my formulating the impossible job description that I had written.

              God never intended for me to bear the problems of my family, the church, and the world – that was His job.  I did not please God by trying to accomplish more than what He was asking me to do in caring for my children.  All that He wanted from me was my undivided trust and adoration of Him.  God did not love me for the work I could perform.  He loved me because I was His child.  He never intended for me to carry such an unbearable load.  My job now was to release the expectations I had for my life and believe that God's plan for me included peace and fulfillment beyond what I could ever imagine.

              This first step of trust needed to begin in my own marriage.  I had always refused to believe Ron when he told me I was doing a good job as a pastor's wife.  I had been convinced he was just trying to be nice and make the best of being married to a failure.  My drive to do more, to be successful, to gain recognition, clouded my husband's gracious gift of love to me.

              My problem was that I feared people and I cared too much what they thought of my reputation.  I was looking for significance beyond my role as a mother.  I was succumbing to the popular opinion that caring for "hopeless" human life is energy ultimately wasted.

              Searching for importance outside the work that God had already given me to do had almost cost me my marriage and inner joy.  Trusting God and finding contentment in the position that He had placed me did not come naturally or easily, but it was the only safe and secure place to be.

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

              A month later Ryan lay struggling for life in the hospital bed.  He looked at me with longing eyes, desperate for all the love and assistance that I could give.  This two-week hospital stay was like many others that our family labored through.  The possibility of our child's death lingered on our minds.  Miles separated Ron and me from physical contact with each other, and the continuing work of the ministry competed with Ron's devotion to our family.

              But unlike many hospitalizations, I was filled with peace and strength for I was convinced that we were fulfilling the responsibilities God had given us.  In return, God opened His vast storehouse of blessings and delivered His best to us as we continued to trust His plan for our marriage and life.

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

Ron's Reflections...

              As a family with two handicapped children, we've often appeared an unusual sight.  People try not to stare, but sometimes their curiosity overcomes them causing them to neglect basic manners.  I'll never forget the day our family had a teenager with us from another ethnic background.  We were walking through K-Mart.  Joan pushed Kari in her wheelchair while I pushed Ryan, and the boy with us pushed the shopping cart.  Almost without exception people turned their attention toward us.  The puzzled expressions on their faces said it all.  "I can't figure this one out.  What kind of family is this?"

              Most of us are concerned with what people think of us.  Sometimes, as in the day at K-Mart, Joan and I are able to mostly laugh off what others think of us.  Occasionally we are even able to wear it as a badge of honor.  "We know who we are.  We know what God has called us to.  The children God gave us are by His choice.  This is our family and it doesn't matter how odd we look to you or to anyone else.  This is God's design.  If you have a problem with that, take it up with Him."  Such thoughts are a strong fortress against potential attacks.

              We become fearful and apprehensive about what people think of us when we bear, or at least think we bear, some responsibility for circumstances.  For example, in the ministry when things aren't going well I can easily fall into the trap of thinking, "if I just work a little harder, smarter or longer, I'll be able to make everything better.  With more effort I can be the super-pastor everyone seems to want."

              The truth is that I am a finite being.  I have many gifts but I have even more limitations.  There are many things, which are beyond my control.  When I forget that, I get into trouble.

              One awful consequence of giving in to fear of what people thought of me was that I neglected my family in my attempts to please the church.  Joan was very patient with me as I began to face what I was doing and worked to change.  Taking a day off from ministry was a way for me to demonstrate my belief that God is in control.  Gradually I began to relax as that truth sank in.  It also took a long time to get out of the subconscious habit of watching the congregation's opinion polls, a key cause of my anxiety.

              The expectations others have of us, even the thoughts of our spouses, are not necessarily right.  They can expect more of us than what is reasonable.  This too can create anxiety.

              Shock is the best way to describe my response when Joan told me one day that it wasn't my job to make her happy.  I truly thought it was.  Aren't husbands to make their wives happy?  I now believe the answer is no.  My job is to do what is right and to love my wife, realizing that I am finite and cannot meet all her needs.  Only God can do that.  I now realize this applies to all relationships.

              Now when people are critical of us, it still hurts but we try to remember to take it to God.  We ask Him what He thinks, are open to change where needed, but basically move forward the best we can.  We allow God's love to cast out all fear, including the fear of what people think of us. 

A successful family overcomes fear of people and their criticism.

Previous Chapter          Chapter Eighteen          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