Chapter Twenty

              The sun rays glimmering through the shade trees cast dancing shadows on the path before us.  A chipmunk scampered up a tree to make his escape before we reached the spot where it was playing.  Ron and I hiked silently through the woods, hand and hand, enjoying the placidity surrounding us and the rare time spent alone.

              Our family and Loie were taking our final vacation together.  Loie was engaged to be married and had moved into her own apartment before Jeremy's birth.  She continued to help me whenever I needed her support, often arranging her daily working schedule so she could spend lunch with me.  She had recently started to work with a local hospice care agency.  Our luncheon conversations often contained stories from her emotionally demanding job.  When I suggested she accompany our family on one last camping trip before her marriage, she jumped at the opportunity.

              We were in the middle of a hot and humid July, so we headed north to the Pocono Mountains and pitched our tent at a cool, shady campground.  Kari and Loie shared a pup tent; Ron, Ryan, Jeremy and I shared another.  My first night under the stars was similar to my nightly stint at home.  Ryan coughed and vomited all night allowing me only several catnaps.  I attempted to care and comfort him without waking Ron or Jeremy, who at three months was sleeping through the night.

              In the morning, I placed Ryan in his wheelchair and watched him relax.  The serene look on his face as he gazed up into the pine trees surrounding our campsite, caused me to forget my horrendous night.  On my way to the water faucet, I whispered in his ear.  "What do you see up there Ryan?  Angels?"  He turned his face towards me and sighed as I kissed his pale cheek.

              After the griddle was cleaned, Jeremy nursed, and the kids fed and dressed, Loie suggested Ron and I take a short romantic hike alone before the next round of meals and medications needed to be started.

              Ron jumped at the opportunity and grabbed my hand as we started off for the woods.  Not far into our walk I began to share my thoughts with my husband.  "You know what Ron?" I spoke softly so not to disturb the peaceful setting surrounding us.  "I really feel like God has been incredibly good to us!  I know many people looking at our family would not have that as their first thought. In fact, I wouldn't have believed it either if God had allowed me a peek into the future on our wedding day."

              He stopped and looked down at me, tenderly tipping my face up towards his for a kiss.  "Yeah, Joan and isn't it amazing that we are still together and madly in love with each other?"  I smiled at his attempt to make sure this walk stayed romantic.

              He was right!  It seemed like the past few months we truly were connecting and not arguing as much.  Both of us were attempting to put into practice the wise advice of our counselor a year earlier.  As a result, we were experiencing a lot more intimacy in our marriage.

              We hiked for another half-hour till we reached a steep rocky incline.  Ron assisted me up the hill and we stopped to rest and enjoy the nature.  I broke the silence, "One day we will be able to take hikes with our son.  I feel so honored to be trusted with a child I will need to teach and train and play with.  God did not have to give us a healthy son when He blessed us with Jeremy."

              Ron nodded his head in agreement as he bit into an apple.  Our agonizing over whether Jeremy was affected with the same disabilities as his siblings ended only two weeks earlier, when our doctor finally convinced us that he was healthy.

              Ron continued to give me his listening ear as I spoke.  "Sometimes I wonder what God has in store for us in the future.  Do you think we are going to make it?  With caring for our three babies, helping out in the ministry, and running a household, some days I don't even think I'm going to make it through the day, let alone years down the road!"

              "Well Honey," Ron responded after a long pause, "I can't promise you it's going to be easy.  I wish I could provide a better answer, but I do know we will need to trust God.  What is that little saying you have printed by your kitchen sink?  Inch by inch life’s a cinch, but yard by yard life is hard.  How about we enjoy our time together now and leave the rest of our life to solve for another day!"

              I picked up his clue that this was not the time for heavy philosophy.  I grabbed the apple out of his hand and darted down the path, "If you catch me I might even let you steal another kiss!"  I teased.

              We ran cheerfully back to the campsite then suggested that we all go to the pool.  Despite the obstacles that abound for bringing handicapped children and a baby to a swimming pool, somehow we were able to overcome and enjoy the water.  All it took was a little creativity.  Each of us cradled a child and cautiously lowered them in the warm water of the baby pool.  As we laughed in the sun that day, we were unaware of the clouds rolling in and the storm about to descend on us.

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

              One week after our little escapade to the Pocono's, I sat rocking in the living room nursing Jeremy.  He smiled at me as he ate.  It was such a joy feeding him and watching him grow.  Today he was celebrating his three-month birthday.  Ron was spending the weekend in New England with the youth group on a mission trip, so my mom had offered to take Kari while Ron was away.

              My sons and I had just returned home from the Sunday morning service.  It was a different experience for me.  Usually I sat in the front with my children and pastor husband, rarely getting a chance to greet people in the back after the service.  This morning I sat in the back, alone with my sleeping newborn and Ryan beside me in his wheelchair.  He had been having so much difficulty with breathing; I wasn't sure he would be able to stay throughout the service.  For two months he had chronic pneumonia.  His lungs were no longer recognizing the aspirated tube feeding as foreign material, and they were accepting it without resistance.  He was constantly experiencing shortness of breath and gurgling sounds came from his lungs.  Despite frequent pulmonary treatments, including suctioning, his lungs continued to fill up with fluid.

              I watched Ryan with great delight as he sat quietly in the back row throughout the morning.   He even enjoyed all the attention he received as people filed passed him after the service.  Being in the back, right by the aisle, he caught the attention of everyone who came by.  He intently looked in the direction of each person as they rubbed his buzzed hair, as though he was saying to them, "thank-you for noticing me.  I won't forget you."  All of his actions had intrigued me this morning because they were out of character.  Now as I sat watching him lying on the couch, I saw something else that I had not seen before.  I was terrified.

              While he lay before me, his feeding pump droned on, forcing the formula into his stomach.  Fear filled Ryan's eyes as the feeding refluxed into his lungs.  His garbled breathing caused him to foam at the mouth.  None of his medications were doing anything to prevent this devastating reaction.

              "God, can you hear me?  My son is suffering incredibly and nothing is working anymore!  The doctors have tried everything!  He is drowning in his own secretions.  Why is he suffering like this?  Is Ryan preparing to die?  I saw his face this morning at church.  He knows something that I don't.  Why does he now look at me with those terrified eyes as though I don't understand?  Is he trying to tell me something?

              Oh God, my heart rejoices with my baby son but it is being crushed with grief for my oldest son.  How much emotion can one heart withstand?  Tell me God, is Ryan going to see his tenth birthday?  Or even his sixth?  Will he never even lose a tooth?  Will he ever be free of this horrible suffering?  Please, God, don't turn a deaf ear to me.  I'm so afraid!  I'm so alone and feel so hopeless to help him anymore.  Do you know what it is like to watch your son die before your eyes?"

              I knew the answer to that – of course God knew, but I needed desperately to voice it so I could release all my fears.  I focused my attention back to Ryan, turning the dreaded feeding pump off and suctioning the thick white secretions from the depths of his bronchial tubes.  He coughed, arched his back and screamed in protest.

              Finishing this task that I had grown to despise, I watched him relax in my arms as I put the breathing mask over his face to fill his lungs with air again.  His stomach was bloated with just the two ounces of formula the pump had forced him to take.  He looked like a child in a country of famine.  "Ryan honey, you just have to eat!"  He whimpered in complaint and pressed his head into my chest.  He took deep rapid breaths as I began to sing the song I had written for him during a long ago hospitalization.  It was my hope that he would sense my love for him as he heard the soft melody.

     "Oh Ryan, all I want you to know with your eyes, with

        your ears and your soul, is that I love you so."

     May your eyes see the light that shines from my face

        when I hold you tight.

     May your eyes always speak the desire for life and love

        until they close to sleep.

     "Oh Ryan, all I want you to know with your eyes, with

        your ears and your soul, is that I love you so."

     May you hear the words that I sing to you.

     May your ears always know my voice.

     Listen my child to the sweet sounds of your family

        around you.

     "Oh Ryan, all I want you to know with your eyes, with

        your ears and your soul, is that I love you so."

     May you always feel in your soul the compassion that

        flows out of me.

     And may you always be the little boy God created you to

        be.

     There may be a time when you see or hear or feel no

        more.

     The things that bound you will be gone, but my love for

        you will still hang on.

     "Oh Ryan, all I want you to know..."

              His breathing slowed and my tears dripped on his thin, frail legs.  I knew the time had come for me to face reality. I didn't want to see it; but for the love of my son, I had to.

              It was late when Ron came home from his trip.  The house was dark and the children were sleeping.  I had kept the air conditioners running; the July night was sweltering.  Ron lay down beside me and I felt his gentle kiss on my wet cheek.  "Ron," I whispered in the darkness, "tomorrow we have to talk about Ryan!"

              Monday morning the summer heat wave continued.  I went about medicating and feeding Kari.  I skipped over Ryan until I had a chance to nurse and change the baby.

              Jeremy kicked his little legs with delight when I entered his room.  "Good morning baby."  I tickled his little belly and watched him smile in response.  He was always so good and easy to care for.  He ate quickly and did not resist when I placed him in the swing to wait his turn to be entertained.

              I prepared Ryan's medications and entered his cool room.  He lay still, propped on his many pillows.  I had left the feeding pump turned off all night and he had slept soundly without once needing my attention.  I watched him closely as I injected the medicine slowly into his G-tube.  He immediately arched his back and cried out in pain.

              I picked him up and carried him to the kitchen where Ron was preparing our breakfast.  It was his custom, on his day away from the church, to fix us a cooked breakfast.  When he saw me enter, he started telling me of his trip to New England.  I listened only halfheartedly as I continued to battle the pain within me.  I pressed Ryan against me and rocked him gently.

              "Ron," he quieted when he saw I was no longer hearing him.  "I don't believe Ryan can handle feeding anymore.  He has lost another three pounds over the past two weeks.  Look at him, he is nothing but bones!  The weekend has been horrible!  I've never seen him struggle for his breath like he has the past three days.  He is terrified whenever I put anything in his stomach tube."  My voice was barely a whisper.  "Ron, I think Ryan is dying, but I haven't wanted to see it before."

              Ron said nothing.  The silence was oppressive.  "What do we do Joan?"  He continued throwing out his desperate questions in my direction.  "How much feeding did he take this weekend?  What has the doctor said?  Is there any thing else we can try?  How long can he live like this?" I answered each of his questions in detail but paused on the final one.  "Ron, his body is rejecting everything I put in him.  He can't go on much longer like this.  The doctor suggests we not force anything into him today and see how he does."

              The rest of the day his little body was relaxed and happy.  He smiled at everything.  We hadn't witnessed a smile from Ryan in months, but today I could not enjoy it.  His satisfaction in not taking nourishment was killing me.  I wanted him to keep fighting but he seemed too content with giving up.  I cried all day.  After dinner, I suggested we escape outside and enjoy the warm summer evening.  The scorching midday heat had kept us trapped inside our air conditioned home.

              Ron and I worked silently in our little vegetable patch.  We had not said much to each other all day.  Nothing seemed important compared to the fact that our son was dying.  Kari and Ryan both sat in their wheelchairs and Jeremy watched contentedly from his stroller.

              As the sun was setting, I laid down my hoe and unbuckled Ryan from his seat.  His back was sweaty but he continued to smile as I hugged him close to my hot body.  His frail five-year-old body was light in my arms.  I danced around the yard with him in my arms, singing a lullaby until my sobbing overtook my melody.  "Oh God," I cried as I collapsed on the freshly cut grass pulling Ryan on top of me, "please don't make him suffer long!"

              The sun sank below the horizon as Ryan slept in my arms.  As I carried him indoors, I had no idea this had been his last time outside.

              "Someday I'll stop weeping and I'll find joy in the morning," I penned the words in my journal that evening after the children were sleeping.  "But today my son is dying and my tears help me see even more clearly my incredible love for him."

              Ryan slept through the night and continued his smiling and contented nature in the morning.  I again called Ryan's physician, but he continued to encourage me to not force any feeding, only water.  Throughout the day his breathing again became labored as water slowly dripped into his G-tube.  By evening, fear had returned to his eyes again.  I stopped the water drip and later he smiled at me when I placed him in his bed that evening.  He lay awake quietly staring at the ceiling.  By five in the morning, he still had not fallen asleep, so I crawled in bed beside him and cradled him in my arms.  He trusted me and closed his eyes.  His fear was gone.

              A few hours later I awoke in a panic, "Ron, I just have to try to get him to take some fluid!  I can't let my baby starve!"  I slowly injected a teaspoon of water into his G-tube.  Ryan instantly gasped for air and his bronchial tubes constricted sending him into spasms of coughing.  Blood sprayed from his lungs and he arched his back in pain.  He cried out and his struggle did not stop for another hour.  He gasped for air between sobs.  He looked at me with eyes that screamed, "Mommy, don't you understand?" I left him in Ron's care after Ryan exhausted himself to sleep.

              I slammed the door closed behind me as I left the house.  I couldn't handle watching Ryan anymore.  I had almost drowned my son with only a teaspoon of water – and I was drowning in fear.

              I was so weary; I had not slept soundly in thirty-six hours.  Loie was on vacation but I was too afraid to call her to let her know that Ryan was not doing well.  I continued to also care for Kari and Jeremy but I was reaching my breaking point.  I knew I had to call Loie; I would never forgive myself if Ryan died without her being here.

              When I entered the house, Ron was still rocking Ryan.  Jeremy was crying for food and it was already an hour past Kari's scheduled medication time.  "Ron, I just have to help Ryan!  I collapsed in the chair to nurse Jeremy, avoiding the eyes of my husband.  I didn't want him to see through me; I felt like a failure.  Even my nursing degree was worthless to my son now.

              "Joan, look at me."  Ron spoke gently but firmly.  "You are not starving your son!  Ryan's body is shutting down.  It is not accepting fluid anymore.  You know what the doctor said, and you know what Ryan is trying to tell us.  You must let him go!

              "You are a good mother and you have done an incredible job at caring for our son.  But you must see that he can't go on much longer.  God is giving you a chance to say good-bye to Ryan – please take advantage of this time.  I want you to be here for him!  Oh Honey, don't you see that the pain you're feeling is because you love Ryan so much, not because you are failing him?  Don't leave him alone, I'll get us help for Kari and Jeremy."

              Thursday, assistance did arrive.  We opened our doors to caring individuals from our church.  They provided food, hugs, tears, and encouragement.  Loie came home from her vacation and stayed by our side throughout the day and night.  Our parents helped with Kari, Jeremy and the household responsibilities.  Ron made arrangements with the funeral director and planned a memorial service.  I gave all my energies to Ryan.  I could not sleep and kept him cradled next to me day and night.

              I played Michael Card's "Sleep Sound in Jesus" lullaby tape over and over for him.  The corresponding book lay open on my bed and the meditations to parents eased my troubled spirit.  When Ryan's pain was intense, I kept the page opened to a picture of a heavenly angel hovering over a sleeping boy.  It reminded me that there were angels surrounding Ryan.  They were just as concerned as I, but unable to do anything until their Commander-in-Chief gave orders to carry Ryan to heaven.

              By early Saturday morning seeing his suffering body was more than I could bear.  As day was dawning, I silently slipped out of our house and walked down the deserted road.  I raised my heart and eyes towards heaven.  "How long, Oh Lord, must I watch this child suffer?  Why don't you take him?  Do you take pleasure in seeing a five-year-old little boy in pain?  Will you not accept him in your presence?  Haven't you promised you are preparing a room for him?  He is so innocent he doesn't deserve to suffer.  I am the one who is full of sin.  What else do you want me to learn through this incredible suffering?  Every time I look into my son's dying face I see yours, Jesus.  I know you are identifying with him in his death.  I can't bear this anymore.  Please Jesus come for him!"

              I entered the house and collapsed on Ryan's empty bed.  He had been sleeping in ours for three days.  I slept deeply for an hour, and awoke feeling refreshed and strengthened.  I shuddered when I remembered the questions I had thrown up into heaven's face.  I knew my Lord was able to handle them and He was responding to me even now.  The energy I felt after just an hour sleep was reassurance to me that God was carrying me through this horribly painful journey.

              Late that evening when my brother Joe arrived from Chicago, I knew the end of Ryan's life was coming soon.  Joe was the only relative that had not had a chance to say good-bye and his presence was a comfort to all of us.  Our son's battle for life was finally over the next morning. His soul had departed the shell of the little body that I cradled in my arms. Ron whispered tenderly into his ear, "Good-bye for now little Ryan.  We will see you later."

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

              For days and months ahead, comfort to my grieving mother's heart came only through those final words, the confidence that I would see him again.  When I saw the face of Christ in the face of my dying son, I was reassured that Ryan had taken part of the sufferings of Jesus.  Now in his death he was beginning to partake of the blessings of the resurrection.  (Philippians 3:l0)  He could walk and run and dance and sing and laugh!  Most of all he could see his Savior face to face.  He was free to worship Jesus without sin's devastating effects on his earthly body, and one day I would be reunited with my son and witness it all.  This was the only hope that kept me sustained through the pit of my grief.

              I chose to face the pain, of being separated from my son, head on.  I did not deny it or run from it.  He was gone and he had taken a part of my heart with him.  The battery of emotions that revealed themselves when I was faced with the reality of his death overwhelmed me.  I loved him deeply and his absence left a hole in my broken heart.

              I had not withheld any love from Ryan while he lived.  I had not turned my back on his disabilities or distanced myself from his suffering.  Because I identified with him so fully, his death ripped my world apart.  Even though I still had a newborn baby and a severely disabled seven-year-old, I felt as though I had nothing left to do in life.  Ryan had consumed many of my energies in the last months and God had stretched my heart to provide the love that Ryan needed.  No longer needed to provide his care, I felt strangely empty.

              My mind became a roller coaster of emotions.  I felt guilt for asking God to take my son during the depths of his suffering.  Now only days after his death, I felt the time I had with Ryan had been too short.  There were days that I felt relieved that I no longer had to care for him.  Then I would plunge deep into guilt.  I did not want life to be less complicated; I wanted my son.  Life was not easier without him!

              My desire to blame surprised me; my emotions were out of control.  In my head, I knew I had committed my son to God, but my heart needed to cry out to someone whom I could hurt as I was hurting.

              I received a card of condolence from Ryan's neurologist and his gastroenterologist on the same day.  Both were genuinely compassionate in their sympathies, yet I treasured the one sent from the neurologist, and rejected the other.  The gastroenterologist was the one who could not nourish my dying son.  He was the one who said no more could be done.  I was ashamed at my need to find fault, and too cowardly to lay my heart out before God.  It meant that I would be brought face to face with His incredible compassion, His great love, and His everlasting justice.  My feeble mind was no match for His available mercy.

              Intense anger immobilized me. It exposed the ugliness of my heart and showed itself when I least expected.  A comment that was comforting one day would send me into a frenzied battle of my mind on another.  A routine trip to the pediatric dentist with Kari resulted in my body becoming a quivering mold of Jell-O.  Panic ripped through me!  "My son should also be with me!"

              But the situation that sent me most into the grip of bitterness was seeing people who had never been able to reach out to Ryan during his brief lifetime.  Now they were embracing my youngest son with open arms.  Jeremy was easy to love, and he had much more potential in returning that love.  Jeremy's happy demeanor automatically drew people to him.  Ryan had little success in life, and loving him required bearing his pain and self-sacrifice.  It was easier to overlook his need for acceptance than to learn how to relate to him.  I knew that if I dwelt on this bitter observation, it would consume and trap me.

              "Oh God help me see beyond this.  Let me see the pain in others that keeps them from reaching out in love to those who need it most – the weak in our world.  Heal my wounded heart, so that I may comfort others.  Forgive my complaining, I don't want this root of bitterness to entangle me anymore!"

              I was often fearful because I could no longer control the emotions within me.  Sometimes I would run from people.  Other times I longed to be with them.  Often I felt panic before going to church, but once there, I felt comfort. God was there, and through my husband's sermons Jesus became more real to me than ever.

              In my home, I sometimes felt closed in.  I wanted to escape, for everything reminded me of Ryan.  I missed him so much.  Other times my house felt like strong comforting arms around me, and Ryan's belongings brought warm affection to my soul.

              I fluctuated between wanting to talk and laugh and be silly and then later longing to cry and be silent, dreaming about my son.   These were all a part of the emotions that

God had given me.  Healing of my loss came as I trusted Him for each feeling and He gave me joy in return.  Eventually memories of Ryan became sweet to me, and the intense pain of grief diminished.  Weeping had remained for the night, and it was a long night, but joy had come in the mourning.

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

              The evening of Ryan's home going, I walked outside and looked up into the heavens.  I knew he was there.  The brightness of the day was dimming.  A warm breeze gently brushed my face; the air was saturated with the aroma of fresh earth and cut grass.  Mist rose from the neighboring swamp.  Birds were singing their night song; crickets chirped in unison, and fireflies twinkled their fleeting light.

              It was then that I noticed the brilliant sunset splashed across the sky.  Bursts of color – orange, yellow and red were delicately layered on the canvas of the horizon.  I called for Ron before the sun set and took with it the blazing display.  "Come and see the picture that Ryan painted for us tonight!"  Heaven had welcomed my son home.  We imagined that this sunset was Ryan's way of saying; "Thank you, mom and dad, I'll see you soon!"

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

Ron's Reflections...

              The day that Ryan died was to be the day in which Jeremy (along with several other children) was to be dedicated to the Lord in a special service at our church.  We were going to publicly present our newborn son to the Lord.  Instead, it was our five-year-old son that we privately presented that day.  In place of the scheduled child dedication ceremony, the congregation held up our family in a special time of prayer as we kept watch by Ryan’s bed.  A few hours later he was with Jesus.

              When Ryan was less than a year old, we had dedicated him to the Lord.  It wasn’t a typical dedication.  The words were modified to acknowledge the fact that he wouldn’t grow up to serve the Lord the way in which other children could.  Even then, we had placed him in the Lord’s care in a special way. 

              When we dedicate children to the Lord, it is a way of recognizing that they belong to God.  They never really are our possession and they are with us for such a short period of time.  The responsibility to raise them for the Lord is a big one and our ability to guide them and meet their needs is so limited.  We do best when we remember that:  “Little ones to him belong.” 

A successful family entrusts each member into Jesus' loving care.

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Copyright (c) 2002 by Ron and Joan Denlinger