Chapter Twenty-one

              When Ryan died, memories of experiences in surgical waiting rooms returned to me – the anxiety of sending Ryan through the operating room (OR) doors alone, the frustration of not being allowed beyond those doors, and the test of patience as I waited for my son's return, knowing he was in good hands all the while.

              Again I felt those emotions.  Ryan had gone somewhere that I could not go.  Earth had become my waiting room but I did not want to wait.  I wanted to see my son again, but God whispered, "No, you wait here.  And while you wait, though you are sad now, I want you to experience my joy."

              How can I have joy in this place?  Heaven is the new residence of my heart; flesh of my flesh is there in the presence of the Lord.  The only joy I want to share in, is with Ryan and what he is experiencing.

              How can I have joy in my mourning?  Will my family survive during this time of intense grief?   What does joy mean to me anyway?  I know joy is different than the happy feelings I have when I finally beat my husband in a tennis match, or the excitement I experience when packing for a camping getaway.  I also know that I have experienced real joy during other times of difficulty.

              Yes, I have experienced this emotion sent from God.  If I hadn't, I would surely have become angry and bitter.  I had tasted of these emotions when I had not allowed God to change me.

              I do have a choice.  Will I hold tightly to these emotions or do I want to step out in faith and follow the path that God wants me to take?  His path involves looking at the death of my son from His perspective and not from my own small view.  I know God is good and only allows what is beneficial to my life – even perplexing things.

              Truly, He has been faithful to our family, keeping us together through experiences that should have destroyed us.  God has provided a way for His children to conquer this world of pain.  The first step to experiencing his joy is placing my trust, hope and faith in Jesus.  At least that's the way it had worked in the past.  Will it work that way now, now that death has visited our home?

              I remember sitting in the kitchen of a mother whose six-month-old baby had died two days before.  Kari was a year old at the time.  I said little to this woman in her grief, for I had not lost a child and did not know what comfort to offer.  I cradled her sobbing head on my shoulder; feeling the intensity of her misery.

              When I finally spoke, I mentioned the sweet memories that little Billy had left behind.  Her response startled me. She pushed herself away from me, cursing that she never wanted to hear his name said again.  "The best thing I can hope for is to be able to forget that he ever lived.  Then maybe my pain will go away and I can return to living a 'decent' life."

              I now understand the pain of losing a child, but never do I want to feel the depth of hopelessness that Billy's mom had then.  I don't want to forget Ryan for a moment.  If anything, I fear that in the midst of my deep pain, I will misplace some of my treasured memories of him.

              The day that we were told our children were severely disabled we had hope – hope that one day Jesus would return and make everything right.  Our children would no longer suffer.  That hope carried us and gave us the ability to enjoy our children each day.  Will it also carry me now when I don't have Ryan with me at all?

              The last time I visited Billy's mother, no pictures of Billy hung on the wall.  She had done all she could to distance herself from him.  She had also separated from her husband.  She had kicked him out of their home and was filing for divorce.  Her oldest son was on drugs and she had no idea where he was.  She looked as if she had aged ten years.

              Ron and I often reflected that during Ryan's life we were given a wonderful gift – the chance to love unconditionally.  It has been a challenge to love in this way, but it has brought fulfillment – the fulfillment that comes as we give ourselves completely to a child committed to God.

              Ryan taught us that.  He couldn't say the words we wanted to hear.  He couldn't do the "tricks" that make every parent proud.  What he could do was need our love, our unconditional love, and in giving him that – we found great satisfaction.

              Two years before Ryan's death, Ron and I had a "date night."  Loie babysat while we went for dinner and a peaceful stroll around a nearby lake.  It had been a stressful few weeks.  Our child had come through another hospitalization and Ron was working long hours at the church.  These few hours alone were cherished.

              While watching the sunset from a resting place, Ron proposed a Bible verse for our family to consider as our "life message."  It was from Acts 20:35.  "In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’"

              Jesus had placed two of his weakest children in our family.  His command to give rather than take connected with me.  I could relate to the kind of hard work that verse was talking about, and I also have experienced the joy that comes from pouring my life into children who cannot give back.  An amazing thing happened.  As I would give, God not only provided the energy I needed to keep up with their care and endure their suffering, he also supplied me with enough joy and love to share with others.

              Kari's surgery experience at New York's Presbyterian Hospital, when she was three, was an example of this.  What was to be a simple surgical procedure became a nightmare.  While on the operating table, her body began to seize.  Eight hours later (and still in the recovery room) the seizure showed no signs of stopping.  We feared we would lose her, when finally an IV anti-convulsant took effect.

              Later that evening, after the situation had stabilized, Kari was transferred to a semi-private room.  When we arrived, I was introduced to her roommate.  Vincent Edmunds was an eight-year-old boy from New York City.  Well-versed in street slang but lacking in common courtesy, he had a tough exterior and a very annoying way with the nurses.  He had used up their patience as he waited in the large city hospital for his mother to claim him again.  After his arrival at the hospital, she abandoned him.  Social Services were still trying to locate anyone who was even a distant relative of Vincent.  So there he was, looking for trouble.

              Fascinated with the arrival of his new roommate, Vincent insisted on knowing everything about Kari.  He climbed on her intravenous (IV) pole to get a better look at her, crudely verbalizing his dislike at having to share a room with a girl.  He searched through my bags for something to eat as the nurse asked me questions regarding Kari.  I was exhausted; I didn't want to be bothered with an obnoxious eight-year-old on a day that Kari was so close to death.

              I wanted to complain.  Who could blame me if I demanded a room for the protection of my daughter and for my sanity?  I hesitated.  Something inside me said; "Joan, look beyond his tough skin.  There is a scared little boy in there."  During the next three days, I discovered the emotionally destitute child inside him and it was love that broke through.

              Vincent ate all my cereal, crackers, juice, and fruit that I had hoped to survive on during that stay.  He knocked over Kari's IV pole twice.  He brought all the other bored kids in the hospital into our room to play games with me.  At night, he would wake up with nightmares; screaming out for my presence.  He was a nuisance.  But in the midst of it all I received supernatural joy, because God had placed in our room a little boy who had more needs than Kari or me.  He needed to experience love and he needed to know Jesus.

              Each night at bedtime, Vincent would crawl on my cot along with me as I read my Bible and told him about Jesus.  He had never heard about Jesus and he was eager to learn. What a privilege it was for me to be the first to introduce him to the God of the universe.

              I still pray for Vincent.  What kind of life could he possibly hope for?  His family abandoned him after he was severely injured by a hit and run driver.  And yet it seemed that God had hope for Vincent.  Perhaps it was not by accident that Kari was assigned to his room.

              Joy did not come to me in that New York City hospital because my daughter was healed, because she was not.  It didn't come because God had sustained her life through a traumatic experience, though I was grateful that He had.  It didn't come because I reached beyond my own needs to encourage Vincent, although that gave me a good feeling.  But joy came through obedience to the desire of God, through trusting Him despite the frightening circumstances.  It came by persevering through the long nights and anxiety-laden days.  It was God's sweet reward to me.  He took pride in giving me His best, in filling me with happiness and contentment.  It was His power flowing through me that enabled me to find joy where I least expected to find it. 

              During each hospitalization, there were always opportunities to reach out beyond our own painful circumstances to share the love of Christ with a child or grieving parent that needed the same hope, joy and love that we had found.  It was never in my own strength.  I felt weak and preferred to be selfish, focusing on my own concerns. But God gave me strength to reach out.

              "It is more blessed to give than to receive."  Yes, it was our family's desire to follow those words of Christ, even though there were many times that we weren't sure we could do it; not sure we even wanted to try, especially when we were hurting so badly.

              So often Ron listened to others in their difficulties when he himself was filled with pain – even under the threat of losing one of his children.  How often I sat by my child’s hospital bed and prayed for the people in our church, sometimes sending notes of encouragement – trying desperately to look beyond my own painful circumstances and identify with theirs.

              Sometimes it felt to us that pastoring a church and having two severely disabled children could not mix.  Either one was difficult enough on its own.

              I have no doubt that many would have understood if we had institutionalized our children so that we could be more effective in ministry.  That was never an option we considered for even a moment.  I'm also sure it would not have appeared abnormal if Ron had searched for a new job that didn't require the hours and emotional stress that pastoring a growing church demands.

              There were times that I wanted to quit and leave the ministry, but God wasn't calling us to lay aside either the ministry or the daily care of our children to focus on just one of these areas.  Our ministry was our family and our family was our ministry.  We could not afford to have a breakdown of our family unit – the one God put together.  We needed each other. 

              It has not been an easy life to balance; God hadn’t promised us that.  He did promise to give us the power to conquer the obstacles that come our way.  He wanted us to trust and focus our attention on Him and not ourselves and our needs.

              God had given us joy as we traveled through each of these experiences.  But will I have joy in this new world of grief, without my precious son nearby?

              Lamentation 3: 32-33 says, "Though the Lord brings grief, he will show compassion, so great is his unfailing love.  For he does not willingly bring affliction or grief to the children of men."  I believe this promise.  Without Ryan, life will be so different, but I do have the hope that I will see him again.  If we continue to do the things that God is calling us to do, I am convinced that he will give us joy in this anxiety-laden waiting room – even in the midst of this new land of grieving.

* * * * * * * * * *

Ron’s reflections…

              In the telling of our story and the sharing of important principles, we would be remiss if we didn’t explain the most important of them.  Of all the things that Joan and I have written, we wouldn’t want you to overlook this one.  It explains, more than anything else, how we’ve been able to make it as a family.  Before we can explain it we must set the backdrop for why this principle is so critical.

              The disappointments of our life, the pain we have experienced in watching our children suffer, the frustration of not being able to find a cure or therapy that will substantially help – all of these undeniably and vividly remind us that we live in a broken world.  Fortunately there is an explanation for our experience, one that also points to the solution.  The Bible contains that explanation – the presence of evil in our world, which directly or indirectly causes the suffering we experience. 

              God’s Word explains to us that the disobedience of the first man and woman was the entrance of evil into the world.  It also says that, by nature and by choice, every individual fails to be the good person God asks him to be.  If we are honest, we realize that we fail to live up to our own ideals of what it means to be a truly good person, let alone God’s expectations for us.  The result is that we feel guilt, are guilty of wrongdoing before God and directly or indirectly experience a multitude of other ways in which the world is less satisfying and beautiful than what God originally designed for us.  The bad news is that we share in the responsibility for the presence of evil in our world.

              Fortunately, God in his love for us provided a solution.  The answer was his coming into our world in the person of Jesus, that historic figure who changed the world.  Through his life he modeled what it means to live a life of love for God and love for other people.  He exhibited all the character that we, in our better moments, long to possess.  Most importantly, what he accomplished was the cure each of us needs – forgiveness for sin and the undoing of the consequences of sin.  He did this by laying down his life for us, taking the punishment for sin.  This good news is for all who will receive it.

              The best part of God’s solution, and the purpose of his providing it, is that we are able to know him.  He is our joy. 

              In our youth, Joan and I have each responded to this good news from God, receiving his salvation.  As we’ve grown older and faced various situations in our lives, we’ve also grown in our realization of what a valuable gift we have received.

              With Jesus come all kinds of wonderful promises for those who receive him and his salvation.  One of those promises is that one day our children will be healthy and whole in every way – physically and emotionally as well as spiritually.  For us, this is not wishful thinking; it is our hope, a certainty that allows us to keep moving forward with our lives.  Jesus is the ultimate reason for the success of our family.  We gratefully give the credit to him.

A successful family receives God’s salvation

and has a full life because of his promises.

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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