Chapter Seven

              I stopped and looked out the window to the street below.  Yellow cabs hurried about in their pursuit of business.  People rushed along the sidewalk with an obvious destination in mind on this Friday evening.  I turned away, and continued my stroll down the hospital corridor.  "What a unique world, behind these walls," I mused.  "After only five days in this place, I have already forgotten my life outside this building.  I hope I'm ready to face the rest of the world."

              The doctor had just informed me that Kari could go home tomorrow.  Although the results of the genetic tests would take weeks to complete, she was doing well on her new medication.  He felt confident that I could continue her injection.  It would be good to be home again.

              Saturday morning, the nurse checked Kari's vital signs.  She put the tiny blood pressure cuff on her arm and quietly listened.  She repeated the procedure.  By the third time, I became concerned.  Turning to me, she finally spoke. "I must call the doctor.  Kari's blood pressure is very high."

              He arrived studying Kari's chart, and then took the blood pressure himself.  "I'm sorry Mrs. Denlinger, but it looks like Kari has developed hypertension, a side effect of the ACTH.  I need to start her on blood pressure medication right away.  We need to lower that blood pressure.  She'll have to stay here in the hospital a couple more days."  Sadly I looked around the room.  I wanted what was best for Kari, but having to stay in this crowded city hospital room was more than I thought I could handle.

              I gave a half-hearted smile to Justin's mother who had heard the conversation.  "Join the club," she calmly said to me as the doctor walked out the door.  Justin had   already been here three weeks. He was ten years old and severely handicapped.  He was in much pain from a recent surgery and cried every time he was moved.  His mom sang to him and rubbed his legs; constantly reassuring him she would not leave him alone.  Although he couldn't talk or see, I observed a tender bond between the two of them.  Justin always knew when his mother had left the room.  He would wake up and cry until she came back.  One day she told me that she had been in the hospital over 20 times with him.  She knew the technique of surviving hospital life, a skill I benefited from a few times that week.  Her calmness and confidence in caring for her son, despite his many needs, impressed me.

              Priscilla's mother sneered as she spoke.  "This is a miserable club to be part of."  I smiled politely but said nothing.  I had not talked with her much all week.  She always seemed distant and bothered by the other children in the room.  She saw Priscilla a few hours each day, but spent most of the visit on the phone, talking to her friends about how lousy the hospital was.  She seemed angry much of the time and frequently expressed her frustrations to Priscilla.  Her six-year-old girl had Spina Bifida and had just undergone her fourth surgery.

              The other children in the room were also older than Kari, with various disabilities.  As I looked around, a terrifying thought struck me.  "Will my daughter be like these children?"  Kari was still a baby who was easy to handle.  She was attractive and lovable, especially now that she did not cry all the time.  "What is this club they are talking about?  I can't imagine Kari ever having contracted muscles like Justin.  Her plump little body is normal. Why am I even thinking this way about the future?"

              "Hi Honey," Ron popped his head in the door.  He had spent the night in the parent's lounge, expecting to take Kari and me home today.  After I told him the change in plans, he suggested we leave Kari in the care of the nurses and take a walk around the city.  I had not been away from her all week.

              Outside the cold air and sunshine on my face felt refreshing.  We walked in silence, listening to the sounds of the city, and enjoying the scent of steaming soft pretzels and greasy cheese steaks from the sidewalk vendors.  Before long, my nose was frozen.  We stepped inside a warm cafe to eat lunch.

              At our little table, Ron brought up a subject that we had avoided for weeks.  "Joan, what are we going to do about our plans to move to Connecticut?"  We were only a few months away from our projected moving date.  I knew much planning needed to occur before that could happen.  Because RHMA was a faith mission, we church-planters needed to obtain our own financial support.  Our original goal was to speak at various churches in hopes of raising money for our mission work.

              Kari's hospitalization had changed my focus. I was hesitant to even think about moving from the security of my present world, unsettled as it was, to a world of even more uncertainties.  Living by faith financially was not something I wanted to consider at this point.  Could it really be that God would still be calling us to move into church planting?

              "Ron," I questioned, "why would God give us a desire for something that we may not be able to fulfill?  There is such a need for missionaries and we are willing to serve.  Why does it seem like He is preventing us from going?"

              "I don't know, Joan," Ron answered, "but I do know that we need to trust Him one day at a time.  I learned this week that our church has already pledged 40 percent of our full time support and we haven't even given our presentation to the congregation.  They are behind us, Honey."

              I couldn't deny the support of our church family.  All week we had been receiving cards and phone calls from them, telling us that they were praying for our family.  One of the church elders and his wife were coming that evening to take us out to dinner.  This man had a passion for missions and I knew he would encourage us to not give up hope.

              I placed my crumpled napkin on the table and looked Ron in the eye. "I know, I'm not to worry about tomorrow, for today has enough problems of its own.  Pray for me that I can trust God for today," I pleaded.  Ron took my hand and said, "Let's keep ourselves open to the possibility of God using us in missionary service."

              Kari's discharge from the hospital was delightful.  I couldn't wait to get home.  We opened the door to a squeaky clean apartment. Groceries filled the cupboards and overflowed onto the counter.  My mother, aunt, and grandmother had devoted their time and energy to making our homecoming pleasant.  Oh, the little city apartment never looked and smelled so good.  Home Sweet Home!

              I immediately set up a mini-medical center in our kitchen.  Kari came home on four medications, three of which were to counter the side effects of the steroid.  I made a chart to help me remember the amount and times for each of them and I organized the supplies for her daily injection.  She also needed her blood pressure taken four times a day.  Along with the normal infant care, I had to be extra careful to keep Kari's environment germ free since ACTH suppressed the immune system.

              Despite our round-the-clock meticulous care, Kari was sick within days of her homecoming.  The ACTH accumulating in her body was causing more negative reactions.  Her appetite, which had increased in the hospital, was now decreasing to the point that I needed to work all day to feed her eight ounces of formula.  She developed severe diarrhea, irritability and insomnia.  Her breathing was rapid and her temperature climbed.

              After only a few minutes of examination, our pediatrician sent her to the local emergency room.  Kari's admitting diagnosis was pneumonia and severe intestinal flu.  While I answered the questions of the admitting physician, Ron called our pastor to have him pray for our daughter.  Kari was fighting for her life, and only after four days of battle did she start to improve.

              Our friends from church celebrated with us as they saw their prayers for our daughter being answered.  One couple especially encouraged Ron and me.  Mel and Joyce Eby were the parents of two special needs children.  Their oldest son had been a part of our youth group and died when he was only sixteen.  Jerry's response to life was powerful.  He was a teen who was not afraid to face his impending death.  He was not ashamed to voice his need for God, even among his peers. I knew Jerry only a short time, but his joy was contagious.

              That day in the hospital room, the Ebys brought advice, encouragement, and hope.  They informed us our parental rights to know about all the medical tests and decisions concerning Kari.  There would be times when we would need to be her advocate – to express the needs of our daughter. They assured me that I shouldn't feel guilty about requesting to be present during Kari's tests.

              Listening to their sound advice, I felt relieved.  It wasn't that I didn't trust the experts – up to this point we had no complaints about the competency of either hospital. I just wanted to be an informed parent.

              After the Mel and Joyce left, we were given our first opportunity to practice advocacy.  Because of Kari's difficulty in swallowing, I had requested that I be the only one who feed her.  Over the past few months I had become quite adept at holding her neck and head appropriately so she would not choke.  The nursing staff also allowed me to give Kari her medications since they too were difficult for Kari to swallow.

              A frazzled nurse entered the room.  I did not recognize her as one of Kari's regular nurses.  She studied Kari's care plan, then quickly took her vital signs.  She did not speak to Ron or me but hurriedly went about changing the IV bag and preparing medications.  Before I had a chance to interrupt, she shoved the medication down Kari's throat.  By the time I reached Kari's crib, the nurse had left.  Kari gagged, sputtered on the liquid draining down her bronchial tube, and then turned blue.  I quickly grabbed her, turned her upside down and pounded on her back until some of the medication drained out.  She again gasped for air, coughing violently coughed.  After ten more minutes, her sweaty body went limp with exhaustion.

              Ron left the room to find the nurse.  "Excuse me," he spoke firmly, "but you have just put my daughter in a compromising position.  She has been choking for the past ten minutes because of the careless way you gave Kari her medication.  I hope this does not happen again! I do not wish to have to speak with your supervisor." She mumbled an apology combined with an excuse about things being busy on the floor that evening.

              The same nurse returned to the room later that evening after Ron had left.  "Mrs. Denlinger, I'm sorry about what happened tonight.  I never had a baby like Kari.  I am new here.  Will you show me how you feed her?"  I was very grateful for my husband's protection of our daughter.  His willingness to be the assertive one allowed me to focus on being a mom.  Staying in the hospital alone left me physically and emotionally drained.  I did not need the added stress of dealing with inadequate care for my daughter.

              Following Kari's discharge at Lancaster General, we were to take her directly to Philadelphia's Children Hospital.  Overnight, the city of Lancaster had received eighteen inches of snow.  When Ron left our apartment, few streets were cleared of the deep snow.  He worked over an hour, shoveling and plowing his way through the alley to reach the hospital, a half-block away.  Kari and I patiently waited for him; her discharge process completed.  We had two hours to make our appointment at CHOP.

              As I packed Kari in the car, I looked around at the mountainous snowdrifts, wondering how we were going to make it to Philadelphia in this mess.  Both Ron and I had been anticipating this trip.  Kari was going to have a repeat EEG to determine if the ACTH was clearing her seizure disorder.  Since we weren't seeing any more seizures, we hoped for a change in her EEG.  Perhaps it would show that her brain wave pattern was returning to normal, instead of the previous highly abnormal pattern that interfered with her development.  We also hoped to receive a report on the genetic tests that were completed.  Despite the snow, we were determined to make our appointment in Philadelphia. 

              After forty-five minutes of pushing our way through city streets, we reached a main highway.  The traveling was slick and tedious.  Every so often we had to stop so Ron could push someone out of a ditch or snow drift, allowing us to pass.  I prayed while he pushed.  Somehow we ourselves never got stuck. 

              As we approached Philadelphia, we encountered less snow.  By the time we reached the city limits there were only a few inches on the ground.  We reached the hospital three hours after leaving LGH and one hour late for our scheduled engagement.

              Seeing our fear that we had missed our neurology appointment, the secretary quickly assured us that they too were running behind schedule.  Ron slept in the waiting room and I fed Kari.  After an hour, the secretary called to us.  "Mr. and Mrs. Denlinger, do you mind bringing Kari back tomorrow for her EEG?  Our technician lives outside the city and she said there are six inches of snow out her way."

              Ron calmly walked to the desk, and in an even tone explained, "We have just traveled four hours through eighteen inches of snow to bring our daughter to this hospital.  Can it really be true that in a children's hospital of this size there is only one person with the ability to administer an EEG and she is stuck in only six inches of snow?" Within ten minutes Kari was being prepped for her EEG.

              Upon completion of the test, Dr. Packer explained to us that Kari's EEG continued to show the devastating abnormal brain wave pattern.  He wanted to continue her ACTH therapy a little longer.  The fact that she was not having seizures encouraged him.  He went on to say that none of the extensive blood and urine tests, which included the genetic screens, were abnormal.  He encouraged us to enroll Kari in an infant stimulation program in our local community to bolster her lagging developmental skills.

              We left the hospital with new hope that maybe God was testing us.  Perhaps nothing seriously was wrong with Kari.  She just needed more time to develop.  Keeping her on ACTH longer would cause her brain wave pattern to return to normal we hoped.  She truly could live a normal life.  I clung tightly to my hopes.  I focused on enrolling Kari in the best infant stimulation class possible and resolved to be diligent with her therapy at home.

              Now I understood why God was taking us through this!  Kari was going to be a miracle child who broke all odds.  Even though born with a devastating EEG and blindness; she would overcome.  She would be a shining example of how God can do anything.  I had new hope and energy.

              I looked over at my husband as we crept along in the snow returning to Lancaster.  "Ron, lets talk again about our plans for moving to Connecticut.  I think God wants us to move forward with our desire for ministry."

* * * * * * * * * * *

Ron's Reflections...

              If we were looking for an out from missionary service, we were given the perfect excuse.  But we weren’t looking for an out.  We had the opposite problem of wondering how in the world all the pieces of our dream could come about with these new developments. I was hesitant to bring up the subject with Joan.  I wasn’t sure how she would respond.  I certainly couldn’t expect her to be overly enthusiastic.  When we made the big decision to become missionaries it was back when life was simple.  Would she rethink the whole thing?  It would have been understandable had she done so.  But Joan responded in faith.

              I believe that faith isn’t a passive thing.  Although God was providing in many ways for us, we also knew that we wouldn’t get to the mission field if we didn’t talk about what needed to be done, if we didn’t make plans or start to implement those plans.  I also understand that faith isn’t guilty of manipulating circumstances.  It certainly doesn’t take shortcuts or compromise in any way. 

              If I have a choice, of course I’d rather that things would come to me rather than my having to go after them.  I’d rather that my daughter would always get the best possible health care without our feeling as though we have to oversee the work of others.  I’m not fond of those times when I need to call the complaint department in order to insist that our daughter’s needs are addressed.  But sometimes that is exactly what is needed.  The same was true as we sought to advance the kingdom of God, to fulfill the dreams we had of serving the Lord. 

A successful family pushes forward to fulfill its dreams.

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Copyright (c) 2002 by Ron and Joan Denlinger