Chapter Five

              Sitting on the corner of her desk, the professor read the notes from the paper she held in her hand.  Her lecture on child development and parental response seemed more appropriate for students majoring in early education.

              She shifted nervously, glancing up at the thirty nursing students sitting before her.  I smiled in return, feeling sympathy for this lady.  It was obvious that none of my fellow students were appreciating this psychology course.  I was also having a hard time   conceiving how this particular class would help me in my nursing career.  Most of our courses focused on the science of medicine.

              "Okay girls," the professor spoke directly to us, "for the last ten minutes of class I would like to illustrate what I spoke on today.  I realize that none of you are parents, but you may come in contact with this exact situation some day in your nursing career.  This could be helpful."   I sat up in my seat, leaning forward on my desk. "Maybe she'll make this class relevant yet," I thought, giving her my attention.

              She continued, "Imagine yourself taking an extended vacation to a destination of your dreams, like Paris.  You've worked many years, waiting for the opportunity to take this fabulous trip.  The time arrives, and you begin to prepare for this anticipated   adventure.  With the departure date four weeks away, you visit your local travel agency to collect information about this foreign country.  Paging through the brochures, you determine what places you want to visit, what foods you want to eat, what attractions you want to enjoy in this romantic city.  You want to know everything about this place, so you can take full advantage of this trip.

              The day arrives and your bags are packed with all the essentials to make this trip the memory of a lifetime. You've booked a direct flight to Paris.  As the airplane ascends into the clouds, you recline in your seat, anticipating the exciting days ahead.

              After the long journey, with just minor turbulence, the plane lands and you step out into your dream vacation; only to find the pilot has made a terrible mistake.  He has landed the plane in the country of Iceland.  Here is where the flight ends.  Here is where you must spend your remaining vacation time.  There is no turning back and no other flights out.  This is not the land of which you dreamed.  You know nothing about this part of the world, nor do you want to.  In order to survive and experience any satisfaction in this foreign land, you must learn to appreciate and understand the culture or you will be trapped forever."

              The story ended and I watched the professor take her seat behind her desk.  "This girls, is how a parent feels when they discover their child is handicapped. It is a whole new world they know nothing of.  How can you help them? Write an essay for next week.  Class dismissed."

              "Joan," Ron shook my shoulder gently.  "Do we have a social security number for Kari?"  I shuffled through the cards in my wallet then focused my attention on the lady in the admitting office. "Here it is," I said, sliding the card across her desk.  Ron continued answering the lady's questions and I returned to my thoughts.  "Our flight has landed," I thought. "Our preparation and anticipation of a normal healthy child are gone!"

              Ron carried Kari to a room on the third floor.  Five other children and their mothers were also occupying the small room.   The nurse shoved a lounge chair next to Kari's crib.  "This will be your bed, Mom!"  Our total space allowance was six by ten feet.  A thin striped curtain separated us from the next patient.  I watched the nurse go through her admission routine, and wondered if I had conveyed such a mechanical spirit when I worked as a nurse.

              I pushed my feelings aside when Dr. Packer walked in.  He had a team of residents with him and they began to drill me with questions.  Assuming my previous nursing role, I answered as a professional.  It did not take long for Dr. Packer to realize that I was trained in the medical field.  He too started speaking in that lingo, leaving Ron looking puzzled.

              The rest of the day, Kari went through various tests as Ron and I stood by her   side, watching.  It was late when Ron left the hospital, leaving Kari and me alone.  The day had been a nightmare.  Someone dimmed the hallway lights.  Most of the children in the room were sleeping as I pulled the curtain around Kari's crib and my chair.

              My motherly instincts and fears came crashing down on my numbed heart.  I cradled Kari in my arms and cried quietly until no more tears came. "Lord, I've done everything during my pregnancy to protect this little child. I never even drank caffeine coffee.  Why is something wrong with my child?  I'm a nurse, God.  I've instructed pregnant women on how to care for themselves and their child. I followed my own instructions.  Why is this happening to me?"

              Something was wrong with my daughter!  My emotions had been anesthetized all day, but now as I discarded my charade as a nurse, the pain was intense.  I had deliberately avoided my fear, all day, by focusing on the "nurse role."  It was familiar and comfortable to me. I knew if I was going to survive this new and unexpected side of motherhood I needed help to face the pain head on and I needed to be real.

              In the morning, I determined to follow through with my decision.  I would face the reality of this situation without detaching my emotions.  The doctor had started Kari on a seizure medication that sedated her so she awoke looking relaxed.  Unlike other mornings, her horrible irritability and shrill screaming had disappeared.  As I rocked her, surrounded by crying children and worn-out mothers, joy flooded my soul.  She was so content!  God had rewarded my attempt to accept this difficult day.  I thanked Him for the peaceful change in Kari.

              Later that day I experienced another joy of motherhood.  The chaos of her hospital room distracted Kari too much for her to concentrate on nursing, so I offered her a bottle for the first time.  The nipple was much easier to use. The doctors explained to me that Kari's sucking ability had not fully developed.  For the first time, feeding her became a pleasant experience.  As I cradled Kari against me, I finally felt the bonding that occurs between baby and mother that usually happens naturally to nursing mothers.

              Amidst the storm that was raging around me, God granted me these few moments of peace as I watched Kari enjoy eating.  Her big dark eyes blankly gazed toward the direction of my face.  She did not focus on my eyes but I knew that if she had the ability, her desire would be to discover the face that belonged to her mother.  At this moment, my daughter showing pleasure in my presence was all I needed.

              Later, I attempted to catch a few minutes of much-needed sleep while Kari rested in her crib.  I heard a group of people walk into the room but did not open my eyes until I realized they had stopped by Kari's crib.  It was another neurologist and a large group of interns.  He glanced over the side of Kari's crib.  He gently rubbed her legs and then lightly pinched her cheeks.  "What a shame!  She looks so beautiful!"  Then turning his attention to me he added, "Although externally it doesn't look like anything is wrong, her CAT Scan taken last evening shows that Kari's brain is shrunken.  We can't give you any hope that she will live to see her first birthday."

              No one said another word.  As they walked from the room, the neurologist paused briefly, rubbed my shoulder and then he left.  The room was strangely quiet.  The other mothers in the room had to have overheard my news.  Overwhelmed with and absorbed in their own situations, they ignored it. I was alone with my grief.

              I sank into my chair stunned.  The doctor had delivered a death sentence to my daughter!  My first thought was to pick up Kari and run from this horrible place.  I had brought my baby here for a simple eye test!  They turned her condition into a terminal illness from which she could not escape.  "Oh God, what are you doing?  Today I finally saw my daughter content.  She is more beautiful then ever!  Now you are taking her from me.  Don't do this!"

              I reached for the phone to call Ron.  When he answered, the words stuck in my throat.  At the sound of his familiar, caring voice, I began to cry uncontrollably.  How could I tell him?  Between sobs, I choked out the doctor's report.  Ron said little, but assured me that he would leave work immediately and come to the hospital.

              When I hung up the phone, I found my parents standing in the doorway.  They had come for a surprise visit.  From the expressions on their face, I knew they had just   overheard my awful news.  What a relief it was to see them and to feel their comforting arms around me.  We walked out into the hallway and cried together.

              It was unusual for both of my parents to be off work in the middle of the afternoon.  God was not allowing me to be deserted in this place.  Others were being supplied to travel this foreign land with me.

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

Ron’s Reflections…

              From my childhood I remember one Friday night shopping in a clothing store somewhere in downtown Lancaster.  My dad was buying pants for both my brother and for me.  The clerk measured us and he found that Laverne and I were about the same size.  If I recall correctly, the salesman made such a big deal of the fact that my dad finally explained that Laverne was two years older than I but that he had Cystic Fibrosis and that was why I had caught up with him in size.  The man responded that he knew children who had that problem but that they outgrew it.  I was overjoyed at the prospect.  I desperately wanted my brother to be healthy.

              As we left the store I excitedly commented to my father about what we had heard.  Maybe Laverne would get better.  My dad sadly, but very firmly and directly, said that it wasn’t true, that the man didn’t know what he was talking about.  Children don’t outgrow Cystic Fibrosis.  They will always be sick with it.  My hopes were instantly dashed. To this day I’m not sure if at that moment I was more upset with the man for talking about what he did not know, upset with myself for being so naïve as to believe a stranger would know something we didn’t know, or with my dad for being so direct with the truth and taking away my hope.

              In any case, I understand now that my father was right in his response.  He said nothing to the salesman. He could see that the man’s mouth was running because he found himself in an uncomfortable situation.  And yet he couldn’t allow me to live on some kind of false hope.  It is the truth that we need.  Denial of the truth is never a long-term solution to our problems.

              When my brother was on his deathbed at the National Institute of Health in Bethesda, Maryland, our family was called to see him.  One of my friends tried to console me, saying he was sure Laverne would get better.  I probably nodded agreement to the statement, but inside I knew it wasn’t true.  My brother was dying.  He knew it.  His parents and we, his siblings, knew it.

              When my brother shared the last words he had for each of us, we listened.  We didn’t argue with him saying, “Don’t talk that way!  You’ll be out of here in no time.”  We didn’t try to give him false hope.  The blessing of that, even to this day, is knowing he was able to share with us from his heart.  And it is knowing we stood with him at the most difficult hours of his life.

              There at CHOP, when Joan decided to face the reality of the situation, of not detaching herself emotionally from what was happening, of taking the pain head on – that was a key decision for which I am very proud of her.  It would have been easier to stay in the role of the professional nurse, to be absorbed in procedures or to become a scientist in search of the genetic culprit.  Each of those would have been a form of denial – a distraction from facing the pain.  I’m glad she chose to be a wounded mom.  It made her real.  It allowed her to give the love to Kari that was needed. 

A successful family will face painful loss rather than deny it.

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Copyright (c) 2002 by Ron and Joan Denlinger