Laughter erupted from my crowded kitchen. I entered the room, curious to know what was so funny this time. My relatives gathered around the kitchen table snacking on treats, obviously enjoying their time spent in our home. Ron hollered across the room when he saw me going to the pantry to refill the dwindling food. "Hey Joan, only two more hours till midnight. Do you have enough food to see us into the New Year?"
My grandma rocked her great-granddaughter in the living room. Kari was performing her usual evening recital. Her little legs extended beyond Grandma's firm hold and her face was beet red. "Grandma, let me take her for you so you can eat." I knew the awkward grasp Grandma had on Kari would never soothe her, but she insisted on keeping her. I sat down on the couch, grateful for a little break from my hostessing. I closed my eyes briefly and listened to the chatter coming from the kitchen. Grandma continued her efforts to quiet my baby, but after a few more minutes she blunted, "Something is wrong with this child!" Seeing everyone coming into the living room to investigate, I jumped up, grabbed Kari from Grandma and escaped from the room.
In the security of my bedroom, I cradled my chubby three-month-old. "Why can't others love and accept Kari the way I do? Nothing is wrong with my baby. She just needs more time to outgrow her colic!"
With my daily routine becoming increasingly burdensome, after the New Year my mother came to our home a few afternoons a week to give me a break. She began this routine after consulting with her own doctor about her granddaughter's extreme irritability. His only advice to her was to provide me some respite.
During an icy January afternoon, Mother was still there when Ron arrived home from work. I was struggling to nurse Kari but stopped long enough to say hello. He kissed Kari and me and then picked up the evening paper. I focused my attention back on Kari. Suddenly, I noticed her eyes deviate upward in her head. "Mom," I said hesitantly, "do you think Kari can see?" At first she said nothing, thinking through her response. Then softly she answered, "Joan, I think something does not seem right about Kari. She has no desire to look at things. Maybe you should consider getting her examined by an eye doctor."
Her honest answer cut right through my fearful emotions. "How long have you thought this Mom?" I asked protectively. Ron heard us from the next room and immediately joined our conversation. Soon all of us began sharing observations that we had made over the past two months. Kari's eyes were reactive to light, but she never looked directly at any of us nor had she smiled. She never reached for toys. She never looked at her colorful animal mobile. She never held her head up to glance at someone walking by her.
How can I be so blind to these aberrant responses? I kept my thoughts to myself as Ron and Mom continued talking. How can I deny these signs any longer? I thought I was a competent nurse! What is happening to me?
After Mother left, Ron took me in his arms. We cried like frightened children. The suspicion that blindness could be afflicting our daughter was devastating. How could we raise a child that could not see? What would this mean for her life? What would happen to my dreams for her? I envisioned myself picking flowers with her in the spring. I saw her stepping on the school bus on her first day -- lunch bucket in hand. I had allowed myself to anticipate the day I would see my daughter bride, radiantly dressed, walking down an aisle into the arms of her husband-to-be.
My vivid dreams were crumbling before me, leaving my mind a blur. Why had I allowed myself to have such dreams? She was only three months old! Thoughts of white-tipped canes, beggars with tin cups, and Kari being sent away to a boarding school for years to learn Braille, flooded my mind.
"O God, this can't be true! I know Fanny Crosby and Helen Keller did great things despite their lack of sight, but this is my daughter! She doesn't deserve this! She is innocent. I'm sorry for becoming so frustrated with her screaming, but please don't punish me like this! The problem must be something other than blindness. Maybe she is very nearsighted like her father."
I quieted my inward rampage when I heard Ron's quivering voice praying, as he rocked Kari in his arms. "Lord, if it takes Kari to be blind so that others and myself may see you more clearly, then that will be okay with us."
We prepared for bed without any more conversation, both deep in our own thoughts as we lay beside each other. Hopefully time would allow us better understanding of the evening's events.
Ron didn't sleep well, in contrast to his usual ability. He tossed about, twisting the sheets around him. He wanted to accept God's plans, whatever they might be, but he found it difficult to face this ominous possibility of blindness. Suddenly, he was fully awake; sitting upright in the darkness. It had to be a nightmare, but it wasn't. This was not a dream that he could shake off. He lay back down, knowing the heaviness would remain in the morning.
Early the next day, I looked in the Yellow Pages for a name of a local ophthalmologist. I wanted to prove that our suspicions had no real foundation.
My mother accompanied me to the appointment. We waited in the office, entertaining ourselves by placing a Cabbage Patch Doll glasses on Kari. I laughed as I remembered the description that Ron and I had of a little chubby girl with glasses. She looked adorable in the glasses, but I didn't think Kari would need them this early in life.
Mom and I sat quietly as the doctor did his exam. Kari looked so tiny sitting on my lap as he intently peered into her eyes. The doctor dimmed the lights and shown a spot light on a noisy toy in the corner of the room; attempting to attract Kari's visual attention. Instead, she started screaming. He turned the lights on again. "Mrs. Denlinger, I don't see anything wrong with your daughter's eyes, but I do think she is too young for a thorough exam. You could bring her back in three months or, if you would like, I will make an appointment for you at Children's Hospital of Philadelphia (CHOP) to see a pediatric ophthalmologist. They have more techniques to examine younger children."
Glancing at my mother I saw her nod, indicating that I should make an appointment at CHOP. The date was set for three weeks later. I left the office with a mixture of relief and bewilderment. Neither Kari's pediatrician nor this eye doctor seemed too concerned about her. Why did I continue to feel as if something was wrong? Was I a paranoid parent? My mother also seemed concerned. She had raised four children -- surely she knew how babies react. Is that why she was pushing for further evaluation?
I saw no change in Kari during the time we waited for the CHOP appointment. I wanted her to focus on my face or toys but she showed no interest. She only cried or slept.
Two days before our appointment, we visited Ron's parents. I closed myself in a room, needing the privacy that feeding Kari required. She sputtered and coughed on the warm milk. As I watched her, I noticed her arms rhythmically jerking. Her legs became stiff as they had many times before. Her head flexed to the left and her eyes rolled up into her head. I immediately recognized it as a seizure. "Ron, come quickly!" I yelled. Kari continued her seizure as I looked for the phone to call the pediatrician. By the time I reached him, the seizure was over, but Kari continued to cry; showing her irritation. "Mrs. Denlinger, take Kari to the emergency room immediately!" Dr. Tift directed, as we ended our brief conversation.
As we hastily stuffed Kari in her snowsuit, Ron's mother slipped a piece of paper into my hand. She mumbled that it was something she had heard that day from Dr. Warren Wiersbe, a radio Bible teacher. She hoped it would encourage us. I thanked her, shoved the note in my pocket, and kissed her good-bye.
Silently, we drove to Lancaster General Hospital (LGH). Ron concentrated on the road before him. I sat in the back seat; eyes focused on our baby girl. She was now in a deep sleep. We arrived at the Emergency Room (ER). As I handed Kari over to the nurse who met me, I noticed that my arms were shaking.
The doctor came to us from around a desk and requested a brief history of the evening's events. He then ordered numerous tests. Having worked in this hospital, I was accustomed to the frantic pace of the ER and acquainted with most of the staff. As familiar as this facility should have been to me, tonight the hospital looked so different. The patient lying on that litter wasn't just any person, it was my daughter. Blood work was no longer routine when the long sharp needle jabbed my baby's soft pink skin. A CAT Scan was suddenly more than a simple non-invasive test that takes only a few minutes – it was an overbearing machine swallowing my child's body.
The doctor admitted Kari to the pediatric floor. Because she was so young, the nurse chose a room adjacent to her station. I settled Kari into the crib. Seeing the nurses through the window brought me comfort; confidence in my own nursing skills had disappeared. I was a frightened mother, concerned for her baby.
My sister, Judy, was working at the hospital that evening. Her shift was over at 11:00 PM. She arrived in our room a minute after the nurse had taken Kari to a treatment room across the hall to draw more blood. I rocked myself in the dark room. I appreciated my sister's presence, and that she said nothing. I needed the silence so I could stay tuned to the activity across the hall.
I could hear Kari scream. After two hours the staff was still working on her. Her crying was more than I could bear. "They don't know how to calm her!" I looked at my sister with panic in my eyes. "She needs me! What is wrong? What are they doing?" I demanded.
Judy encouraged me to find out. The nurse assured me that they had finally finished the blood work. "Mrs. Denlinger, you may calm your daughter." I picked up Kari and laid her across my arm upside down. She immediately quieted, still gasping for breaths after her traumatic evening. I rocked her until she fell asleep. My sister quietly left the room.
It was 2:00 AM when I again laid Kari in her crib. Hours had passed since I had nursed her. I felt miserable. Though I was exhausted, I couldn't sleep.
As I pulled my sweater around me, I saw a piece of paper fall to the floor. It was the note my mother-in-law had given me. "Yard by yard, life is hard; Inch by inch, life's a cinch." Salty tears filled my eyes and dripped down my face. "Oh Lord," I whispered, "Remind me not to give into my fears of the days ahead. I want to trust You for this day. Tonight, you gave me strength and that's enough for now!"
Morning came quickly. The staff neurologist came in to report that he was not qualified to handle Kari's condition. Although all her tests were normal, he felt Kari should be evaluated more thoroughly. He highly recommended that I keep my appointment the following day at CHOP. He discharged her, but we left the hospital still wondering what mystery was hiding within our daughter. Was there a problem or not?
Ron took time off work to take Kari and me to CHOP. I had never been in a children's hospital. The thought of taking my child there frightened me, but we were hoping that finally a medical person would tell us that Kari was fine.
Children's Hospital was impressive. The atrium in the middle of the building was several stories high. A glass elevator lifted us to the third floor, where we found the office of Dr. Schaeffer, an ophthalmologist.
He carefully examined Kari's eyes and then began asking questions. Along with other answers, I told him we had just come from a hospitalization because of seizure activity. At that he immediately stood up and left the room. When he came back he said, "I can no longer evaluate Kari. She needs to first be seen by a pediatric neurologist. I made an appointment with Dr. Packer. He will see you in half-an-hour on the second floor."
Quietly we packed Kari in her stroller and left his office. "Why are we again being passed on to another physician? Her CAT Scan was fine at our local hospital. Why does she need to see a neurologist?"
Less than thirty minutes later, Dr. Packer's secretary informed us that an aide was waiting to escort us to the electroencephalogram (EEG) lab. Although this did not seem strange to us at the time, we later discovered it is almost impossible to schedule appointments and tests such as an EEG on short notice within the same day, let alone within one-half hour of each other.
Kari looked strange attached to all the electrodes from the EEG, but after her head was wrapped in a towel, she looked as if she was just finishing her bath. She stayed awake during the test. The technician was quiet through the entire procedure. After it was completed she said, "Please deliver this report to your doctor now!" I knew that didn't sound encouraging but I rationalized that this hospital must handle results differently than the one to which I was accustomed. Kari had not had any more visible seizure activity since the night at her grandparent's home and she seemed less irritable over the past two days. As we returned to Dr. Packer's office, I tried to convince myself that everything was fine. "Ron, did you see Kari smile at me while she was having her EEG done?" He said nothing and continued down the hall.
Dr. Packer was a short, even-tempered, middle-aged man with dark hair and glasses. He introduced himself to us and asked us to sit down. Without examining Kari, he immediately started speaking.
"Mr. and Mrs. Denlinger, I don't want to alarm you, but I would like to admit Kari to the hospital today for further evaluation. Her EEG shows a grave seizure disorder -- Infantile Spasms. Immediate treatment is needed and I need your consent to proceed. After further evaluation, hopefully over the next day or two, I will be able to give you more information."
My mind was numb as we walked out of his office towards the admissions office. After hearing the word "grave," I comprehended nothing else.
* * * * * * * * * * * * * * *
I know it seems rather unbelievable that on the evening of realizing that something is seriously wrong with my daughter, I would pray a prayer of such acceptance. I find it a little hard to believe myself – my making a pronouncement to God that if this were His plan, it would be okay with us. Did I really understand all of what I was saying? No, I'm sure I didn't. Emotionally I was in shock and not yet fully in touch with the impact of the situation. And declaring I would accept what was unfolding didn't mean it would come easily, as evidenced by the sleeplessness and the living nightmares that followed. In part I was in denial, thinking this was not for real. And later a variety of emotions would overwhelm me -- hurt, disappointment, sadness and anger included.
And yet, what I said, to the extent that I understood what was happening, I truly meant. There was a large measure of acceptance that I experienced right from the beginning. I realize that only God can be credited for that fact. And I'm quick to understand that an immediate acceptance isn't the norm and I am not at all critical of those for whom it takes much time to come to such a place.
As I look back now I can see that God had graciously been preparing me. I had been taught the Biblical truths that He is in control, that He is all-powerful, and that He never stops loving his children. Through the testimonies of other believers I had been impressed with the thought that God has plans for our lives and His ways of working them out which are mysterious and beyond our understanding.
But perhaps just as important as those truths is the very simple fact that I didn't know where else to turn for help. I think of Jesus and his disciples and how on one occasion when things got a little uncomfortable and the fan club started to greatly diminish in size. Jesus turned to the faithful twelve and asked them, "You do not want to leave too, do you?" Simon Peter answered him, "Lord, to whom shall we go? You have the words of eternal life." (John 6:67,68 NIV)
All that to say: I wasn’t so noble. I wasn't thoroughly convinced that God would make everything turn out okay. I wasn't filled with glorious unquestioning faith. I just didn't feel like I had any other real option but to hang on to the Lord. I've since realized, at least for such a moment, that is enough. Though it may be hard to do, the only thing that works is to allow God to be the one to meet our needs.
A successful family holds on to God in times of trial.
Copyright (c) 2002 by Ron and Joan Denlinger