by Pamela Merritt Nestor
I held little Kathleen close as we stood before the window, watching James Edward follow his two older brothers and his sister across the yard and cautiously climb the steps of the school bus. I wanted to laugh and cry at the same time. The fruit of six years of prayer and family effort were tied up in that precious little boy, now sitting straight and tall, right behind the driver. James smiled broadly and waved triumphantly as the door closed and the bus pulled away.
I kissed Kathleen and headed for the kitchen. Oh, if James’s intensive-care doctors and nurses could see him now, I thought. Wouldn’t they be encouraged?
As Kathleen ate her breakfast, my mind wandered back to February 19, 1981. I was in labor, and I was reading the Psalms through the night, even jotting down Psalm 22:8-9 in my labor log:
Yet thou art He who took me from the womb,
Thou didst keep me safe upon my mother’s breast
Upon Thee was I cast from my birth,
And since my mother bore me, Thou hast been my God.
My three previous labors had been routine. I had no concern about this one. I knew each child was precious to God, and that He was in charge, so the passage seemed fitting.
Three hours later the baby came. Bob was taking pictures, when suddenly the camera stopped clicking and he put it down. His face was ashen. The baby was here, but silent, being worked on by doctor and nurses in the corner of the room. The door of the delivery room swung open and a specialist arrived. l have since learned that newborn babies are given a wellness score of 1 to 10, 0 being that of a dead baby and 10 being perfect health. Our new nine-pound son scored zero. The doctor resuscitated him mouth to mouth. It took twelve minutes to get a first response and twenty minutes before he breathed on his own. We prayed!
My memories are still vivid. We had to name the baby immediately so he could be transferred to another hospital. Surprisingly, the name “James” had occurred to each of us during the delivery, yet we had never before thought of it for this or for any of our previous babies. Later Bob brought me guarded reports of “maximum” medication to control seizures of apnea spells (interruption of breathing), of coma, brain edema. I had a lot to learn, but I had Psalm 22 to meditate on. I knew that our friends in our Alleluia Community had organized a continuous prayer vigil for James and I knew I had no power of my own.
It felt odd coming home from the hospital without a baby. I stayed busy arranging “fresh milk runs” to travel 25 miles to his hospital three times a day so it would be there for him if he survived and came out of the coma. Vital survival reflexes were not appearing, so we brought the children to see him, knowing it might be their first and only chance to meet their baby brother.
The next day, Bob and I went to the hospital to prepare for the emergency baptism. We walked over to the corner isolette where they were keeping James. The isolette was empty. Stripped. No monitors. No baby. “So this is how it feels to have a baby die,” I thought numbly. “Life is so fragile over so quickly.” Cautiously, we asked the nurse about James. “Oh, he’s there,” she motioned. We didn’t see him. We saw a nurse rocking a baby, but there were no oxygen tubes attached to it, no IVs, no monitors. Had she misunderstood our question? No, the prayers were being answered. The day of his baptism the sucking reflex began in James, as well as reflex response in his upper torso. The sterile water dripping from the syringe during the baptism was like the water flowing from Jesus’s side. It brought healing and life.
James came home when he was eight days old. As a chemist involved in semiconductor research, I was fairly confident about administering carefully measured doses of phenobarbital and dilantin. Just as the doctor had cautioned us, James could not cry to let his needs be known. All day long he lay there by the kitchen, quite motionless and uninvolved. If necessary, I’d wake him up to nurse him all very simple.
One afternoon a friend came by with supper. She was a nurse, and was anxious to meet James. She took one lingering look at him, mumbled a quick goodbye, and fled to the front porch. I found her there in the corner, sobbing. Suddenly l realized how serious the implications were. That night my sister called from New Jersey and told us about some volunteer work she was doing to help a brain injured child recover function. Yet I barely noticed her mention of The NACD Foundation.
Throughout the next 18 months we regularly brought James to medical follow-ups: physical exams, blood level tests, vision tests, and physical therapy. The doctor referred us to a pediatric neurologist for special neurological workups plus EEG and CAT scans. The prognosis: guarded. The diagnosis: developmental delay.
Aha, I reasoned, if the development is delayed, then there must be some way to help it along; to speed it up. Right? “Wrong,” said the neurologist. “There’s nothing you can do to help James. Look, you’ve got three healthy children. Be grateful. This one isn’t. Don’t waste your time and money on him.” It was only the thought of a flashing headline, “Mother assaults doctor in office”, that kept me in control. This was no Hollywood set. This was humanistic philosophy at its worst.
That very day I called my sister in New Jersey and asked her to make an appointment for us with The National Association for Child Development.
“Mommy! May I please more milk?” Kathleen’s voice intruded on my thoughts so insistently. She must have asked me a couple of times already. I poured her milk and stared thoughtfully at her as she drank it, climbed off the tall kitchen stool, and pranced out to the toy box. When James Edward was two, I recalled, he couldn’t talk. He couldn’t stand up. His appetite was poor. He didn’t eat with a fork or a spoon. His head was always leaning forward on his chest. His eyes were dull, his face usually expressionless. Even more alarming, he never seemed to feel pain. But at least by then his future no longer seemed hopeless.
At The NACD Foundation, James was evaluated on a developmental profile in the areas of mobility, language, manual competence, and tactile competence. We were asked how much time we were willing to devote to working with James at home.
Many questions that had been bothering us were now clarified. For example, James’s doctors had told us that he lacked the muscle tone needed to stand. The NACD evaluators explained that, although the muscles were there, they were not receiving the appropriate signals from the brain. As a matter of fact, James could not feel his arms, legs hands or feet in such a way that he could realize they were a part of him. The same sort of problem existed in his mouth: he could not feel his tongue, cheeks, teeth, or lips in a way needed to form true speech.
We were given an individualized “exercise program”, consisting of two dozen short activities to be performed twice a day. They were simple, but specific. We stimulated his arms and legs with deep pressure, slapping, tickling, and stimulating with cold water and hot water. As directed, we began with his fingers and worked up toward his shoulders, then with his toes up toward his hips. We vibrated the inside of his mouth with an electric toothbrush, had him lick honey off the corners of his mouth, gave him sweet, sour and salty flavors to taste and patiently taught him to blow.
We knew that James could easily locate a toy placed to the side of him, yet he never saw one in front of him. And we were dismayed that, when spoken to, he would stare off into space somewhere. Now we understood why: his central vision was barely functioning. And so one of the exercises involved eye blinders to block all peripheral vision and require central vision or none at all. Along with a flashlight exercise called “pleoptics”, this helped his vision improve tremendously. Other activities included looking at picture cards and listening to homemade information tapes. James breathed into a special face mask 20 times a day in order to increase his lung capacity and thereby increase the supply of oxygen to his muscles and to his brain. Going through the exercise program took from three to four hours a day.
Was it worth it? The results were evident within the first week and continue to this day. James’s facial responses became more normal. His mouth and tongue control improved and speech followed. Not only did his muscle tone improve, but his whole physique changed. The once shrunken chest became robust. He ate much better. His drooling stopped when wheat was eliminated from his diet. His sleeping habits became more normal, and the terrible habit of grinding his teeth ended. He was more clearly aware of his environment. Just seeing the dullness in his eyes become transformed into alertness told us it had been well worth the effort.
Every three months James has been re-evaluated, and his exercise program modified according to his progress in each specific area. New exercises improved his balance, leg muscles, flat feet, vision and eye control, motor ability, speech, comprehension, visual memory, and auditory memory. We were thrilled when, at age two-and-a-half, he took his first steps. Shortly after that, James was the ring bearer in a large wedding. When the guests realized who this wobbly little boy was, he brought more applause, cheers, and tears than the bride!
Never to be outdone by his siblings, James entered a one-mile citywide race when he was five years old and finished in 14 minutes and 12 seconds. He never noticed those who passed him. He was intent on finishing, and when he did he was cheered and congratulated. Again, there were tears in the eyes of those who knew his story. He jogged the same race six months later and shaved the time by a full minute and a half. I know he will keep at it until he reaches his goal: to win the pewter goblet.
Last year James attended kindergarten successfully not “special” kindergarten, but regular school! He graduated with his class and proceeded on to first grade. He still has some difficulty with the fine motor skills used in printing; he is slow and deliberate, and at times somewhat dyslexic. But we understand what is going on with these functions. We know which exercises to do with him at home to improve those fine motor muscles. We also know that he needs to establish a clear “left-eye dominance” to match his left-handedness, and the dyslexia will disappear.
Two weeks after school started, our older children came home and told us that James was one of seven first graders congratulated at a school assembly for scoring 100 on a math test. (There are 27 students in the class.)
Without the assistance and encouragement of the National Association for Child Development, James’s life and ours would have been very different. We’d like to let others know about this wonderful organization l know there must be other parents needing hope, help, and encouragement. And if any skeptics want proof, send them to James!
Pamela Merritt Nestor