Creative Writing from
Fairleigh Dickinson University

The Battle for Stephen

Chapter III

Eleanor Miller

We were on a roller-coaster emotional ride during those first few months. We did get good news that pointed optimistically that Stephen had sight--all the components in back of the eyes looked healthy--and fairly good vision should develop. The words "should," "might," "possibly," "maybe," seemed to shatter our peace of mind and haunt us, but Jack and I bonded with a cohesion and love few couples experienced, and we both had a powerful determination that we would do all in our power to right what was wrong with out son.
     We constantly watched, tested, and worked at developing Stephen's mind as well as his body. Jack had read an article that Einstein had only used about one fifth of his brain cells, so Jack rationalized if one was given a surplus in functioning brain cells, there must be ways to develop those lying dormant. He was convinced verbal communication, as well as tactile methods--holding him, cuddling him, gently stroking his head and kissing him would strengthen Stephen, and develop him emotionally and intellectually. We didn't find that part difficult at all. But, we did get down mood swings at times, which dampened our spirits, but those who loved this child and us lifted us back up.
     When Stephen was five months old, we had him sitting in one of those little seats on my parents dining room table with his head propped by small wash cloths on either side. I had just fed him, and Jack started cooing and talking to him, but wasn't getting a response. A mood of discouragement settled on him and he turned to my father and said, "Dad, he must be severely brain-damaged too."
     "Who says so?" Then my father proceeded to make faces and noises at Stephen, all kinds of noises--like a duck quacks, like a pigeon coos, like a chicken clucks. Then he took his fingers on his left hand and stroked his lips, making a bub, bub noise. He moved his head to the right, then as he turned it to his left Stephen turned his head, watching the antics of his grandfather. He kept it up, and then Stephen gurgled and giggled--he loved the circus act my father had developed. He giggled and giggled. My mother came out of the kitchen hearing this too. Jack's face suddenly brightened into a smile of relief.
     "Don't tell me this kid won't be all right," and my father's confidence swept us all upward.
     Jack continued this communication with the baby, and had Cindy join in. They would endlessly talk with the baby and make him giggle. Whenever he came home from work, he read a story to Cindy or talked to her. She was difficult at times--strong-willed and petulant, like most two-year olds, but she liked being included and lying on the floor with her Daddy and talking to Stephen. We knew by his infectious giggle he was responding, although there were no visible expressions in his face--no laugh lines, nor frowns when he cried.
     We had a wonderful relationship with Dr. Burke, and he always encouraged us to talk about Stephen's behavior, his motor development, which was slow, and our worries. Unfortunately, some in the medical profession were not as caring. Stephen developed a bad cold, so I took him to a local pediatrician, who shocked me when he said he wouldn't treat him. Wouldn't treat him? Why? I asked him. He told me Stephen could eventually be fitted with a prosthesis for the partial foot, but "no" he wouldn't treat his ailment.
     Ailment? I asked. "All I wanted you to do was check his throat,vas there had been an epidemic of strep in the neighborhood." He refused again. I came home distraught, and called Dr. Burke who said bring him right to his office. Jack and I brought Stephen in for his monthly checkups, but this time I put Cindy in the car and drove the hour's drive to Hillsdale myself. I told him what happened. Said I should report him. He took a swab of his throat and said it wasn't strep and prescribed some cough medicine. Then, I repeated my fears of his vision. Dr. Burke took a pen clipped to his upper pocket in his white coat, and just for a second or two waved it in front of Stephen, who quickly grabbed it and put it to his mouth. Dr. Burke looked at me and said, "I don't think there's anything else wrong with this baby. To make sure of his vision, get another opinion in a few months. Eye muscles can be operated on when he's older, not now, " he cautioned me. "And, I recommend you go into New York City."
     We couldn't convince my mother that there was a possibility his vision might not develop normally. I was the cautious one, the one who knew I had to accept whatever happened. "Nonsense," she insisted. "He'll be fine." Some months later, Jack and I decided to get another opthalmologist's opinion, just to confirm that his vision was developing.
     At the last minute, Jack had to go into the office that morning so I went alone. My confidence in driving had increased since Stephen's birth. I always hated heavy traffic on the highways, but I knew I had to go places and do things with the baby without Jack. It wasn't fair to rely on him to take days off to drive me down to Teaneck to the orthopedic doctor every two weeks, I had to do these trips myself, so with a precocious two-year old screaming and kicking the back seat, and a baby in the front squeezing the toy horn on his car seat, I shut the noise off and sailed down Route 80 to my mother's house.
     She was a blessing, and I actually got a rest from Cindy's demands when I had doctor visits. Mom was wonderful with her, always prepared special noodles she liked or home-made soup, and disciplined her firmly when she needed it.
     Stephen was sleeping peacefully in my arms in the waiting room. I don't think that opthalmologist took more than five minutes with us. He was rough with the baby, and Stephen started to cry as he looked into one eye. He stopped and said, "Yes, optic nerve good in that eye, but bring him back when he's less upset. Obvious cerebral damage." I glared at him and asked how he could determine that?
     "Just the way he's staring," was his answer.
     "Aren't there ways with toys you could have tested his vision?" I asked curtly. He shrugged his shoulders as if to slough off my question. "You don't know what you're talking about. You don't even know what his condition is," I said. I picked up the baby and left. I wasn't upset this time, I was boiling mad. Mom saw my face as I walked in the front door. She agreed with me, and suggested I call Dr. Burke for suggestions.
     "Okay Ruthie," Dr. Burke said, "It's time to go into New York
     City. But, it will take me a day or so to make arrangements. In the meantime, take a toy, any toy, stuffed animal, show it to Stephen, then let him see you put it behind him. See whether his eyes follow that toy." I told Dr. Burke that Stephen's motor development still slow, still not sitting up at ten months, and orthopedic doctor didn't think casts slowed down his growth. "I'll get back to you, Ruthie, but if Stephen goes after that toy, don't worry about his sight."
     My mother was gleeful that afternoon. Her laughing with the baby and Cindy playing "find the toy game reinforced her "I told you so" philosophy. We sat him down on the floor, and told Cindy to just watch. "Don't tell him where the teddy bear is Cindy. Let's see if he goes after it the first time. Then you play with us. Okay?" She put her little finger to her lips and said, "Sh. Now Grandma, don't you tell where the bear will go."
     I propped him up on the living room rug with pillows behind him and on both sides. I showed him the bear and gently tossed it to him. He giggled and punched it with his chubby hands. Then I took the bear again and moved it from side to side--his head and eyes followed the bear. When I put it behind him, he actually threw himself back to get it, grabbed it and stuffed it in his mouth. "Satisfied," my mother Alice said. I nodded to her. Of course, we didn't know how good his sight would be, but we now had hopes.
     Within two days, Dr. Burke called us back. He had appointments set up for us at Columbia Presbyterian Eye Institute and at Columbia Presbyterian Neurological Center. Both, with the top men in both these specialties, eye muscles, and neurology. I was relieved when Jack said he wouldn't miss this by any means. Now, maybe we'll get some answers. Besides, driving on Route 80 was one thing, but over the George Washington Bridge into New York City traffic? I didn't do it for these appointments, but eventually, I learned to patiently wait in the endless lines snaking onto the bridge, and lean on the horn just as easily as the taxi drivers did in the city.
     We were very pleased with our visit at the Eye Institute. The head of the Institute handled our son gently, and knew exactly what Stephen's eye muscle problems were. "Did anyone tell you about bands?" he asked us. "Bands?" We shook our heads no. He explained there were eye bands in this type of syndrome, and many times they are present, but locked in. He assured us his vision was fine, as he gently showed him toys and he went for them. Can't really tell until he's old enough to read the eye chart, but I can tell you this--usually vision is good in these cases. Instantaneously, he uses one eye, then the other. Jack asked whether he would have double vision. "No, not at all," he answered. "Just have to operate on those muscles. One way or another we'll straighten them out considerably, but not yet, not for a while."
     We left his office so relieved, so cheerful. Even Cindy was having a good time, seeing all the big, tall buildings. Now, we were headed downtown. Jack had a meeting at the Court House on Foley Square. He didn't think it would be long, and I could take the children to the park, which was right across the street. Then, we were going to a small restaurant across the river in West New York. Well, I hoped his meeting would go well. This was a good day. Jack said he wouldn't have any trouble parking--plenty of lots under the Federal Building.
     That day, Jack coordinated his appointment in Foley Squire with our eye doctor's visit, and thought he correctly estimated the time for the doctor's appointment and the trip downtown, but he didn't factor in the constant deadlock of traffic that's synonymous with that area--trucks backed up bumper to bumper, horns blasted continuously, windows rolled down with angry people who hurled obscenities at anyone in front of them. And, the stink from all these trucks not going any place choked the air with a cloudy dust. I noticed Jack kept looking at his watch, but I wasn't prepared for him jumping out of the car. "Ruthie, take the wheel. I'll be late for that meeting. Just go to the end of this block, then turn left go three blocks and you'll be in Foley Square." Bang, went the door and he was gone, and I was left half paralyzed with fear in this monstrous city with everyone screaming and honking horns. I got behind the wheel and thought, "Nothing to it. Down one block, left three blocks." So, I waited and waited and advanced at a snail's crawling pace. After fifteen minutes I still wasn't at the corner. "Patience," I told myself.
     Then I hear Cindy in the back, "Down this street, then turn and go two blocks."
     "Three," I corrected her, but she repeated, "two." Don't get me confused, kid. I finally made the turn, but with everyone yelling and honking the horn at me, as I got out of the middle lane. Wanted to be able to make that turn onto Foley Square. Didn't tell me what it looked like. Well, there's a park there. So, kept going. Two blocks, then three blocks, no square, no park, no Foley Square on the street signs. Ask someone. Pulled over curb. Car on part of sidewalk. Horns blasted me. "Ask someone," I told myself. "Excuse me, sir," but guy glared at me and walked on. Asked another. "Can you tell me where Foley Square is?" one threw up his hands and spoke in a foreign language, another just shrugged his shoulders at me, then I asked a man walking past me and he yells, "How the hell should I know, lady?" Swell. Nice place this city. Where's a cop. None. Better turn around. Can't. Keep going. Oh, my God, I'm at Fourteenth Street. There's Orbach's. There's Klein's. I'm lost. I'm lost. I gotta turn around. Gotta get a map.
     Turn around. Find the original street. Think it was Grant Street. Turned around. Started up a ramp and heard Cindy yell. "Look, bridge." I turned my head in time to see a sign and an arrow marked, "Brooklyn Bridge." Can't find Foley Square. I'm going home. I'm going to look for the West Side Highway. I'm going home. Which direction is west? No clue. I'm lost. Saw a cop. Approached him. Just as my car is nearing him, he's gone! Hopped on motorcycle, Sped away! Now I'm distraught. I'm angry. Rude people. Once more, I rolled down the window and asked a man, "Where's Foley Square."
     "Lady" he smiled and pointed to the sign, "You're in it." Oh, thank God. Now to park this car. I didn't use underground parking, found a spot right near the park. Besides, I didn't know which was the Federal Building. Got the baby in the stroller, and Cindy held my hand as we approached the swings. Couldn't have been there more than ten minutes when Jack arrived. Was I glad to see him. We must have been driving around for over an hour, because his meeting wasn't that long, and held been getting concerned when he didn't see us in the park. I was very relieved when Jack took the wheel, and with no effort headed uptown and into the Lincoln Tunnel.
     A month later we headed for Dr. Gold's office, Chief neurologist at the Columbia Presbyterian Neurological Center in New York. Jack and I dropped Cindy off at my mother's. We didn't know what we were going to be told, and when she offered to take her we were delighted. We didn't want Cindy to see us upset if the doctor gave us discouraging news. As she slammed the car door on my side, she said to us both, "Remember no matter what that doctor tells you about the baby, he's ours, and we love him." Of course we did I thought. What a thing to say.
     Stephen finally had started sitting up by himself, at one year old, far behind the average baby, but Dr. Gold didn't seem concerned about that. "Sometimes, he explained, the motor development is slow, but catches up." He said he knew this was rare, saw very, very few cases like this, but he excused himself and said he wanted to check up on something in the library. So, we were left alone again, wondering did he really know something that could help us? Help Stephen?
     So, I changed the baby's diaper and held him, awaiting the doctor's return. He seemed so serious, engrossed in thought when he returned to us. "Yes, yes, it's very rare. Called Moebius Syndrome. Affects the extremities mostly, but usually not their intellect." I could hear Jack take a deep breadth, as he looked at me. "Good news, good news Ruthie," I knew that's what he was thinking.
     Then the doctor continued to explain a proposition he had for the baby. He asked us to leave Stephen with him, in the hospital for a few weeks, so they could take different tests, perhaps come up with some idea of what caused this.
     Jack's body suddenly stiffened. I saw his jaw firmly set, his eyes evenly, sharply focused on the doctor. "What kind of tests?" he asked abruptly.
     Dr. Gold seemed ambiguous. "Different tests. See how the brain is developed. Check his muscles, reactions. Things like that."
     With a sharp, almost acid tone, Jack asked, "And, are we supposed to sign away some papers if he reacts badly?"
     "Yes, something like that," Gold answered indifferently.
     "Absolutely NOT!" Jack retorted loudly.
     "Jack" I said softly, "maybe they'll find what caused this?"
     "They'll experiment with him," Jack retorted at me. "NO!" he said to Dr. Gold. "I will NOT sign. You'd have to have both our signatures."
     "If that's the way you feel. But, if you change your mind."
     "Not possible."
     I was so taken back by this exchange between this top professional, and my loving, caring easy-going husband, I felt stifled. When there was nothing further the doctor could tell us, we picked up our things and the baby and left.
     I argued with him all the way back to my parents' house that maybe he was wrong, why was he so insistent not to leave the baby. "Ruthie, I'll show you something when we get home. Then you'll understand. They would experiment with him." When we got home, he pulled out an article he had gotten from one of the men in the office, in which parents insisted their baby, left in the care of physicians trying to determine the extent of its birth defects, had actually received additional brain damage. We never discussed that alternative again. No one was going to experiment with our baby.
     Summer arrived, and already it was close to Stephen's first birthday. I insisted I had to have a break from his family, I wouldn't go to their country house every weekend, and insisted we needed a vacation by ourselves. My parents offered to take Stephen for a week, my mother said the three of us should be away, not to forget the baby, but it would give us a break from caring and worrying about him. Aunt Tess came out for a few days, and although she wasn't my father's favorite relative, he welcomed her lavishing her love and attention on the baby. She was absolutely thrilled when she was shown what we had taught him. "Stephen, how big is the baby?" we would ask, and his little arms shot up over his head as soon as we said, "So ..... big!" By the time we got home he already knew how to point one finger up in the air for one, and two when my mother and Aunt Tess or my father said "two."
     We rented a small cottage in the Adirondacks just a hundred yards from the loveliest beaches and the longest lake in the east. Cindy loved the sandy beaches and all the children who helped her build sand castles, and Jack and I built our own castles, castles of hope reaching to the sky.
     During that first year, we continued to offer love to those who obviously couldn't show love to this baby, and even emphasized their partiality to Cindy. My husband was constantly called upon to "Come down and take the dog to the kennel," or "We need help with this," or "Drive us to the cemetery to put wreaths on graves,". Errands he had gladly done for his parents before marriage, inasmuch as his father didn't drive. But now, with added burdens on us, pressure from a very demanding, often dangerous profession, he was still expected to be their chauffeur. So, we were pleasantly surprised when his father announced he was taking driving lessons, was going to buy a car and get a license. I couldn't believe anyone would learn to drive on city streets at sixty-two, but he did.
     Presents from them did not come into the house for Stephen, but we thought eventually they would bend and learn to love him. I really didn't want to see them, but if I alienated my husband completely from his family, his mother would succeed in putting a wedge between the two of us. Around Easter, they called and asked him to come pick up the Easter basket. Of course, this was the time she relished and she told me, "I have him home, just like it used to be, just us." And, "if anything happens between you and him, he can always come home." What's the sense of arguing with someone like that, but one day I got tired of that comment and I said, "Don't count on it."
     When he got home, I knew Jack was angry. He was raging, so I left him alone and went upstairs for a while. Then he told me he flung the "one" Easter basket across the room. "Something special for Cindy," my mother told me. I told them both, "If you can't accept my son, forget you ever had a son." I felt so sorry for Jack. "Ruthie," he said to me, "If their actions hurt you, imagine the hurt I'm feeling. They're my parents." Then he added something I thought odd. "You've got to stand up to her. You've got to stand up to my mother, or she'll wipe you up off the floor." I had always felt it was his duty to tell her off when she got out of line. Besides, I just didn't like fights. I didn't want fights, fights like my parents always had. I thought it was easier to be nice. I learned the hard way.
     But, their attitude continued. we did go up to the country one Sunday during that summer. Cindy got out of the car, and they gushed and hugged and fussed all over her. Then, a mother of Jack's cousin, walked over to greet us. I lifted Stephen out of the car seat, it was a warm summer day, and I took a light blanket off him. My mother-in-law grabbed the blanket out of my hands and said, "Cover up his legs." I reacted with instant fury and ripped it right off, "Look Aunt Elsie, this is our baby. His legs are in casts, because they are deformed." I wanted to go right home, but we stayed for lunch.      After lunch, I picked up the baby, took Cindy's hand and started walking across the street to see relatives sitting in the back yard. "Where youse going?" She called after me. I didn't answer her. Just kept walking to the group. When I approached them, I lifted Stephen up in the air, "This is our baby. He has casts on his legs, but we're hoping he'll be just fine. We need your prayers." Those who hadn't seen him came over and fussed. This battle I knew I won. The whole group sitting there, except one sister-in-law who was always breaking up her daughter's marriages, were all good, loving people who supported us and constantly prayed for our baby. One of Bill's favorite cousins came over and sat next to me and said, "Good for you. It took courage, Ruthie, but good for you for bringing that baby over."
     When Stephen's first birthday rolled around, just my parents and Cindy, Jack and I celebrated it. I hadn't received even a card from them for Stephen. Cindy's birthday was the next month, and they came in with a huge doll bigger than she, but nothing for Stephen. I wasn't going to ask them for Christmas unless they treated this child equally, tell your mother that, Jack, I said.
     When my sister Bonny, who now lived in Pennsylvania, heard this, with her truck-driver's mouth yelled, "That God damn sick son-of-a-bitch. Hereafter, every September you are coming up here and we'll have a big celebration." And, did she do those birthdays up big. All her kids and their friends, she insisted they come home from college for the weekend, then she invited in all her neighbors and it was wonderful. She treated Cindy very fairly, but that one day she made special for Stephen. "Sick Bastards. Ruthie tell them off. Throw them the hell out of your house." It did have to come to that, but I never tried to cut my husband completely off from his parents. I just ignored them a lot. And avoided them as much as possible.