by Marc Maurer
As readers of the Kernel Books know, Marc Maurer is President of the National Federation of the Blind. He is also the father of two active, lovable children. His recollections of the birth of his son emphasize again the innate normality of the blindthe concern with the everyday activities of employment, marriage, home life, and childrenthe lack of the feeling that blindness is the center of every activity and the cause of doom.
Since I am a lawyer, I do a lot of traveling. I was away in Idaho working on a case when our first child, David, was born. My wife Patricia and I live in Maryland, more than 2,000 miles from Idaho. I had a hearing on Monday morning, and I needed to interview witnesses and prepare argument for the case. My wife had been pregnant for several months, but the baby wasn't supposed to arrive for quite a while. When I left on Friday morning, everything was fine. When I spoke with Patricia on Friday night, she was feeling better than she had for weeks. I went to bed more than 2,000 miles from home ready to buckle down to do the work for the court appearance scheduled for Monday.
Early Saturday morning I commenced interviews with witnesses. The trial would focus on the constitutional rights of private citizens to free speech and freedom of assembly. I was preparing testimony for the court and marshalling arguments for the summation. The court appearance would be briefnot more than half a day. A number of the facts to be presented were quite unusual, and the time before the judge would be severely limited. Preparation and planning were absolutely vital.
A number of the witnesses and I were in the living room of the home of one of the parties when I was summoned to the phone. The voice of one of my best friends (Dr. Kenneth Jernigan, who was then serving as president of the National Federation of the Blind) came on the line. He said, "Don't worry. You are a papa. Everybody's fine!"
Immediately, the focus of my attention shifted. The court hearing had to be completed, and the planning and preparation were no less important, but I felt a tremendous urge to head back to Baltimore. All through Saturday and Sunday as I worked on the case, I thought about my new baby boy and his mom. The hearing occurred on schedule Monday morning, and as soon as it was over, I boarded a plane headed east.
It is a long way from Boise to Baltimore. The plane touched down about 11:30 that night, and a friend picked me up and drove me to the hospital. My wife was tired but glad to see me. She told me that there were those at the hospital who had been wondering whether I really existed. Baby Maurer had not yet been named. We decided to call him David Patrick.
Because our new boy was premature (he weighed less than four pounds), he had been assigned to live in a little plastic box called an isolette, which had wires and dials. The isolette had its own heating and air conditioning system, which was set to keep the boy warmer than ordinary room temperature. Some time around 12:30 a.m. I went in to visit him. I was instructed by the hospital staff to wear a gown and to make sure my hands were clean. David Patrick was little and scrawny. He wore a teeny little cap to keep him warm, along with his blankets and diaper. I sat there with him in a rocking chair for some time, but he didn't have very much to say.
I asked him where he wanted to go to college, but I guess he hadn't made up his mind. Because he was so small (his leg bones from his knees to his ankles felt sort of like match sticks to me). The hospital had tiny little preemie diapers for him. They looked like toys you might get for the baby doll that you give as a Christmas present. David Patrick got himself all wet, and the nurse asked me if I wanted to change him. The door to the isolette opened out to make a little shelf. The idea was that David Patrick's blankets should be spread on the shelf and he should be placed upon them to be changed. I put him on the shelf and took off his diaper. Then I crouched down to get at the cabinet underneath to get him a new one. The nurse said to me, "Watch it! He might roll off!" The nurse's voice was not loud, but it carried considerable force. Accidents can happen, and a fall of three feet for a baby of that size could cause severe damage. Those few words from the nurse were stern and to the point. My job was to keep track of that boy. So I reached up over the shelf and took hold of the little guy.
With the diaper changed, the blankets back in place, and the hat back on (it had fallen off during the changing process), we sat peacefully a while longer. I told David Patrick about the cases I was involved in. We discussed politics, crops, the economic situation in the country, and the weather. At about 2 o'clock I told him I'd have to go because there was another busy day ahead. But I told him I'd be back, and he seemed to know that I would.
At the time David Patrick was born, I was building a law practice. Each day I would go to the office, deal with clients, draft motions and petitions, make court appearances, accomplish necessary travel either within the state of Maryland or throughout the country, deal with other lawyers, and conduct my everyday business. Each night (when I wasn't on the road) I would visit the hospital to see how David Patrick was doing he stayed for a month after he was born. Patricia and I were working full time each day she as an administrator of programs for the blind, and I as a lawyer. David Patrick stayed with the baby sitter during the day.
When we brought him home in the evening, he was often hungry and sometimes sleepy. During the night he slept just like a babythat is, he woke up and cried every two hours. Sometimes he wanted to eat; sometimes he needed clean clothes; often he needed both foodand clothes. Many nights he just wanted company. Occasionally, he would let me rock him in the rocking chair where I could doze. However, there were times that he wanted to be walked. I never could find a way to sleep while walking the baby up and down, up and down. I did learn to sleep almost everywhere else. My colleagues came to know that if we were riding in an elevator in a 20 story building, I would sometimes take a brief nap on the way up.
The doctors were afraid that David might be subject to Sudden Infant Death Syndrome. This is a condition which causes the heart and lungs to stop functioning long enough that the baby dies. Consequently, David Patrick was required to wear a heart and respiratory monitor. The heart monitor had two major parts. There was a belt that wrapped around the baby's chest. On the belt were three small electrodes. Wires attached to these electrodes plugged into a box that had switches and displays on it. If David's pulse stopped or his breathing was interrupted, the monitor would beep. Patricia and I took a course to tell us what to do in case of an emergency. The first step was to take David Patrick and give him a good shake. The heart monitor would also sound if one of the electric leads to the monitoring belt came loose.
During the first month that our son was home, the device sounded several times, but these were all false alarms. It wasn't always a false alarm, however. One night the monitor woke us from a deep sleep. I jumped up and found that David Patrick was not breathing. I wondered if I could remember all the steps we had learned in the course to revive an infant. The first step was to shake the baby. I was ever so grateful that step number one worked. David Patrick received a thorough shaking. He complained about it, but he had to breathe to do it.
David Patrick was the first child, and Dianna Marie came three years later. Today they are both in school and doing fine. You would never know that both of them were premature. The children and I still talk about crops and politics and the weather, but there are other topics of conversationhomework, Boy and Girl Scout activities, trumpet lessons, making fudge, and visits to Grandma. Even though both Patricia and I are blind, our children are not. Sometimes the subject of blindness is part of the conversation. When I was six, I was enrolled at a boarding school for the blind, which was many miles from our home. My parents took me there and left me to stay in the dormitory. I was homesick, but my father had told me that he would be back to bring me home the next weekend. When Friday came, he was there. During the next four years my father came every other Friday to pick me up and take me home. I knew I could count on him. I looked forward to his coming, and I planned for the long trip home. He might not be able to be with me as much as he would have liked, but he'd be there on Fridays.
Both of my parents were like that. Once my mother told me that no doctor could work on me unless we had talked about it and she had given her permission. At the school for the blind I got tonsillitis and was sent to the hospital. Officials at the school told me that an operation would be necessary. I knew that my mother had promised me that no one could work on me unless we'd talked about it and she had given her consent. I was told by the hospital officials on a Tuesday night that the operation would occur the next morning. Early on Wednesday my mother came to my bedside. She and my father had driven much of the night in order to come to the hospital. They told me that the operation was really necessary and that I would be all right. I felt much relievedespecially because my mother had done what she had told me she would.
The quality of being reliable is fundamental. I have tried to emulate my father and mother in this respect. When I have promised my children that a thing will happen, I have tried to make it come true. And when they have needed my support, I have tried to give it.
There is an oft-repeated saying, which is that nothing comes free. The folksy expression is, "There ain't no such thing as a free lunch." Each individual must pay for what he or she gets. However, children demand much from their parents and others. They need to be nurtured, fed, clothed, walked through the wee hours of the night, bathed, entertained, directed, and taught. They take inordinate amounts of time, energy, concentration, and money. And, they have nothing tangible with which to pay. However, there is one commodity which they possess in abundancelove. Despite all the troubles and trials, the children give at least as good as they get. They provide something which can be had in no other way. They add an irreplaceable element to the warmth and the caring of the home.
I take family life for granted today, but it wasn't always that way. Before I came to be a part of the National Federation of the Blind, I wondered very often whether there would be a future for me. Today, I know that there is, and I work within the organization to help other blind people come to the same realization. We in the National Federation of the Blind are in many ways a family of our own. We have warmth and caring for each other, and we work to bring opportunities to blind people who have been afraid they might not have a future. One of the characteristics which is most notable about our organization is that if a blind person is willing to work and needs our help, we do what we can to give it. The National Federation of the Blind is always willing to be supportive to blind people who are working hard to gain independence and a positive future.