by Elaine Miller
At the time the baby was in intensive care, Mary was trying to help, but didnít know what to say or do. She seemed bewildered and lost. She would try to say the right thing, but it would seem to come out mundane and trite. She would say things like "take care," or she would ask questions over and over. It was really hard for her to comprehend psychologically what was going on. Family members didnít show a lot of patience with her at that time. I felt her fright and incomprehension of the seriousness of the situation, but I was being torn in numerous directions; trying to help Marie and Bill, as well as care for the baby left behind at home. Mary was kind of left alone until we would ask her to come right over with Sean. It is difficult for any family in crisis, let alone a family with the unresolved feelings from the past. Mary was left out there to flounder around on her own. She seemed to take it in stride pretty well most of the time. Always when she aggravated any of us, everyone was reduced to screaming at her. This in turn put her into a frenzy. It would then be easy for everything to escalate totally out of hand and at times Mary would start doing crazy things. ERS was sometimes involved.
Later after the crisis with Marie and Bill was over, Mary continued to care for her baby and came over every day. She was out dating again and we found ourselves baby-sitting many nights. I would work in nursing for periods of time and during that time I curtailed the baby-sitting. If she decided she was going out, however, she found a way to go no matter what. I would be frustrated with her that her child did not come first with her, because in my family, children and husband came first. My mother had always told me that you were to think of the other person first and if there was any time left over, then you could think of yourself.
That concept creates a lot of resentment and anger at times. There had been periods that I wanted time for myself and because of the demands that Mary put on me I harbored many resentful feelings. She was self-centered. This is another trait of head-injured people. Other parents in the support group said that their child was too. She ate constantly and gained a lot of weight; another head injury trait, since the brain stem was damaged and it controls the hunger sensations. I found it very difficult to coordinate that information with my feelings and to come to accept her the way she was. I wanted her to change. She couldnít change. The more that I saw she couldnít change, the more frustrated I became. I found in working the Al-Anon program that only I could demand time for me. It was erroneous to never think of yourself. Maybe that was why I would get depressed.
There were slogans in the Al-Anon program that meant a lot to me. The first one I centered on was one day at a time. I found myself looking and projecting into the future and rarely did things come out the way that I thought they would. Those were the days I feared each day and what I would have to face. I was constantly thinking what ifÖ? I would remind myself one day at a time, over and over. My friends in Al-Anon would remind me that I was projecting out of today and into the future instead of living in today.
Another slogan that was very important and pertained to me was how important is it? I found myself many times centering in on something that was not really all that important and making a big thing out of it. I especially did that when I was highly frustrated and tired. At times I found myself taking out my anger on Mary. I would then have feelings of self-loathing afterwards. It just seemed that Mary did things that aggravated me terribly. It went back to the thinking that I wanted her to change. I felt the things she did were a reflection on how I had raised her.
Mary had no sense of style. It seemed that she had cared about coordinating her clothes etc. before the accident, but after the accident she didnít seem to know how to dress with a little style and color coordination. I solved the problem recently when Mom died. I gave her an outfit. If I wanted her to look nice I decided it would be easier to help her. She was delighted to have a new outfit and it gave her a new outlook.
Mary did have a way with animals. When Sean was around six someone at work gave me a puppy. We named him Barney. He was supposed to be Seanís puppy, but it ended up that the dog loved Mary best in the whole family. Mary did what she always did with her baby, which was to talk to the dog whenever she was in the room with him. She and Sean took him for walks several times a day. Dogs and cats always gravitate to her. Her personality is slower and less hyper than most of the members of our family. I think animals liked her demeanor and pace.
After the baby died, I was uncomfortable with my degree of rage. I also hated myself, as it seemed that all the strides I had made with working the Al-Anon program were thrown out the window, and I was back at square one in my thinking. One of my friends suggested I go see an adult child counselor. I made an appointment with a priest who did nothing but counsel people.
I went to see Father. He was a big dark-haired man with a beard. He pulled no punches and was direct with what he thought. He kept telling me over and over that in order to get through rage and anger, one had to learn to be sad. I really didnít know how a person could learn to be sad. How do you just turn off rage? I was furious at God. My mother used to tell me that God didnít give a person any more than one could handle. I really thought that God was pushing it with me. I still didnít have answers to the biggest questions that I had over and over. Why me? What was the purpose for Mary to be like she was? For what reason was she saved? Was she really supposed to be saved, or were the doctors playing God? I really thought they had played God. I resented it. I still felt that I had been left holding the bag by the doctors and by my ex, even though I didnít hate Brett any more.
I mulled over in my mind why I thought our marriage had failed. It wasnít just that we had come from dysfunctional homes. It had to be more. I finally decided that the main ingredient missing was respect. He did not respect women and I didnít respect the way he treated me. I did not respect his outlook on women being inferior to men and not as smart. I knew this concept was wrong. The other main thing was that we were not friends. You have to be friends first, before you can love each other. He didnít even attempt to understand me and it was difficult to share things such as joy, success or sadness. He was always highly critical of everything I did or did not do. On the other hand Don was my best friend. We kept no secrets from each other and we told each other about things right away whether they were good or bad. He never told me that I was terrible or bad. I never criticized him either.
It took a long time for me to feel sadness when someone was deliberately nasty to me or one of my family. I finally gave up trying to change people to my way of thinking. When I could coordinate concepts with what was in my heart, my life started to be better. I realized that another person was allowed to be where he or she was in their lives and it was not for me to interfere with their life plan. That thought became a part of me. It took a burden off my shoulders. It worked well with people other than family. It came to mind when my thoughts turned to changing someone or getting that person to see my point of view and adopt it.
However, there were things that Mary was doing that I found unacceptable. It seemed that with my own family I could not see things that way. I think it was because I felt that she was a reflection of my failure, even though I knew in my brain that she had many of these unacceptable traits because of being head injured. I did not feel it in my heart. I especially hated the promiscuous behavior. I really felt that people judged me for the way she was. Finally after years and years, I came to the conclusion that I didnít care what other people thought.
As Sean grew older, it became harder for Mary to handle him. One day when he was two years old she called and said she was up to one hundred swats, because she added five more for each time that he swept the books from the bookcase. I could hear him screaming in the background. I told her she couldnít do that. I told her if she was having a hard time with him, she needed to bring him over to us. It worried me about how many other times she may be doing inappropriate things to him when she was angry.
At times she showed very poor judgment. That was also another head injury trait. We encouraged her to come over often with Sean. She had a one-bedroom apartment and Sean slept in a bed of his own at the foot of her bed. I tried to keep a closer eye on her and how she was caring for her child. She was not the best cook. I was afraid that she was not feeding him right. She learned to make chicken in the microwave and fed him that every night with a baked potato or she fed him pizza or hamburgers. They seemed to be surviving.
She did spend a lot of time playing with him. She loved to take him for walks in his stroller and she would take him for ice cream cones and to play with neighbors. As he grew older, she did spend much more time at our house. Almost every night she would be here for supper. She left him with us more and more and sometimes over night. She always took him for his check-ups at the clinic and with the doctor, and she always called if he was sick, especially with his asthma. His asthma was getting worse, especially in ragweed and goldenrod season. She was trying really hard to be a good mom. She loved her baby with all her heart. She just could not always put him first if some man asked her out.
When Sean was four and a half, Mary got a letter from housing telling her she had to move and find a two bedroom apartment because her child was too old for her to have him in her bedroom. They had given her a list of apartments that were not in favorable neighborhoods. It was at that time that I suggested she move back home. I told her that we could help her take care of Sean. She would have more freedom to date. She agreed, and Sean moved in downstairs and she moved into her old room upstairs. We put a lot of her books and some of her furniture into storage at the shop.
By that time Connie had gotten married and had moved out. Also about this time, we purchased a building to house our business. I was working and Mary knew she had to care for her child during the day. I was not looking forward to the problems that her moving back in with us could cause, but she needed supervision with her child. I had noticed in the past few months that Sean had become edgy, cried easily, and was irritable. He never wanted to go back home. He always wanted to stay here. I knew it was time to help with her child. I think he was tired of her driving him around in a hot car all day while she went to visit friends or have coffee with them. He would beg to stay here. She would leave him at Marieís some too.
After her twin brother died, Jessie bonded to Sean and they became very close. They played together all the time. Right after the twin died, Marie decided she wanted another baby right away and had gotten pregnant. They were here in town this time when my granddaughter Sarah was born. I was right there in the delivery room with Bill. She was over eight pounds and had a wad of dark hair. I gave her first bath to her when she came home from the hospital. It was before Mary had moved in with Sean. Marie and the babies had stayed here for a week while Marie recovered from the c-section. Bill had a full time job and they were buying a house in Peoria.
At that time Marie decided that she wanted to take a seminar and do nails for a living. She left the girls and went for a day out of town. The instructor told her that she had a real knack with the paintbrush. Marie was delighted; bought the equipment she needed and set to work. It was no time at all before she had a good clientele. She really had just the touch to do nails better than most people. She tried for awhile working for another girl, but decided to set up a studio in her home, which she has today. She would be there to take care of her own children too.
After Mary and Sean moved in we started to have a routine. That fall Sean went to Head Start. He had to wait to go to regular school since his birthday was late in the year. He loved it. He had gone the year before in Peoria and loved it too. There was a small bus that picked him up at the door. Mary got him up and ready on school days. She continued much of the time caring for him. I usually prepared the evening meal unless I asked Mary to make hamburger helper.
I hated to clean house and so I hired Mary to clean for me weekly and I paid her. She didnít mind and did a good job much of the time. There were times that I had to remind her to get under things or get into the corners. I would pay her to help me do extra things like cleaning the art room. She liked making extra money, as she liked to run around in her car all the time and needed gas money.
Mary and I had our ups and downs. I still got really mad at her for carousing around. She hammered at me to get her way about things. Sean settled into a routine and was a really happy child. We paid a lot of attention to him.
Sean decided one day, a year before they moved in, when we were driving along in the car, that he needed a Dad. He said his cousin Andy had a dad; it was his Uncle Seth, Jessie and Sarah had a Dad; it was his Uncle Bill. He wanted to know why he didnít have a Dad. We told him that it had not worked out between his Mom and his Dad and that he didnít have a Dad, but he had Grandpa. He told us that he had to have a Dad of his own and from now on he was going to call his Grandpa, Dad. He was three years old when he told us that, and ever since he has called Don, Dad. He says today that he does not remember ever calling Don grandpa.
One day in counseling I told Father that I just wish I knew why me? It seemed that I knew people that had not had nearly as much tragedy in their family. He said, "why not you?" He asked me if I thought a neighbor or another relative should have had the same tragedy? I, of course, didnít wish that on anyone, even my worst enemy. From then on I started to think of it as being life plans for Mary and me and that there were life lessons to learn from it. The pain of always wondering why and what the purpose was, slowly ebbed away. I got so that I didnít think about that any more.
Sean went through kindergarten and was in first grade. School had just barely started. He came home with asthma. He has had asthma since he was eight months old. It seemed to be getting worse. It was the end of August when ragweed and goldenrod were at the height of sending out pollen into the air. We used his nebulizer machine with the medicine in it. It would help a little, but I didnít like his wheezing and he was short of breath. We went over to the school for a short time to meet the teacher night. He went to bed shortly after we got home.
In the night Sean woke us and said he couldnít breathe. We used the breathing machine again. I listened to his lungs and they didnít sound very good. He dozed off for a little while longer and I called the doctor when he got up the second time. We used the machine again. It just didnít seem to help. I got dressed and called for his mother to get up and come with me. We were going out the door and I noticed his lips and nails were blue. Mary drove in her own car and he and I rode in mine. I drove like a bat out of hell. I flew through the town and across the bridge into Peoria and to the hospital. I rushed him into the emergency room. I told them he was in respiratory distress. They whisked him into a cubicle and before I could get back there, they had respiratory therapy in there with another treatment going. I stood holding his hand and watching.
He looked so small and frail to me. He had fear in his huge sapphire blue eyes with the long fringed lashes. The doctor and nurse were there besides the respiratory therapist. They tried to stabilize him for an hour and a half and couldnít. Each time they took the nebulizer machine off, he turned blue and his oxygen saturation dropped to way below normal. They had oxygen going at the same time.
They decided to admit him. They put him in a step down intensive care unit. By that time they had put in an IV line and I had to hold him screaming the whole time while they stuck him. I wanted to cry for him too. I felt so bad, that he had to go through this. They settled him into a bed and brought in some video games and a TV to his room. He had a mask with oxygen and nebulizer medication on full time. They gave him steroids in his IV. He was in intensive care for three days. We took turns staying with him. Mary would not stay. Marie came one night and stayed. Don stayed the other two nights. Sean was moved to the pediatric floor for two more days.
It was during this time that we met the pediatric pulmonary lung doctor. The nurse taught Sean to use inhalers four times a day. I had been working day shift while Sean was in the hospital. His Mom had stayed with him part of the days.
One day the hospital called and said that Mary was "going off" and that they were about ready to call security to have her removed. I told them her counselor at that time was right there in the hospital. I told them I would put in a call for him. I had told the hospital from the beginning that she was life after head injury. It was evident that she was not dealing with stress and a crisis well. Her counselor went right down to talk to her. He was able to settle her down.
I had a long talk with the doctor on the weekend when we brought Sean home. He said that one of the inhalers would build up in his system to a level that would keep him from ever having that severe attack again. The other inhaler was the bronchodilator. It kept his bronchial tubes from closing. It was very important that he used his inhalers on a routine basis, a process we dubbed "The Treatment". We settled into a routine with the treatments. I fixed up a "treatment" bag to keep his supplies in. We also had a flow meter to measure his expiration, so that we could tell how well he was breathing. We sent a treatment bag to school to be used at lunchtime also. The school secretary handed him his treatments to do. Sean followed the treatment plan pretty well.