William Brandon Zellers 12/17/93–10/17/94
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EDITOR'S NOTE: The following is from the Spring 1996 edition of the Heart to Heart newsletter
"Buddy Boy" by Judy Zellers
October 17, 1994, was a life-altering day for mysclf, my husband Bill, and our daughter, Kayla. It was the day we lost a most precious part of our lives- our son and brother ~ William Brandon Zellars. I am writing this letter on the first anniversary of his death, which marks a very emotional year. I would like to share "Buddy Boy's" story with you, for I now feel capable of doing so.
Bud entered our lives on December 17, 1993, two and a half weeks carly. He weighed five and a half pounds at birth and was 19 inches. Bud was very blue when he was born; however, after taking all vital signs, we were assured he was just fine. I had a very normal pregnancy and delivery. Bud nursed very well in the hospital and I can remember feeling so pleased with this because of his low birth weight. We came home from the hospital to a very happy household. Kayla, who was not yet two, was extremely pleased with the addition of her new baby brother.
He immediately added a new dimension to our family - one that I will never, ever forget.
I began to notice Bud was not nursing as well but we all attributed this to a lack of energy from being under the phototherapy lights for jaundice. But for some reason, I sensed that Bud was not a very happy baby. He cried constantly, never slept, and always had to be moving. His hands and feet would turn blue when 1 undressed him or gave him a bath. Bud was also very sensitive to any loud or startling noise. I simply felt that something was not right, but my pediatrician and the books I read had a simple answer for everything.
During the end of January, my daughter had the RSV virus, an upper respiratory infection. By the beginning of February, so did Bud. Bud was admitted to the hospital. It was an epidemic year and the hospital was full of infants with the virus. My pediatrician discovered Bud had a heart murmur, and while we were waiting for a room at the hospital we went to see a cardiologist. He discovered a VSD and possible stenosis. The cardiologist informed us he could be receiving a distorted picture due to the virus, but said he would follow Bud's progress through the virus and recheck his heart in a few weeks. Several times during our six day stay at the hospital, nurses asked me when my son's heart surgery was. The cardiologist attributed the comments to nurse's error. Bud was released from the hospital but continued on oxygen at home for several days.
I continued going to my pediatrician with questions. The crying had not stopped and the nursing was getting worse. My doctor was convinced that I was suffering from postpartum depression and suggested medication. I was very angry at this. My husband also felt that I was losing it. I felt no one was listening 10 my fears. I loved Bud so very much, and I started feeling helpless as a mother.
I finally told my pediatrician that I wanted to see a geneticist - to either confirm the thoughts I was having, or put my mind at case. The appointment was scheduled for the day after our follow-up appointment with the cardiologist. The cardiologist confirmed Bud's stenosis and mentioned Williams syndrome to us for the first time. We left the doctor's office in shock. My fears were becoming reality and my husband's world began to crash. That evening was very difficult ... not knowing was the hardest part. We met with the geneticist at 4: 00 the following day. After a lengthy discussion, he examined Bud. Dr. Yang confirmed Williams syndrome very quickly. Bud had the pattern in his eyes along with the heart defect, and these grouped with other symptoms made the diagnosis very easy. The doctor answered all of the questions we had at the time and shared some articles and pictures with us. We were quite overwhelmed, and left the office in our own world. That evening was full of many tears ... for Bud, for us, and for Kayla. How could we ever cope with all of this?
I made a call to Diane Niles (WSA Founder) in San Diego. I have never met Diane face to face; however, she helped me through some of the most difficult days in my life. During the next several months, Diane was always there ... to listen or to lend her insight. I will never forget how my conversations with Diane saved my sanity... over and over. Diane gave me a list of people in the Sacramento area to call for help, others with WS children.
I called one of the numbers and Pat Graham answered the phone. Pat was Michael's grandmother, and Michael had Williams syndrome. I talked to Pat for a very long time, and felt a sense of relief when I hung up the phone. I was still very scared and overwhelmed, but I started to think that this was something we would be able to handle, but Bill and I were having a very hard time during this period. Acceptance was just not in our lives at this point. We both had too many unanswered questions, and I felt the fear of the unknown was taking over our lives. Our biggest question, of course, was why us and why Bud? I was so worried about his crying, and I knew Kayla and Bud needed me full-time. I could not go back to work caring for other children in my home. Friends and family were offering their help on a daily basis, but I felt this was a situation we should be able to handle by ourselves. After all - we were the parents. Was I ever wrong! One friend persisted and finally broke through my barrier. Every night after work, Melody would come over and walk Bud for a while. This gave me time lo take a shower, get dinner ready, spend time alone with Kayla, or simply spend time alone. This went on for months and became a regular part of our days. It proved to be something beyond friendship... it was, and is, something I will never forget. Not only did Melody help me, but I truly felt Bud looked forward to the time he spent with her, and they became very close. Family life at home was still strained. We were all trying very hard to cope with our situation, but many different feelings and emotions kept arising. I simply wanted Bud to be happy, and it felt like he was never going to be. This broke my heart, and I felt we were falling apart as a family. My husband was dealing with Bud differently than I was, and some days were very hard to get through.
Michael's mother, Margaret, called us back within a few days of talking to her mother. She suggested that it would help if we could come to her house to meet Michael. She felt many of our questions would be answered by meeting her and her family.
Bill felt he was not ready to do this, but I knew I had to - I needed to know what our future held. I had no idea what to expect, and I had thoughts of turning around and heading for home. I thank God every day that I went.
Margaret, Michael, and Michelle (Michael's sister), definitely changed my life. I could never explain the feeling I had when Michael answered the door. He opened the door and said, "Hi, you must be Judy." He brought us in, and we met the whole family. The visit was beyond anything I ever imagined. Margaret answered so many questions, and, of course, Bud reminded them all of Michael when he was a baby. For the first time, I actually felt someone understood what I was going through. I remember Michael saying to Bud, "Bud, I heard you have Williams syndrome ... that is so cool." I knew at that point life was going to be O.K. I left Michael's house that day with a new sense of what life was all about. I knew there were going to be many challenges along the way, but I now felt they would be manageable. Michael had heart surgery when he was four, so I felt that would be a bridge we would cross at the appropriate time. For now, we had to concentrate on getting through one day at a time. Buddy Boy was four months old!
The months that followed were still very hard due to Bud's constant crying and inability to sleep. We pushed for our pediatrician to check Bud's calcium level and it was very high. My husband and I both suggested changing formulas to see if it helped the crying, but our doctor felt things should be left alone. Bud was gaining weight and growing steadily at his own pace. He felt the calcium was important to his growth.
Bill was dealing with all the concerns in his own way, and at the time we know he wanted to just run away from life. He was having a really hard time dealing with the reality of what life was like on a daily basis. I invited Michael and his family over for dinner, and this proved to be very helpful for Bill. After meeting Michael, Bill realized the capabilities our son could have, and it gave him a different outlook on life. Again, Michael made a great impact on our family, and their family played a major role in our lives for the next six month's. Like Diane, Margaret was always there for us, at any time, to answer questions or to listen... about the good days and bad days. She always seemed to know how I felt and what to say. Bill and I began to see a counselor. We were able to vent our frustrations and feelings openly, while learning to understand that the needs of each other were going to be different. We had to learn to respect those needs as we never had before. Bud was five and a half months old!
We also took advantage of respite care one day a week. I spent every Wednesday morning with Kayla and this helped me realize she was doing fine through all the turmoil. Counseling continued, a few friends were always there to help, and my husband's family was indispensable. My mother-in-law had a very special touch with Bud.
No matter how bad our day was going, or how long Bud had been crying - the minute she walked into the room, he would stop crying and just listen to her talk. Believe me, there were many days I would show up at her house ..all hours ... and just say, "please help!" Then one night in May things started to overwhelm me, and I felt that the world was closing in. I called my girlfriend Martha in Ohio, and I just cried and cried. I just didn't see that rainbow yet. Everything seemed to be catching up with me and I was blaming everyone. My good friends, Martha and Sue, arrived in Sacramento in a couple of days. That period was the most devastating time in my life. I reached a point of desperation. I remember feeling so helpless, and I truly felt that I should have been able to keep Bud from crying so much. I remember Diane telling me how hard the first year was going to be, but one day it was all going to stop. I remember her telling me that one day I would wake up to a smile instead of the tears. That day just seemed like it was never going to arrive, and I simply broke down. After this devastating week, life looked much brighter. I realized how important my children and family were, and I knew that they all depended on me so much. I had to be strong for my children, and the rainbow was going to appear. Bud was six and a half months old!
We went to the cardiologist for a recheck in late June. After a very brief exam he stated that Bud's condition was the same and there was no reason for an echocardiogram to be done. The doctor scheduled his next appointment for late September, and Bill and I were both so happy that day... we made it through another heart check-up with no problems ... what a relief!
In July and August our precious little guy began to cry less, and shared his first smile with us. I never knew one smile could melt so many hearts. The smile became a daily occurrence and life was so much easier. Life seemed normal. Bud still did not sleep, but time awake with him was now spent playing...(to be continued)