What can one write about a little boy who knew pain, yet kept his innocence? Who hadn't yet learned about hatred, discrimination, and all the adult woes? Who had nothing but love for his friends and family, and who would have given anything to live, to learn how to communicate his thoughts? Here are my memories of my brother. No words will ever do justice to such a beautiful, loving, and gentle soul.
Adam was born on May 19, 1977 into a lower middle-class family. The marriage between my parents was never happy that I can remember.
When my mom found out she was pregnant, it was not welcome news. My parents said that they loved us both, but it was just not the right time. They were both too young. My mom was concerned because the baby never moved much and she never got that big during the pregnancy. When he was born, we found out why. Adam had Cornelia de Lange Syndrome, a very rare disorder (cause unknown). We think it was because my mom had an IUD at the time, and my dad was taking steriods and other medications for his asthma. My parents argued back and forth on whether or not they should go through with the pregnancy. In one way, I wish he had never had to suffer the life, and then the death, that he went through. But in my heart I am glad they did have him, for Adam is my only full sibling.
All I remember is that when Adam came, it was not as happy as I expected it to be. Everyone was worried and mom explained that Adam was a "special" baby. I remember vividly bringing a blue carnation in a white vase to my mother in the hospital and peering in through the glass at all the babies. I was only 3 at the time. The doctors all told mom that Adam would not live long, and if he did, he would be a vegetable, never even recognizing his own family. They recommended institutionalizing him until he passed away. He had no suck reflex for feeding and had bad reflux, so they had to feed him with a tube down his nose for a long time. He had poor muscle tone and abnormal reflexes. In addition, he had one arm that ended at the elbow with a little finger. He was also mostly deaf, and most certainly severely mentally retarded.
I remember going with my mom to some institutions and seeing rows and rows of babies in cribs. My mom couldn't bring herself to turn her son over to such circumstances, so she took him home to die. I remember holding him on the couch with adult supervision.
Adam really beat the odds. Not only did he survive, he THRIVED! My memory is a little blurred on exactly when he passed his different stages, but he learned to sit up, smile, recognize his name, and made some sounds for "ma ma." He was put into physical therapy and learned to recognize the woman who came to our home to make him work. Whenever he saw her, he would become limp and turn his head away from her. She thought he was really severely impaired until we had her look through the window to see him playing! He had several surgeries around this time for his intestinal problems and soon after, could keep food down and started putting on weight.
When Adam was around 3 or 4, he learned to scoot his way around the house. He never learned to walk, but we made a skateboard-like vehicle for him so he could get around faster. Boy was I sorry about that! One day I came home from school and he had EATEN all my crayons! The doctors assured us that the crayons would pass, but it didn't make me feel any better.
At age 4 he was enrolled in a special school where he learned to eat with a spoon, sign simple words like "thirsty" and "diaper", and make friends. He had several buddies at school. One would always be taking his clothes off. No matter how much velcro they used, his friend would always be stark naked when we arrived to pick Adam up. One time we couldn't find his hearing aids, and a search around school didn't lend any clues. Adam hated wearing his hearing aids. About a week later a teacher found his hearing aids. Adam had hidden them inside a toy! He eventually got most of his hearing back and didn't have to wear the aids.
When I was 5 and Adam was 2, my parents separated. Mom started working again and starting at age 6, I came home from school to get Adam off the bus and wait until mom got home. She hired an older girl to help. Times were tough but we did the best we could. Adam was a very happy child and had a hearty laugh. He had a sense of humor, too. When my mom would make a funny face, he would laugh. When he had a dirty diaper, which he knew my mom dreaded, he would sign for "diaper" and then laugh about it. His favorite character was Mickey Mouse because of the big eyes. He also liked clowns. The Shriners sent us tickets to the circus one year and Adam really enjoyed it.
Those were the best of times. Mom and dad weren't fighting anymore because they were separated. Mom was really cool. I have memories of us building bed-sheet forts in the backyard and camping out. Mom would bring us brownies. Dad would take us on the weekends and treat us to pizza, Taco Bell, and movies. He really cared about my grades and would communicate with my teachers about my schoolwork. He also took Adam to the doctor and on special trips that he would enjoy, like to the duck pond. Sometimes Dad, Adam, and I would drive to California to spend a week with our grandparents. I was in Girl Scouts and Adam was a school with friends and teachers he liked. Those were the best of times.
When I was 7 or 8, mom enrolled in community college and started dating again. It was difficult for her to date with two young children, one of whom was handicapped. We went to dad's on the weekends, but mom and dad were always fighting. They never even spoke except through lawyers. It was really messy. Mom started dating one particular man about 1 year before Adam died. He had two small girls whom we used to play with. He also had an older daughter from a previous marriage whom I never met until after everything happened.
Sometime around then, Adam starting having lots of accidents and health problems. First, my dad noticed that when he pressed on Adam's stomach, it seemed really sensitive. Second, he had some burns under his chin when he came for a visit. Dad took a picture of them--it was useful later on. Mom said it was from a hot carseat and did not seem concerned. He also had some incidents where he stopped breathing and mom had to call the paramedics to revive him. She started telling me that Adam was "wearing out." I started preparing for his death. About 3 weeks before Adam died, he came to my dad's in a full leg cast. When my dad asked my mom about it, she said that he had some kind of accident in bed, either falling out or getting his leg caught. It was later discovered that it was a spiral break, such as the kind one would get from twisting. Dad took him to the doctor's several times, but no one did anything. They attributed it to Adam's syndrome. Since Adam's sydrome was rare, no one knew what was normal and what wasn't. Things would be different today.
--->About his death