| It's Not My Fault |
| When I was 17, I graduated from high school. I had decided to double up on a few classes so I could graduate a semester early, and work full time until I left for college. My graduation was set for January 31, 1996. How ironic that seems to me now, looking back, as three years later on that very date, my brother passed away. He was 18. My brother David did not have a "normal" life. He did not ride bikes with his friends, or play football after school, or play basketball in the driveway after dinner. He did not participate in after school activities, or go to the movies every Friday night, and he never had a date in high school on a Saturday. But what he did have was an overwhelming sense of the important things in life, even though he could not express them. He never spoke a word in his life, other than the garbled noises he made when he expressed emotions of happiness, frustration, sadness, or anger. He never said my name, and he never said his own name either. But although he could not speak aloud, he spoke to the heart of anyone who ever came into contact with him. Everyone who crossed his path learned something profound from this 18 year old severely handicapped boy named David. When David was born, the doctors told my parents he would never be a "normal" child. He would not run and play, like other children. In fact, he probably would never walk for that matter. He would not learn to speak, he would need to be cared for as an infant for his entire life. My parents were heartbroken, but headstrong, and they knew what they had to do - they would provide the best quality of life for their son that they had the ability to. When my brother was 4 or 5 and my mother would take us grocery shopping, the stares from other people (and not all were children, most were adults) were heart-wrenching. How could people be so ignorant as to stare, when I, a six year old, knew better than they! And I, in defense of my brother, would have no fear in approaching an adult to ask what exactly it was they were looking at. As I got older, I tried spending more time with my brother. On one trip to the mall to do some Christmas shopping, I noticed a little boy around the age of 10 looking at my brother as I pushed him around in his wheelchair. I listened, as the boy turned to his mother and said, "I feel so bad, Mom. I have never seen a little boy in a wheelchair, only old people." It was a simple thought coming from a small child, but yet it touched my heart. Maybe times were changing and people were beginning to accept diversity. Don't get me wrong, though: I did not want people feeling pity or sorrow for my brother's condition. Yes, I hated the fact that David did suffer pain much of his life, but I did not feel sorry for him. His little 70 pound body was the strongest I have ever seen to this day! David withstood more doctors’ appointments, surgery, and broken bones than anyone I know, and he handled them with the purest of grace and confidence. He was the bravest person I have ever met. When I was 15, my parents took David to a geneticist to see why he was born this way. Some tests were done on him, and the only conclusion that was drawn was that David was not going to live to a normal life expectancy. He probably had a few more years left, we were told. At the time, David was a mere 14 years old. That was my first realization that David might not be with us for much longer. Feelings of guilt overwhelmed me. I constantly ruminated on all the mean things I had said to him, all the times I did not want to take care of him, or was jealous of him for getting more attention that I, or yelled at him out of frustration. And after he passed away, I still had feelings of guilt. If had done this, he would have lived; or, if I hadn't done such and such, he wouldn't have died. I still blame myself for the stupid things over which I have no control. When I went away to college, each day I contemplated whether or not I should have gone away. If something happens to my family, it will be all my fault because I am not there. I should have stayed home and gone to a local college. The thoughts that went through my mind were ridiculous, yet for some reason I still believe today that if I had not moved out of my parents’ house, my brother would still be alive today. Deep down inside, I know that isn’t true, but perhaps I could have spent more time with him in his last days. In November of 1998, David’s primary neurologist advised my parents to “prepare for the inevitable.” My parents fought even harder, but his health was going downhill. I spent as much time as I could with David over the next couple of months, and every moment we had together was precious. In January of 1999, David was admitted into the hospital with severe pneumonia. Miraculously, he recovered from the pneumonia within one week, and the doctors were amazed. But he was still in a lot of pain and his other functions were failing him. His digestive system was not working and he could no longer eat. He was put on a catheter, and was given a Morphine drip to ease the pain he was in. When the doctor decided there was nothing further that could be done for David, he discussed the options involved with my parents. It was decided that he should be at home and be kept as comfortable as possible in his last days. He came home from the hospital on a Thursday. We had a hospital bed set up in the living room, with a Morphine drip in the IV, and Morphine patches as well to keep him as comfortable as possible. By Saturday he was still holding on, but his breathing was becoming more and more shallow, and we knew that his time left on earth was only a matter of hours. I stayed at my parents house that night so I could be with David, and my aunt and my cousin came down from New York, and we all sat by his bedside taking turns holding his hand while he tried to sleep. |