Justin Scott Buss was born on a Sunday morning, May 22, 1988. He definitely was one of
God's Angels. Hours after his birth, the doctor came and told us that he believed that Justin had Down Syndrome. My first thought was, "We get to participate in the Special Olympics!". I didn't care that my child was "different". He was still my child and I loved him from before he was born and I would love him all of the days of his life and beyond. Little did I know at the time what my thoughts really meant. At one of Justin's check-ups, the pediatrician thought that she heard a heart murmur. This is very common with Downs children. So we began our visits with a cardiologist. Justin had not one but two heart defects. He has an ASD and a VSD which meant that his blood wasn't pumping properly. So he had routine visits with the cardiologist to monitor how his heart was doing. Finally the doctor decided that we could wait no more. Justin's heart needed repairing if he was to survive. So in January of 1989, Justin was admitted to UCSF. Justin and Mom moved in for the long haul. If the surgery went well, Justin was expected to be there for at least two weeks. Everyone's prayers were answered and he came through like a champ. He did so well that the doctor let me take him home on the 10th day. So we thought that it was going to be smooth sailing from here on out.
Then Christmastime rolled around and Justin wasn't feeling real well. He started having a lot of bruises and just wasn't himself. So I took him to see his regular pediatrician. She referred us to a Pediatric Oncologist. That same day he performed a bone marrow aspiration. I was with Justin for the entire procedure. I wish that I could have taken his place on that table. The pain that he went through was unbearable to have to watch. The diagnosis was confirmed. On Jan. 5, 1990, we were told that Justin had Leukemia. The plan for treatment was laid out for us. I never thought that we would lose Justin. This was just another battle that we would fight together. Justin and mom were in and out of the hospital for the month of January for treatments. A Hickman Catheter was put into his chest so that his treatments could be done through that instead of trying to find a vein every time they had to inject something. This was a Godsend. Whenever we got to be home I would have to take care of the catheter. My 8 year old daughter would always help me by getting out the supplies that we needed
and handing them to me. It became our routine.
Then in the beginning of February, we went back in for a blood transfusion. Justin was always running low on Platelets. It was supposed to be a routine visit. On the night of February 5, I noticed that Justin was breathing differently. I called the nurse in but she said that she didn't notice anything wrong. But a mom knows when
her child doesn't sound right. So, since we were already both awake, a transfusion was begun at 4:00 in the morning of February 6. Later that morning when the doctor was making his rounds, Justin was running a fever. The doctor gave Justin until noon to be rid of the fever and he would let him go home. All morning long the fever stayed with him. Then, just before the doctor was due to come back, the fever was gone. I believe in my heart that Justin knew what had to be done to go home. When the doctor checked him, he gave us the okay to leave. As the doctor was writing up his discharge orders, Justin sat up and pointed to our jackets. He wanted to go home.
When we arrived home, Justin had absolutely no strength. His daddy and I kept trying to get him to crawl or sit up but he just didn't have the strength. So it was a cuddle day for all of us. That night when I gave Justin his medication, for the first time he got sick. I figured that the medicine must have finally gotten to him. But the remainder of the night Justin kept throwing up whatever went into him. My poor baby couldn't keep anything down. I remember telling my husband that since Justin wasn't feeling well, I was not going to put him in his crib, but keep him with us for the night. All night Justin kept trying to drink a bottle. As soon as something went in, it came right back out. Finally, at some point, Justin was worn out. I put on his Lullaby tape that we always listened to and with Justin in my arms, settled back against the headboard to try to rest. As Justin lay there in my arms, he suddenly opened his eyes and in a strange voice, called "Mom, mom, mom". It was a voice that I had never heard before. I reassured him that Mama had him and I wouldn't let him go. Then he snuggled close to me and went to sleep. Little did I know that at that time, Justin was on his way to Heaven. I put my head back and drifted off to sleep. I awoke at 3:00 in the morning and went to lay Justin down so that I could use the bathroom. That is when the REAL nightmare began. My baby was limp and not breathing. I awoke my husband asking him for help. I called 911 and waited for them to arrive. I knew in my heart that Justin was gone. When the paramedics arrived, they tried to revive him but were unable to. They carried him out of our house and into a waiting ambulance but wouldn't let either his Daddy or Mommy go with him. By the time we made it to the hospital, which was only about 10 minutes away, the doctor had already pronounced Justin! . When we arrived, they took us back to a room to talk with the doctor who told us that there was nothing that they could do, He was already gone before he got to the hospital. They led us into the room where Justin lay. I went to pick my son up but couldn't. He wasn't my son, but a body that weighed so much more than Justin had when he was alive. We sat there crying and talking to him. The hardest thing I had to do that night was walk out of that room and hospital without my son. Thinking back, I now believe that the voice that came from Justin was him on his way to Heaven. It was like a far away sound. And I believe that was his way of telling me good bye. I miss my son every day of my life.
