My sister had already left for work today and I had fallen back asleep. When I woke up again, in our quiet apartment, the memory of waking up in a hospital room in nearly the same way was an eerie reminder of the numerous times I actually had done that; one particular day in September of 1999. Today there was one exception, I also woke up with baseball on my mind; an upcoming Cubs night game that I really want to go to.
We were getting ready to go to New York for my Starlight wish. My mom had reached out to them in July of 1999. It was a way terminally ill kids could have something happy and fun to do in the midst of great illness. We were finalizing our plans with our Starlight coordinator the week before we were scheduled to leave. The day before my mom and I had driven to UPS to pick up a package we had missed. It was the pager the transplant team had sent me to so they could page me when they received a heart. I remember throwing the package on the dining room table when we got home and walking away. Saturday night, September 25, 1999, my mom was on the phone talking to our starlight coordinator as she did regularly when the other line interrupted their conversation; as she had been doing, this time to set up a time for her to drop off our plane tickets and a few other things. My mom hung up and continued working on some reports, when the phone rang again, “this is the hospital calling”. I picked up the phone and heard this and started screaming and crying. I had no idea what was going on, but knew that I was going to New York in a few days! My sister, Amy, 13, and I had been upstairs in her room watching TV in our pajamas. My mom came running up the stairs and told us we needed to get dressed because we needed to be at the hospital within two hours. We were already a half an hour away and that wasn’t including traffic so we had to move. I asked what was going on and all my mom could tell us was that the hospital called, there is a heart. I replied “we didn’t even set up the pager yet”. It was still in the bubble wrapped envelope on the dining room table. With a lot of coercion I slowly made my way to the garage and then into the car. My mom was frantic, my dad was trying to get me out of the house and my sister was doing her best to keep calm and keep me moving. I didn’t want to go, I wasn’t ready. Our trip to New York was scheduled for October 3, literally the next weekend we were going to leave.
It took about five hours for the doctors to get with the heart. They had to make sure the heart I was going to be getting was going to be healthy enough to be transplanted. If there was anything that might keep the organ from being used, now was the time. If that was the case we would return home and await another call from the hospital and try another heart. Everything happened so fast. It was only three weeks that I was on the transplant waiting list before receiving the call. The surgery was roughly twelve hours long. When I woke up, I was in my hospital room. I turned to look out the window and it was the ideal fall day’ chilly, wet from the rain, the colorful leaves swirling as the wind picked them up.
We did get to go to New York, six months later. I don’t think I would have been able to enjoy it as much as I did before the transplant. I didn’t realize how sick I was, because I had gotten so used to the feeling that it was the only way I knew to keep myself going. There is one more important thing to add to this and that is a Thank You to the donor family. Without their generous decision I probably wouldn’t be here. I felt myself slowly getting worse every day. I never let myself go to that place of defeat, but it was a reality if this family didn’t save my life; not only mine, but seven other families received life saving transplants that night. My mom reached out to them with a letter thanking them for what they had done for me and sending condolences for their loss. Their loved one does live on in all the people they helped get the chance to do that. So thank you! It has been a crazy fourteen years of challenges and strength. Here is to the next fourteen. This heart is not going anywhere! September 26, 1999- present.