Eddie loved the song "Midnight in Moscow" by Kenny Ball and his Jazzmen. It's an awesome jazz tune and when I hear it I feel really happy and really sad, all rolled into one big ball. It has a rhythm that is the pace of life or what the pace should be if you do it right. (If you are a jazz fan you will get this. If you are not, look this song up on iTunes or YouTube and become one.) Eddie would listen and open up his palms into perfect "jazz hands," waving them along to the music.
As you might have guessed, I'm a bit of a music geek. My taste is all over the place. I own everything from The Flaming Lips to Flemish Romantic Music. It runs in the family and the iPod I had borrowed from my sis when Ed was in PICU was a source of entertainment and great joy. I remember discussing childhood heartthrobs with nurses much younger than me while introducing them to the wonder that is NKOTB and, in response to an older nurse's contribution, cranking up Andy Gibb's "I Just Want to Be Your Everything." It was like a party in our little cubicle, even when Ed was not doing well and even more so once he had miraculously rallied and could show everyone his jazz hands. I wish that this was the end of the story, that we went home a few days later and lived happily ever after. There was so much more drama to come.
Eddie had to be on TPN which is nutrition administered through the bloodstream. Like I said before, he had short bowel syndrome which means he was basically gutless. Prior to his birth, I really had not given any thought to how important one's small intestine is and did not even know about the existence of this little thing called the ileocecal valve but, trust me, they are both very, very important. Eddie had to have a central venous line, or CVL, which is a little rubber tube that went from a major vein in his body to the outside of his body, kind of a semi-permanent IV, so we could hook him up to the TPN. The whole system kept him going, but it also unfortunately made him really sick sometimes. CVLs get infected and blocked and TPN has to be processed through the liver and eventually the liver just can't take it anymore.
So, during the time he was unconscious, his CVL had stopped working for some reason and had to be replaced. For most "normal" families this would seem like a major, scary surgery but Eddie had gone through this procedure so many times it had become almost routine for us. Sailing on the high of his miraculous recovery, the last thing Phillip and I were worried about was his CVL replacement. He was in the hands of a surgeon who had known Eddie since birth and who we loved like family. We sat in the waiting room, playing gin rummy and suffering a minimum of anxiety. As the usual thirty minutes stretched on to an hour, though, our game slowed and our anxieties rose. Finally, they came to get us and told us to come to the recovery room.
As we approached Eddie's gurney, we saw that the anesthesiologist was still using a hand-held breathing bag to help him breath. They explained that, while Eddie's surgery had gone well, he still was not breathing on his own and should be by now. Since Eddie was a hospice baby, they needed our permission to hook him back up to the respirator. I looked Eddie in the eyes and his expression spoke volumes. My baby had been fighting for so long and he was so tired.
Let me explain something before I continue. Eddie was only thirteen months and had already been through more surgeries and procedures than most people have in a lifetime. He was a warrior and a survivor, but he was also a human being and my beloved child. Even at one year old, he had an ability to communicate with those of us close to him that was way beyond his years. His heart was speaking to my heart in that moment and I knew he wanted to quit. So I tried to let him.
It was awful. Phillip and I said it was okay to stop helping him breathe and they handed him to me. I had thought that he would rally. He always had before. Within seconds, though, he was limp in my arms. I freaked. I wanted to respect him, to give him the dignity to die if that was what he wanted, but I had no peace. I cried out to God. I cried: "Lord! If this is Your will, I accept it, but PLEASE conform my will to Yours!" I felt nothing. The doctor on call, a man I had met only a few minutes before, put his hand on my shoulder and looked into my eyes. It was now or never. I looked at Phillip and saw my agony reflected in my husband. "I can't do this without him," I yelled. I still don't know what exactly I meant, if I couldn't do life without Eddie or let Eddie's life end without God. Anyway, I handed him to Phillip who shuffle-passed him to the doctor like a little football.
I don't really remember what happened next. I know there was a "CODE BLUE" and a flurry of activity but I don't remember the details. In my next clear memory, I'm in the arms of the hospital chaplain, facing away from where the doctors are working on Eddie and screaming "That's my baby!" at the top of my lungs. The chaplain was shushing me in a soothing way and said, "Hup! They've got a heartbeat." In a little while, the excitement was over and I was standing next to my smiling baby again.
Eddie smiled a lot, but this time it was different. This time, he was smiling while he was hooked to a respirator. He had been intubated so many times in his life I've lost count and he had never been happy about it. As glad as I was that he was still alive, I was also afraid he had suffered terrible brain damage. Eddie was one smart cookie so that was going to be a real shame.
While Phillip and I were standing there, numb and a little brain damaged ourselves, the doctor approached us. He put a hand on each of our shoulders and told us we had changed his life. That he had never seen faith like ours. That he had been an atheist his entire life, but that witnessing our faith had made him come to believe in the God of Jesus Christ. I wish that I could tell you that I said "praise the Lord," sat him down and told him the good news of the gospel. That we prayed together that Jesus would enter his heart and be Lord and Savior of his life. But, give me a break, okay? I'm only human. I did manage a weak smile and an even weaker, "That's great." My hope and prayer is that he went to church or the chaplain and they took care of the rest of it for him. At that moment, I felt weak, shaky and out of control and Phillip was so out of it he excused himself to smoke a cigarette.
As time passes, though, this has become one of my greatest memories. It proves what I have known all along; that Eddie came for an amazing purpose. He was always going to come just as he was, flawed and fragile. Through his fragility he taught incredible strength. Through his flaws he exemplified God's perfection. Through his life at least one person came to salvation. He witnessed more to people in thirteen months of life than I had in nearly thirty years.
Incidentally, Eddie's brain had not been damaged. We went home a little over twenty-four hours later on Christmas Eve. He still showed an uncanny intelligence and wisdom far beyond his years (or year, rather) until his death in August 2007. He was a lot happier, though. I think it is because, in those moments that his heart was stopped, he spent a little time with Jesus. He knew what lie ahead of him and that he did not have to be afraid anymore. Right now, listening to "Midnight in Moscow" and feeling more happy than sad, I know I don't have to be afraid either. Life goes on at its wonderful, laid back pace (if you'll let it) and when it's over I get to be with my Savior. And my wonderful, magical little Jazzman.