Chandra's Journal


December 20, 2005

Canon had surgery yesterday morning to remove the central line from his chest. It was strange. It was just me and him; Drew stayed home so we wouldn’t have to get Creed out so early (we had to check him in at 6:00 AM). They got him in right when they said they would, 7:30 sharp; the transplant timing was so hazy until the moment they took him away. We waited in the same surgery holding room, but this time I wasn’t the teary-eyed mess that wouldn’t let go of her baby; I laughed with Canon as we put together the Mr. Potato Head and got a kick out of how entranced he was with another little girl riding around in her little red car (and I see that a man’s attraction to women and cars starts very early). I walked with the anesthesiologist down the same hallway, only this time they hadn’t given him anything early on to calm him down so he was not happy when they went through the doors and turned the corner without me. That was really hard. Especially being by myself. I waited for about 45 minutes before the surgeon (not the same one that did the transplant) came out and let me know that everything had gone well. Then when they called me to meet him in the recovery room I arrived to find him awake and drinking a cup of apple juice! When I picked him up to sit with me for a while, he looked up at the same monitor that we watched for a week after the transplant and said, “Movie please?” Wow. Quite a different experience!

So, he is now without any outside apparatuses (I guess that’s a word, it’s not underlined in red anyway). He looks awesome, totally normal, until we take his shirt off. Of course there’s the transplant scar, and now there is one stitch where his central line was, and significant bruising going up and out from that spot. All the steri-strips have fallen off now, so we can see the entire scar now. I’m actually not sure that it can be called a ‘scar’ yet; I mean, doesn’t it have to be entirely healed up before it’s a scar? There’s still several spots that are just scabbed. Especially right in the middle where the vertical line meets the horizontal line; it’s just a quarter-inch triangle scab. Tonight in the bath, for the first time, I noticed Canon looking down at his tummy, studying it like he was trying to remember if it had always looked like that. He touched parts of his scar, carefully. I had my hand ready to pull his away if he started pulling or itching at it at all. But he didn’t. He just ran his fingers over it gingerly. I told him, “Be careful Canon. That’s where your new liver is and we need to take good care of it.” I wish I could have read his mind at that moment.

It is absolutely incredible how quickly he has started walking! It seems like the day Drew arrived back in Houston, Canon felt like he was ready to try something new. For about 15 minutes he walked from Drew to me and then back to Drew while we were about six feet apart. He had the hugest smile all over his face! And now it seems his preferred method for getting across a room. I mean, I could just go on and on about how awesome it is to see him just stand up and walk! It really is amazing. I guess we’ll never know for sure what the catalyst was for this new skill, so late in coming, but it seems like another miracle to me! Only three weeks removed from his liver transplant and he wants to pick it all up and walk now. I guess I have grown accustomed to Canon not walking, because I just flip out every time I see him doing it now. “Oh Canon! Look at you! I’m so proud of you! You’re doing it!” I wonder how long I will be so impressed. Will I follow him into first grade patting him on the back for walking and holding his books at the same time? Maybe I will… And I don’t care!

Changing gears dramatically, today I caught the first part of Dr. Phil on TV. The theme of the episode was Christmas Miracles. The first segment they did was about a girl named Gwen who was born on the same night that her father died in a fire. Then almost two years later, her mother was told that she had a very severe case of Cystic Fibrosis and might not live to her fifth birthday. Her mother tearfully recalled asking herself, “What have I done, that my husband was taken away so horribly and now my daughter is dying?” That statement resonated within me as I remember not so very long ago digging deep into my past looking for all my sins that could have added up together to possibly make sense of the hand I was dealt. Still handling that. Anyway, they showed picture after picture of this beautiful girl in the hospital constantly, but beating the odds she was given. And then this past summer (she’s 24 now) they received a call for a double lung transplant. They showed a picture of them literally carrying her and the oxygen she had to be on and carefully laying her in the backseat of the car. Her mother said that she was amazed to see her daughter after the transplant because she was pink; she had always been so gray before. They didn’t really go into the surgery, but rather the fact that she fell in love with the guy across the hall (27) going through the same transplant for the same disease. They were on the show together, engaged and looking healthy and handsome! What a story. Her mother talked about how on this earth we are supposed to be kind and share joy and life with others, but the real legacy is giving a part of you to live on as a legacy for someone else. They also had a guy in the audience representing the California regional organ donation something-or-other and he mentioned www.donatelife.org. I realized that there are so many people out there with amazing life-changing stories about organ donation. In several of the pictures, I saw the green bracelets that have been sold everywhere for Canon! I feel like it’s our story; it’s Canon’s story, rather. But there are so many out there who share the same passion because of a similar miracle. I really wanted to write the Dr. Phil show and share our story. I still might.

It seems that whenever I’m going through something dramatic in my life, all of the sudden it’s all over the TV. Before Amberly was born, I don’t ever recall seeing VERY premature babies on TV shows, but now it seems that every other week Drew and I will see a heart-wrenching preview for a show featuring these micro-preemies and asking “Will they make it?” We always make a note to skip those shows; it’s just too real. . Well, one of those medical dramas happened to be on TV in the background at the apartment sometime this past week and I just barely heard “…heart transplant…” and began to pay closer attention. On the show a little boy was in need of heart transplant, but was saying he didn’t want it. He had had one already as a baby, and that one was not growing with him, so he needed a new one. He received the transplant, but as he was recovering he told his mom in anger that he didn’t want it. He said, “You told me that Santa gave me this heart, but that’s not true. It didn’t come from Santa; someone had to die for me to get this heart. That’s what you’ve been praying for, isn’t it Mom? For someone to die? Two people had to die so I could live. I’m not better than them. I don’t deserve this heart.” At that point, his heart stopped and they had to rush in and shock it to begin beating again. One doctor said that if the boy rejected the heart emotionally, it was only a matter of time before his body would too. Tears welled up in my eyes as I knew exactly what the boy was saying. And I realized that I didn’t have the answer. How will I handle this issue when it is one that not only I struggle with, but when he understands what happened, Canon will too. What do I tell him he runs his fingers over his scar one day and he feels the same guilt over the price that was paid to live out the rest of his life? I realize now that is what I was thinking about when I was baptized. Not about organ donation, but about what Jesus went through on the cross, so that I could live forever. What Drew said in his journal made these vague feelings more clear for me. It’s truly amazing that God put this on both of our hearts this week. So, what do I tell Canon? Maybe like the doctor on the show told the little boy, to live to do something positive with the gift he’d been given. I will tell Canon that we all have an obligation to make our life count because of the sacrifice that has been made for us. And that if he will remain cognizant always of the gift that he was given personally here on earth, perhaps that will help him understand Jesus and His sacrifice better than most.

Chandra