Chandra's Journal
December 7, 2005
1:50 PM
Our clinic visit went well this morning! All four of us got up early and Linda and Creed dropped Canon and me off at the hospital and they went to Target. We had to wake both of them up earlier than they are used to, and we all know how that just stinks. But he did great! They didn’t really do much, just drew some blood from his central line and Dr. Goss, the surgeon, came in to take a look at his tummy and chat for a minute about how I felt like he was feeling. I really think he’s doing great, other than a couple of episodes of stomach cramping or something like that. He’ll stop playing and just hold his breath for a second and then cry and lay down and hold his tummy. But they expect that that will go away soon. I’m supposed to call later today and check on the results from his lab work.
I’m so proud of Canon and how brave he is being. While I was wheeling him around the hospital this morning in the stroller, I found myself wanting to shout out, “Excuse me everyone! This is my son, Canon, and he has a new liver!” Then, of course, everybody would cheer out loud! That’s not too much to ask, is it? Already, I’ve come pretty close. Like in the elevator this morning, there were several people in there when we walked in and one of them said, “How’s it goin’?” You could tell it was one of those times when you’re just supposed to say, “Fine, thanks,” and let people go on with their lives, but I just didn’t feel like it. I said, “Great! We got a healthy new liver nine days ago!” Everyone in the elevator turned and looked at me, then at Canon, and started talking about how great he looks and congratulating us. That’s more l! ike it! I should design a T-shirt for him that says, “Ask me about my new liver!”
Linda bought a Christmas tree for the apartment today! We’re waiting for Canon to wake up before we put lights and ornaments on it. Canon and Creed will love it!
Been thinking about Amberly a lot, still. On the first Mother’s Day after we lost Amberly, my friends Jere, Jennifer, and Teri got me a bracelet with her name on it. I treasure it and still wear it often. Well, for our anniversary, Drew took that bracelet to our friend’s jewelry store in Amarillo, JWhitney, and had her add a strand for Canon and one for Creed! It’s truly priceless.
I still don’t believe that God took her away from us. I still don’t believe that that was what he intended to happen. But I think that because we live in a fallen world that is far from the perfection of Eden, death and sickness and heartache are part of our lives. I have not bought into some of the common reasons people come up with… “God just wanted her to be with him… He was rescuing her from something terrible down the road… He knew you were strong enough to handle this…” The list of what people will come up with to try to explain God truly goes on and on. I still refuse to believe that it was God that “took” her away. I choose to believe that it was Satan. Now, why God didn’t stop him, I don’t know. I just… don’t know. And further, I have seen no good outcome, no real purpose, no reasonable justification for her death. Why did God let it happen? He would’ve made a! whole lot better impression on people if he had just answered all of our prayers, against all odds, right? I mean, if I were Him… you know. But, a few days ago I read a message on the guestbook from someone in our donor’s family. They said that being able to see Canon and know our family has helped them so much with their loss, and the fact that we have been where they are, too, makes it even more meaningful. Wow. All at once it was like God was saying to me, “See Chandra, even though I didn’t want it to happen, I can still use it.” I don’t believe he wanted our donor’s family to have to go through this either, but even though it’s not what he wanted, he can use it to change lives, and has. I’m just so thankful for that message, and all of the messages from his family, because it helps me to believe that God can show his power and love for his people in even the most devastating situations in th! is imperfect world. If my words mean a little bit more to this mother, father, and the rest of our angel’s family, it gives reassurance that maybe we didn’t lose her for nothing.
10:00 PM
I had one of those moments tonight when everything was going wrong. I had nursed Creed and ran out of milk way too soon, so I had to make him a bottle. In my frustration and guilt over not being able to nurse him enough, I was squeezing the bottle liner a little bit too hard (to get all the air out) and it burst all over me and the kitchen floor. My guilt over not giving enough for Creed was all over me, like the milk; I could feel all my muscles tightening, already wanting to kick something, you know? I took a deep breath and got another bottle of milk out of the freezer to thaw it under hot water. I put the bottle under the running water and the water caught the lid just right and it splashed up on my face. Okay... I'm under control... I'm under control. I finished the bottle and set it on the counter, then I got the mop out of the closet to clean the floor. It has one of those mop sponges that folds in half when you pull the lever to squeeze it. (It came with the! apartment.) I put it under the water, squeezed it, and the sponge just plops right off into the sink. So now I have to put my hands on this gross mop, put it back on the handle and try to squeeze it again. Of course, it falls off again. Three times I went through this!! I know this is a little thing, but it was like... the infamous straw, you know? I mopped vigorously, trying to take out frustration on the tile, I guess. The dumb spot was still sticky.
Plus, I didn't mention earlier about another thing they mentioned at Canon's appointment this morning. They told me we have to get the tape marks off of him; it's very important because his skin can break down under the adhesive. When you're only 31 inches long and they've put tape on his face, all over his chest, tummy, side, and leg - that's a lot of tape marks. And their tape hurts! I had just decided previously that I'm going to bathe him every night, but I'm not going to scrub him with steel wool or anything because I didn't want to hurt him. But tonight I thought that I had better work harder to get it off. So I laid him down on his back in about two inches of water (because he still can't get his incision wet), pulled my pants legs up over my knees and knelt down in the tub, and got after him with alcohol and fingernails. I'm telling you, it was torture! I only did it for maybe three minutes. Because I just feel like the poor baby has been through enough. I did get some more of it off, though.
I also didn't say anything about the medicine mistake I made on Monday night. Most of his medicines are supposed to be taken morning and night, but there a few that he takes only in the morning. Well, Monday was the first night that he was home and we were completely responsible for the meds. I was so nervous that I accidently gave him two medicines that night that he had already had that morning and was not supposed to get again - baby aspirin and valcyte (the two pills we have to crush up). After Drew realized what I did, I freaked out. He was calm and kept telling me not to worry, just to call the nurse in the morning and let her know. The nurse told us yesterday morning to skip yesterday's dose and get back on schedule today. I just still can't get over the fact that I have ONE important job to do and I screwed it up on the first day! So now everytime medicine time rolls around again, I feel my heart beating faster and my head starts hurting. It's MY job; the success of this new liver depends on the accuracy of these medications and I messed it up. Then today I was supposed to call Jaymee if I hadn't heard from her by 3:30 about Canon's blood work. Well, Drew called at 4:45 and said that Jaymee had called his cell phone because I hadn't called her and she couldn't get me on my phone. I had just forgotten to call; I just got busy with the day and forgot. There's no excuse for that! Why can't I get my act together??!! I feel like I'm really just a little kid trying to do a grown-up job.
Canon did venture around the apartment a little bit more today. He has been content to just stay in the living room and maybe go get a toy that's within a four foot radius. But he crawled into the other rooms today and looked around, and into the kitchen where he pulled up on the dishwasher and started pressing buttons - that's my boy.
Maybe tomorrow I'll get everything right.
Chandra