Chandra's Journal
February 4, 2006
It feels like it’s been a long time since I’ve had some quiet time to sit down and write. I apologize to those of you who might feel like you’ve been in the dark on how Canon is doing. Basically, he’s doing great!
He had his first follow-up appointment in Houston on the 1st, so Drew took him down the day before and they got a hotel room. The transplant team was so impressed with his overall health that they told us we could go to Lubbock in March and April to check in with Dr. Higgins, and we don’t have to come back to Houston until May! [As a side note: Dr. Karpen left a message on Canon’s guestbook a couple weeks ago! We were very impressed that he would take the time to do that. He just signed it “Saul Karpen”, not “Dr.”. Drew mentioned that if he had M.D. and Ph.D. credentials that even his love notes to me would be signed, “Drew, M.D. Ph.D.”! Anyway…] His blood work looked good. They told us to lower his Prograf dose a little bit and they weaned his Prednisone dose again. Drew said that the trip in general was a huge success. Canon and Drew both slept all night in the hotel room, and Canon slept on both the flight down and back (thank you God!). He actually received compliments from fellow air travelers on how well he traveled! It’s too bad they weren’t the same passengers from our flight back home a month ago.
Last weekend the young professionals class at our church put on a dodgeball tournament for Canon. Drew had to work Saturday school all morning, so the boys and I went out to Amarillo College to watch for a while and let people know how thankful we were for their participation. I brought about 50 of our thank you cards with Canon’s picture on them to pass out to the players. It didn’t take but one look around to realize that we were going to be very short on thank you pictures! There were hundreds of people out there! And then someone mentioned that they had games going on in another gym as well! I was so surprised on many levels. First of all, I was so grateful to all these people who were supporting Canon’s campaign. Secondly, most of them were SERIOUS about their dodgeball. I had no idea it had become such a popular pastime! I thought it would be mostly people from our church playing, but there were all kinds of teams out there. Most of whom we did not know personally. There were teams from church, of course, but also from San Jacinto (Jackie Don was on a team with some other boys from the high school that I taught in the fourth grade!) and Randall High School. My friend Ginny’s husband put together a team from Bobby Duby Motors. I wish I knew specifics from some of the other teams, but all I know is that I had never seen most of these people in my life, but they were out there in full force for Canon! I couldn’t help but notice one guy; he was very tall and wore short shorts (like from the 70’s) and had a crazy afro hairdo! It was hysterical watching him out there playing. I would never have pointed this out (on the off-chance that he was for real) had I not seen him carrying the wig in his hand later on!
At the tournament I got to meet Alex McCausland and his parents. Alex is a young (third grade?) Amarilloan who also has a new liver courtesy of the Goss/Karpen transplant team at Texas Children’s Hospital. He had his transplant when he was four years old, under much different circumstances (he was in end-stage liver failure for three weeks before the transplant; they still don’t know what the cause was). Gina (his mom) had heard about Canon while we were in Houston and left a message on his website. From there we were able to get in touch. What a blessing. It was so neat to meet them and see a normal, healthy little boy who doesn’t even remember the whole ordeal! One of these days we’ll have to explain to Canon why we go to Houston every year…
The McIntoshes were on vacation this week, so Canon and Creed had substitute babysitters. Of course, Canon was in Houston Tuesday and Wednesday. Creed stayed with Teri and Cash Campbell while Canon was gone. And then Mama and Papa (my grandparents) came up from New Braunfels and stayed with both of them at home on Thursday and Friday. They both did great (is what I heard from Teri and Mama)!
It really is nice to know they are comfortable and enjoy being with other people that love them. I’m anxious for Canon to get to go back to Bible class at church and play with some of the kids his age some more. On the other hand, I’m psycho-nervous about all the germs. When we do get the green light, I’m tempted to send him in there with rubber gloves and a mask – and perhaps offer them to the other parents, too. (I’m just kidding.) Hopefully, in a month or two, the flu season will have passed and there won’t be as much crud going around.
I was remembering this week that it was at a Superbowl party last year that we told our friends we were expecting Creed! We were just fixing to say a prayer together before we ate and we were sharing things we needed to pray about. Drew said, “Would y’all be sure and pray for Chandra and Canon’s little brother or sister?” Of course everyone was so excited… and surprised, as were we! Hard to believe that was just a year ago, and already a year ago at the same. We couldn’t imagine what life would be like, and now Creed is such a perfect fit for our family. And he seems to be happy with us, too! His favorite thing to do is smile real big, grab our face with both hands, and pull us in for a big wet kiss! That and sit and watch Canon, the main source of entertainment around here. Of course, there are times that the ‘enchanted little brother’ spell is broken. I can imagine that, as an infant, there’s nothing much scarier than your 1 year-old brother coming at you with a nasal aspirator.
I don’t know what to do about the last weekend in February. On the 25th, there is this BIG catered party and dance for Canon in Abilene! It’s out at Joe Allen’s ranch, which is also where the rehearsal dinner for our wedding was. From what we’ve heard, people have really been working hard to make that night extra special. The entire city of Abilene has been so involved in supporting Canon from the beginning, and Drew and I feel like Canon should be there, if for no other reason, to show everybody that prayer works. However, Baby Blessing is the next day. That’s when our church will recognize all the babies born in 2005 and honor them with a special blessing. That will be Creed’s day! We have been talking about splitting up – Drew and Canon will go to Abilene and Creed and I will stay here. But it just doesn’t feel right to me. I don’t like not being together for special occasions like either one of those things! Is it possible we could all get to both?? I don’t know. It would mean driving back to Amarillo in the middle of the night, probably. I’m sure it could be done. It just might be the longest six hours of our lives! (Not really, of course.) I’m just afraid that if we’re not in Amarillo for Baby Blessing, that someday Creed will come over to me, put his arm around me and say, “Tell me about my Baby Blessing Day, Mom.” I know it sounds silly… but what if he does?! And what would that look like if they call his name and we’re not there?! I’m rambling now. Forgive me for the stream of consciousness. We’ll figure it out.
Funny the things I worry about now. If someone had told me when Amberly or Canon was going through the worst of things in the hospital that they were stressed out about two special events in the same weekend, I would have said, “You’re kidding me right?” I might have even said it out loud. It sometimes takes slow moments like this, just thinking and writing… to get some perspective. My storms have come and gone, for the most part. (Not to imply there won’t be more.) But what about those for whom storms are so frequent? Like Brad and Karen Thompson, who struggle daily with their daughter Hali’s health. How do they listen to people complain to them about normal things like ear infections or behavior problems? And I know they do. I’m sure that I’ve been one of those people at some point. I guess it’s just all about perspective. We have to understand how to put ourselves in someone else’s shoes and empathize with each other. Brad and Karen have a God-given gift to do that. I don’t know how hard they work at it, but it looks natural. That’s what I need to pray for - the ability to listen empathetically, no matter how big or small the issue seems from the outside. Because I do not have the market cornered on suffering. Far from it actually. And even if it appears to be nothing to those watching from far away, every storm is scary when you’re in the middle of it and you can’t see your way out.
Psalm 107:28-30
“Then they cried out to the Lord in their trouble, and He brought them out of their distress. He stilled the storm to a whisper, the waves of the sea were hushed. They were glad when it grew calm, and He guided them to their desired haven.”
Chandra Perkins