Chandra's Journal

September 19, 2005…

We’re baa…aack! My trip to Austin and back with Canon and Creed went very well. We all had a lot of fun! There’s so much to tell - let me see if I can break down the highlights…

7th – appt. with Dr. Higgins in Lubbock (more on that in a bit), and got to go to church with Melanie, Paul, and Rylan (my sister and family) at Sunset. Canon was actually introduced in the high school and college classes and I was able to thank them for all their support.
8th – spent the morning playing with Melanie’s pre-school class at Mother’s Day Out then traveled to Abilene where we had some down time playing with Drew’s parents, MamaLu and Daddo.
9th – drove to Austin and recovered from the drive to Austin on the floor in our living room while Nana and Papa introduced the “Nana’s house toys” to Canon and caught up with Creed.
10th – Creed, Mom, and I shopped some fabulous baby boutiques in Austin before lunch. Bradley and Danley’s (my twin 17 year old brothers) girlfriends (Taryn and Emily, respectively) came to spend the day with us and were a joy to be with. After a naptime game of Taboo with Mom, Bradley, and Taryn, we all went to show Canon the cows (statues) at the Arboretum and Dad made a wonderful brisket dinner.
11th – church in Leander where I grew up, always great to be back! I also got to thank them all for their help with Canon’s fund. Dinner with one my best friends and her husband and girls while Mom and Dad babysat.
12th – WOW- lunch and visiting at my mom and brother’s school, Brentwood Christian, then drove to San Antonio to see my cousin and play with 2nd cousins, then drove to New Braunfels and supper with my grandparents, two uncles, two aunts, three cousins, one cousin-in-law, one second cousin, and a partridge in a pear tree. We had a blast!
13th – one word… barbecue! My mom brought me Rudy’s for lunch, and Drew’s parents took us to Joe Allen’s for dinner in Abilene! That will probably never happen again, so I’m still trying to savor that day!
14th – Canon was the surprise special guest at an assembly at Fannin Elementary, where MamaLu teaches first grade and the school had been (still are) collecting “Cans for Canon”. The students were so excited to see him in person and I was overwhelmed with gratitude for the children and the faculty. As a neat extra, it was on the news in Abilene that night! Also, it was good to eat and fellowship with the church at Hillcrest – awesome people!
15th – Back to Lubbock where we took the boys to the park and one of Paul and Melanie’s friends completed some video footage he’s using to put together a clip of Canon’s story for us to send out.
16th – Took Canon, Creed, and Rylan to have their picture made at Sears. We were lucky to get a few good shots! That afternoon, we drove back to Amarillo where there was a letter waiting for me in the house letting me know that the kids were taken care of and we were going out for a nice dinner that night! It was the longest Drew and I had been apart since we’ve been married and it was great for all of us to see him again!

I have one more week to stay home all day with Canon and Creed before I have to go back to school on Monday. Thanks to the tremendous effort of the administration both at my school and on the district level, I’m able to work in a part-time position, from 11:00 – 4:00. This will be a blessing in so many ways. First and most obviously, I get more time with the boys. And because I don’t have to be there until 11:00, I’ll be able to let Canon sleep until 8:30 or 9:00 like he’s used to and not have to wake him up and rush everybody through the morning. Also, the position I’m returning to is not a homeroom classroom position like I’ve always been. It’s more of a traveling Reading tutor position. This means that when we get called to go to Houston for the transplant, they won’t have to find a sub right away, and I won’t be leaving a class full of fourth graders right before their big test or anything. I’m so grateful to my principal, Mr. Word, and my assistant principals, Mrs. Huseman and Mrs. Cobb for caring so much about making that work for me. I’m going to miss the boys terribly for those five hours, and I’m sure I’ll be wiping away tears when I get to school for a while, just like when I first had to leave Canon. But I’m trying very hard to concentrate on the positives: Number one – they have the absolute best babysitter on the planet! Rhonda McIntosh has loved Canon like one of her own sons and already loves Creed, too. Her day is plenty full home-schooling her fourth and second grade boys, and she still wanted to do this for us! She has given and given and given and I only hope for a day when I can even begin to repay all the love she has shown us. Number two (positive thing) – I do love teaching. I love that those kids respond to me showing them that I care about them. I love feeling like I made a difference in their life. Even the hard ones, most of the time, eventually allow me in and connect with me… and that’s a great thing.

At Canon’s appointment in Lubbock, Dr. Higgins, the GI, just checked the size of his liver and commented that it didn’t seem significantly larger, but agreed with Dr. Young that it is pretty hard. When I asked what he thought we should expect at his next appointment in Houston, October 12th, he said that he thinks Canon is ready to be listed for transplant. When we came back through Lubbock, I called Dr. Higgins’s office to check the blood work results. His nurse reported that both numbers, the ALT and the AST, were elevated (not good). She told me that Dr. Higgins had already called Houston and gave the results to Dr. Karpen, who also said he thought it was time to go on the list when we visit in October. I have been so preoccupied with those words that I feel like I can barely carry on a conversation lately. For the past six months, ever since the word ‘transplant’ was spoken, though I comprehended the facts and have reacted emotionally many times, I don’t believe I have yet internalized what is actually happening. I have even thought many times concerning the fundraising effort, ‘Oh that’s so nice, but we’re not REALLY going to need that.’ I don’t know what I thought was going to happen. Maybe I thought God would heal him miraculously (You still have time, God). Maybe I thought we could just live forever in the happy moments after Creed was born when Canon began to realize that we are family. Maybe I thought the world would end before we would have to go through this. I don’t know. My friend Ginger reminded me on the phone yesterday that I prayed fervently that God would let us concentrate on a healthy pregnancy and delivery and making sure Creed was okay before we had to worry about the transplant. When I remembered how many times I prayed that, I began to realize that God heard me and showed us mercy. But I’m still not ready. This is so hard to explain – I need my son to be okay, to be well; but I don’t know how to handle the means to the end. I’m so scared. I don’t know what I fear more, watching Canon experience pain or failing to be as strong as he needs me to be.

Lord, as I prayed over Canon tonight, I looked at him lying on his side and noticed the contrast of his thin arms and legs and his distended belly. You saw the tears immediately gush from my eyes as I became overwhelmed at what we have to do. God, Canon still has no idea what’s coming, but Drew and I do. And it’s all I can think about. I just want to hide somewhere until it’s over. Not physically, because I know I have to be there for Canon, for everybody. But can’t you just take us under your wing and give us some kind of supernatural anesthetizing peace? Just put us all to sleep and let us rest with you, just breathing YOU in and out, until this is over. I know you’re listening and you know what I mean.

“Hear, O Lord, my righteous plea; listen to my cry… I call on you, O God, for you will answer me… Show me the wonder of your great love, you who save by your right hand those who take refuge in you from their foes… hide me in the shadow of your wings… I will see your face; when I awake, I will be satisfied with seeing your likeness.”
Excerpts from Psalms 17
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