Chandra's Journal

November 1, 2005…

Okay, go ahead and grab a drink and sit down because I guarantee you this one will be long.

First, I have to record some “diary” type entries more for myself than anything. Lately Canon is seriously addicted to Finding Nemo. We find Nemo probably once a day at our house! True, as his parents we have to be fostering this addiction; and I would feel a little guilty if he hadn’t picked up a second language. He is now fluent in “whale”! (His favorite part is when Dori is speaking “whale”.) He likes to say, “Heeelllllloooooo, Daaaaadddyyyyyy.” Probably a close second favorite is when the aquarium fish are initiating Nemo into the tank. They chant, “Ah, ooh, ah, ooh, ah, oh, oh, oh,” and Canon chants right along with them. It’s so funny! I’m now hunting for The Lion King because I think he would really like that one, too. And, selfishly, I’m getting a little burnt out on Nemo! I tried Bambi the other day and he wasn’t quite as into that one. But it was precious when he was in my lap and we were talking about the deer. We really don’t see many deer in our books that we read, so I was teaching him the word and saying, “See the baby deer? And there’s the mama deer and the daddy deer.” Canon reached for my hand and put it in his hands and said, “Dear God…” I wanted to laugh and cry at the same time! I just giggled to myself and we went ahead and said our prayer together.

He has been in a “stage” (I hope) of getting very easily frustrated and very attached to me for a few weeks now. Going to church is one of the things I have always looked forward to, but now it’s gotten to where it’s just SO HARD! Yesterday we made it about fifteen minutes in the pew as a family. Then I had to take Creed out to feed him, and Drew had to take Canon out about ten minutes later because he just wouldn’t be still and quiet. After I fed Creed, I traded with Drew and followed Canon crawling up and down the halls. He didn’t want to be picked up, and he really didn’t want to talk to or smile at anyone. People would come up and want to love on him and he would push their face away! I don’t know what to do. Instinctively, I make excuses for him like ‘it’s just his age’ or worse, ‘his liver is making him not feel good’. But then I think there’s got to be a line where behavior becomes unacceptable no matter what. Then what should I do?? This is my perpetual parenting dilemma.

Creed is really doing awesome! He’s nowhere near the scheduled baby that Canon was (out of necessity or out of laziness, I don’t know), but he’s okay with that. He sometimes struggles to go to sleep for a nap during the day, but he sleeps about ten hours straight at night. The thing that continues to blow us away is his strength. He can bear almost all of his weight on my lap when I’m holding him under his arms. I know now that that is totally normal, but after not seeing any weight-bearing from Canon until about a year old, Creed just seems like SuperBaby. (Okay, Canon, if you read this twenty years from now, don’t take it the wrong way! You have come a LONG way in the last six months and we could not be any prouder of you!) Creed is also big on giving out smiles now. His smiles are so contagious and beautiful that I would dare anyone to try to look him in the eye and not smile back. It’s impossible!

I find myself thinking about Amberly a lot when I’m with Creed. I don’t know if maybe something about Creed resembles her to me, or what. But there have been many times that our eyes lock and I suddenly have a thought or memory of her. Yesterday, when I took Creed to a room off the auditorium where I could feed him, I was singing the songs that they were singing in the worship service. (Luckily we were alone, so no one else was subjected to my singing!) They began to sing “There’s A Stirring” and I found myself unable to sing along. There are a few songs that I just can’t sing out loud anymore because they were songs we chose for Amberly’s funeral. Something about these songs is sacred to me now and so when I do hear them, I just want to close my eyes and think about her. So, like every other time, I did that. The words were coming from my heart, not my mouth…

“There’s a stirring deep within me.
Could it be my time has come,
when I’ll see my gracious Savior face to face when all is done?
Is that His voice I am hearing?
'Come away my precious one.'
Is He calling me? Is He calling me?
I will rise up,
rise up, and bow down,
and lay my crown at His wounded feet.”

For the last four years I have closed my eyes at these words and I have seen the same image in the darkness of my mind every time. I have treasured this vision deeply and I almost don’t want to share it. But I will. At first it was just me and Drew. Then it was me, Drew, and Canon. And now it’s all four of us – I’m holding Creed and Drew is holding Canon. We’re walking up a hill hearing the music, “I will rise up, rise up…” Then we see Him, Jesus, at the top of the hill walking down toward us. It’s bright and sunny and we’re squinting trying to see what He’s carrying. It’s a little girl, hugging His neck; we can only see the back of her head. Then He says something to her, points to us, and she turns around to look at us. It’s Amberly. She smiles at us and holds out her arms to me. We all sit on the ground and hold each other. Yesterday, when I was holding Creed, my eyes welled up with tears and my heart swollen with loss, I opened my eyes for a second to look down at Creed and he had the biggest smile on his face. I was led to wonder if he sees the same image and is also waiting for that day.

Okay, I have to change gears before I get too carried away with that (maybe I already did).

Speaking of gears… Tour de Canon was a huge success! It went off without a hitch (none that we could see anyway) and raised about $12,000! More than any single fundraising event thus far! I will forever remember all the work that Steve Stovall put into this. And Melanie and Paul – they all put their heart and soul into that ride. This being my first bike ride event that I have ever been to, I was struck by many things. When we first arrived, I just saw bicycles, bicycles, bicycles everywhere! There were actually about 35 riders there. The second thing that struck me was how many volunteers there were helping out. I think the whole AIM class from Lubbock was there helping. And as two of the girls were pointing out where to park, they showed us their T-shirts that they had stayed up all night making. They had a different picture of Canon put on every shirt! Even my nephew, Rylan, had one that said “Canon’s Cuz”! They had written the website address and Glycogen Storage Disease on them. As we walked inside the building, we noticed these shirts were everywhere! It seemed like everyone we met had a picture of our son on their shirt! Before the race started, my friend Jeri Farris (who came down from Amarillo with her husband, Tom, to help out ?) suggested that we go introduce Canon to the riders who were milling around on their bikes, warming up. So thinking we might have to chase some of them down to meet them, we started walking toward them. I was taken aback when I realized, they were coming to us. We were suddenly surrounded by people on bicycles wanting to see Canon, to take a picture with him, to tell us that they are praying for him. I won’t remember everyone we met, but I was especially touched by a man who came down from Plainview to ride the longest route. (Meaning that he drove an hour to Lubbock to bike back to Plainview, turn around and bike back to Lubbock and then drive back home to Plainview!) Gomez is his last name, I think. There was an article about him and the ride in the Plainview paper last week that I really liked! There were a couple of men from Lubbock, friends of Steve Stovall who organized the whole shebang, who were especially kind to Canon. I noticed a message on the guestbook from Keith; he was one of them. There was another guy from Lubbock, a young guy, James, who made a point to come and meet us to tell us that his bike club in Midland that he rides with was already committed to another ride this year on the same day, but all want to come ride the Tour de Canon next year. Then there was Sterling Stovall, the son of the tour coordinator. I want to say he’s 13, but I’ll have to check that. He rode the 40 mile route. That’s 40 miles! On a bike! The longest he had ever ridden before was less than 20. His mom told me that she suggested to him that he sign up for the 20 mile ride instead, but that he insisted, “I’m riding 40 miles… for Canon.” My heart still hurts remembering how winded he looked coming in from his ride. That’s a strong, honorable man… just waiting to emerge from a boy. There were two girls (?) my age that I really related to – haven’t ridden a bike in years, but we have a mutual friend in Lubbock, Aimee Bunting, and they wanted to come out and show their support for us. There was a dad and his seven year-old daughter riding a double-bike (I don’t know what the right name for it is! It had three wheels and two seats!). That was really neat! And, if I’m not mistaken, while they were raising money to enter the ride, they solicited the girl who delivered a pizza to their house! WHO, in turn, happened to be a student at Texas Tech, Brittany. Well she was inspired to call the Texas Tech newspaper and suggest they do a story on Canon. A couple days later, a writer named Andrew called and interviewed us and published a story about Canon in their paper the next day! God is amazing. Let’s see… Oh! I also wanted to tell you about Southwest Airlines. They donated four roundtrip tickets for the drawing held after the tour. AND the president of Southwest Airlines, Colleen Barrett, sent a letter and personal check for $500 for Canon! We were very overwhelmed by that gift from a corporate woman who very easily could have stopped with the roundtrip tickets, but she mentioned the fact that she’s a mom, too, and… well, if you’re a mom you know what I mean.

So many other events have gone on around us and I wish we could have been present for all of them. I know that Drew’s high school class was very generous to Canon (contributing both money and prayer) at their 10 year reunion last weekend. I really wanted to go meet people that I had heard all these great stories about, but I guess I’ll have to wait until the 20th. The school district in Abilene has been amazing through all this! I know that Drew’s parents, Charlie and Linda were busy every night last week going to events for Canon… Cuts for Canon made $250 on Tuesday, the Lincoln Middle School Skate Night made $500 on Thursday, and the student councils from Abilene High and Cooper presented them with donations for Canon at Shotwell Stadium in the pregame activities of the BIG GAME Friday night (Drew wants me to add a “Way to go Eagles!” right here. ?)

Brentwood Christian School in Austin, where my mom teaches fourth grade and my brothers are seniors, did a lot of fundraising over the last couple of weeks selling bracelets and asking for donations. The picture on Canon’s home page of the hands with all the bracelets are some of Canon’s Brentwood supporters. The total I heard today from my mom was $7120.00! I can’t even explain how overwhelmed we are by our extended “family”. That money didn’t come from people who really know me or Canon. It came from people who really know my mom and Brad and Dan and because of their love for them have extended that same love to us. It’s a humbling example of the love of the Father. By our association to His Son, we are saved. We are adopted into His family. I feel like we have been adopted into so many earthly families already. I already feel like I really need to send out about 10,000 Christmas cards! There are these amazing kids, like Walker, who emptied his own savings accounts to help my little boy, knowing that he wouldn’t have any leftover for the school fall festival. We will be forever grateful to all the children who have made such a huge difference.

This morning Drew and I took Canon and Creed to the high school chapel service at San Jacinto Christian Academy, where we taught when we first moved to Amarillo more than five years ago. It was so great to see the faces of the kids, parents, and teachers who prayed us through so much during those couple of years around Amberly. Now they are reaching out to us again to help Canon. What servant spirits these young people have. They continue to be an inspiration to me and Drew.

On Monday Drew took Canon to his appointment in Lubbock with Dr. Higgins, where he heard more of the same ol’ thing. His liver is not significantly larger but it is getting harder. The portal vein is under pressure to deliver blood to the liver and so his veins are very evident under his skin. Drew also said we need to be watching closely because he will most likely begin to bruise more easily. The routine lab tests were done to test liver function. The results were about the same as they have been. We have two more weeks to wait before they’re sure the chicken pox virus is good and dead. At that point we’re back to expecting a call as soon as they find a liver that looks like it might work.

Okay, I’m going to bite the bullet here and go ahead and talk about something more personal, if you can imagine. Over the last couple of weeks, Drew and I have really awakened to the realization that our marriage is going to take perhaps more work than the average marriage, which takes a lot anyway. Here we are, really only about six years removed from our honeymoon, and it’s already difficult to remember what is was like to just wake up and be happy together, not worrying about all of our responsibilities and feeling behind in the game because of the tragedy and drama that has seemed to surround our family. In all our prayers for Canon, Creed, finances, jobs, etc., we have forgotten to pray for each other. We are both deeply committed to each other and the boys, but we know that Satan will find the times when we are most vulnerable to attack our unity. Thank God that we are figuring this out now, so that our eyes are more open to the snares and we can spend our energy protecting each other. You don’t have to have much experience in this world to know that there are lots of people out there who take marriage very lightly. In our current circumstances, we know that the temptation is to consider the “greener grass” on the other side of the fence. But lately God has reminded us that He gave us to each other as a blessing for both of us and it is our responsibility and our privilege to treasure that blessing. I am very lucky to be married to Drew for many reasons. God gave me Drew as a perfect compliment. When I’m crazy, he’s calm. When I’m emotional, he listens. When I’m scared, he reassures. When I’m confused, he teaches. When I’m in doubt, he’s confident. He keeps us all sane, really. I’d be a basket case if I were married to someone who didn’t continually ground me and keep my worries in check. I know that he doesn’t get to play with Canon and Creed as much as I do, and I can tell that he tries to catch up. For example, it takes me about five minutes to say a prayer with Canon, rock for a minute and put him to bed. When Drew puts Canon to bed, I sometimes realize he’s been in there 20 minutes. He’ll come out and hug me and say “It’s just feels so good to hold him; I didn’t want to let him go.” That’s how we have felt about each other the past few weeks. We’ve recently realized just how scary our life would be if we didn’t have each other. If you are in the habit of praying for Canon, please include our marriage in your prayers.

Well, I knew I had a lot to write about, and seeing as how I’m now on my seventh page, I think I’ll wrap it up.

Chandra

May the words of my mouth and the meditation of my heart be pleasing in your sight, Lord.