Chandra's Journal
January 8 & 10, 2006
January 8, 2006
My life was right where I left it here at home. The past week was a little bit surreal, just knowing where we had been, but mostly normal. But actually it’s better than normal because it’s our new normal! It’s the normal that we should have had all along, but didn’t. For example, in our pre-transplant normal life, I couldn’t really take Canon outside much because all he wanted to do was get down and crawl around. Over the summer his knees had permanent callouses on them because he would crawl on the sidewalk. I hated it and didn’t let him do it very often at all, but them sometimes he would just cry to get down and I would give in, wanting to just let him be “normal” sometimes. In our post-transplant normal, I don’t think there has been a day go by yet that we haven’t taken Canon outside (after his persistent cries of “’side! ‘side! ‘side!”) and marveled at how new the world seems to him now that he has the strength and control to walk.
In the pre-transplant normal life, I could barely get through a part-time day at school without tearing up with worry about Canon and the upcoming surgery. I felt like my few hours without the boys was tearing me apart. In my post-transplant normal life, I don’t feel anywhere near that level of anxiety! It actually surprises me that I don’t; I just assumed that we would come home and just need to be hovering over Canon all the time, watching for this and preventing that. I thought it would be months before he would be himself again. But in reality, he has more energy and life in him than he ever has! He hits the ground running (well, not literally… yet) every morning and doesn’t stop until his eyes close to sleep. Now, I actually enjoy the opportunity to go and spread some of that joy and life to the kids at school! I don’t worry about Canon while I’m gone because God has given me such a peace that Canon’s future is safe now. I still miss them of course! But that’s very different from the constant worrying. Before the transplant, I felt like it was some sort of mistake that I was not able to stay home all day with the boys, some sort of glitch in the system. But now, I actually feel like even our schedule was a part of God’s plan all along. He wants me to be a part of those lives at school, too. I think about all the people that have seen the difference in my demeanor before the miracle and then after and realize that I can be an ambassador there. I’ve heard several times from co-workers that I look completely different now! How strange, right? But I can understand why; I mean, I FEEL completely different, too! What a gift to be able to share what God is capable of –- changing lives entirely.
It’s only me and Creed at home tonight. Drew and Canon are in Lubbock for an appointment in the morning with Dr. Higgins. They will draw some blood and do the LFT to find out how well the liver is functioning. Also, Dr. Higgins needs to see him and get an idea what his post-transplant “baseline” looks like so that we will be quick to notice any changes that might indicate rejection (changes in his color, stool, appetite, abdominal size).
I have to admit it’s nice to have some alone time with Creed! I got the video camera out tonight and let him have some solo time. I think he realized that he was finally the star, and took full advantage of it by belting out some beautiful show tunes (that sound like high-pitched squeals to the untrained ear). He’s such a precious baby – gorgeous and good-tempered. I really don’t deserve the perfect miracle children I’ve been given.
We were able to go to church this morning! It was so great, even though I didn’t catch much of the service. We made it through the worship time and communion before we had been through every toy in the diaper bag and Canon made it very clear that he did not intend to sit still! Drew took him out for the first half and then I met him in the foyer with Creed and we switched for the second half of the sermon. I kept telling myself ‘it’s a phase, he’ll grow out of it…’ while I followed him down every hallway in the building. I would drift between feeling very embarrassed that he was being so ornery and then remembering how still and uninterested in life he was while lying in PICU and just being thankful that he was being ornery because it means that he feels good! Rhonda said that she could hear him saying “Mama! Mama! Mama!” during church and we were on the other side of the building in the balcony! Of course she just thought it was funny. And actually, one of our friends told Drew that we have the only child who can scream in church without making anybody upset! (I’m sure that’s not entirely true, but it’s a nice thought!) Truly everyone we saw was so supportive and excited to see Canon walking and doing so well. I didn’t realize how much of our church family had been following the updates online, but lots of people mentioned that they had checked on him frequently while we were gone. It’s a good feeling to be missed and prayed for. The singles class at church is having a dodgeball tournament in a couple of weeks for Canon’s campaign; that ought to be interesting!
January 10, 2006
I took Creed to Dr. Young’s office yesterday morning for his four month well-visit. Poor little guy… He spent the whole visit smiling at everyone he saw and squealing in delight and what does he get for all his effort? Four shots in the thighs. He really handled it pretty well, though. It just breaks my heart when Creed cries because before we hear a single sound you can see it all over his face – his bottom lip comes way out, his eyes squeeze shut real tight, his brow furrows, and then he revs up the “waaa”. It activates this undeniable ache in my arms to scoop him up and hold him close. The ‘mother magnet’.
Canon’s appointment went great yesterday! Dr. Higgins was very pleased with what he saw and his liver function tests came back smack in the middle of the normal range!! I feel like cheering “Go liver! Go liver! Give me an L! L! Give me a…” okay, I’ll stop. It’s just so wonderful to get good news after a doctor’s appointment! After the transplant team in Houston received the results of the lab work, they decided to lower his dose of Prednisone (the steroid). This is great thing because of all the medications the Prednisone seems to have the most side effects. Among those are puffiness in the face and flushed cheeks (which I’ve noticed occasionally) and mood swings which we deal with FREQUENTLY at our house lately! The hardest part is having to decide if we should punish a tantrum that might be beyond his control. Poor thing… even non-medicated toddlers have trouble controlling their emotions at this age.
Speaking of mood swings, Canon probably comes by them naturally! I seem to be the queen of them lately. Let me rephrase… when I have time to actually HAVE an emotion, there’s no telling what it might be. There’s so much to wrap my mind around still and I find myself wanting to cry or shout for joy sometimes in the same hour. I’m sitting here writing this knowing that it sounds like I’m bipolar now! (What do you know? That Psychology degree IS useful! Now I can diagnose all my “issues”! Wouldn’t that be nice?!) What’s really scary is that I get the most emotional in the car. It’s the music I listen to that does it to me! And the only time I have to listen to music is when I’m driving. I was in tears the other day because the song “Held” by Natalie Grant came on (a contemporary mix station actually) and that song gets me on so many levels. “To think that Providence would take a child from his mother while she prays…” That’s all I need to hear and I’m immediately back in that hospital room holding Amberly while they disconnect all the machines… anyway. “This is what it means to be held, How it feels when the sacred is torn from your life and you survive. This is what it is to be held, And to know that the promise was when everything fell, we’d be held.” What other word could describe what we have been for the past five years? If nothing else, held. I’ll go into this later, but I heard from Jordan’s mom that they played that song at his memorial service. I heard the song the day after I received her email and as I was driving down the road, I was trying to blink away tears, thinking about Jordan, imagining God holding him now.
On another occasion in the car, after I had picked up Canon and Creed from Rhonda’s house, we were driving home and “How Great is Our God” by Chris Tomlin came on. It’s a simple praise, but somehow it has such an effect on me. My chin picks up, my eyes squeeze shut, and my hands reach up to the sky… Don’t worry, I do restrain myself while driving! I just want to get out and spin in circles and shout “How great is our God!!!” I did turn the volume way up, raised ONE hand, and was singing very loud the other day. I turned around and Canon was just staring at me like he wasn’t sure whether to laugh or cry! Then I heard him singing with me, “Great… Great… Great…” That made me want to cry all over again! Am I crazy?
As I alluded to earlier, Jordan’s mom replied to an email I sent her on Christmas Eve. I just felt I had to reach out somehow. When I saw her reply a few days ago, I hung on every word. She said that she wants us to know all about Jordan and what an amazing child he was. She said he wanted to try everything. I was nodding as I read because for whatever reason I have already pictured him that way. I can imagine that he was very inquisitive and just had a natural zest for life. I picture him as the kind of kid that would stop in the middle of seeing how fast he could run from one fence to another to give his mom a little yellow flower that caught his eye. We have added “Thank you for Jordan and bless his family,” to Canon’s nightly prayer. We were so moved when Drew heard him say “Jordan” in his prayer for the first time. Have you ever felt such an intense connection to someone you’ve never met? Like every other relationship, this one will take time. But unlike every other relationship, we have a bond of common experiences that can only be described as divine. In my prayers, I ask God to help us teach Canon about Jordan in a way that will make him love God even more and have a deeper insight into the heart of His people.
Chandra