Chandra's Journal
December 2, 2005
11:45 PM
We’re finally out of PICU!! Don’t get me wrong; the care was great down there, but there IS something “magical” about this room up on the transplant unit. We really were becoming concerned that he was not still not wanting to play or move around hardly at all. Last night was the first time I had seen him interested in watching ME play with some toys in front of him. He would push the button on this cool light stick Mom got him and kinda pull at the fingers of his Old McDonald glove I had on. But I wasn’t really seeing any spark in him. I mean, the doctors can tell me he’s doing great all they want, but I need to see him really be himself before I feel like everything’s going okay.
Even at our meeting today with Jaymee she mentioned that she was becoming concerned that he was still so ‘dopey’, just wanting to lie motionless in bed and barely stay awake. The fluid they had been giving him wasn’t moving through his body efficiently, so it just pooled in his bottom and thighs. She said that we have to get him out of bed more; she suggested a minimum of four times a day. It seems so hard to drag him out of bed knowing what he just had done and seeing (and hearing) very clearly that he does not want to be messed with. But she told us he will really start to get sore if he doesn’t start moving more. Then she repeated what we have heard several times, that he will start making vast improvements once we got him up to the 12th floor. Every time I heard that from somebody I just thought ‘It’s just a room. What’s the big deal?’
We saw glimpses of him today before he moved up here. This morning he smiled at Linda while she was playing with him! Then later when Mom was in there, he held the light stick and made his airplane fly up and down and talked a little bit with her! This afternoon, right before we moved, I was lying in his bed facing him and we were both drifting in and out of sleep. I had my eyes closed when suddenly I felt several pokes on my eyelids! I opened my eyes and he was smiling behind his pacifier and still poking my eyes!
Then we moved him up to 12 (where his room number is 1234 – neat!) and he slept for about 20 minutes or so after the move. Everybody wanted to be in here and see him, but they were very respectful of his naptimes. Then he started waking up and I decided that I should try to get him out of bed again. So I VERY GINGERLY picked him up and put him on my lap, where his head immediately fell into the crook of my arm. He looked around at the ceiling a little bit, but had no desire to sit up. I knew I had to push him a little, so I sat him up on my lap as far as I would dare to see if he could hold himself up. Sure enough he sat up on his own for a few seconds and then leaned back on me again. Then Taryn handed him a Nemo storybook that she and Bradley had brought for him. I read the story and Canon studied the pictures closely. Then she handed him a book that Paul had picked up for him, another Nemo book ? with buttons that say something or make a sound. I only pressed one button before Canon picked up one very shaky hand and pointed to the buttons. I pulled the book closer and he pressed a Nemo button that said, “Hi, I’m Nemo!” Then he looked back at us and started smiling and said, “Nemo.” I was so excited and said, “Yes, that is Nemo!” Then he proceeded to press the button 37 more times (I’m exaggerating) and every few times he would look at us and say “Nemo.” Our family hanging out outside the room started realizing that he was awake and slowly filtering in to see these precious glimpses of our boy. He pressed the whale button and said, “Whale,” and everyone was so delighted we all laughed. Then he gave a little fake laugh, not to be left out! I mean, I could literally feel the stress and pressure leaving my body a little at a time. THAT was Canon – putting on a show for his audience! He even gave a little bounce to the music on the buttons. We were all so relieved to see his personality again! I told Drew that I’m going to write Disney Pixar a letter!
Visitors on Day 4 – Uncle Brad and Taryn Collins sacrificed a day of school and drove in from Austin for the day. Also Jennifer Meredith came by and introduced herself as one of Jere’s roommates and best friends from college (there’s a group of them that are still very close and call themselves the “inmates”). She brought a gift from all of them including an adorable ABC blanket that she made and special prayers they had written for us; she also took the time to pray with me personally and was such a boost to my soul.
Canon also received a teddy bear and balloons (to which he pointed and said “balloon” when we got in the new room) from Charlie and Linda’s Bible class at Hillcrest, cards from the Tuttles and Mullins in Abilene, cookies from one of Charlie’s former students, a big Elmo, a couple of Nemo books, and some Mickey and Goofy videos from Uncle Paul, and the Nemo book from Bradley and Taryn.
Brad and Karen flew back to Amarillo today. I couldn’t believe they came all the way down here just to hug us! She left two bags of Christmas decorations for the apartment that we have to be in for a month. I was completely overwhelmed. We had pretty much decided just to pretend that this was not the holiday season, because we might get depressed that we aren’t doing the typical holiday things this year. But Karen wouldn’t hear of that! God just continues to bless us.
I stepped into the Children’s Chapel today during the nurses’ shift change time. There’s a tree in there with pieces of paper hanging like ornaments on it. Each piece of paper has written on it a prayer. I stood and read some of them and was reminded again how big God is. Some were long and eloquent, like one from a grandmother asking God to heal her granddaughter’s lungs or to touch the heart of someone out there to donate their loved one’s lungs for her… that one I understood completely. Some were in Spanish. Some were simple and direct, “God, heal my daughter, and protect my baby on the way.” The ones that touched my heart the most were the ones that were written in a child’s handwriting, “God, thank you that I gotted good numbers on my blood exams today.” And “Dear God, please save my brother and help him not to be sick no more.”
I have an amazing new perspective on God. I used to think that, yes, God wants everyone to believe in Him, but He is probably so busy that He really just leaves that decision up to us and if we decide to believe… great! Now I see that God is in the business of actively helping people to believe. Perhaps He orchestrates our lives in order that we might, somewhere along the way, REALLY see Him and REALLY understand how much He loves us.
Chandra
Dear Father,
Thank you for showing me my Canon tonight. You saw my heart and knew how much I missed ‘the little things’. Continue to help his body recover and give him more and more energy to pursue the life you intend for him to have.
Bless the people who have come forward and offered their hands, their hearts, their homes. We can see Jesus in the servant hearts of these people every day. In some way, please reward all of those who are reaching out to us and continuing to keep Canon in their prayers as he recovers.
Be a real presence in the lives of our donor’s family today. I understand they had a memorial service for him today. My heart breaks with them as they try to piece together their lives around a very real, almost tangible hole. Hold him close to You and reunite us all together one day.
Make a difference in the lives of all the people who, in faith, wrote down a prayer and hung it on a little tree in a small room downstairs.
In Jesus’ Name,
Amen