Chandra's Journal
May 19, 2006
Canon and I flew to Houston on Tuesday afternoon for his six-month check-up on Wednesday. We just can’t believe it’s already been six months!
Canon is now old enough to anticipate something that we’re “fixin’” to do. On Monday I said to him, “We’re going to ride on an airplane tomorrow!” His eyes lit up and he said “Okay!” In the car later that day I mentioned it again. “Do you want to ride an airplane tomorrow?” He nodded his head excitedly and said “Okay!”
Later…
Canon: “Ride a airplane?”
Me: “Tomorrow we’ll ride the airplane, okay?”
C: “Tomano airplane okay.”
Later…
C: “Ride a airplane, please?”
M: “We will tomorrow. Where will the airplane go?”
C: “Church.”
M: “Oh really? We take our car to church remember? The airplane will take us to Houston.”
C: “Oo-son. Okay.”
M: “Yup. To the hospital.”
C: “Hostibal.”
Tuesday morning…
M: “We get to ride an airplane to Houston today!”
C: “Okay!” At this he walked to the front door and fiddled with the knob saying, “Ready! Ride a airplane!”
M: “Well, first you’re going to go see Miss Rhonda for a little bit, then we can ride the airplane.”
C: “Na-nees-na! Okay!”
When we finally drove up to the airport, his anticipation level was so high he could barely stand it. He was yelling “airplane!” at every single one he saw, whether it was real or a picture. I never realized how many little pictures of airplanes there were at the airport on signs and such.
He did great on the flight. We did have to change planes in Dallas, but it wasn’t bad at all.
The only glitch in the whole trip came when we landed in Houston at 7:30 and the two bags I had checked were nowhere to be found. I waited at Baggage Claim for about 30 minutes, and then went to make a report. The lady just took my name and number and the name of the hotel we were staying at and said they would bring them to me when they showed up. This being the first time I’ve been separated from my luggage, I just wrote them off basically and thought we’d never see those things again. So before we went to the hotel, we stopped at Target and bought enough to make it through the night and the next day. Our dinner consisted of McDonald’s chicken nuggets and French fries eaten while we shopped at Target! It ended up being about 9:30 before we made it to our room. We were both pretty worn out, but Canon’s second wind had kicked in. I thought a bath would help to calm him down enough to get a good night’s sleep. So after a quick one, I put his pajamas on, we said a prayer, and I laid him down. He really was exhausted, but since it was just one big room and I still had to shower and get everything laid out for the next day, Canon had a hard time falling asleep. It wasn’t until I finally turned every stitch of light off and went to bed myself that he was able to sleep. Next time I’ll look for a suite.
The next morning, surprise! Our luggage showed up at the door! Yea! More points for Southwest Airlines. We managed to get ready and get out the door in plenty of time to get the lab at Texas Children’s by 8:30. I was feeling very impressed with myself.
The whole appointment was really quite fun! He wore his “Ask me about my new liver” T-shirt and his Nemo ball cap (it has fins and a tail on it). Everyone just beamed at him as they passed us in the halls and if they caught us standing still (elevators and waiting rooms), they would say, “He is adorable! Did he have a liver transplant?” And then I could tell them the whole story! I bet I got to tell the story ten times! I even met one mom and daughter that went through liver transplant eight years ago (in Minnesota; they’ve since moved to Houston) and were at the hospital for some routine lab work. Even though I was weighed down by 100 pounds of stuff (two bags and Canon), I felt like I was walking on air. The hospital was so familiar – the sights, sounds, even smells. But I felt like a completely different person this time. I can see in my mind this girl walking hurriedly through the maze of hallways and elevators to get from the Ronald McDonald Room where she just had five hours of sleep to the PICU to relieve her husband. I know that it’s me. But when I look at her in my mind, she looks tired, anxious, even shaky. That’s not me. Today I’m energized, proud, excited!
We gave each person on the transplant team a double frame with a picture of Canon on one side (just 10 days after transplant with a big smile on his face) and a note of thanks on the other side. Each one said, “Dr. Karpen, For using your God-given skill to give Canon a new liver and our family the hope of a brighter future, we are eternally grateful. “May the Lord answer you when you are in distress; may the name of the God of Jacob protect you. May he give you the desire of your heart and make all of your plans succeed.” Psalm 20: 1,4. Thank you, Drew and Chandra Perkins.” I really wanted to give them something that would adequately convey our gratitude, but what an impossible goal. Nothing in this world could repay what they have given us.
And they all LOVED his shirt! Dr. Karpen actually walked in, saw his shirt and pulled his cell phone out of his coat pocket to take his own picture of Canon! Jaymee and Shay (child life) discussed perhaps having shirts made for all of their transplant patients. I think that’s a great idea!
So, the appointment was simple – they all said he’s doing “excellent!” He’s gained a little weight (their scale said 25.2 pounds). Dr. Karpen and Dr. Goss poked around a little bit making sure they didn’t feel any lumps or bumps anywhere and took close looks at his skin and eyes. But mostly everyone would come in and just talk and watch him play and shake their head saying “He looks so great.”
We left the hospital, packed up our hotel room to check out by noon. At that point we had some time to kill because our flight didn’t leave until 3:30. So we went to Taco Cabana and sat together eating quesadillas and chips and queso having a grand ole’ time.
We finished lunch and went on the airport at about 1:30. I knew he was getting tired, but was counting on him sleeping on the plane. We turned in the rental car and made it through security and to the gate by 2:15. Yikes. An hour to kill in the airport, smack in the middle of naptime. He was doing a great job, though. I set him on my lap, thankful that I had the DVD player, and put Nemo in. He got comfortable in my lap with his blanket and was watching sleepily when the batteries died after only five minutes! And he did NOT understand “the batteries are dead”. I went through all four books that I had with me and was beginning to think about putting him the stroller and just walking up and down the concourse until we boarded, when he focused in on the runway outside and just watched the airplanes taxiing slowly back and forth. Every once in a while we had a good view of one landing. He stayed there with his head on my shoulder watching airplanes for about 30 minutes! It was very peaceful actually. Then I started thinking that it was weird that it was 3:00 and there were only four other people waiting at this gate for a 3:30 flight. Hmm… After I checked my boarding pass again, I realized that we were indeed at the wrong gate. So we packed up and went to the right gate where there were tons of people, of course.
We didn’t have to change planes that time, but we still had to stop in Dallas. During the first leg, Canon didn’t sleep but he was content to look out the window most of the time. Then right after take-off from Dallas, I patted my lap and said, “Why don’t you go night-night?” He immediately put his head down and slept the 45 minutes to Amarillo.
I was so anxious to get home and see Drew and Creed! I hadn’t left Creed overnight since the night of Canon’s transplant when he stayed with the McIntoshes for a couple of days. When we walked in they were on the couch and Creed looked at us and just smiled and squealed and bounced all over the place. I missed him so much! I was more nervous about leaving him this time because he hasn’t been taking a bottle very well lately. But Drew said that he did great. When I asked Drew to rate his night with Creed 1 – 10, he said “10, of course!”
So, one more milestone in the books!
Mother’s Day weekend also came and went. Charlie and Linda were able to come up and help us with the boys while we did some work at the new house on Saturday. (No, our house is not sold yet… next subject!) It was really nice to be able to do some uninterrupted work and know that Canon and Creed were getting some quality grandparent time, too!
I spent a lot of Mother’s Day thinking about Amberly. Nobody mentioned her name to me that day (it’s different now because I’m not as lonely as I was the first couple of years), but I could feel her around me. We ate lunch at Mema and Grandad’s house where they have pictures on the wall of their three great-grandsons: Canon, Creed, and Kyle Risley. And on a shelf above the boys’ pictures is a small framed picture of Amberly. Separate, but present. That’s how it felt to me all day. She’s not here, but she is so much a part of me and my family. In reality, I’m the kind of mother I am because of everything I went through with her. Everything about who I am as a person, beyond being a mother, is somehow connected to her. The things that I take lightly are things some other moms seem to cling to. And vice versa, the things that I dig my nails in about are things others might let go of easily. I don’t think I’ll ever be able to change that about myself. I’m sure I’ll evolve as the boys grow up, but at my core I will always know the truth about this life – that our little piece of it could be devastated instantly. And other people know that logically, but it’s not a part of who you are until it’s happened to you. Jordan’s family knows what I’m talking about. One minute everything’s perfect, and then it’s not. And even though life goes on, and I’m tremendously happy today, my picture of life is forever singed and scarred.
I suppose that’s okay though. Because this life is not what it’s all about. What a journey it has been so far, though, and our little family is still so young. What blessings and surprises must still be in store for us.
Chandra Perkins
“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.”
Isaiah 42:16