Day 10
Tonight I sit with my in box full, a basket of laundry beside me and my eyes burning from a lack of sleep. Yet I can’t seem to write to anyone or get up and do anything or even go to sleep. Why??? I need time to pray. I need to take all of the events of today and place them at the feet of Jesus, my savior, and say this day was lovely but what made you send this to me. I need to pray so that I can clearly see that His will was done today.
Last night (Wednesday) as Catie went to sleep I sat down to clear my e-mails. A few hours later Catie called me because she needed to use the bathroom. Once she was up she no longer was tired but rather hungry. So she sat next to me reading my e-mails as she finished a piece of pumpkin pie. One e-mail that she read must have started her thinking. A few hours earlier at dinner she asked me if our baby, who is older than Catie and no longer with us, is a saint. I gently tired to explain our Catholic faith regarding saints to Catie, that because baby Gia died before being born no one knew her and therefore no one prayed for her intercession. Now at midnight, reading an e-mail about a sick child, Catie expresses her desire to be a saint. She tells me that she would like to cure any sick children and restore their health. I asked her if she meant any children or specific children and she said that she wanted to help Jake. Catie then asked me if I knew if there was a Patron Saint of Pediatric Illness. I said that I didn’t. She looked at me and told me that she was ready to go back to bed. As I carried her back to bed, she told me that is what she would like to do for children – cure them and be their Saint. Catie is some girl.
I kept thinking about last night all day today. Catie had physical therapy today. She was given a walker and is doing quite well with it. She is happy for more independence. Yesterday at Graceland she announced that she could no longer feel her right foot. This was mentioned to Dr. Baker during his exam of Catie today. At this point Catie has lost all ability to control both of her feet. She can’t move the left leg below the knee and the right leg is about halfway up her shin. She continues to be very positive and if you didn’t know that she was dying you would never know by looking at her. That is how I felt as we were going to lunch.
We were grabbing a quick bite before we went to play laser tag with Hunter. As soon as our food arrived Catie looked funny. Then she asked me to sing to her and hold her hand and soon she was sitting on my lap asking me to call the hospital. Her stomach hurt. She was not hungry and had no nausea. We called the hospital and Angela from Quality of Life talked us through what to do. Angela ordered another new prescription for Catie. Catie is on many medications – they are a very colorful group. We waited 30 minutes and went to the hospital. Catie is having difficulty emptying her bladder and moving her bowels – as the tumor progresses this will continue.
Remember how much I complained about waiting for Assessment Triage or the Medicine Room? Well when you are as sick as Catie they come right away for you and they draw your labs in your clinic room. Waiting seems to be a sign of health. If only I had known??
Now we will wait and see how Catie reacts to these new medicines and dosages. LaserTron has been rescheduled for 10:20 in the morning. We will be able to play before Aunt KC and Mia board their plane and before Hunter begins round 3. Kevin arrives in 24 hours and I am thrilled. I am struggling with the decision of bringing Catie home. Even here, five minutes from the hospital we are having issues. What will life be like 1400 miles away from the people charged with Catie’s care?? Kevin and I will be praying and asking the Lord for guidance as we continue to do His will and journey with Catie – learning all that she has to teach us. Please pray with us.
God Bless from St. Jude,
Christine
