Lil' J

Slowly but surely Timmie's numbers continue to improve. Today her CRP was 2.5 (Julian's guess was 3.0, so we were all pretty happy with 2.5) and she went 24 hours without a fever. The nausea was still pretty bad this morning, but by this afternoon she was able to shower and eat a small steak and half of a baked potato. All of the doctors and nurses keep talking about that Homecoming Dance this weekend and are doing everything in their power to make it happen. I am so proud of how hard she is fighting despite her all consuming nausea and persistent weakness. A couple of days ago she said that she wished she could fight just one battle...just the aplastic anemia, just the leg, just the lung. She expressed her feelings of discouragement, and through her tears she finally announced, "I am broken."  I knew she meant emotionally, not just physically. She had hit her wall and felt that she just couldn't go on anymore. Then some sweet and thoughtful friends facetimed the Poky vs. Highland football game for her. The crowd chanted "We love Timmie" and the team even sent her a shout out after their big win. She sobbed, as she had been sobbing the last four days, but I saw the strength it gave her. If ever she has needed a cheering section it is now.  Everyone is trying so hard around here to help her feel better. They aren't used to seeing her so sad. We tried yet another nausea cocktail today and finally stopped her continuous pain pump of dilaudid. Fingers crossed once again, we prayed for a bit of relief for her. Cassie and Tony brought Julian down last night which for Timmie was a much needed visit. She has shed many tears the past couple weeks because she misses her little brother. They all kept Julian company while Bo took me out to dinner for my birthday. I was a little hesitant to go out because our last excursion was not quite what Bo had hoped it would be. A couple of weeks ago he took me to the Cheesecake Factory, which I love, but I just couldn't enjoy the moment. Half way through dinner, tears rolled down my cheeks as I tried to explain to him how I felt. It was as if I was in a dream, and I looked around at people eating, drinking, talking, laughing and I couldn't wrap my mind around it. I couldn't remember what it felt like to have a carefree evening and a leisurely conversation. I couldn't remember what it felt like to not to have a heavy, painful pressure in my chest. I wondered how any of us do it...find pleasure in a world filled with heartache and despair. I wondered who had looked at me that way in the past. I thought about a line from Elie Wiesel's speech  entitled "The Perils of Indifference" in which despite the fact that his argument revolves around the need for humans to avoid indifference at all costs, he admits that indifference can be seductive. He even questions whether or not it is necessary to a certain extent as he explores the complexities of the phenomenon:

What is indifference? Etymologically, the word means "no difference." A strange and unnatural state in which the lines blur between light and darkness, dusk and dawn, crime and punishment, cruelty and compassion, good and evil. What are its courses and inescapable consequences? Is it a philosophy? Is there a philosophy of indifference conceivable? Can one possibly view indifference as a virtue? Is it necessary at times to practice it simply to keep one's sanity, live normally, enjoy a fine meal and a glass of wine, as the world around us experiences harrowing upheavals?

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.

Obviously I wasn't the best company for Bo as I was pondering such deep philosophical questions. I should make it clear that I do not feel at all as though people have treated us with indifference. It has been quite the opposite. I have been amazed at the constant show of love by both friends and complete strangers towards us over the past four months. Rather, this was personal reflection. In my comfortable and blessed life, were there burdens I could have helped to ease if I hadn't been so absorbed in my own seemingly trivial worries and concerns. And what about Weisel's rhetorical question exploring the necessity of indifference in order to maintain sanity and normalcy? It is a question I have repeatedly posed to my AP students. It is a question to which I don't have an answer. But in that moment at the Cheesecake Factory, I wondered if I would ever be able to feel that way again....be able to enjoy a nice dinner and an evening with friends or loved ones without the heavy worries on my mind and in my heart. I expressed these feelings to Bo across a tiny table in a crowded restaurant. He listened tenderly and lovingly. He didn't have any answers but he understood how I felt, which brought me more comfort than he could have realized. The look in his eyes at that moment is etched in my heart. I could see how much he wanted to fix it and how much he cared. I am pleased to announce that I was a much better date last night at my birthday dinner. The nursing staff was shocked to see me leaving the hospital in clothing other than my typical sweats and flip flops. I don't know why, but we were able to have a nice, quiet dinner, and I was much better company. We still talked about our deeply embedded concern for both Timmie and Julian, but we were able to enjoy our friendship as we laughed with one another and enjoyed eachother's company. Julian joined us for a night in the hotel and I can't express how much it meant to cuddle with him and talk about school, soccer, friends, books. He talked and talked for over an hour, and I loved every minute of it. Today when it was time for him to head home with Cassie the routine began. He started pouting and talking back and finding any outlet in the world for his anger: the video game, the inadequate treats, taking the stairs rather than the elevator. It is the typical display for him when it is time to say goodbye. Cassie finally headed downstairs to get the car situated and left me in the stairwell with Julian. I encouraged him to hurry and not to inconvenience his Aunt Cassie. In a final act of defiance, he sat down in the middle of the stairway and refused to move. I was out of negotiation tactics and personal imagery strategies to remove myself from the heartwrenching display. With no other option seemingly apparent, I sat down next to him on the stairs and started to cry. Luckily no one was choosing to take the stairs. He stopped the pouting and the power struggle and looked up at me with eyes filled to the brim with tears. I don't know how he manages to keep those huge tears welling up in his eyes from streaming down his face, but he seems to have a real talent for it. I told him that it was ok. That I was sad too. That I missed him so much and hated saying goodbye. That I wanted Timmie to get better and for our family to be back together. I told him that Timmie was getting better and that we would both be home soon. I told him I was proud of how strong and brave he has been. I hugged him and I cried. He was shocked at my reaction and buried his head in my chest an hugged me with all his might. We slowly made our way outside and he tossed some pennies in the little pond out front and made his wishes. Just before getting in the car he made one last attempt in his struggle for power. He closed the door, leaned his back on the door, and insisted he wasn't going. At this point Cassie was blocking traffic. I quickly, without thinking, said, "Jules, hurry and get in the car." He fired back, "I want to make another wish!" He had been stalling for nearly 30 minutes by this time. I replied, "No, you have already made lots of wishes. You have to listen to your mom if you want your wishes to come true." Without a moments hesitation he looked me in the eyes with the most disappointed face I have ever seen from him: "They never come true." I burst into tears, handed him a penny and watched him race across the street to make another wish. He ran back, got in the car and shut the door. Cassie, crying as well, drove away quickly to avoid blocking traffic and avoid prolonging the inevitable. Here's to hoping Julian's wishes can start coming true. He has big welcome home plans for his sister that include a funfetti cake. I am so proud of him and his big sister and how strong they have been during these difficult circumstances. My love for them and for Bo has grown in a way that I didn't know was possible. They are my world.