10:30 PM Two funny Sophie stories that we have neglected to recount these last couple of days:
1) Yesterday, Sophie was playing with a doll that our friend Mary Gayle gave to Sophie a while back. She is dressed in red, white, and blue stars and stripes, and Elisabeth named her "Liberty." Well, Sophie has given her a new name. Now her name is LuLu. LuLu Chemia. I never in a million years thought that leukemia would be a laughing matter, but from the mouth of our three-year-old, there you go.
2) Also yesterday, we were sitting down to a lovely dinner of leftovers. Sophie asked for Clifford soup (surprise!) and since everything else was already prepared, we sat down for dinner while the soup cooked. We said grace and then Sophie asked, "Where's my soup?" "It's cooking," I answered. "Where is it cooking?" Now, in my defense, Sophie has been the queen of questions these last few days--why is the sky blue? why are you doing that? where are you going? You get the picture. Thinking this was another 3-year old nuisance question, I said, "It's cooking in the kitchen, on the stove. Where did you think it was cooking? In the toilet?" "No," came the response, "I thought it was cooking in the microwave." Touche'
Sophie and Susan had a good day at home today. We are really beginning to appreciate having someone around in the mornings to help out. Both Susan and I are able to get more things done than we have been. Sophie's energy seems to be holding steady, although I continue to worry about her appetite. She barely picked at dinner tonight. I just wish we could find something that would interest her in food.
On a more serious note, it's confession time. Dealing with all of this has been hard. When we were in crisis mode in the spring, it was surprisingly easy to "let go" and rest in the arms of grace that we needed. As Sophie's treatment progressed and our lives returned to somewhat normal (a "new normal" at least), I fell into the "normal" illusion that I am capable of handling whatever will come, that I am self-sufficient enough, that I am smart enough, confident enough, strong enough to get done what needs to get done.
That has been a lie, and I have paid the price for committing myself to that lie. This week as I was running late to class to turn in a paper that was not my best effort on an assignment that I genuinely cared a great deal about, I realized, I'm not at 100%. At best, I'm at 75%. Everything I do, whether it is parenting, or pastoring, or being a husband, or being a student, or being a son, or being a brother, or being a child of God, or simply being a human being, has suffered in some way because I have a child who is being treated for cancer. In subtle and subversive ways, ways often too small to notice, every aspect of my life has been compromised and I have been in denial.
Yes, Sophie's treatment has been going well. Yes, her prognosis is good. Yes, we are handling everything as best we can.
But, yes, I have failed to acknowledge that a lot of my time is spent second-guessing every decision I make. Yes, I have ignored the warning signs of forgetfulness and depression and anger and general malaise that all stem from the trauma we have experienced this year. Yes, I worry about my relationship with the people I love, with my wife, with my daughters, with my sister and my parents, with my friends, and with this wonderful community that has reached out so lovingly to us all. I have been paralyzed by something beyond my control. I have neglected the relationships that would have helped me confront the lie that I am managing this all very well, thank you.
In these last two days, I have, as the parable says, "come to myself." I have come to my senses and realized that I have slowly wandered away to some far away country, away from the place I need to be, emotionally cut off from the people whose love for me and care for me will help me understand who I am and who I am called to be. What has been so shocking these past few days has been to realize just how far away I have managed to wander, without ever intending to wander at all. It's as if moment by moment, day by day, I have slipped off somewhere. It's actually somewhat frightening. We could never have hoped for Sophie's treatments to be going as well as they are, but you know what, having a child with cancer is not something I would ever wish on anyone. Even when the outlook is positive, it is not as positive as the outlook would be if there were no such thing as leukemia, and that is the reality that we live with. It's not pretty.
I'm thankful that for whatever reason, in these last couple of days, I have indeed "come to myself." I know that some friends have noticed that something has been amiss, and I know that some of you have prayed for me in particular. Thank you. Please continue to pray for me and for our whole family. We need your support. We need you to remind us that we are not alone in this and that we are not going crazy when we act like we're crazy. We need you to reel us back in when we get in over our heads or when we wander off. We need for you to help us realize that childhood cancer can never be something you get used to, because we haven't managed to get used to it yet (although, Lord knows, we've tried). But most of all, we need you to love us and keep us in your thoughts and prayers, even in the midst of these days when things seem to be going well.