Re-Experiencing

This morning I spent some time communicating the news with some folks that I realized that I hadn't told yet. As I did I found that the experience of telling people is a lot like reliving the events of the last two weeks. I suppose that is part of why I am thankful Jess talked me into setting up this blog. No offense, but I'm not sure I could take having the same conversation 1000 times... it is too emotionally taxing. Apart from this however this morning was full of a new feeling for me, anger.

When Andrew and I woke up for the morning (I say that because we "woke up" several times last night and early this morning including one visit from a pediatric neurosurgeon who came to do an evaluation on my two year old at what must have been 4-5am) I found that my little boy didn't much want to talk to me. I am used to getting Andrew up in the morning. Back in the land that we used to call normal I would get him up and dress him before coming downstairs in the morning. He would greet me with a smile and we'd have some back-and-forth about whose Drew-boy he was. This morning though there was nothing. He didn't talk, he didn't smile, he didn't even give me the salutatory "uh-huh". He stayed that way through breakfast until we finally made it down to the playroom for him to have a go at the toys there. As I've reflected on this I've found a disruption growing in me; I am suddenly aware that my boy isn't speaking to me not because he can't, but because he doesn't want to. Andrew is upset.

I'm not sure if he's upset with me, the world, the doctors, or all of the above. What I do know is that today he has been withdrawing. I cannot begin to tell you how hard it is to watch a boy who is so full of life begin to hide away. I can't say I blame him; since coming to this place there has been a revolving door of nurses, doctors, and techs that want to take his blood pressure, prick him with a needle, wake him in the middle of the night to do some evaluation or another, and generally make life difficult for him. He has been separated from his sisters, his brother, his parents, his grandparents, his home, his life, his church, everything he has found comfort and regularity in. So, like many of us would, he is closing in on himself wanting it all to stop. No, I can't say I blame him.

Yes, as I sit here writing this I am angry. It wasn't bad enough that this disease had to take my son's health but now it is working on his heart, his vivaciousness, his joy. I look out the window from our 7th floor room and I see the roof top of another wing of the building and I want to take that little half ladder that goes up to it, stand in the middle, and let loose with the loudest primordial scream I can muster, "LEAVE HIM ALONE!!!!!" I hate this disease and I hate what sin has done to this world!

I am a firm believer in God's sovereignty and his control over all things, it is the basis of all of our prayers and the foundation of all of our hopes. I know that this neuroblastoma did not catch him off guard, take him by surprise, or knock him from his throne. At the same time I have to admit that this is a hard providence to endure. This experience of God's sovereignty is a hard pill to swallow. And so I find myself looking up toward God with the same kind of eyes I see looking up at me from my son; eyes that question, eyes that are confused. When Andrew has looked at me with those questions I have no answer for him, only my presence. When I look up with those eyes I am not met with answers either. I know he is present. I know he is walking with me, leading me in fact, but my questions remain.

Some might say that my questions and even my anger are signs that my faith is faltering... not so. I yell and question and argue not because my faith is weakening, but because I know that God is the only one who can do anything about this; that in fact this is a part of our story that he has written. There was a time that in doing this I would be afraid that God would smash me like a bug for daring to question him, but no longer. Grace is bigger than my questions and unlike any other world system the Christian story proclaims a God with absolute power conjoined with humility. In other words he ego isn't bruised by me. What's more, now I have experienced those eyes as a father; those eyes with their fearful questions and their terrible confusion. I have experienced those eyes and found that when I do all my heart wants to do is draw closer to them, to gather my boy in my arms and cry with him and say, "I am sorry." And if I, being evil, know how to give good gifts to my child, how much more will my Father in Heaven give.