One year later

The lot to write this post has fallen to me. I can't say that I am ultimately very excited about this endeavor; there is still a large part of me that wants to wander in the hinterland of denial. Yet it is appropriate that, one year later, I lead off just as I did then. Yesterday was diagnosis day, the one year anniversary of the nightmare that was and the troubling dream that is. Today I try and put to words some sense of what has been going on in us and I will probably fail.

I could begin this simply by speaking of where we were this time last year: the cold harshness of the fluorescent lighting and spartan hospital room, the fear of unknowing, the intimidating presence of something in my son's chest that I could not see yet constantly filled my mind. I could begin there but my heart is not in it.

I could begin instead with where we are now: Andrew's health and vitality, his complete ignorance of anything that happened last year, the girls's memories and questions of the hospital as soon as the Christmas tree went up, the unbidden memories that randomly return to us as parents with certain smells or songs. This would be as good as any place to start but I can't quite bring myself to do that either.

The reason for this is the ambivalence I feel today. This ambivalence is due to at least three voices that are warring in my head. The first is the voice of denial. Denial is loud and talks a lot. It is not a commanding presence but rather an annoying one. It fills the air with words to keep the silence away because with the silence comes reflection and with reflection comes truth and truth, as they say, can be inconvenient. To keep that away Denial is trying desperately to move me from thing to thing, from distraction to distraction to keep me away from something that might cause me pain.

The second is the voice of Rationality. Whereas Denial simply seeks to keep you distracted, Rationality seeks to make you believe something that, though possibly true, might not be the most helpful thing. It is commanding and convincing, speaking with authority laced with a tinge of shame to keep you in line. Today Rationality is trying to convince me that because Andrew hasn't had any treatments since March, that since our story has thus far ended well, that thus I should be unfazed by this anniversary. More, I should in fact simply be celebrating the reality that I have my son and my life has returned to some semblance of stability.

The third and final is the voice of the Heart. The Heart is the voice that is quiet but persistent. With enough busyness it can be drowned out and it isn't very good in a debate, but it doesn't give up. The Heart reminds you that you are human, that you actually feel things, that things aren't the way you know they are supposed to be. The Heart somehow navigates the brokenness of the world and still speaks with hope and expectation. Today this voice is reminding me of how bad this day was a year ago. Today this voice is trying to get me to live in that place where the walls fell in and all of life changed.

Ultimately Denial won out. It is now a week since I began this post. In the time between writing we've gone through Christmas eve and Christmas morning (both surreal experiences of remembrance) as well as a trip yesterday (Dec 28th) to UVA for Andrew's latest MRI. A year ago today (Dec 29th) Andrew was in surgery getting his biopsy.

My experience yesterday echoed that day. I hope I will never get used to the strangeness of holding my boy as he goes limp from anesthesia. A year ago he laid on my lap as the white liquid was slowly injected into him and within seconds he was out. I handed my life over to a doctor who took him back to an OR. When they left I remember holding Jess and crying. The tears came not just from what was coming but ever just the reality of having a lively little boy turn limp in my arms. The eeriness remains with me. Yesterday was the same. I held him until he was out, placed him on the bed they would roll into the MRI room and walked out to find my wife. The tears came again; sure not as many and not with the same force, but they came. They came with a subtlety that was more filled with sadness than fear. The ironic timing of his MRI kicked Denial and Rationality to the curb and allowed the Heart full access. My life is still not normal.

All signs at this point are that Andrew continues to be fine. An unofficial look at the MRI shows no change either way for the minuscule masses that remain. That is fine since it is likely that those masses could remain with him his whole life, silent reminders of the terror that he barely experienced and will never remember. That strangely seems appropriate this morning as I write. Maybe that is the perfect metaphor for where we are as a family. The emotional masses that remain in us are smaller, but they are still there. Every once in awhile we are reminded of their existence. Some times the reminder comes with tests and dejavu like yesterday. Some times it comes simply by seeing a picture of Andrew with barely any hair or hearing our girls playing with their dolls who still, every once in awhile, get cancer. One would hope that these masses would go away collapsing into the sweet realm of forgetfulness, but that would somehow cheapen things. Ultimately what Denial and Rationality do is they seek to minimize what has gone on to limit the amount of continued fallout under the assumption that the pain that this event brought might destroy us. It didn't destroy us then and it won't destroy us now.

That isn't bravado nor is it presumption, it is an acknowledgement of something greater than the pain. One of my biggest struggles of faith through all of this time has been one of the same struggles I have always had... only amplified. It is the doubt in God's goodness. I'm a presbyterian which means I am big on God's sovereignty (the idea that God rules and governs all things by His unfailing will) but sovereignty is no comfort unless you can also believe in God's goodness. Someone having ultimate power is scary unless you know that person is for you. That is where remembrance comes in and that is where Denial and Rationality do us all a disservice. You see unless I consistently practice the discipline of remembrance I forget that in the midst of that nightmare I never felt abandoned. Unless I am forced to taste those tears again I forget that their bitterness was countered with the sweetness of a Presence that I could not reproduce. Unless my mind is taken past my fear into those images and feelings and experiences I will forget that our story was one of mercy and that cancer did not win.

That is the strange thing; Denial and Rationality, who seek to keep you from thinking about your pain actually make it worse because they keep you from remembering the One who brought you through it. They strengthen the shadows that surround that pain, make it look bigger and more frightening than it really is, and deny the redemptive role that it was intended for. A year later we are still a family like any other except that we have a child with cancer.