He looks different but he laughs, eats and plays just like any other kid. You see, my son is deformed from a tumor wrapped behind the left eye and bone abnormalities in his skull. Imagine a kite unable to fly because it's weighed down. Picture my son's looks, ones that don't measure up to society's standards of what counts as beautiful. But he is beautiful.
I must admit that watching my or any child battle an incurable tumor condition tests the limits of what I can handle. Alison Krauss, with Union Station, sings of this, of “the pain and ache a heart can take, no one really knows.” It's humbling, all the pointing and staring and comments whenever we go places.
Before I had my son, after his brain and skull surgery, and even recently, I admit to having a list of Gethsemane prayers. I thought prayer meant coming to God with a long list of all the things God should take care of. Cure, God. Heal, God. Help, God.
Only recently have I seen the futility and manipulation of turning God into a genie to appear and grant me whatever I wish.
Life as is. What is so. What is the point of prayer, I ask, if prayer makes no difference and reality stays as is — broken?
I have caught a glimpse into the purpose of prayer: to commune with God. Of all places, it happened where my son goes for therapy. In the waiting area, a small boy stood by the fish tank. I watched him as he struggled to speak. Despite much toil, he could only muster loud moans and piercing shrieks.
Initially, I felt sorry for the boy, even embarrassed. To ease my discomfort, I started to pray that God would heal him, deliver him and help him speak normal. While praying it occurred to me, what if that never happens, then what? With this in mind I looked at the boy. Like a switch, as if my eyes opened for the first time, it dawned on me how God must see the little boy: the sacredness, the holiness, the value of this boy's life. Despite the setbacks and disabilities, he still has purpose and meaning.
I gave thanks. When my son returned to the waiting area after working with his therapist, we left hand in hand. I reveled in the gift of joy he offers the world despite looking different.
