Today marks my second Mother's Day. I had a son in March of 2009. What an adventure we've had in his first year. He loves all sorts of crackers: animal, Ritz, graham, goldfish. I find it very difficult to write about my son. I guess pain is part of motherhood at times. Then there is the experience of science and God in the same space. Science has far to go in treating NF1. As of right now, the manifestations of NF1 in my son can only be treated surgically.
I wait for science. God waits for me.
The days leading up to my son's brain/skull/eye surgery, I pay close attention to my son's head and hair, knowing that these are final moments for him without scars, and with hair. I look away lest I swallow the ball forming in my throat.
The medical team saves me some of my son's hair from the surgery. Later, back at the Ronald McDonald House, I find it in a zipped baggie among his clothes, toy, and blanket--all handed to me in a white bag. I remember the nurse who handed me the bag. When she walked away, I stood there alone, holding only its draw strings. I cannot describe the feeling, but it must have come awfully close to what it feels like to lose a child.
Prayer makes a difference, not so much in ridding my son of NF1 as I hope, but in teaching me to accept things as they are.
Now I must go get my son. Thank you, God, that he cries to me from his crib.