Despite our Christmas scare, Henry is again thriving. It's so much fun to talk to him, play with him, learn from him, be amazed by him. I remain incredibly grateful for this time, and somehow able to put my sorrow away most of the time.
But I miss his face.
He's taking daily steroids now, for over 2 months. They've been tapered down to a relatively low level, but since he's feeling so incredibly good we're cautious about decreasing further. Regular steroid use causes a number of changes, one of which is a characteristic "moon facies", or more colloquially "chipmunk cheeks".
In the same way that two children with Down's syndrome look similar, any two four year old boys on steroids look like they could be brothers. Their cheeks are infinitely pinchable, kissable, lovable....but it's a real distortion of the natural face.
I've realized that I won't ever see his natural face again, as he'll most likely be on the steroids till the end. It saddens me. Of course, I'd never trade his current perplexing health, and I eat up all the grins, scowls, and looks that I'm getting these days. But after 15 months of baldness, anemia, extreme weight loss, extreme weight gain, and an episode of massive edema, I have a scant number of pictures of my boy, as he would have been, untouched by cancer.
Isn't he gorgeous?