Every day.

Every night is tinged, if not saturated, with dread. Lucas could die before morning. There isn't much to do with that knowledge. We've mostly given up on checking on him overnight to be sure he's okay. We're fortunate that he sleeps without incident for almost 12 hours every night. If he has a cold or some symptoms we might check on him as he sleeps.  But often we're almost equally afraid we'll wake him, or find him awake and our interruption will set him to crying.

Not quite every morning, maybe half of them, the dread creeps back as I delay going into to his bedroom.  What if today he's not alive?

But the opposite emotional episode occurs each morning when I wake Lucas up. He (almost always) beams his huge smile at me, and I get to celebrate that he is with us one more day.  We hear all the time that we should live each day as though it were our  last, and focus on the now.  It hard to maintain that mental disposition but Lucas ensures  my mind starts there every morning. Some days I hold on to it longer than others.


Lucas had a rough April missing almost 3 weeks of school but has been very healthy (for him) since. He spine curvature seems to have gotten progressively worse since I first noticed it in October.