Hospital screw up /No room there for Nik /Have to reschedule Well, this day just didn’t turn out a thing like I expected; that’s both a good thing and a bad thing. It started off at 1:30 this morning when I was up being ill from something I ate last night. Well, that and quite possibly a bit of anxiety —which is actually not typical for me, but this EEG trip had me pretty wound up. Still not feeling great, I spent the rest of the night sleeping sitting up in bed. Hig…[more]

I recently wrote, in a comment on Kyra’s post here, that I thought God spoke to us in countless everyday ways if we but allow ourselves the space to hear the message. In the midst of a teary blue funk this evening, God spoke to me through the simple actions of my son. As I sat on the floor with Nik between my legs so I could give him some medicine through his g-tube, I hummed “You are my Sunshine” to Nik as I choked back tears. Tears brought on by what I don&rsq…[more]

Or is that Day — The new night? Who knew?! Apparently nighttime is no longer for sleeping. I guess that's just an old, out-dated notion that only fuddy-duddy folks like us parents ascribe too, right? In other words, "Yes, Virginia, there is such a thing as sleep deprivation torture." And my son is acheiving rapid mastery of the techniques, I gotta tell you. Up from 10 to 12:30 last night, again from 1:30 to 3:00 a.m. this morning. Awake at 6:30. Not the pleasant, "…[more]