S.O.S.

At this point Asher could no longer speak or move. He could blink and make a few other eye gestures, so we worked out a system with a small whiteboard, and rows of letters to spell out words that he wanted to say.

January 6 was the roughest day yet. His breathing was harder, and had become a little more irregular. His body temperature was unstable. Simply put, he felt terrible. That night as I wrapped up his bedtime routine, after a few abnormal blinks and eye rolls, it was clear he wanted to say something more than “Yes” or “No.” I got out the spelling board, and marker, and we got to work. “H. O. S. P. Hospital?” One blink yes. “You want to go to the hospital?” One blink yes. He was reminding me of the times that I had told him that if he ever felt like he wasn’t being taken care of in a way that was helpful to him, that we could go to the hospital. Asher really hated being in the hospital, so I knew if he felt this way, he was likely feeling the worst he had ever felt. He had never once asked me to go to the hospital. It brought me to tears.

I apologized that he was feeling so badly. As gently as I could, and choking back tears, I asked him if he understood that if we went to the hospital at any point from here on out, he was likely never coming back home again. He knew the stakes, and he affirmed that he understood. It was getting late. We had dosed him with his first round of medication for the night, so I asked him if he would be agreeable to waiting till the nurses came first thing in the morning to see where we stood. He agreed, and we settled in for the night.