New Eyes

This little piece was born out of a "scrap"—two words written in a notebook about something my son Daniel did a long, long time ago. It was the result of a writing exercise during a creative nonfiction workshop titled, "This is not (just) a sad story" conducted by Nora Borealis. Someday I may rework it into a longer piece, but for now here it is the way it came into the world.   We all look for solutions, even 4 year-olds. Doctors have said my son will die. For the past 48 hours he has had one apnea spell after another. I am tired. I should go home, take a shower, and rest a little, but "What if he dies?" I ask my husband. "He won't die," answers Daniel in that nasal voice he uses even now when wanting to emphasize something. On the wall are the post-it-notes the nurse put on display for Caleb as a sweet gift from his older brother. Each one contains a piece of the "blood machine" Daniel has designed to cure him. There we...

She asks if my son is happy. "Well, he has been irritable for the past couple of days... but when he is home on our living room floor he is happy, rolling back and forth, vocalizing." Why do I feel the need to quickly add this? I am afraid she is going to link my answer to her conclusion on whether or not he has good quality of life. She asks if my son recognizes me. "Oh, yes... and he knows dad, and brother, and Mari, his caregiver. And I am pretty sure he knows his teachers and classmates." My son recognizes me, but does he know I am his mother? Does he love me? Does he want my attention more than he wants Mari's?  She asks if he uses any signing, if he reaches for toys. "No, not at all. He is very delayed... even compared to other trisomy 13 kids... but I don't mind." I want her to know, even though she most likely knows, that not all trisomy 13 children are the same. He is not it . He is just one from a wide spectrum. She...