I watch you hold her tiny, limp hand. She does not wrap her fingers around yours like babies her age would do. You run your hand over her wispy hair, but she does not look at you. She does not smile. A day has never passed that you have seen her whole face, absent tubes and tape. She is not normal, she is not healthy, and she never will be.
We have spent the past 5 months ordering tests, consulting the experts, and trying new medications. We have spent hours talking to you, explaining to you the prognosis, the options, and the plan. I know you have done your own research and spoken to your own consultants and even other parents whose children have the same disease. You are educated, dedicated, unyielding, and fierce. You are her mother.
Hirni K, Carter B. Hearing Others’ Perspectives When We Hear, “Do Everything!”. JAMA Pediatr. 2015;169(5):423-424. doi:10.1001/jamapediatrics.2014.3699