Free The Spirit Catches You and You Fall Down by Anne Fadiman

IV line was bandaged to a board, and sometimes she was secured to her crib as well. “Lia’s IVs were precious,” explained Neil. “The less she moved, the longer the IVs would last.” One Nurse’s Note reads: “2400. IV infusing R antecubital space with signs of infiltration @ 30cc/hr via pump. Father here. Soft restraint to L arm. 0015. Father had untied restraint & placed child on cot on floor. Returned child to bed, soft restraint to R arm. Tried to explain to father reason but difficult due to communication barrier.”
    Nao Kao did not understand why the nurses had tied up his daughter. His confidence in their ability to care for Lia was further strained the morning after this note was written, when he left the hospital at 4:00 a.m. to catch two or three hours of sleep at home and returned at 7:30 to find that Lia had a bump on her forehead the size of a goose egg, the result of having fallen out of her crib during his brief absence. Not only had Lia gotten hurt while under the supervision of people who claimed to know more than the Lees about how to keep her healthy, but those people had then responded to the accident in a manner that, from the Lees’ point of view, was inexplicably sadistic. Foua and Nao Kao believed the best way to keep Lia safe and content, especially when she was ill or in pain, was to have her sleep next to them, as she always did at home, so they could immediately comfort her whenever she cried. The nurses, however, decided to guard against future falls by rigging a net over Lia’s crib and caging her inside, out of reach of her parents’ arms.
    “A hospital is a scary place for any parent,” Vonda Crouse, a physician at Valley Children’s Hospital in Fresno who is on the faculty of the Merced family practice residency program, told me. “You see people wake up your sleeping child to take their blood pressure, take their temperature, check their pulse rate, and count respirations. You see them put a bag on your kid to measure the output of urine and stool. When your child is in the hospital, suddenly somebody else is feeding them, somebody else is changing their pants, somebody else is deciding how and when they will be bathed. It takes all the autonomy of being a parent away, even for folks who have had a lot of medical experience. It would be that much harder if you were from another culture and didn’t understand the purpose of all these things.”
    Aside from the time Lia fell on her head, one or another of her parents was almost always present around the clock during her hospital stays. Some typical Nurse’s Notes: “Does not like to be separated from mo; relaxes when held by mo.” “Is quiet as long as mom holds her, otherwise screams most of the time.” “Child is happy & babbling, plays with toys. Mom here. Babe content.” “Being carried papoose style by fa.” “Mother here & breast feeds eagerly. Cruises sides of crib. Makes baby sounds.” “Awake, walking around to the hallway with the father then returned to the room. Father trying to put her back to sleep.” “Baby was in wagon sitting up and had generalized seizure lasting 1 min. Father grabbed her right away no injuries.” “Mother holding. No seizures this shift. Up in mom’s arms, waves ‘Bye Bye.’”
    The MCMC nursing staff came to know Lia well—better, in fact, than most of them would have wished. After she was old enough to walk, whenever she was well enough to get out of bed she ran up and down the corridor in the pediatric unit, banging on doors, barging into the rooms of other sick children, yanking open the drawers in the nursing station, snatching pencils and hospital forms and prescription pads and throwing them on the floor. “You’d hear that Lia was in the ER,” recalled Sharon Yates, a nurse’s aide. “Lia, Lia. Oh please, you’d say, don’t let her up! But up she’d come.” Evelyn Marciel, a nurse, said, “Lia was a pretty girl, soft and cute and fast. Her mother