Louise (also an alternate name) is an 8-year-old with a gentle temperament and a great sense of humor; she has taken quarantine gracefully. Louise is nonverbal, though, so we don’t know exactly what she makes of this strange time. Medical crisis has defined Louise’s childhood — her underlying diagnosis is a muscle disease called nemaline myopathy — so being stuck at home because of a medical crisis that doesn’t cause her body pain or make it difficult for her to breathe might feel like a stolen holiday.
In the first two years of Lee’s life, Louise was gravely ill and often hospitalized. Her longest P.I.C.U. stay was a biblical 40 days, during which Sam and I spent days together in her hospital room and took turns staying the night. We’d each see Lee, separately, for about an hour either in the morning or at bedtime on alternating days and hand her off to grandparents and babysitters the rest of the time. Whether I was a ‘‘good-enough mother’’ to Lee at this time seems like a cruel and obtuse question — for one thing, Sam and I shared every aspect of the extraordinary parental load, keeping Louise alive and free from pain and making sure Lee was well cared for while somehow continuing to work.
All four grandparents contributed heroically when Louise was in the P.I.C.U., watching Lee, ferrying my pumped breast milk home to her or sitting with Louise while Sam and I met with doctors or went to work for a few hours. But my mother was right; Lee relied on her especially during those hospital stays and in the aftermath when Sam and I came home hypervigilant, depleted and dazed — our nervous systems attuned to urgent threats, not daily life with small children. Which, come to think of it, was exactly how I’d been feeling in quarantine. If I was reminded of the trauma of those years, was Lee?
Lee insisted that she would act as Louise’s nurse for the trip and that I wasn’t to do any procedures like airway suctioning or G-tube feeds without her.
Scarleteen has a fantastic collection of articles on sex and disability. While I typically only share resources about care work or directed to the...