How a Game With My Daughter Helped Us Cope With Quarantine and the Past
toy giraffe in a backyard

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.

Read more in The New York Times.

This is an external article from our library

Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection.

Have a great story about care work? Use our contact form to submit it to us so we can share it with the community!

Related Articles

The Man in Room 117

The Man in Room 117

Three years ago, when he stopped taking his antipsychotic medication, her son withdrew into delusions, erupting in unpredictable and menacing...

Popular categories

After Caregiving
Finding Meaning
Finding Support

Don't see what you're looking for? Search the library

Share your thoughts


Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.