I'm a writer and university professor. Parenting my 21-year-old son with severe disabilities has taken a toll on my career, and COVID-19 is making it even worse.

·3 min read
Marie Myung-Ok Lee and her son
Courtesy of Marie Myung-Ok Lee
  • My son is 21 and has an intellectual disability and recently caught COVID during the Omicron wave.

  • For two years, all we've done is try to protect him from COVID-19, and then he tested positive.

  • His communication skills mean he can't necessarily tell us if something is wrong, and that's scary.

J, my son, who I refer to by his first initial for privacy reasons, has a severe intellectual disability. He is 21, but according to tests, his mental age is similar to that of a kindergartner, and his communication ability may be below that level.

When we were in lockdown in 2020, we could control who came into contact with J — no one.

Last year, even though we sent him to school with KF94 masks and pulled him out four days before the holiday break to be safe, that second pink line on his COVID-19 test felt like a moral failing on my part.

He can't tell us how he feels

Because we've cared for him this long, including during stints in the pediatric intensive-care unit, our apartment is a bunker supplied with various tools — a digital no-touch thermometer, a pulse oximeter, broad-spectrum pain relievers, and even portable oxygen.

But because of the nature of his intellectual disability, he can't tell me whether he has a headache or a sore throat — or that he's lashing out simply because he's bored or disappointed.

Being able to care for him, following this kind of intuitive nursing and diagnosing, is predicated on me being healthy and clear-brained.

During his first night of having COVID-19, his fever spiked to over 100, which spooked me because it was the same reading my cousin's husband had in March 2020, when he eventually had to be intubated. I spent a lot of the night agonizing outside his closed bedroom door, hoping to hear rustles and wanting to go check on him but also wanting to let him sleep undisturbed.

Thankfully, 11 days and a Jenga pile of rapid and PCR tests later, J is out of quarantine. But COVID-19 is a constant threat.

We decided to keep him home with us, but now I'm behind with work

A few students I know have had COVID-19 three times. So I don't understand the lack of planning for J's first day back at school, where masks and vaccinations are not required.

My university announced it would be remote for at least the first two weeks back. We had little choice except to send him in. He must have some level of immunity, but no one knows how long that lasts.

The teacher who drives J tested positive. The next day, the teacher who is the backup driver tested positive as well, which meant J was exposed at least twice again. My husband brought J to school on the subway but reported a disturbing lack of masks and crowding.

My work began piling up. When we got an email about yet another anonymous school exposure, the circuit breaker in my brain tripped. The aggregate risks were just too much. I made a unilateral decision to keep him home, which didn't make 100% sense, but it didn't not make sense, either. His teacher gave me lessons I could do with him at home. We also do enrichment activities.

My inbox, in the meantime, filled up with nudges from editors: "Just a reminder, the piece is scheduled to run on Wednesday." I plugged up stuff where I could and hoped the dike would hold.

I want to be a good parent and a good writer. I insisted on working, no matter how slowly. With COVID-19 coming back every time we think we are "done," I don't even want to speculate how long my next book is going to take.

I can only move forward and do my best to keep my child safe.

Marie Myung-Ok Lee's novel "The Evening Hero" has taken her 18 years to complete. She teaches fiction at Columbia University, where she is a writer in residence.

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