I'm In Isolation, And Terrified That I've Exposed My Immunocompromised Daughter To COVID-19

Suddenly, it’s a familiar story. You were careful for 17 months. You hunkered down, you wore your mask, and you bathed in hand sanitizer. You spent hours online to schedule the vaccine as soon as it was available to you. At long last you were promised a summer that would feel normal. You went back to your favorite restaurant. You went on the vacation you cancelled last year.

And then you found out that one of the vaccinated people you met for dinner tested positive for Covid. You are consumed by confusion. Do you need to quarantine? Should you get tested? And if so, do you get tested immediately? Tomorrow? In 5 days? Can you trust the test you bought at CVS? Do you need to wear a mask around your family? And most of all, wasn’t this all supposed to be over? You did everything right, after all, and so did the people around you.

That’s what happened to me.

But here’s the plot twist: My 16-year-old daughter has a rare disease that makes her highly vulnerable. While her illness is unique – she’s one of just six in the world with her particular dual diagnosis – living with someone who is at-risk, I imagine, is not all that unusual.

I’m now sequestered in the spare bedroom upstairs. And I know how lucky I am that I have a spare bedroom to hide in – that I live in a home where we can easily stay socially distanced. But my being out of commission means that all of the caregiving duties now fall on my husband. He’s the one who needs to dress and bathe our daughter, administer her medications, suction her trach tube, run the food pump, and stay by her side all day long ensuring that her ventilator is running as it’s supposed to. He’s also the one who needs to make sure that our eldest gets to work on time and our youngest has a ride to the beach. And I know that the spare bedroom would mean nothing if I didn’t have a partner I could rely on to step up when I’m down for the count.

At the moment, three days post-exposure, I feel fine. The doctor tells me I need to stay in my hideaway for a few more days, provided I get a negative test. It’s another story altogether if my test comes back positive.

My husband tells me to think of it as a mini-vacation. He says I should catch up on the sleep that’s eluded me for a decade. I have books to read and shows to watch. I downloaded Apple TV so I could see why three of my friends raved about “Ted Lasso.” I’ve brought up a bowl of fruit so I can feel like I’m eating healthfully and a big bag of chips because I’m feeling sorry for myself. A glass of wine would help the vacation mentality, but I can’t find any information about the effect of wine on Covid from my current primary care physician, Dr. Fauci. I’ve put a scented candle next to the bed to help me relax, but it doesn’t seem to be working. I’m finding it impossible to vacate.

Because here’s the thing: If I got Covid from my friend at the dinner, I exposed my husband later that night. And he’s the one who’s now taking care of our daughter. The care she requires is highly specialized; we can’t call in a friend to titrate the cuff on her trach tube, shake a plug loose from her lungs, or replace her gastronomy tube. If he’s exposed, she might be exposed, and to something I brought into the house, even when I thought I was following the rules. And all of it terrifies me.

I think the chain of infection I worry about is a long shot. I remind myself that I’m vaccinated and the chances that I have Covid are slim. The chance that I passed it to my vaccinated husband is even slimmer. But it’s not zero. Granted, in our family we deal with risk every single day. We’ve been living with fear and uncertainty ever since our daughter was diagnosed with a degenerative disease, and we’ve figured out how to carry on hand-in-hand with it.

But Covid is a whole new layer of horrifying. It feels like we’re living in a sci-fi movie that just won’t end – and I’ve always hated science fiction. And so I wait. I burn the scented candle and ask Alexa to play meditation music. I wear a mask even when I’m alone in the room because it makes me feel like I’m doing something to tip the odds. I take the tests from CVS even though it’s probably too soon and count the hours until I can get a bona fide result from the doctor.

And I pray for this movie to be over.