I Get It. You Want To Restart Your Life. But Doing So Could Kill My Child.

The Four Percent


Quarantine is long and boring.

My 5-year-old repeatedly asks to go to an amusement park because he is sure he is now tall enough to go on thrill rides with his older siblings. My 9-year-old regularly checks in about whether I think she will be able to have a birthday party in August. My 12-year-old asks nearly every day when he can go to the skate park or bike riding with friends, already at the stage where he finds the company of his family decidedly uncool. My nonverbal 13-year-old hands me my car keys daily then walks to the front door to let me know she is ready to go somewhere, anywhere, that is not home. 

The answer to all of them is always the same: We can’t because of COVID-19.

Lately, these conversations have become more difficult. My children are aware that life is starting to reopen around us. They want to know if they can have play dates, walk to the corner store for ice cream or go to the playground. They want their lives to resume, as we all do.

I, too, miss haircuts, meeting my friends for coffee, going to the gym or for pizza. But the answer is still the same: We can’t because of COVID-19.

Even as I watch our friends, and most of America, leave fears of COVID-19 behind, I know that I cannot do the same. My 13-year-old daughter, Claire — the one who asks to go somewhere in the car daily — fits squarely into several high-risk categories for COVID-19 because of multiple preexisting conditions stemming from a chromosomal duplication.

She is immunocompromised. She has asthma and epilepsy. She has a history of heart and kidney disease and has had pneumonia so many times I’ve lost count. She also loves people-watching, being in the water, looking through books and magazines and watching movies. She is a joy to be around, and those who love her want her to be around for a long time and make it through this pandemic.

I am worried and confused that so many are acting as though COVID-19 is a problem that we have already beaten, even as deaths and cases continue to rise.

No one would like to stop socially distancing and rejoin the world more than Claire. But Claire — who normally becomes very sick from a common cold that leaves her siblings with just a runny nose — does not have the luxury of ignoring the still-real risks of COViD-19 because she is fed up with quarantine. In addition to all of Claire’s other risk factors, there is evidence that those with intellectual and developmental disabilities such as Claire are at a much higher risk of dying from COVID-19. To protect Claire, my entire family is continuing to self-isolate, but that alone is not enough to protect her.

As those in our community venture outside and into gyms, movie theaters, museums, retail stores, offices and restaurants, their risk of contracting COVID-19 grows with each and every interaction. That means with each trip someone in my family takes out of the house out of necessity, the risk to Claire’s life grows that much greater. 

As much as I would like to stay in a bubble where we do not have contact with the outside world until a vaccine or a cure is found, that is just not realistic. Claire and her siblings need medications that include controlled substances and refrigerated liquids that must be picked up in person.

Last week, Claire’s younger sister had to be seen by a doctor to treat a case of strep throat. Occasionally we cannot order one of the limited number of foods Claire will eat, and we must go to a store. Claire’s brother has a toothache, and, although I have been hoping the pain will go away, he will very likely have to go to the dentist soon. We also still need to go through our mail and have groceries, cleaning supplies and books delivered. None of this is risk-free. None of it can be avoided.

Before COVID-19 restrictions were eased, these interactions were scary enough, but I made them knowing that nearly everyone with whom I came into contact was likely socially isolating to the best of their ability, which kept the risk of outside contact low.

Now, even though COVID-19 is not going away, the risk is much higher. Everyone around me is having more interactions with those outside of their household than they were just a couple of weeks ago. Neighbors are having dinner parties. The packs of kids I see roaming the neighborhood together are growing larger and more frequent. Friends and family are taking road trips and going to the beach. I understand the desire to do these things. I want to do them, too — when I can do them without putting myself or others at risk. 

But I am worried and confused that so many are acting as though COVID-19 is a problem that we have already beaten, even as deaths and cases continue to rise. Even knowing that COVID-19 is going to continue to spread and kill until about 80% of the population has been infected or we have a vaccine. And even knowing that up to 50% of COVID-19 carriers may be asymptomatic but still spread the virus to others who may become very sick or die.  

Although it is impossible to determine exactly how many Americans are immune, public health experts agree that the number is in the single digits and likely no more than 5%. Hundreds of thousands more deaths will occur between now and when we no longer need to worry about becoming infected with COVID-19. A disproportionate number of those deaths will be among people with disabilities such as my daughter. Many of those deaths will be directly caused by those who rushed to reopen too soon. In Washington, where I live with Claire, the mayor twice moved forward with phased openings, despite not meeting her own metrics for safely doing so.

Even among those taking these risks, many are unwilling to take even the simple step of wearing a mask that could reduce the chance of contracting COVID-19 by up to 85% and dramatically flatten the curve.

Being responsible in the midst of a public health crisis that is nowhere near being over is not a political statement. It is a statement about who you are as a human being.

My local pharmacy requires masks to enter, but there is little enforcement or sense of responsibility from other customers, such as the man behind me at the pharmacy who wore his mask dangling from one ear while he talked on the phone or the woman who removed her mask to sneeze just as I passed by her in the parking lot.  

I can be as careful as humanly possible, but I cannot control for the selfish and thoughtless people who would rather risk someone else’s death than wear a mask or stay 6 feet behind me during what may for them be a completely optional trip out. 

Even sitting in our front yard has become hazardous as more and more people in our densely populated neighborhood head outside to socialize, not bothering to stay 6 feet away from where Claire sometimes sits on the steps with her siblings to get fresh air and feel the sunshine. 

This carelessness and complete disregard for the health and well-being of the most vulnerable is a major failing of our society. These actions speak louder than any words about how the disabled are viewed. If you do not view my daughter and others with disabilities as an afterthought or disposable, you can continue to take steps to minimize your own exposure to COVID-19 and to protect them when you do go out by wearing a mask, staying 6 feet apart and washing your hands frequently. Her right to live outweighs your right to watch a movie without a mask

Even if Claire were not my daughter, I would like to think I would do the same in order to protect both others and myself, since COVID-19 also claims the lives of those who had previously been robust and healthy. 

Being responsible in the midst of a public health crisis that is nowhere near being over is not a political statement. It is a statement about who you are as a human being. Do the right thing for Claire and for all of us.

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