Children are resilient. We hear this all the time. Some of our friends have been tested with geographical moves, while others have been tested by months of chemotherapy. In our family, our children’s resilience has been tested by surgeries and, like everyone else, a change in their social routines.
The theory of resilience goes that when we are tested, we undergo a shift, an adaptation, in order to accommodate the change in our surroundings. Our resilience then is our ability to survive this change, but we’re forgetting to talk about the effect on our quality of life.
“I don’t think life is supposed to be easy. I think that’s the point.”
–Tunde Oyeneyin, Peloton
One of my favorite cyclists on Peloton spoke these words over the weekend, and it was a breath of fresh air (during a trying ride in my musty basement) to hear someone else admit this difficult fact. I also don’t think that life is supposed to be easy, and I am willing to brave whatever storm comes so that my children do not have to suffer at the hand of my negligence.
Just because children are resilient doesn’t mean we should exploit them. We can stretch them and shape them, but we should also be strong for them, and that means opting for self-care that doesn’t risk spreading a deadly disease.
Yet all children are not created equal, and not all children are as resilient as others. When Hope goes to school, she requires someone to help her in and out of her coat, to open and close her backpack, to open and close her snack, to guide her to and from the bathroom where they pull up and down her pants, to help her navigate her three different therapies and now the voice output app on a school-issued iPad. The amount of physical contact required to help Hope fulfill her social and emotional needs throughout the day is remarkable. And each adult who helps her during her day adds an exponential risk to her health and to ours once she arrives home.
Similarly, we know we are also responsible for the adults caring for her at school. We understand fully that the decisions we make at home will have a direct impact on the adults who are handling Hope’s belongings and who are in close physical proximity when she drools or sneezes.
I guess this is called civil society, where our private interests (e.g., the need to socialize) and public interests (e.g., wearing masks to protect others) intersect. But it turns out that many people don’t believe we live in a civil society—they believe only in their own private interests and think others should do the same. If we were to follow suit, disability rights would disappear and public health wouldn’t even be a commonly spoken term. We would watch out for ourselves, hope for the best, and turn to private doctors accepting private insurance charged to us by our employers, assuming we have one.
Hope would lose access to her education. Henry could lose his place in a club or on a team because of what would become an acceptable resistance to modifications that might be required for his successful participation. We would rely on the goodness of people’s hearts to get by, or we’d buy our way in if we could afford to.
If we don’t stop looking out only for ourselves these next days, weeks, and months, our schools might shut down. (You might be reading this from within a district that already has, and if you are, I am so very sorry.) But if the schools in our town close, Henry’s deficits in pragmatic (social) communication will increase, although I think with enough practice from such a young age, he will bounce back; his resilience will be tried and proven. But Hope will lose. Hope’s foundation will crumble beneath her and it will be up to us, her family, to figure out how to keep her standing long enough until she can return to the eight or so adults who keep her moving forward every day.
Before you partake in any COVID high-risk activities, such as socializing indoors without a mask, ask yourself if the risks you are willing to take with your own family’s health are worth taking with mine. Because as it turns out, no matter how many people wish it weren’t so, we do in fact live in a civil society and we are actually responsible for one another, no matter how difficult that can feel.
Hope’s equitable place in this world hinges on your ability to control the urge to return to a time that no longer exists. The present is happening now and we must be in it if we are going to survive it.
If you can’t do this for yourself, do it for Hope. I promise, when the time comes, she will reciprocate ten-fold the love you’ve shown her in this moment.
“Love your neighbor as yourself is one of the greatest commandments Jesus tells us. And I firmly believe one way we can love our neighbor—one way we can love each other—is being abundantly cautious when it comes to this pandemic.”
–Reverend Andy Olivo, St. Elizabeth’s Episcopal Church, Ridgewood NJ