This week marks two months that I’ve been quarantining at home with my mom. My last excursion before the lock down was to my class at Temple University on March 10. None of us in class were certain if the semester would continue, as COVID-19 seemed on the verge of breaking out in the Philadelphia area. Class went on as usual, but within 48 hours it was clear that we wouldn’t be meeting in person again. The NBA suspended its season the next night, and the day after that Pennsylvania’s governor shut down non-essential businesses in my county due to a burgeoning outbreak. My hockey team’s game that weekend was cancelled, and classes moved online for the semester. As the reality of a lock down suddenly stared us in the face, my mom and I grew increasingly concerned about having nurses in our home every night. After prolonged discussion with the agencies that employed them, we temporarily halted care. I think it was the right decision to make, given what we know about the virus. But that week was incredibly stressful. We had to weigh the risk of transmission between my nurses and I with the burden that would be placed on my mom without any outside help in the home. I’m sure that my family hasn’t been alone in this dilemma. Many of you are probably facing similar decisions. It feels as though there isn’t an absolute solution here. Obviously, it would be ideal if we all stayed completely isolated until a vaccine becomes available. But this isn’t possible for everyone, particularly those of us with complex medical needs. The calculus is going to be different for everyone. Parents who are deemed essential personnel and whose work schedule hasn’t changed much may have no choice but to continue nursing coverage, and who could blame them? Single parents, or parents of multiple disabled kids in the home may also have a greater need for help from outside caregivers. Certainly, everybody’s situation is unique. In our case, we’re allowing one nurse back into our home this week with proper precautions as a way to alleviate the physical stress on my mom. It’ll be the first help we’ve had for nearly two months. I’m sure it will be nerve-wracking at first, but I’m lucky that I trust my nurses and agencies to be as safe as possible. That’s more than many people can say. Managing caregivers is one of the most stressful parts of CMD even in regular times. As we’ve welcomed them into the home every night, they become almost extended family members. I’ve developed close relationships with many nurses and home health aides over the years, and when I paused my coverage two months ago I felt awful for leaving them potentially jobless. They each understood the situation and our concerns around virus transmission. The endpoint of this pandemic is indefinite and unknowable. As much as we want to, we just don’t know what is going to happen in the long-term. Without any definite answers, we all have to do what is right for each of us as individuals and as families. I hope that everyone in the CMD community has been safe and healthy over the last two months. For however long this pandemic lasts, I’m grateful that we have an enormous amount of communal wisdom to draw from. I’m sure that we’ll all be needing it. Author: Luke Hoban