My son Sam did not have covid-19. Instead, in April 2019, he was diagnosed with Ewing’s sarcoma, a very rare bone cancer. Instead of an ambiguous course of hand-washing and generous amounts of hand sanitizer, we faced 17 rounds of chemotherapy, radiation and three surgeries. His body and immune system were put under siege. His treatment and care required our family of five to retreat from friends, from work, from almost everything and everyone, except each other. The isolation has been physical, emotional and mental. There have been many days of pure exhaustion and a pervasive feeling of dislocation from our community.
So, I have a sense of what you are starting to experience. I know many people, especially parents, are deeply anxious about the unknowns. But I can also tell you this: Once you accept there are things beyond your control and focus on what is right in front of you, there is much to be gained.
For nearly all of 2019, interaction with friends became scarcer. Their love was there, but we were alone. We were not able to have the comfort of their presence, sometimes not even by phone, and certainly not in person. The text message check-ins kept us sane.
It sounds bad — and it has been. But something else happened along the way. As the days and weeks turned to months, our life slowed down. Increasingly, I was not so eager for time to fly by. I was more interested in the moment and finding simpler things to appreciate in each day.
We, as a family, changed. We talked to each other more intimately and lived our lives more urgently. We stopped being distracted by the outside world. Some nights, as we slept uncomfortably at Johns Hopkins Bloomberg Children’s Center in Baltimore (51 nights and counting!), we would discuss — late into the evening — politics, sports and history. We laughed about inane tweets and shared goofy online videos. We were isolated from the outside world, and in our case, the world was moving on without us, but somehow that became okay, too — or at least less relevant. We had each other, and we had time. Time together. The same is true of our life with our daughters.
Knowing that at a moment’s notice we could be rushing to the hospital, sometimes late at night, we tried to focus on the time that we had, the times when things were good. We stopped worrying about whether they could be perfect.
And though we were self-isolating, we were not always alone. Somehow, we met the parents of John Benjamin Varney. John passed away in March at age 19 after a valiant battle with osteosarcoma. Amid their own impossible struggles, John’s parents helped us more than they will ever know.
We were almost at the end of this exhausting and life-changing year, with one last chemotherapy treatment to go, and suddenly, we were asked, like everyone, to go into isolation again. This time it feels a little crowded. But if there is one thing I have learned in our year of social distancing, it is this: The most important thing is health.
My son’s recovery, along with the health and recovery of so many others whom you may never meet, now relies as much on your social distancing as on mine. But if you slow down, you might want to hold on to these coming weeks a little longer than you think. Please be safe. Please be considerate and compassionate.
And most of all, take time to appreciate what you have, not what has been lost. Things return. Lives do not.