The phone rings. It is 10am and the middle school is calling for us to come pick up our son Sammy. My husband and I exchange glances. “He is only making it for an hour.” After a year and a half, long COVID is still sapping the energy of our child and turning the school that he loved into a constant struggle against fatigue.
Sammy got COVID for the first time during the Omicron wave, just a month after completing his first two vaccinations. We were confident in his layers of protection — the mutating virus was getting milder, he was fully vaccinated, and he was a healthy 9-year-old. He spent his mild sickness in quarantine cheerfully playing video games while masked parents delivered his favorite foods.
His best friend’s mom told me a year later that she heard from her son that Sammy was always exhausted and sleeping in class in the months that followed his first infection. New sicknesses just kept coming for him and he was miserable every day. But summer was a period of rest and relaxation filled with time in the sun and reading his favorite books and we felt certain he would recover.
Sammy started 5th grade on a warm Tuesday in August and tested positive for COVID again that Friday. A month later, while trying to run around the field during PE class, Sammy started to hallucinate. “Mom, there was a tree in the middle of the field, and then it vanished again.”
The doctors ran tests and more tests, and told us the results were all normal, and then never followed up. What could they say when faced with something they couldn’t see?
By December of that year, a virus sent him into coughing fits that landed us in urgent care. “I can’t breathe, I can’t breathe” he panicked. The doctor sympathetically talked about asthma until she listened to his lungs, and then without missing a beat, shifted to talk of panic attacks. It never occurred to her that perhaps he couldn’t breathe in a way that she couldn’t measure.
A month later, and a year after his first infection, our beautiful boy dropped out of school completely. Fatigue, headaches, brain fog, racing heart, stomach pain, and many other small complaints left him confined to bed and chair. His world shrank to the tiny confines of his room and he was kept company by the dragons and wizards who walked through his mind as he listened to his favorite audiobooks over and over. He would watch the squirrels outside of his window and chat with anonymous Roblox avatars on his screen. The child who used to recite his favorite books from memory before he could even read was now exhausted just from thinking as the brain fog blurred his memories and made schoolwork overwhelming.
Desperate for help, we returned again to the medical professionals. They tested him again to “rule everything else out first,” but once they had done so, they didn’t know what else to do. Long COVID clinics in our large metro area rejected our child based on his age, and his regular doctors were sympathetic, but had nothing for us. We sometimes saw that small edge of doubt in their interactions with us as the invisibility of his illness bumped up against the normalcy of his test results. But our family’s life was defined by that sea change, the before and after COVID, from the energetic and happy child, to the exhausted and ill child. We had no doubt.
As parents, we found succor in online communities–not just those dedicated to long COVID, but communities of people who have shared their experiences navigating healthcare and education systems with invisible chronic illnesses. We learned about viral reservoirs, microclots, and immune dysfunction. Without standards of care for long COVID, we have been denied most non-standard medicines for our child, even when I have handed his doctors articles about these same medications being prescribed to adults at long COVID clinics attached to top universities. With persistence and money, we have been privileged enough to access some care outside of our insurance company, and have seen some improvement.
It is a struggle not to feel abandoned and left behind by a society so eager to see the end of the pandemic. In my darkest hours, I fear my child will now face a lifetime of disability and pain. But other times I think I must follow his example. He has recovered his equanimity and is cheerful in the face of this long struggle and finds joy in many things, including the cat that we have adopted, and the beautiful view out of the window next to which he spends so much of his time now. In the meantime, we will look for more places to find joy as a family while we rest and wait, hoping that his suffering and that of others with long COVID will be seen, and that help will come from the medical researchers, either in a cure, or if not, in new medications that improve the quality of life of those suffering from post-viral illnesses. We developed the vaccines for COVID in record time, and now it is time to dedicate equal resources and urgency to lift the burden of chronic illness created by long COVID.
