I have a medically complex child. I've been waiting for the day to get him vaccinated, and now I can finally breathe.
- My 7-year-old is a medically complex child, and the pandemic has had me on edge about his safety.
- I am fully vaccinated and was anxiously waiting for his turn to get the vaccine.
In late February 2020, my medically complex 5-year-old landed in the hospital with ragged breathing from a run-of-the-mill virus. "They can go from fine at breakfast to the PICU by dinner," his pediatrician had said, referring to the pediatric intensive care unit, before sending us to the emergency room, where they admitted him for mild breathing support.
My son has a thick medical history that includes bouts of aspiration pneumonia and asthma, but his life-and-death diagnosis is epilepsy, and illness makes him more vulnerable to seizures.
Over the next few days, I snuggled with him in his hospital bed, reading about the novel coronavirus, and not even a little bit foreseeing what would happen two weeks later.
Staying at home was easy-ish
I had enough privilege to keep us safely home. But I was still anxious about balancing his school and therapies, my work, and our emotional needs without any of our usual extra support.
At home, I could navigate inside a daily schedule that accommodated some of our individual needs. My son requires hand-over-hand support for most activities, and I need quiet to complete my thoughts and work.
The actual hard part was, and somewhat still is, I could not address the ceaseless thoughts and questions that accompany being 5, 6, 7 years old. My son is nonverbal; I can ask him questions, and he can respond with some sounds and a bevy of facial expressions, but I'll likely never know the depths of how he felt about our time at home, his return to day care, or what might happen next.
In prioritizing his need for intensive therapeutic interventions, we didn't do much more than frequent trips to the neighborhood playground's wheelchair swing. The months passed, fueled by hope for vaccination and free-range anxiety that we were going to pay steeply for my not keeping him home.
As soon as the vaccine was available, I knew he was getting it
Not long before Centers for Disease Control and Prevention approved pediatric shots, the local behemoth hospital system opened scheduling throughout their community pediatric primary-care offices but did not include his, which exclusively serves medically complex children.
It was one more infuriating reminder of how easy it is not to take disabled people into account, how
Minutes after the CDC's endorsement of the vaccine was announced, I started refreshing vaccines.gov and pharmacies' websites, though nothing updated that night.
By 4 the next morning, unable to fall back asleep after tending to a seizing child, I refreshed the sites again. A pharmacy's schedule populated with pediatric appointments starting four days later. It was both that easy and that hard, just as it had been when I scheduled my appointment almost 11 months earlier.
I talked up the shot as if we were going to see his beloved Selena Gomez. I told him which of his friends were getting theirs, too. On the drive, my son punctuated his car-seat dancing with joyful noises.
The shot itself was nothing like any other he's received, but the pharmacist was ebullient as she pressed a sticker onto his bib that declared his new vaccination status. He danced again the whole drive home.
For now, nothing has changed. But soon, he'll be able to snuggle people he hasn't seen in almost two years. I'll feel comfortable traveling for Christmas. If all goes well, in the new year, we'll return to church. In the spring, he'll be able to start playing baseball. I so very badly want all of this and more.
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