Whenever my 9-year-old seizes, he’s coming out of sleep—as though his brain gets stuck in an elevator between the basement of REM and the lobby of consciousness. Around 5 a.m., always on a day, I couldn’t predict, his 50-pound frame starts to tap and jerk, keeping an awful rhythm, and, for too many seconds, he cannot say his name.
Seizures are the latest in a litany of medical and developmental challenges that have puzzled his doctors for the last seven years, beginning with the morning his blood sugar dropped to 27 mg/dL. A normal range is around 70-100 mg/dL. We have medication and genetic test results, glucometers, and nutrition plans, but we have no guarantees. My husband and I take turns easing liquid medicine into his mouth twice a day, pricking his finger when his energy lags and blending a protein smoothie for him at night. We follow the rules, try to make a contract with our boy’s beautiful brown body. But each time he seizes, we are left without recourse. We hold him and push the record on the phone as though gathering evidence could ever be enough.
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I thought we’d be in a different place by now. It’s a phrase I don’t dare say aloud following his seizures or doctors’ appointments. It would strip me down to my last skin, expose me as a mother. Was I a fool for having expectations, for assuming that medicine or prayer or time would be enough?
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It’s a phrase that’s tapped quietly at my soul for years, even before my son became sick. Each time I’ve learned a Black person was killed for walking with iced tea or Skittles or a cell phone, killed, even, while sleeping, a tiny piece of me, perhaps one bit of marrow untouched by skepticism, courses through and cushions my bones: No, this can’t be. Not again. Sometimes disbelief is the closest thing we have to hope.
As Black parents, we have The Talk with our kids. We write up the contract, we follow the rules. Hands at 10 and 2; always say “Sir”; ask before you reach. Still, we find ourselves left naked and wanting by systems devoted to protecting whiteness. We hold our phones and push records, hoping the world will be able to see us this time, or at least not look away.
So what follows that first phrase is another: I should’veknown better. As though the only thing worse than experiencing racism is failing to anticipate it. As though the only thing worse than my child seizing is being surprised by it. I sit at this intersection of motherhood, an intersection of vulnerabilities, really. Mother to a Black and medically complex child during a pandemic, in this country, where I naively believed we’d be in a safer place by now.
I am used to the waiting. Waiting on science to discover my son’s diagnosis. Waiting on people who thrive on privilege to be held accountable. And now, as I wait for COVID-19 vaccines for children under 12, I am reminded once more how hard it is to keep going amid uncertainty, disappointment, even fury.
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When it comes to COVID-19, though, science is doing its job. We have multiple doses of multiple vaccines—a surplus in this country while other countries lack. We are likely a few months, painfully long months, yes, but just months away from eligibility for kids. So while I would love an emergency use authorization for those shots tomorrow, the FDA, which asked for manufacturers to expand their trial sizes in order to detect any potential side effects, is not the target of my ire.
It’s the American-bred hubris, serving as a shield of protection for some, a dagger to others, that leaves parents like me equally enraged and exhausted, forced to play roulette with our children, when we shouldn’t have had to gamble, not like this, not this late in the game.
We can study the data: COVID-19 dashboards cataloguing the infected and deceased; line graphs climbing a threatening red hill; case studies documenting outbreaks in schools. There are so many numbers, updated daily, that the zeros, representing thousands sick and dead, can start to look like nothing. But they all tell a similar, disturbing story: the more contagious Delta variant loves to find and exploit the unvaccinated.
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It’s true that children tend to fare better than adults when infected. Less than 2% of children with COVID-19 have required hospitalization, according to the most recent data from the American Academy of Pediatrics, and less than .03% of infected children have died. But said another way: young children without agency—with whole lives not marked by a percent sign, not expressed in decimals—have become very ill, and some have died. These children were not three-hundredths of one percent to their parents, their siblings. They were glorious beings, housed in bodies that ultimately betrayed them, because politicians and religious leaders and American systems, designed to see some of us as fractions, as dispensable buffer, betrayed them first.
The waiting, I’ve learned, is never passive. I give my son his medicine and take him to the best hospitals. I surround him with rich Black literature and explain why Daddy must wear a blazer to meetings. In some ways, the pandemic’s “waiting room,” with its to-do list feels awfully familiar. I’ve been vaccinated and masked. I’ve kept hand sanitizer in cup holders and handbags. I’ve prayed and researched and bent the thin metal strip over my son’s nose, tightened the straps behind his ears, before he walks into school.
The difference with COVID-19 is that we know what works, even as we wait. We are not being asked to solve a genetic mystery or dismantle entire systems of oppression in a matter of months. We are being asked to get vaccinated if we can, to wear a mask and keep our distance, to get tested and wash our hands. Elected officials like Ron DeSantis and Greg Abbott, who act as though mitigation measures are a greater threat than the virus, make it harder to imagine an end to this pandemic. Such arrogance, in the face of death, death that is more likely to affect Black and brown families, makes me want to burn it all down.
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But the science is here, and the science is coming. And I have to hold onto a sliver of hope, even as numbers of pediatric COVID-19 cases surge, because health care workers are still showing up, through personal and global tragedy, through hurricane and packed PICU floors. Because I am a mother, and I owe the preservation of my imagination— one piece of my mind unclaimed by dread and defeat—to my three young children, maybe even to myself. I have to believe that, at least when it comes to COVID-19, this period of waiting for protection will soon come to an end.
That does not mean that I have to turn away from an ugly truth. “We placed our petty conveniences on a pedestal, clung tight to ignorance—and made our neighbors a sacrifice,” ICU nurse Kathryn Ivey tweeted this month. Now more than ever, these neighbors are children. Parents are left adjusting masks, gripping phones, taking pictures before first days of school, praying FaceTime will never host our final moments with our kids, as though bearing witness to our children’s vulnerability could ever protect us from grave loss.