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Parenting in the shadow of scarce ventilators

Syracuse University law professor Cora True-Frost with her

Syracuse University law professor Cora True-Frost with her children Phoebe and Leo, who has athetoid cerebral palsy. Credit: Cora True-Frost

As a mom, I have the same concerns as all parents during this pandemic: identifying and accepting my children’s feelings, limiting their screen time, discussing appropriate tone in texts, and managing their studies.

But as the parent of a child with multiple disabilities, I am a member of a select tribe. Many of us already have nearly lost or already lost a child. Many of our children already have been or are currently on ventilators.  We know the agonizing vigilance that comes with prolonged, uncertain hospital stays, even during socially undistanced times.

Isolation, uncertainty, worry, and fear are not new to members of our tribe.  Neither are scarce resources. Technology often keeps our children alive, and we are constantly reminded of the fragility of life. Pre-pandemic questions included: Will the nutritional supply company send on time the formula that keeps my son alive, or will an insurance snag hold it up? Will the nursing agency find a replacement for the nurse who just quit without notice? Will the wheelchair-repair company finally deliver the long-awaited parts? The pre-pandemic answers were disheartening enough. Now it’s downright terrifying to imagine what supply chain disruptions, no staffing help, canceled appointments, and system overload will mean not only for my son, but also for the many people whose lives rely on supports and assistance beyond the norm. 

Children like ours are mostly invisible in media coverage and in government policy. Since early February, we’ve been bombarded with COVID-19 updates from the Centers for Disease Control and Prevention while I anxiously await news of its possible effect on my family and my son. It was not until last week that I saw the first article even mentioning the risk of COVID-19 to vulnerable children like my son, children who are respiratorily at risk, even during the best of times.  

Leo is an engaged, social, and happy fifth-grader in a mainstream classroom.  Like J.J. DiMeo from the sitcom “Speechless,” Leo uses a speech device to speak, a wheelchair to ambulate, and a gastrostomy tube for all of his nutrition. Leo’s disabilities have unnecessarily socially distanced him and our family since the beginning of his life. Leo thrives on human connection; he is funny, clever, social, and is happiest when in the company of people. But coordinating my son’s inclusion is complex and time-consuming. Playdates at friends’ houses or local amusement areas have not been possible because of architectural barriers, and sometimes, attitudinal barriers, too. After-school programs and school sports are not inclusive so as my son has aged, his friends have joined activities or teams, leaving him behind.

Since the early days of this pandemic, I have vacillated between hopeful, magical thinking, and dire projections. In the absence of any mention of children in vulnerable categories, I’ve hoped against hope that maybe all kids are somehow immunologically invulnerable, as the media suggests.  I’ve also spent many sleepless nights, remembering the sounds and smells of the Intensive Care Unit, where we spent the first month of my son’s life and where we have had to return on one more than one occasion. I don’t want to go back there, but I’m worried that COVID-19 will strike my son. As global leaders discuss ventilator shortages, striking fear in many hearts, “exceptional” families worry even more that we will be last in line for ventilators. We have seen and experienced the enduring eugenics — the belief, as wrong as it is persistent, that some types of people are more worthy of life than others — that permeates our societal attitudes and social policies, and we deeply fear for our children’s future, especially during this time of crisis and scarcity. Our children are vulnerable. They are also bright, loving, and loved. We are afraid.

When our society returns to its new normal state of affairs, I hope that all of my family members will be here to enjoy it. I hope that all parents who are now sequestered in their homes will remember how this COVID-19 isolation felt, and that we will all join together to advocate to make our world, our schools, our policies, and our social practices more inclusive and equitable.  Maybe, just maybe, if you are bored at home right now, you might consider using that spare plywood in the garage to build a portable ramp so that your kids’ wheelchair-using friends (and your elderly parents) can access your home. Or maybe you’ll reach out to an old friend with whom you lost touch since they or their kids developed health problems. Ask them how they’re doing. And be ready to listen to their answer.

When the skies finally clear, let’s make time to move forward together.

Cora True-Frost is an associate professor of Law at Syracuse University College of Law, where she directs the Journal for Global Rights and Organizations and Impunity Watch News. 

 

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