We've Isolated Our Medically Fragile Son For 3 Months: When And How Do We Return To Our Real Life?

by Elizabeth Baker
Originally Published: 
We've Isolated Our Medically Fragile Son For 3 Months When And How Do We Return To Our Real Life?
Courtesy of Elizabeth Baker

Since March 18, my family of five has been almost totally isolated with my parents at their rural property in the Piney Woods of East Texas. We live in a busy suburb of Houston, so when the stay at home orders were issued during my three young children’s spring break, we decided that making the two and a half hour drive from our home to what we affectionately call “the ranch” would be best for our mental health. The property includes a huge house with separate bedrooms for everyone and plenty of space to spread out, as well as 36 acres of outdoor space with hiking trails, a pool, and a long winding driveway, perfect for scooter riding and sidewalk chalk masterpieces.

However, the main factor in our decision to all but abandon our life in Houston was the safety of our oldest son Grayson, who is nine years old and is medically fragile. Grayson is profoundly disabled, and the rhythms of a typical year for us include several hospitalizations for viral infections that most children would simply ride out and recover from at home.

In early March, I had two main fears for Grayson: 1. He would get COVID-19 and the infection would threaten or end his life, and 2. He would become ill with any other virus and there wouldn’t be a hospital bed available for him. I am no longer as worried about the latter, as Grayson’s doctors have assured me there are plenty of open beds in our children’s hospital, but fear #1 still nags in my anxious brain as I decide how to navigate the coming weeks and months for my family.

I know that typically, children are not as affected as adults and recover much more easily, but Grayson is not a typical child. He spent two weeks in the hospital last year with the flu, and has repeatedly had to be hospitalized for strep throat. We have no idea how his body would respond to a COVID-19 infection.

I recognize and appreciate the enormous privilege of having the option to totally isolate our family from the world for almost three months now. My husband is a high school teacher, and was able to finish his school year conducting Zoom calls with his students here in East Texas. His paycheck was unaffected, and he has had endless hours to spend with his kids.

Courtesy of Elizabeth Baker

I work two part-time jobs, one as a managing editor for a parenting website, and one as a receptionist for a pet care facility. My editor job is always done remotely, so there has been no interruption, and my boss at the pet care facility has been extremely generous in letting me take this time off to care for my family. Economically, especially with the stimulus money that made up for my lost wages, we are unaffected, and I am grateful.

As Texas has begun to open back up, I’ve watched my social media feeds explode with friends and acquaintances getting back to “real life.” There are selfies from women sporting fresh highlights, manicured nails, and sharing drinks on a restaurant patio with friends. I’ve seen people back at their gyms, at socially-distanced church services, and their kids back at gymnastics class or playing in the street with friends. And although I admit these pictures are a bit jarring, I don’t judge these people. I truly believe most people are in fact concerned for their neighbors, and their individual risk-assessments and subsequent choices are in no way an insult to my family and our vulnerable son.

My struggle now is mostly with my own risk assessment. How do we continue to protect Grayson from this virus, but also consider the lives of the rest of our family? As ideal as our current living arrangements are, this is not a long-term solution. While it’s easy enough to continue to ignore my grey roots, I can’t ignore the social and emotional needs of my children. They have had zero engagement with other kids for a quarter of a year now, save for their awkward Zoom meetings with classmates, which I’m not sure count.

My daughter is supposed to attend sleepaway camp for the first time ever in July, and I’m desperate for a concrete, definite answer to the question of if we should allow her to go. But there are no concrete, definite answers, and any sort of opinions I get online are politicized and don’t fully relate to our context-specific situation.

As the calendar continues to flip from one month to the next, I question if staying here, isolated yet comfortable, is not only an attempt at protecting my son but also a result of my being paralyzed with indecision. Yes, I do believe COVID-19 is a serious threat and I can’t ignore the 100K+ American deaths so far. But today, it’s impossible to judge the real impacts of this quarantine, either positive or negative.

Have I saved my son’s life today or am I just avoiding the inevitable return to a society that will always be full of risk for him? Is my children’s exposure to a lot more nature and outdoor space than they have at home a net positive, or is their social and emotional growth being stunted by not having any interaction with their peers?

This pandemic isn’t going anywhere anytime soon, and eventually I’m going to have to figure out how to live in society while managing the very real risk to my vulnerable son. A forever lockdown simply is not an option. At some point, I will have to go back to work. My children will go back to school. We will reconnect with friends and neighbors.

I just wish I knew, for sure, when the best time to leave this beautiful bubble — full of safety, but absent of real life.

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