As with any work environment, there were clashes between the staff, scheduling conflicts, holiday- and cold-season staffing woes, and legitimate human error. To avoid the consequences of these typical work dynamics on our son, my husband and I developed standard procedures for drawing up and administering meds, transferring our son from wheelchair to exercise mat, and keeping stock of our inventory of medications and supplies. We installed a video monitor in his bedroom and a master schedule for everyone’s comings and goings.

Prior to my son’s illness I had run an organization with 60 employees. I prided myself on being open and collaborative and encouraging of different points of view. At home I was overbearing. Depleted from the extremely long hospitalization, and traumatized by seeing my son with this dreadful illness, I found myself resenting all of the people who were there to help us care for him. I did not want them in my home. I did not like being interdependent with so many people just to keep him safe. I did not want the stander and wheelchair in my living room, the bath chair in my shower, or the sounds of the churning pump and the pulse oximeter's alarm. I did not want to tell everyone who walked through my door to wash their hands and I was tired of the smell of Purell on mine. I did not want to spend my time making phone calls to insurance companies and doctors’ offices and billing departments and medical-supply companies. In short, I did not want to run a hospital. Most importantly, I did not want my son to suffer for even one more day.

But there was no choice. After hearing a nurse refer to my son’s bedroom as “the nurses’ room,” I went about reclaiming our space as our home. It was time to start making our days as joyful as they could possibly be. I played upbeat music, cooked delicious meals, and rearranged the living-room furniture so the new equipment could be tucked away when not in use. I accepted the messiness of our bedroom and the excessive recovery-related clutter of our living room. I took down some of my son’s old artwork (which had started to feel like a shrine to his pre-illness self) and put up new projects he and his home-based teacher had worked on together, her hand guiding his. His walls began to change and evolve as he did, showing his growth and progress and recovery.

He now attends a wheelchair-accessible neighborhood school, accompanied by a nurse at all times. Nurses continue to work overnight, but there are several hours each day that we are home, just the three of us, a family. He is still non-verbal. The feeding pump continues to churn. The pulse-oximeter alarm goes off far less frequently. He takes much less medication. Although the broken systems of supplies and insurance persist, we have figured out how to navigate them with our senses of humor intact, most of the time. I wonder if our son would have made as much progress if he were living in a long-term care facility. Home is a medicine unto itself.

I still have not taken down the preschool art project of the human figure with eyes on his hand from my son’s bedroom wall and I may never do so. It is one of my favorite things in the entire apartment. I love the metaphor of the wind blowing our eyes off our faces, and us proudly, wearily, and resiliently catching them in our hands.

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