Growing Up Between Shifts

Two-month-old Lily had colic. She cried—a lot.

Her father was exhausted by the crying. He put her into a duffel bag. Lily cried louder. He zipped the bag shut, muting the sound but not the pain. Then he picked up the bag and slammed it repeatedly onto the coffee table.

Lily stopped crying.

She spent the next three months in a children’s hospital. Surgeons placed a shunt in her brain, a tracheostomy in her throat, and a feeding tube in her stomach. Because of the tracheostomy, Lily cannot cry.

At five months old—during COVID—she was discharged into the custody of Family Services and placed in a long-term care facility. The building was locked down.

Lily’s world became one room, rotating staff, and the occasional visit from a DCFS worker.

Her tracheostomy is suctioned. Her seizures are treated. Every heartbeat and breath scrolls across monitors at the nurses’ station. Her body is kept alive.

But no one rocks her.No one sings to her.No one reads to her.

She is tube-fed, so there’s no reason to make eye contact the way you do when feeding a baby with a bottle. The nurses have many patients. Lily gets attention when an alarm goes off.

I was assigned as Lily’s Court-Appointed Special Advocate when she was four.

My first thought was, What a beautiful little girl.My second was that the back of her head was completely flat—like a board.

For five years, Lily’s entire life had taken place inside a pediatric unit in a long-term care facility.

On my first visit, I asked the nurse, “Does she like to color? Read books? Sing?”

“I don’t know,” she said. “We don’t have time for that.”

“Can she roll over? Stand?” I asked.

“I don’t think so.”

“What does she like?” I asked.

“To be touched,” the nurse replied.

Lily spends her days either in a crib or in a wheelchair parked near the nurses’ station. She lives there. If she gets sick, she doesn’t go to the doctor—the doctor comes to her. When she has a respiratory infection, her ventilator settings are adjusted. When she has a seizure, she’s given medication.

There is no reason for her to leave.

Her only “game” is throwing toys on the floor and waiting for someone to pick them up. Over and over, she drops them from her wheelchair. Eventually, because staff don’t have time to retrieve toys all day, they tether the toys to her chair.

It’s not a game when you’re playing alone.

The staff are kind. Lily is clean. She is suctioned, fed, and monitored. But development doesn’t happen on its own. No one encouraged her to crawl. To stand. To explore. To try.

The absence of connection caused emotional stunting.

How does a child grow emotionally if no one responds to babbling, celebrates a smile, or plays peekaboo?

When I visit, I take Lily into the day room so she can play on the floor—something different from her crib or wheelchair. “Playing” means tapping toys, throwing them, watching them fall.

I pull out my phone and put on Ms. Rachel, my granddaughter’s favorite show. Lily lights up. She’s a fan.

We sing “Bubble, Bubble, Pop Fish,” and Lily makes the hand motions. Then Ms. Rachel sings, “Can you say Mama? Can you say Mama’s name?”

Lily smiles and tries.

And my heart breaks.

She has no mama.No dada.

Later, Ms. Rachel asks, “How do you go to the grocery store? Do you take a bus?”

Another wave of grief hits me. Lily has never been to a grocery store. Since the night she left her home in an ambulance, she has never been anywhere but a hospital or a nursing facility.

Even though she is strong and can sit upright, Lily doesn’t try to crawl or stand. No one has ever encouraged her to. Staff walk by, pat her head, say hello—but there is no sustained connection.

It feels like something out of the 1970s. Institutionalization. Learned helplessness.

Our healthcare system is failing the most vulnerable among us.

Lily’s physical needs are met. Her emotional and developmental needs are not.

And Lily is not the only one.

There are more than a million disabled adults and older people living in long-term care facilities across this country. We have built a system that keeps bodies alive while neglecting minds and hearts.

That is not enough.

We have to do better—for Lily, and for everyone living out their lives inside institutions.