Growing Up Between Shifts

Two-month-old Lily had colic. She cried constantly.

Her father, exhausted, put her in a duffel bag. When she cried louder, he zipped it shut. Then he slammed the bag against a 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 to Family Services and placed in a long-term care facility. The building was locked down.

Her world became one room. Rotating staff. Monitors.

She is suctioned. Fed. Medicated. Kept alive.

No one rocks her.

No one sings.

No one reads.

I was appointed as Lily’s CASA when she was four.

She was beautiful. The back of her head was flat from years in a crib.

“Does she like books? Music?” I asked.

“We don’t have time for that,” the nurse said.

“What does she like?”

“To be touched.”

Lily spends her days in a crib or parked near the nurses’ station in a wheelchair. If she gets sick, the doctor comes to her. There is no reason for her to leave.

Her only “game” is dropping toys from her tray. When staff can’t keep picking them up, they tether the toys to the chair.

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

When I visit, I take her to the day room and sit on the floor. We watch Ms. Rachel. She lights up. She tries to say “Mama.”

She has no mama.

She has never been to a grocery store. Never to a park. Never anywhere but a hospital or nursing facility.

She can sit upright. She could likely learn more.

But development does not happen in isolation.

Her body survived.

Her childhood did not.

There are more than a million people living in long-term care facilities in this country.

We have built a system that keeps bodies alive while neglecting minds and hearts.

That is not enough.

We can do better.

To protect resident privacy, identifying details in this story have been changed. The situations described reflect real issues encountered in long-term care.