In 1981, when I was told Babli had Down syndrome, I asked every doctor just one thing: Will she ever be able to express pain?
How will I know if she’s hurting? No one had an answer.

Today, after a lifetime with her, I know—they do feel pain, and they understand it deeply. It’s we, the caregivers, who must learn to truly listen.I’m writing this after a month of silence—because this past month shook us.

We were in Sri Lanka. Babli was excited, giggling while packing like she always does. But that night, she vomited three times. Then, on her way to the bathroom, she fell hard. Ten minutes later, she had a seizure—frothing, her body jerking
uncontrollably. Another came soon after. I knew it was an emergency. In 15 minutes, we were at the hospital. Her sodium levels had crashed. She had an infection too. We flew back to India two days later.

Then came the quiet pain—*she would wince every time she lay down, whispering that her back hurt. After two weeks, she sent her brother a voice message: “The pain is too much.”

A spinal X-ray revealed a compressed fracture.

Even with all our experience, we missed it. I never imagined something like this could happen to her spine.

So please—when our children say they’re in pain, pause. Listen. Don’t brush it aside. It may be more serious than we know. Sodium imbalance can be dangerous—causing disorientation, seizures. We are still searching for answers.

To my dear Hamsafar family—surround yourself with support. Be there for each other. Take care of your children—and yourselves. Stay strong. Stay aware.

REKHA MAA