The most difficult conversation I have ever had

“How do you tell your child their sibling is going to die?”

That is a question I never expected to Google.

In early November 2023, our oldest daughter, Cammy, was on a BiPAP machine in the pediatric intensive care unit (PICU) when she stopped breathing. The medical team rushed in and bagged her. We thought we were losing Cammy. Then, somehow, they brought her back.

The hours that followed were filled with decisions no parent is ever prepared to make. Would we want her on a ventilator if it happened again? Should we sign a do-not-resuscitate order? And looming over everything: How do we tell her sister, Ryan, that Cammy might not have much time left?

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Having a sister with Rett syndrome was all Ryan had ever known. She grew up in hospital waiting rooms and therapy clinics, surrounded by medical conversations and uncertainty. She understood, in a way most children never have to, just how fragile her sister was. Still, understanding fragility is not the same as preparing for loss.

On my way home from the hospital that night, I felt suspended between disbelief and inevitability. I sat in my car, staring at my phone, thinking, Am I really about to search for how to tell your child that their sibling is going to die?

And then I did.

When I got home, I called Ryan downstairs. She asked how Cammy was, and I told her the truth — gently, but honestly. Cammy had stopped breathing for a time, but she was stable again. We talked about how each hospital stay had been getting longer, more complicated, more serious.

Then I took a breath and said the words I never imagined saying out loud: We didn’t know how much time we had left with Cammy. It might not be as long as we had always hoped.

I told her I couldn’t promise that Cammy would come home this time. Even as I said it, a part of me still believed she would.

I asked if she had questions. Ryan, always practical, asked if Cammy could finally have the scoliosis surgery that might relieve the pressure on her organs. I explained why it had never felt like the right choice before — and why it wasn’t now.

We cried. We hugged. Then Ryan asked to be alone in her room.

Cammy came home one more time in early December. We had a week together — an ordinary, extraordinary week. Then, on Dec. 11, she was taken back to the PICU by ambulance for the last time. Cammy died two days later.

On her final night, Ryan climbed into the hospital bed and slept curled at Cammy’s feet. She held her hand as the machines beeped relentlessly and nurses moved in and out of the room. In the middle of all that noise and fear, she stayed.

There are no right words, no script that makes it easier to tell a child they are about to lose their sibling. There is only honesty, love, and the willingness to walk through the unimaginable together.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.