Guest Voice: Like stars, the grief of losing my sister is always present

Note: This column describes death and dying and may be triggering for some readers. 

Dec. 13, 2023, 4 a.m.

I woke up around 4:17 a.m. to the sound of machines singing different pitches of beeps. I’d been in and out of sleep for the five hours I was actually able to doze off, but this time, I knew I had to stay awake; these were going to be the last hours I had left with my sister.

I had known it was coming since I was young, but now that it was actually happening, it was harder than I had expected.

My sister, Cammy, had a 1 in 10,000 disorder called Rett syndrome. She was unable to walk, talk, or use fine motor skills. Growing up, she always got weird looks or comments from people who simply didn’t know any better.

That morning, I was sitting on the edge of her hospital bed, listening to my parents frantically calling our family members. I got up, sat on the cushioned bench, and watched my sister’s body. Her chest moved in quick, short increments of breath. I remained quiet. It wasn’t because I wasn’t aware or didn’t care about what was happening, I just didn’t know what to say.

I went on a walk with my mom around the hospital level where my sister’s room was to try to clear our heads. We talked about old memories, and she told me funny stories from her childhood about her mom to try to lighten the mood. It worked for a bit, but once other family members started to rush in, I was quickly reminded of what was happening: They were coming to say their goodbyes.

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As family members arrived and embraced me with hugs and kind words, more doctors shuffled in and out of the room as well. I specifically remember one doctor: He was tall and broad with a distinct peppery-musky smelling cologne that wafted in and out of the room. He talked to my parents and me about taking my sister off the morphine that she had practically been living on for the past week.

I knew what this meant. I knew that as soon as she was off the only thing keeping her heart beating, she would be gone.

Everyone had a chance to talk to my sister one-on-one for the last time. I waited outside the room, shaking nervously, until it was my turn. I walked in and sat on the edge of the bed. I didn’t really know what to say. I mean, these were going to be my last words to her. I didn’t really have any time to think. It felt like the inside of my throat was lined with barbed wire. I couldn’t talk or even take too big of a breath without tears rushing down my cheeks.

I was finally able to get some words out and talk about how much I would miss watching game shows with her, how I knew she always knew the answers to the dumb trivia questions, even though she was never able to speak. I told her how much fun she was going to have with my late grandma and grandpa in heaven, making cookies and watching her favorite show, “Sesame Street.” Lastly, I told her that I would always love her, no matter how far we were from each other. I then left the room for the last time.

Ryan Babiarz, left, and her big sister, Cammy, attend a Chicago Blackhawks hockey game in 2015. (Photo by Jackie Babiarz)

March 5, 2026, 9 a.m.

All my life, people have told me I’m mature for my age. I often just smiled, nodded, and thanked them without really thinking about what their words meant. As I get older, I now understand that I have gone through harder things than most adults. I look back and realize how lucky I am to have the knowledge of what grieving siblings and families go through.

Grief manifests differently in everyone and can attack at random moments. I like to think of it as the morning sky, and the stars are like grief in a person. The big, bright sun creates a good distraction, but even then, those burning stars will always be there.

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