Chapter 2: something shifting

It was October 2018, and everything was supposed to be good.

My mom and Zed were getting married after ten years together—an actual celebration, a rare moment when life felt expansive and happy. The venue was beautiful, the family was in, and I had an outfit for Evelyn picked out that made strangers smile in elevators. She looked like a doll, in the best, softest way. Everyone said so.

We were also one week away from a family trip to California—Los Angeles. It was supposed to be Evelyn’s first plane ride, first palm tree, first time seeing her parents wear sunglasses in a non-ironic way. I had packed the baby sunscreen, pre-ordered travel-size wipes, and triple-checked the TSA regulations on formula.

And yet—I couldn’t stop staring at her face.

Not because she was beautiful, which she was. But because something wasn’t right.

Her eyes were heavy. Not in a “long day, baby needs a nap” way. In a permanent way. Her lids hung like they were tethered to something I couldn’t see. Her face looked… dull. Like someone had turned down the contrast.

She was sleepy all the time. More than sleepy. She was absent. She would fall asleep mid-feed, mid-cuddle, mid-activity. And when she was awake, her energy never quite arrived.

Everyone told me babies are tired. That travel preparations were tiring. That it was probably a phase. A cold coming on. A growth spurt. Maybe teeth. Always maybe teeth.

But it wasn’t just fatigue—it was weight.

Her body felt heavier when I lifted her from the crib. Her face looked like it was working hard just to stay in the room with me. She blinked less. Moved less. The softness wasn’t cozy anymore—it was clinical.

I tried to rationalize it away. We were just coming out of shunt surgery recovery. She was growing fast. We were planning a wedding, planning a trip. Maybe I was just projecting my own exhaustion onto her.

But I also knew the shape of Evelyn’s wakefulness. I knew the rhythms of her gaze. The way her eyes would follow the light through a window. The way her laugh started in her shoulders before it reached her mouth.

And now… she just watched me. Heavily. Sleepily. Almost apologetically.

During the wedding, I carried her through the reception like a question I couldn’t ask. People held her, cooed at her, kissed her soft cheeks and told me how lucky I was.

And I was lucky.

But something was still wrong.

I didn’t know it yet—not fully—but October was the beginning of the return. The shift. The first signs that the shunt hadn’t been the last chapter. That whatever we’d fixed wasn’t the whole problem.

At night, after the wedding, I laid in bed beside her and just… watched. Her chest rising. Her eyes fluttering in dream. I didn’t know what I was watching for exactly. But I knew what it felt like to miss something. And I wasn’t going to do that again.

The trip to California was still ahead of us. But I could feel something shifting beneath the surface. I didn’t know the term for it yet.

Mass effect.

I would learn that phrase soon enough.

But for now, I just knew that my daughter—my quiet, gentle, post-op baby—was tired in a way that didn’t make sense. And I was starting to believe that someone was going to have to tell me why.

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Chapter 1: every diagnosis comes with its own asterisk

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Chapter 3: nothing about this felt over