I sat alone in the hospital room, staring blankly at the wall, stuck on repeat: What just happened? My mind couldn’t make sense of the moment. After all the years spent dreaming, praying, and preparing for my daughter—she was finally here. But the moment that was supposed to complete our family suddenly shattered like glass. It didn’t feel like something went wrong it felt like everything had broken.
The pregnancy had been healthy until my water broke at 34 weeks. She was breech, so we scheduled a calm, controlled C-section. When she was delivered, I heard her cry, and someone said, “She’s beautiful.” I smiled, relieved. But behind the curtain, everything was falling apart.
I’d never heard of Harlequin Ichthyosis before. Most haven’t. Seconds after birth, her skin began to harden, then crack open, leaving wounds across her tiny body. The room filled with panic, but no one would tell me what was wrong. I was sedated and unaware of what was happening. My husband was left alone to make critical choices about hospitals. He held our daughter, Anna, and looked into her eyes just before they swelled shut for days.
I remember waking and asking where he was, where she was. I wasn’t ready for bad news, so I didn’t press. When the doctor finally explained it was a birth defect, I thought, Okay, we can fix this. But my husband’s silence said otherwise. He only whispered, “Jennie, I looked in her eyes. She has the most beautiful soul.”
When they finally placed her in my arms, I saw the pain her body was in. Her skin had dried into tight, painful sheets that distorted her tiny fingers and toes. No one had seen anything like it. In those early days, I had dark thoughts I’ve never shared before wondering if it would be kinder for her not to live. I couldn’t understand how this was happening.
Days later, when I saw her eyes again, everything changed. I didn’t see a diagnosis. I saw her. Beauty. Strength. Light. The days were long and hard, filled with Vaseline, fleece pajamas, and hours of care. My dreams of bows and dresses faded into medical routines and pain. I was grieving not just for her suffering, but for the life I thought we’d have.
But then a woman came into my life someone who had lost two babies. She helped me see what I still had. From that moment, I stopped mourning what was missing and started celebrating what was. I dressed Anna in the cutest fleece I could find. I stopped lowering the bar, and instead, raised it.
Anna became a light not just for me, but for everyone. She’s taught me to celebrate the smallest victories, and to love without fear. I used to think I was being punished. Now I know I was chosen for her. And she was chosen for me.
Together, we’re rewriting the definition of beauty.
