When my daughter Anna came into the world, I felt as if my heart might excess with happiness.
I had dreamed of her for years, prayed for her, and imagined every part of the second we would meet. But in an instant, that happiness turned into fear. My pregnancy had gone effortlessly until my water broke at 34 weeks.
She was back, so the doctors decided on a calm, planned C-section. I heard her cry and someone say, “She’s beautiful,” and I relaxed. I thought everything was fine. What I didn’t know was that behind the shade, things had taken a frightening turn. Anna was born with Harlequin Ichthyosis, a rare skin condition that most doctors never encounter in their careers.
Within moments, her skin hardened and cracked, leaving open cuts. Her tiny fingers were clasped tight, turning blue, and her toes were pulled under her feet from the tightness. My husband was told something was wrong, but no one knew exactly what.
He held her just before her eyes swelled shut for days. When I woke up, I kept asking about her, but no one gave me a clear answer. In the beginning, I was told it was a birth irregularity.
I told myself, “We can fix this. There’s surgery, medicine, something.” But my husband’s quiet words, “It’s bad”, told me the truth. Still, he said, “Jennie, I looked in her eyes, and she has the most beautiful soul.” For two days, I avoided searching for answers. I wasn’t ready to know. Then my husband revealed that the doctors hadn’t accepted her to make it.
My heart dropped, but in that moment, I decided she would live. I wasn’t ready to let her go. Anna proved everyone wrong. She fought her way through every obstacle in the NICU.
But learning to live outside the humidity-controlled environment was painful for her. We kept her skin hydrated by coating her in Vaseline, wrapping her in gentle fabric, and safeguarding it stayed moist.
Bringing her home was scary. She could only wear wool pajamas, and I bathed and moisturized her constantly. One day, a woman who had lost two babies visited me. Her story changed everything. It made me realize how blessed I was to hold my daughter.
From then on, I focused on what Anna could do, not what she couldn’t. Slowly, she improved. She lost her hair at first, but it grew back. I celebrated every milestone, her first pair of jeans, her first headband. Anna is beauty in its purest form. She’s taught me to treasure every small success. I once thought her condition was my fault, but now I know she was meant for me, and I was meant for her.
Together, we will show the world what true beauty looks like.
