Her lips were blue. She wasn’t breathing. Twenty seconds. Forty seconds. It may not sound like long, but when your precious three-year-old is convulsing uncontrollably, it feels like a lifetime. I wanted to pray—I needed to pray. “She’s going to be fine,” my optimism whispered. “But she looks so helpless!” my heart shattered. “GOD, PLEASE HELP!”
Like most expecting mothers, I had such high hopes for my own journey into motherhood. When we learned we were having a baby girl, my mind filled with visions of ribbons, ruffles, and the tiniest, cutest outfits imaginable. I imagined walking her into her first day of kindergarten, and far into the future, I pictured her teen years—shopping trips, singing in harmony in the car, laughing together. Those moments were precious memories I had with my own mom, and I longed for the same with my daughter. Was that too much to hope for?
Pregnancy brought its own surprises. I marveled at the extra weight I’d gained—50 pounds that seemed to go everywhere. I joked that five pounds were in my face and another ten in my chest! For the first few months, I often mistook gassy moments for tiny movements inside me, trying to picture what she looked like in my belly. I couldn’t wait to meet this little human, a perfect mix of me and her dad, whom I truly believed was the best person on earth. After struggling for six months to conceive, our joy was boundless when we finally learned we were expecting our first child.
For the most part, my pregnancy was normal. We had already chosen her name—Kaiya—five years earlier while hanging out at our college campus café, and it had stuck. We knew she was destined to be a God-sized blessing, though we couldn’t have imagined the magnitude of that blessing.
When Kaiya finally arrived, I remember thinking that if labor could always be that smooth, I’d have dozens of children! Holding her for the first time, I could only describe her as angelic. Tiny, delicate, perfect—five pounds, twelve ounces of pure miracle. She was intricately designed, like someone had handcrafted her before handing her to us. “Praise God for this beautiful gift,” I whispered, overwhelmed with love. I was hers now, entrusted to guide her, nurture her, and help her become the person she was meant to be.
Kaiya’s milestones brought endless joy. Her first smile left me breathless, and her first giggle? I still carry that sound in my heart—it’s my absolute favorite. By two months, she had plumped up beautifully, a little butterball of happiness. Her strength amazed me—holding her head up early, bearing weight on her legs at just five months. We eagerly anticipated first words, crawling, and walking, never imagining that by nine months, we’d begin seeing the first of many regressions, a gradual loss of skills she had already mastered.
It began subtly. Her hands trembled, she struggled to grasp toys and sippy cups, and her words began disappearing. I wish I could remember the last time she said “mama.” Had I known it might be her final time, I would have recorded it, replaying the sound whenever I needed a reminder. But these early signs were only the beginning. Despite it all, our love for Kaiya never wavered. We clung to our faith, the anchor we relied on so deeply.
Over the next two and a half years, Kaiya experienced worsening developmental delays—no walking, no talking, and further regression of her fine and gross motor skills. Specialist after specialist, test after test. But through it all, she endured every needle and procedure without complaint. I thank God she didn’t cry; watching her suffer would have shattered me. Until this point, she had been generally healthy. Then came the diagnosis: Rett Syndrome, accompanied by seizures starting at three and a half.
Rett Syndrome is a rare neurological disorder caused by a mutation in the MECP2 gene, almost exclusively seen in girls. Although the mutation exists from birth, its effects often don’t appear until eight to eighteen months, when regression begins. As her parents, we had believed we were raising a typical child—until her words vanished and her motor skills slipped away.
Our lives became unrecognizable. Along with seizures, Kaiya faced trouble gaining weight, requiring a feeding tube, severe scoliosis, relentless digestive issues with daily vomiting, and a heart arrhythmia called Long QT Syndrome. Multiple medications, countless specialist visits, and frequent ER trips became routine.
Faith became our lifeline. Only it could carry us through fear, doubt, frustration, and anger. I cried and prayed during Kaiya’s first seizures, daring to believe God would see us through. And He did. He has been present through every scare, every hospital stay, every moment of uncertainty.
Today, at seventeen, Kaiya is healthier than ever. About seven years ago, I realized I hadn’t been caring for myself, and the thought that I might not be around for her terrified me. We both committed to healthier lifestyles, learning valuable lessons about whole-food nutrition, which we applied to Kaiya’s feeding tube. Slowly but surely, we built a foundation for her health. Now, we’ve gone three years without sickness, seizures, or hospital visits—a freedom that allows our family to dream and hope again.
Recently, we moved to Florida, preparing to build our dream home minutes from the beach. I also joined a healthy-living community, eventually starting a virtual franchise to help other families reclaim their health. Had we given in to fear and despair, I never would have believed in the possibility of living a victorious life.
Seventeen years later, the love and joy I feel for Kaiya are overwhelming. She teaches us life’s most profound lessons: to believe in something greater than ourselves, to persevere through twists and turns, and to hold hope even when life is far from easy. She attends school every weekday, communicates nonverbally through an eye-gaze device, and continues to amaze new doctors with her story. No, life isn’t perfect—but I adore it. I wouldn’t trade a single moment, because then I wouldn’t have Kaiya. And she is far too extraordinary to ever give up.
