05/18/2026
My daughter Kylie lived with Schizencephaly, a rare neurological condition that shaped so much of her life — and ours. From the beginning, life looked different for her. There were challenges, therapies, hospital visits, uncertainties, and moments of exhaustion that felt impossible to explain to people outside the special needs world. But there was also joy. So much joy.
Kylie taught our family how to celebrate things others might overlook. She taught us patience, perspective, unconditional love, and how precious even the smallest moments can be. She had a smile, a spirit, and a presence that could soften even the hardest days. She was deeply loved not only by me, but by her dad and her brother as well, and the bond they shared with her will always remain part of who they are.
Loving a child with complex needs means living in two worlds at once. You become fiercely protective while also grieving the things your child may never experience. And somehow, you learn to hold both truths at the same time without loving them any less exactly as they are.
We lost Kylie three years ago, just shy of her 18th birthday. Yesterday, she would have turned 21. Even now, it is hard to put into words the depth of missing her. The grief comes in waves — sometimes quiet, sometimes overwhelming. I still catch myself wondering what her life may have looked like, what milestones we might have shared, and what kinds of mother-daughter moments we would be experiencing today. But more than anything, I simply wish she was here.
At the same time, we will always be grateful beyond words that we were blessed to have Kylie for as long as we did. She changed our lives forever, and despite the hardships, we would choose her every single time. She was deeply loved, and she continues to be deeply missed every day.
Schizencephaly is rare, but the families living it are real. The love is real. The sacrifices are real. The exhaustion is real. And so is the beauty that exists within these lives.
Today, I share Kylie’s name because she mattered. She still matters. And I hope by sharing her story, someone else navigating this journey feels a little less alone. 💜
