My life was forever changed on October 25, 2018, when my daughter Bella was born. What was supposed to be a joyous moment was instead filled with uncertainty and fear. As I held Bella in my arms for the first time, I knew that something was different.
The days that followed were a blur of medical tests, diagnoses, and uncertainty. Bella was born with Treacher Collins syndrome, a rare genetic disorder that affects the development of facial bones. She had microtia, a cleft palate, a narrow airway, and hearing impairments.
As a new mother, I was overwhelmed with emotions – fear, anxiety, and uncertainty. But amidst all the chaos, I knew that I had to be strong for Bella. I had to advocate for her, care for her, and love her unconditionally.
The journey ahead of us was not easy. Bella underwent multiple surgeries, including a g-tube placement at just 7 pounds. We spent eight weeks in the NICU, where I learned to care for Bella’s complex medical needs.
As we navigated the ups and downs of life with Treacher Collins syndrome, I realized that our journey was not just about Bella’s medical needs, but also about the love, support, and resilience of our family and community.
Today, Bella is a thriving toddler who brings joy and love into our lives every day. She attends therapy sessions, music classes, and preschool, and is surrounded by a village of people who love and support her.
As I look back on our journey, I am reminded that life is fragile, beautiful, and sometimes unpredictable. But amidst all the uncertainty, one thing remains constant – a mother’s unwavering love for her child.
