Before my birth, my story begins. My mom was told something was wrong with me and warned that I might not live, and if I did, I might never walk or talk. Well, those doctors were in for a surprise, I started talking young and haven’t stopped since! I was born two months early in September 1991, with low muscle tone, hydrocephalus, scoliosis, and an undiagnosed genetic condition. From the very beginning, I’ve had to beat the odds and prove the people wrong.
I needed medical involvements directly, therapies, processes, surgeries. I had club feet, a hernia, and brain surgery to implant my first shunt for hydrocephalus. Hydrocephalus is a condition that keeps you from draining excess fluid in your brain, and a tiny tube, called a shunt, is needed to survive. Shunts often fail, meaning multiple surgeries over a lifetime. At 30, I’ve had about twelve brain surgeries and over thirty surgeries in total, It’s included things like spinal fusions, shoulder surgery, foot surgery, and beyond.
Growing up, I spent more time in hospitals than in classrooms. I missed birthdays, holidays, recess, and school events. Even preschool was interrupted with therapy appointments while other kids napped. It was hard always being singled out, watching other children live “normal” lives, while I struggled to keep up. Some years were relentless with multiple surgeries, while others gave me brief reprieves to just be a kid.
Despite it all, I had a wonderful childhood. My mom made sure we celebrated every small victory, even a trip to McDonald’s or the park after an appointment. She taught me to focus on what I could do rather than what I couldn’t. I learned to play the violin, swim in lakes, cook, sew, and read. She made sure I had passion and joy, even amidst the struggles.
Now I am raising my own daughter, I see there are things I missed growing up, but my life has been rich and enjoyable. My toughest recovery came in 2012 during college when a shunt revision went wrong. I spent a year recovering, on a ventilator, in the ICU, and facing severe complications. My body went from 90 pounds to 75, I barely walked, and I even had blood clots. It was grueling, and at one point, my family feared I might not survive.
That experience taught me resilience and perspective. I wouldn’t have met my husband otherwise. We met by chance while working at a college internship program. Our relationship is playful, loud, and full of fun. We love traveling, discovering, cooking, and spending time in our garden. We have a poodle named Molly and, most recently, welcomed our adopted daughter in November 2021. The adoption process was emotional and challenging, but also magical.
It took 24 years to receive a proper diagnosis for my condition, a rare type of Ehlers-Danlos Syndrome called FKBP14. I was the tenth person in the world diagnosed with it.
Connecting with other families has been life-changing, allowing me to guide and comfort parents who are navigating similar challenges.
Even with the all struggles, life is still magical. I’ve completed things I never thought possible: walking, talking, raising a family, having a home and a garden, and building a life filled with love and purpose.
Sometime I wish that I could send a postcard to the doctors thirty years ago that says: I made it, I can talk, I can walk and now I am teaching my daughter too.
