On January 26, 2002, we were blessed to welcome our first born daughter, Ainsley Nicole. She was perfect in every way. There were no complications during the pregnancy or at birth. We brought her home from the hospital within 48 hours of her birth. Little did we know, we would be readmitted to the hospital just a few weeks later.
At five weeks of age, Ainsley was admitted to the pediatric intensive care unit (PICU) with encephalitis and meningitis. There, Ainsley would spend the next three weeks clinging to life. Ainsley chose to survive. When we were released from the hospital, we took our now eight week old baby home to a life forever changed. We went home knowing our daughter had suffered a catastrophic brain injury. We went home with medical equipment, monitors and various medications to begin our “new normal.” We went home realizing just how quickly life can forever change for a fragile newborn.
From the moment we left the hospital, our goal has been to try anything we could to improve Ainsley’s quality of life. She has had numerous orthopedic surgeries and countless hours of physical therapy to improve her physical abilities. Ainsley has seen renowned specialists and attempted to use technology to improve her ability to communicate. She has traveled the region to try experimental treatments not offered locally. Although we have yet to find a miracle cure, we remain hopeful and continue to seek out new treatments that may better her quality of life.
In the meantime, Ainsley is a happy and healthy thirteen year old. Despite her physical limitations, she is living a full life. Despite her inability to talk, she is able to communicate her strong opinions and desires. Despite her inability to manage daily tasks on her own, she experiences what life has to offer. Simply stated, she completes our family. Although this “new normal” wasn’t foreseen, we can’t imagine life any other way and couldn’t imagine life without Ainsley. However, without past medical research and technology, Ainsley would not have survived.
Without future medical research and technology, other families will be denied what we have been blessed to enjoy. When we tell Ainsley’s story, it is with the intention of creating awareness and change. We have an opportunity to impact others through her experience. That’s why we jumped at the chance to be this year’s Fund the Mission Ambassador Family for the March of Dimes. Please join us in this mission!
- John & Anne Leace