Sarah

I was diagnosed with hydrocephalus at four months old and underwent my first surgery shortly after. For the first few years, my condition had little impact on my life. However, at four years old, I faced my first shunt revision after an accident. I vividly recall telling my mother and doctor that something was wrong, even though the CAT scan showed no issues. After closely examining the X-ray, the doctor discovered a disconnection in the tubing, which led to immediate surgery. 

At 15, I experienced another complication when my tubing completely disconnected. I endured excruciating headaches and memory loss. That surgery was especially difficult, requiring months of recovery. It was too risky to remove the original valve, so my doctor decided it was best to place another valve next to the original one. 

When I was 23, I underwent two surgeries in one year. Once again, the tubing disconnected, but this time the original shunt was removed, and new tubing was inserted.

Over the years, I’ve struggled with memory loss, difficulties with fine motor, nerve pain from scar tissue around the valve, and low self-esteem. I often wondered if I would ever be defined by anything beyond my headaches and my condition. 

Becoming a mom changed my life. My sons have given me a purpose and have inspired me to approach each day with a positive attitude. I now start my day with the belief that it will be the best day ever. This shift in perspective has empowered me to pursue and excel in various professional roles, accomplishing more than I ever thought possible.

To manage my memory challenges, I have developed muscle memory through consistent routines and the practice of repetitive writing. These strategies have helped me to cope and retain vital information. 

When I meet parents of children diagnosed with hydrocephalus, I proudly share that I am a hydro warrior. I remember meeting a mom of a young child with hydrocephalus while working for an airline. She was worried about her son’s future, but I assured her that he could do anything he set his mind to. Hydro warriors are living miracles, and those miracles only multiply as we grow older. 

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