Angel

My name is Angel. I was born prematurely at seven and a half months due to complications during pregnancy, including my umbilical cord being wrapped around my neck. After birth, I spent time in the neonatal intensive care unit (NICU) in an incubator until I was considered full-term. Before I was discharged, I had been diagnosed with hydrocephalus and had a shunt placed. From the very beginning, my journey has been one of resilience.

The word hydrocephalus was new to our family. We had to learn quickly what this meant for me and my life moving forward. Over the years, I have undergone more than 10 brain surgeries related to my shunt. While those early years were filled with uncertainty, today I am more stable. My last shunt revision was in 2022, and my last seizure was in 2021.

Living with hydrocephalus comes with daily challenges. I am nonverbal, which can make it difficult to communicate my needs and can sometimes lead to frustration. I also take multiple medications throughout the day to manage seizures and behavioral challenges, which can affect my mood and energy levels. However, my family has learned to recognize important signs when something may be wrong. If I stop eating, become sleepier than usual, or have changes in my routine, such as not having bowel movements, my caregivers know to act quickly. These signs have consistently helped identify shunt malfunctions early, allowing for timely medical intervention.

Despite these challenges, I have found ways to grow and thrive. I have been participating in the Texas Special Olympics since 2021, which has given me a sense of belonging and keeps me socially engaged with others who share similar experiences. I also have a part-time job as a food sampler at Kroger, where I work alongside my aunt, who supports me on the job. This opportunity allows me to build independence, earn money, and be part of my community.

One of the biggest milestones in my journey has been receiving an Augmentative and Alternative Communication (AAC) device. While I am still learning to use it, it has already made a meaningful difference in helping me communicate my needs both at home and at school.

My perspective on life is shaped by both my challenges and my support system. I am surrounded by family who understand me, advocate for me, and ensure I receive the care I need. Their love and consistency have helped me navigate a world that can sometimes be difficult to understand.

To others facing similar challenges, my message is simple: do your best and trust the people around you who are there to help. Every journey looks different, but with patience, faith, and support, progress is always possible.

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Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest, regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.