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How Spina Bifida Changed My Life

In honor of Spina Bifida Awareness month, I finally decided to share my story. Many of you are close friends and know that it is rare for me to share such a personal part of myself with the world. My experience over the last year has brought sadness but has also brought inspiration. Inspiration to continue serving the community. It is my goal to build a community that supports others and helps give children the tools to overcome struggles they may be experiencing or will experience in their lifetime. I know that without the unconditional support and love from my amazing husband, and the strength my personal yoga practice has given me, my life would not have taken the same direction. Though the direction it took was inspired by my pain it was turned into something beautiful and reborn as the nonprofit Bliss Kid Yoga is today. Bliss Kid Yoga was my personal business but by becoming a nonprofit we can now serve more children with the goal of providing them with the tools and support to live happy and healthy lives.

After the majority of my twenties in debilitating pain and seeing countless specialists with no results or answers, I heard words from my doctor I would never expect. “You have Spina Bifida.” At the time, I was in shock and not very familiar with Spina Bifida but I knew it was serious when my doctor referred me to a neurosurgeon and suggested my husband accompany me to all future appointments. It turns out, I had a form of SB that often goes undetected and majority of the time does not show any symptoms. But, I guess my body had other plans for me. The tumor that was on my spine was considerably large and had most likely been there since I was young, filling with spinal fluid and causing major nerve damage and erosion to my spine and sacrum. This finally explained the debilitating pain I had in my hip and down my leg. Unfortunately, after making the decision to undergo spine surgery and put my life on hold the surgery was not a success. The tumor filled up again and my pain was never alleviated due to the severe damage to my nerves caused by the tumor. Post-operation, I have continuing leg pain and now back pain due to surgery. Almost a year later, I am finally getting the proper post-op treatment and starting to recover from surgery. The pain is slowly reducing. The light at the end of the tunnel is there, it is small but I can see it and that is the only thing that matters.

Fortunately, I never had to experience some of the devastating symptoms of SB, including paralyzation. Every single day, I am thankful when I get out bed in the morning. Many people around us are often suffering and sometimes they are suffering alone and in silence. Many do not have the support system or resources to seek help. I hope that sharing my story helps others to feel less alone, and that something beautiful can be born through pain.

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