Reseña del libro "Born Twice: Voices of Spina Bifida (en Inglés)"
Why is this happening? Why him? Why us? I can't count the number of times those words echoed through my mind over the course of the summer of 2017. There is no more powerless feeling for a parent than being forced to watch as their child battles for his health & well being. At my wife's 20 week ultrasound, we expected to learn the sex of our second munchkin, but instead our world was crumbled. Words like Spina Bifida, Arnold Chiari Malformation, Myelomeningocele & Hydrocephalus destroyed the excitement we held and replaced it with more uncertainty than we knew existed. The next weeks & months were a whirlwind as we met with specialists and flew across the country so that my wife could undergo fetal surgery to close the opening in my son's back and. We would remain there for 4 months, away from our oldest son & our home. Our little Loxley Poet had our hearts from the beginning, so it was never a question as to if we would do all in our power to give him the best chance. It was only a matter of how and when? The amazing people in our lives, our friends & family, made sure we had everything we needed, support in all shapes and sizes. Our journey being what it was, I decided that I could look at it as a burden or as an opportunity. Instead of asking ourselves 'why,' perhaps we should have been asking ourselves, 'why not?' So, that's what we did. We would handle this and we would thrive, because that's what families do. That's how we survive. That's how we live. This book is for my little warrior, all of his twice born brothers & sisters, as well as their selfless families willing to sacrifice some so that their children may have it all. This book transformed into something truly special when I began to ask other families and individuals touched by Spina Bifida for their stories. It became less about my son and more about spreading awareness and providing help for families navigating a new diagnosis. Included in the book are 109 stories from all across the Spina Bifida community, representing 33 states nationwide and 22 countries worldwide. This book may not change your life as it has truly changed mine, but I promise you that it WILL change your heart.
