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Born Twice: Voices of Spina Bifida
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, as well as give him the best chance for a life of worthwhile quality. 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, thats what we did.
We would handle this and we would thrive, because thats 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.
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, as well as give him the best chance for a life of worthwhile quality. 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, thats what we did.
We would handle this and we would thrive, because thats 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.
625 pages, Kindle Edition
Published May 2, 2018
16 people are currently reading
20 people want to read
About the author
T.M. Berg
3 booksedit biographydelete
Biography
An avid reader and writer, Tyler M Berg enjoys crafting poetry, short stories, and novels. When not behind the computer screen, he can be found cheering on his beloved New York Yankees, Pittsburgh Penguins, Green Bay Packers, & Wisconsin Badgers. Born in Madison, Wisconsin, and raised nearby, Tyler credits Madison's culture & diversity as driving forces behind his lifelong love of creation with writing. He now makes his home in Mandan, North Dakota, with his wife, Kristen, & their two sons, Stellan Mitchell & Loxley Poet.
Tyler published his first book, a short story collection titled 'Nightmares by Candlelight' in December of 2017. It is currently available for purchase on Amazon & Kindle and will be available by other avenues soon. Short stories found in the anthology include: Amen, Evil Eyes, The Nightmare Man, Whispers in the Wind, The Mad Priest, Unhallowed, A New Nightmare, Letters from a Madman, & The Knot Street Dollhouse.
Tyler’s second book, ‘Born Twice: Voices of Spina Bifida,’ is due out in May of 2018. It is a deviation of genres, but it is a very meaningful effort, as his son has Spina Bifida. The book not only includes his son’s story, but also over 80 more from families and individuals in the Spina Bifida community. Over 30 states are represented, as well as 13 countries. The goal of the book is to change the perception of Spina Bifida on a wide scale. It may not change your life, but it WILL change your heart.
Tyler enjoys writing in the horror genre because he believes that fear is the ultimate emotion, encompassing all others. Scaring someone through only words is an extreme challenge, as fear is different for everyone and typically a reader's imagination need play a role. Finding that balance is complicated, but when achieved it is a great thrill.
When we are afraid, we subconsciously begin to react to potential or imminent danger. Our bodies immediately release hormones that slow down certain functions not needed to survive. Other functions become sharpened further, such as our abilities to listen and focus. Fear can help us survive life-threatening situations. But, fear can also incapacitate us. It is a necessary evil.
Many of Tyler's stories focus not just on the supernatural, but also on humanity itself and the thin line we all walk between what is good/acceptable and what is evil/unacceptable. Evil exists in this world and contrary to what we all would like to believe, it wins more often than it doesn't. Furthermore, it is closer to all of us than we could ever imagine.
Happy reading...
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Displaying 1 - 2 of 2 reviews
July 16, 2019
Amazingly beautiful book. You have to be grateful that these children and families were given a chance. These children will do great things in their lives. Having a daughter of my own who was considered high risk really makes me feel appreciative of the doctors and nurses. I cannot imagine how the families of children with SB feel. I recommend this book to anybody who needs the inspiration to keep moving forward. Be grateful for the little things you have in life. You never know when your life will change.
September 2, 2018
Interesting but difficult to understand in places!
I enjoyed reading about the Bergs but when it came to reading the others I found them difficult to read, especially the last few as they didn't seen to translate well. I appreciate that the author of the book will have wanted the testimonies to be in their own words, but some were very difficult to understand and made no sense. Also, I think a glossary of abbreviations would have been helpful, I have spina bifida but still didn't know what some of the abbreviated words stood for. Overall though a very interesting book which kept me wanting to read to the end.
I enjoyed reading about the Bergs but when it came to reading the others I found them difficult to read, especially the last few as they didn't seen to translate well. I appreciate that the author of the book will have wanted the testimonies to be in their own words, but some were very difficult to understand and made no sense. Also, I think a glossary of abbreviations would have been helpful, I have spina bifida but still didn't know what some of the abbreviated words stood for. Overall though a very interesting book which kept me wanting to read to the end.
Displaying 1 - 2 of 2 reviews