Once upon a time I had two healthy boys and was expecting a third. I never thought that I would ever have to deal with anything as cruel as spina bifida. But on September 8, 2003 my entire world changed when I gave birth to my third son, Benjamin. Ben was diagnosed with spina bifida right away and had surgery to repair his exposed spine a couple of hours after his birth.
This blog is a tribute to children and parents everywhere who deal with this terrible diagnosis. I hope that through my stories and pictures of Ben you will see that children diagnosed with spina bifida can have happy lives. In the beginning I spent hours online reading and researching, hoping for a magical answer to a question I couldn't even formulate. In this world of technology, we sometimes have too much information at our disposal. That was true for me when uneducated google searches yielded pictures of babies without skulls and stories of parents who had to bury their tiny babies. I know that this is a reality for some cases of spina bifida, but it isn't for every case. Depending where along the spine the malformation occurs and how the family deals with it have a lot to do with the outcome.
I don't know everything but I've been meaning to journal my experiences since day 1. I have written some things down but until now I've kept them private. Now I hope to share our experiences in the hopes that they'll turn up in someone else's google search.
