Passing the time...

I spend most mornings now looking for jobs. I was spending all day, but found that by targeting sites one day each week, I have more to look through per site, so I rotate through the "major" sites, periodically checking company sites for opportunities not posted elsewhere. Its a pretty good system and it works.  It also leaves me with free time in the evenings, and I'm working on something that has been on my heart for a while.

I belong to several spina bifida forums. They were real life savers to me during my pregnancy when everything was unknown and frightening. Before I found the forums though, I remember looking for books on the subject and finding the selection...lacking. The most recent book written for parents of children with spina bifida was first published in 1999...before completion of the MOMS study. A lot has transpired since then. Also, there wasn't anything specifically addressing the questions of a pregnant woman.  Although there are a few exceptions, most babies are diagnosed prenatally...a time when you know something is wrong but the uncertainty of the diagnosis looms bigger than your belly. Even while I was still prego, I wished there was some sort of walk-through guide.

On the forums, I notice that most of the new moms ask the same kinds of questions, have the same fears, guilt, wishes, confusions and struggles. Many don't understand how to navigate the medical labyrinth or why there isn't a "spina bifida" doctor. Many are overwhelmed by the number of physicians they see, and they often end up seeking answers from their OBGYN, a physician who specializes in female reproduction, simply because they don't know who else to ask.

There are tons of myths out there. Women have been told that spina bifida is fatal, that it can make a child mute, that it leaves the majority of babies "retarded". There are specifically a lot of misconceptions about hydrocephalus and ventromegaly. Women wonder if their child will need special equipment when they come home from the hospital, when they will be allowed to see/hold their baby, and how soon all their questions will get answered. 
They feel emotions unique to their situation. They feel robbed of what should be a happy time. They feel grief, imagining/wondering if their child is suffering now or will suffer later.  They are angry, frustrated, frighted, changed forever.  And most feel alone through it all.

I have been working very hard to develop an outline for a book that addresses these questions and more. I am finding use for my years in the education field and have designed the book with adult learning principles in mind, ordering the book to present a lot of information without the information seeming like an overwhelming flood of clinical mumbo jumbo. I have spoken with a friend of mine, a board certified neurologist, who has agreed to be interviewed for one of the opening chapters discussing the technicalities of what spina bifida is.  If the book proposal is accepted and the publisher is interested, then I will begin getting interviews from parents and adults for other chapters. There is nothing like "hearing it from somebody who has been there".

I am also doing research in the field for new scholarly studies done since 1999...on subjects ranging from Folic acid, to the MTRFR gene, the MOMS study, advances in the treatment of hydrocephalus, and even how having a special needs child can impact your marriage.  I have no idea ifthe publisher will feel my idea will be marketable, perhaps it is too much of a "niche"...but I am pretty proud of myself for the work I have put in and I hope that I get the "go ahead" to complete the project