Thursday, October 27, 2011


It's Spina Bifida awareness month.

Many of us parents have been fortunate enough to find each other on line after learning there was something "wrong" with our babies. We desperately search out more information and we have been blessed to find each other. But more and more lately we are learning of people who didn't find us first, who only heard outdated or false information about children born with Spina Bifida and they make life altering decisions based on this.

I hear these stories over and over and its heart wrenching. What if I didn't have my faith? What if I believed all of those "predictions" told to me by all the professionals with "MD" after their names? Would I have "spared" my son, and the world of him? I can't imagine a world without him in it!

I wish my voice was louder, to scream from the roof-tops so any parent hearing those first words wouldn't feel so alone. They would instead maybe think "okay, I've heard of Spina Bifida, I've seen pictures, heard stories of incredible people living very full lives and I think we can do this". or at the very least, "lets get more information."

Collectively us as parents, grandparents, aunts, uncles, friends, we can DO something to spread awareness, educate. I will use what resources I have to these means. blogging, facebook, conversations at playgrounds, doctors offices. I ask that any one reading please do the same.

Another incredible mother summed it up so well:

"Spina Bifida shouldn't be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears "I'm so sorry -there is something wrong - your baby has Spina Bifida" feels those things. Every pregnant mother who is left with the decision on whether or not to terminate her pregnancy based on a horrifying description of the "poor quality of life" their child will have - feels those things. And it's not only because we are overwhelmed with a diagnosis we didn't expect - it's because we are UNAWARE. We are uneducated, unprepared, unaware of what Spina Bifida really is. What it looks like. What it means for our children. What it means for our futures. We overlook what it CAN be because of what we FEAR it to be. Don't let Spina Bifida continue to be like a ghost in the shadows - shine the light on Spina Bifida. Be aware of the research surrounding it, the miracles born with it, the people who live with it, and the many who strive to REDEFINE it." -Joanna Penny

Alex is being featured in several blogs and articles. Check him out as well as some other very inspiring people!!!

1 comment:

Jill said...

He makes such a good Special Feature topic. ;)